BabyWhispererForums.com
EAT => Food Allergies => Topic started by: Ennypen on March 27, 2008, 09:47:50 am
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continued from babywhispererforums.com/index.php?topic=66236.435
http://babywhispererforums.com/index.php?topic=139773.0
http://babywhispererforums.com/index.php?topic=74496.0
http://babywhispererforums.com/index.php?topic=127677.0
****Check out the links above for some GREAT information, they are no longer stickied, but the link will take you right there!****** Tari :-*
Milk and/or soy protein intolerance (MSPI) describes a reaction to the PROTEINS (not lactose sugar) in milk and soy which damage the inside lining of the intestinal tract. The cause of this problem is not fully understood. Your child may be born with this intolerance or may aquire it later. It is also not the same thing as lactose intolerance in adults which is simply the inability to digest milk sugar (lactose) due to an enzyme deficiency. Babies with MSPI may also have a secondary intolerance to milk sugar as a result of intestinal damage already present. This intolerance to milk and soy PROTEIN is inhibited by a change in the cells or the gastrointestinal tract. Your child will probably outgrow this problem by late infancy or during the second year of life.
MSPI is diagnosed by a detailed history. Your child will be exhibiting one or more of the following symptoms: bloody stools, diarrhea with water loss, constipation, irritability (putting it mildly), weight loss or failure to gain, vomiting, appearing to be hungry all the time or refusal to eat at all. Eczema may also be the only symptom that a lot of kids with MSPI have. The doctor will question you as to the types of formula, if any, your infant has been on and how they reacted to each one. A description of the child's bowel movements is necessary. The doctor may elect to do an endoscopic examination. During this procedure, the doctor uses a lighted instrument to look into the small bowel and/or rectum. Damage (called colitis) is present if the lining is red, inflamed, or bleeding. Inflammatory changes may be noted on tissue samples obtained during this test. Less invasive testing can be done by obtaining a stool sample card to check for blood. It is the combination of the colitis with some of the symptoms listed previously which confirm the diagnosis of MSPI.
The treatment for MSPI is the removal of the offending milk and soy proteins when diagnosed. When diagnosed, most infants need to be on a strict milk and soy free diet until they are 9 to 24 months old. The best treatment is for mother to breastfeed and eliminate the proteins from her diet. Formulas which contain predigested proteins, such as Nutramigen, Alimentum, Pregestimil, Neocate, Tolerex, Vivonex Pediatric, or 3232A are utilized. (Approx 50% of these infants can tolerate one of these formulas. http://www.nutramed.com/digestion/ )
It is recommended that solid foods be delayed until the infant is 6 months old.
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Helen. thank you for locking the old thread and starting this new one. It was on my to do list today.
Kelly
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Hello,
Well, it seems he does have silent reflux as well as milk intolerance. I haven't had it diagnosed yet, but thanks to a chat with a health visitor the other day, who said it in passing (I hadn't read your posts at that stage), I started observing much more closely when he was distressed, etc.
I had suspected when he was first born that he had reflux because he was doing some spectacular vomits and squirmed loads when I was feeding him, in addition to finding it hard to sleep soundly (or at all sometimes), but was told on two separate occasions by health visitors that it wasn't that, either because it was "very rare" or that he was "just eating too much". Because of that, I just dismissed it as a possibility.
He shows all the classic signs - constant crying, really bad sleeping during the day (often as short as 5 mins), back arching, neck craning to the side, coming off the breast and crying, yet obviously wanting more, screaming blue murder when I put him in his cot or lay him down for nappy change... Now that I'm listening out, I can even hear the acid coming up his throat.
It just seems so obvious now and I just wish I'd stuck to my guns earlier on and saved him (and us) an awful lot of pain. I might not have twigged about the milk intolerance early on, but we could at least have made his life a bit easier. At least now I know what's going on i can try and do something about it - I'm so relieved.
I now need to try him on infant Gaviscon and, if needed, Renitidine and try and stabilise his condition, then I might even find that he can tolerate the formulas. Any other suggestions/hints about making him more comfortable, except obvious ones of tipping up the cot and keeping him upright after feeds that you might have would be really appreciated.
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I saw your post under reflux. How old is your baby? You may have posted, but I can't find it. Also, mine had silent reflux and you described it perfectly with the gurgle acid that you can hear. The arching and the pulling off is right on. I'm sure the meds will kick in if they haven't already. One thing you should make sure of is that your diet is clean of all dairy and you may try soy just for good measure. I found out that my ds was intolerant to both. I lived happily on rice, beans avocado and chix for 10 mo. The sleeping was never great until he really hit 1yr so don't look for predictability. Just try to manage what works for you both. I had a text book dd #1 and she was on EASY and sleeping thru at 3 m. My #2 child had these issues and I just had to hold him for naps sometimes. At the time I was frustrated because I thought it would really move him far from being an independent sleeper. That was wrong on my part. He's a champ for sleep now. He was just miserable for so long. You will be amazed at his transformation. Just take each day as it comes. Love, Ashley
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Thanks again Ashley. He's nearly 8 months.
Medication not really working - ranitidine and domperidone seem to be making him worse if anything. Am going to try to push for a PPI drug. Now that things have got so bad, I kinda realise that him not being on a routine is the least of my worries, but I'm also with you now on the idea that once we get things sorted out (please let it be soon - I'm not sure how much longer I can handle seeing him in so much pain), he'll sleep pretty well. The few times we've had when he's not been suffering as much, he's pretty good at getting himself off to sleep and staying that way, although I have sneaking suspicion he's an early riser by nature. Boo!
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Hi there everyone! i've just found this thread and wanted to know if anyone has an experience of their lo growing out of mspi? My dd(6mos) has had trouble with my drinking milk, eating cheese, etc... since she was small. A girl on another board i'm on said her dd had similar prob and that now she's fine...I don't know how profound the problem is, but i do know that i don't have to read every label--she handles most things with milk in them but really gets grumpy if i have cheese or if i drink cow's milk
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does anyone know what brands int he US of butter or margarine don't have milk or soy? I thought smart choice or whatever it is called didn't but I looked and it had soybean oil. also bread without those. I am thinking I will have to make my own, but if I could buy some that woudl be great too.
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I am from the UK so have no personal experience of products in the US. I do believe from memory though that spectrum organics is dairy and soy free aswell as Fleishmann's light soft spread (tub variety only). I hope this is of some help, please do check ingredients first.
Kelly
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Melissa, I don't know of any margarines that don't contain soybean oil or dairy... what are you trying to cook, maybe we can find a different substitute? For example, for sauteeing you can use olive oil, for baking many times you can use canola oil. For frostings I have had success with coconut oil. Do you know if Crisco is canola or soy? that might be an option in a pinch. I do not use margarine at all anymore.
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Stacy--for a bar cookie sort of recipe that calls for butter, do you think that canola oil would work?
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Nope, I have not been able to find a good sub for cookies. If you can do lecithin, try looking for Nucoa margarine. That is one that I have used. Fleishman's Light was an option I think, but it is getting harder to find.
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Thanks Stacy--that's what I've been using. :) I just hate that it has so much transfat in it and was hoping to switch to a healthier form of fat iykwim. :)
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I made chocolate chip cookies last night with the canola oil. DH wants me to make some with regular chocolate chips because he likes how soft they are. thanks for the info on that bethany. how is everything going for you? has the soy free helped at all?
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I think it's helping. Friday morning I accidently ate some waffles with a tiny amount of milk in it and Saturday for the first time in a while DD had a huge spit up. Her spit up still doesn't seem to upset her, but it seems like more than a coincidence that it happened within 24 hours of my ingesting milk. I have been off soy now too and I'm not sure that I notice a difference.
Mel--are you doing soy bean oil and lecithin now?
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not yet. she has been seeming to be a little bit worse. crying more when laying down and things like that. the GI specialist said that reflux peaks at 3 months so I figure that is what is happening. so I decided to wait until she seems a little happier to try it a again. It is hard but I'm more used to it now. I think it will be so nice to add those things back in though.
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Hi all, I'm glad I found this thread. DS is having so many of the same problems. He's 7 wks now, at 3 weeks, I took him in because I suspected silent reflux. Dr. put him on zantac. It didn't work so then we tried prevacid. Seemed to work OK for a while, but he was becoming more and more uncomfortable and had developed a nasty rash on his face along with green stools. Dr. suspected mspi and put me on the diet. I have been milk and soy free for about a week and have already noticed a difference. His rash is clearing, stools are more yellow and his skin isn't as oily. However, he is still having a terrible time sleeping, especially during the day. It is now 1pm here and he has only slept 1/2 hour all day. :( He is so tired, has bags under his eyes. I'm suspecting the reflux is still the culprit because I can still hear him swallowing after he burps and then he fusses. His Dr. told me I could keep giving the prevacid if I wanted to,if I thought it was helping. I really don't think its doing much for him and am thinking of trying to get him on something else. Does anyone know if the reflux eventually clears with the diet changes? Or will it continue to get worse as he approaches the 3/4mo age? Thanks for any help.
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Just also came on this thread. I am mixed between if dd has silent reflux or mpi. She does the arching her back, goes rigid and straightens her legs. She screams ear deafning screams. Then she'd calm and all of a sudden arch again and scream. She does have a lot of gass too. When touch her belly or try to lift her legs a bit she'll scream even louder! Tried LF formula but so far no good. Screamed twice today after 2 feeds. We got gaviscon and had it in her formula but she still screamed. ds had projectile reflux and it worked with him.Now thinking if she's got some protien sensitivity too, causing all the gass.
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Could be possible, how old is your lo now?
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she is 3 mths old. After every feed she'll be cranky. She has a burp (or two). Sometimes its just a sllepy cranky but most times she screams and goes rigid and arches her back. cant get her to sit (any pressure on her tummy) or shell scream.
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I would bring this up to the doctor as a possibility. I'm not sure if you can get the special formula without a prescription where you are. But if I were you I'd try everything to solve this problem, especially where it seems she is suffering, poor thing. I was in your situation and I kept pushing the doctors, finally I had to get a new one, but it's all worked out now. I would definitely look into that with your doctor or if you can try the special formula too.
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I am going to buy her a tin of nutramigen and see how she does. If she improves and has less gass and fussiness then I am going to go to doctor and get it on prescription. It cant hurt to try it can it?Its just as good as normal formula, just might do her better.
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Exactly. And give it some time. For me it took about 3 days and I started to notice changes, but that had to do with his skin, I'm guessing that the gassiness would clear up a lot sooner, though I'm not 100% sure on that. Good luck to you, and I hope it works. I know how frustrating it can be not knowing how to fix things.
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I think with any MSPI stuff you need to give it 2 full weeks before you really assess the results as it can take that long for the proteins to leave your system. :D
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I would agree about at least 2 weeks. Thomas really had changes within a week; by 6 weeks, he was a new kid.
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http://www.cryingoverspiltmilk.co.nz/
I found this website brilliant, my little boy had bad reflux and my doctor recommended this website
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Can you tell me how you get your LOs diagnosed with MPSI? I suspect my lO may be dairy intolerant.
She has reflux which is sort of under control with meds but not completely. She is on gavisocn, omperazole & dom peridone. She also has sandifers. She vomits a lot. She is breastfed and has one bottle of C&G comfort a day which does not seem in itself to make the vomiting any worse
We think that as she was prem part of the top of her tummy is not sealing right - well that's what our peadiatrician says.
However DS (now 2yrs) had reflux too - just the same. He improved a lot on Neocate (elemental milk) at 3 months but was able to tolerate some dairy at 6 months. We gradually introdueced it post 6 months and it;s fine now. He was on normal formula by 9 months.
What's odd is that my OH has just remembered something his mum told him 15 years ago - that she tried him on formula as a baby and he was violently ill. She always ate a low dairy diet anyway and he was ok breastfed. By the time he was a year old he could tolerate some dairy.
Having discussed elimination with my doctor - it has been suggested that I should not do a full elimination diet due to the fact I was very ill when pregnant and 8 weeks on have still not recovered. However I could reduce dairy and see if an improvement is made. The only other option is give up breatsfeeding and moving onto Neocate which I don't want to do.
Is there any other way of knowing if LO is dairy intolerant? We are seeing the doctor again in 2.5 weeks.
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Sounds to me she is more reflux. I was told its hard to diagnose babies with mspi and its a hit and miss thing. If she was LI, more symptoms include excess gass, bloatedness, foamy pooh's/diahrrea, some have eczema. She might not be allergic to dairy, but she might be hypersensitive to it. Babies digestive systems are weak and some struggle to break down lactose in dairy. My dd is not diagnosed with it, but she too has silent reflux and does the arching of her back, screaming and fussiness. During nites she moves around constantly and thruses her head left and right and has lots of gas. She is using lf formula now, and I put colief in the b.milk that i express. It seems to have lessened her gas quite a bit, which makes me wonder if the comfort she was on wasnt causing the gas (as its said to give excess gas, but should be able to release easily)She is less fussy now too and doesnt cry after every feed anymore. I am still on the fence if I am going to try nutramigen and see if it settles her once and for all! But dont want to spend money for nothing.
My ds had projectile vomiting and reflux, and gass too, but as a first time mom I had no idea what is causing it. If I had known, I wouldve definitely tried different formula on him! I am actually quite dissapointed in our medical system as no one even suggested this or seemed to know what could've caused it!
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leycourt--I've read that liquid milk is hardest on LOs with dairy issues, so if you could at least eliminate that it might help. I guess I'm confused why your doctor doesn't want you to try to eliminate dairy--it's really not all that fabulous for us in general. ???
My DD hasn't been properly diagnosed. My doctor did a bit of an ::) when I brought it up, so I went off dairy and soy entirely and have seen a difference. Have also accidently had dairy a couple of times and it has caused problems.
However, from what I've read reflux in breastfed babies often significantly improves or resolves entirely with the elimination of dairy. This has been the case for my LO. She was refluxing milk up into her nose so was constantly congested with milk snot and then she started doing big projectile vomits. Once the milk was out of my system, both of these things quit.
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So, she's been on lf milk and has been doing well for a week or so, last nite ran out of it so decided to use comfort to see how she reacts, and offcourse, had a terrible nite. She wouldnt settle, kept fussing and moving and was crying for about 30 min, settled a bit and whining again. Today in the am gave her another bottle of comfort, she took 2 gulps, cried, i burped her, then tried to give it again, but she refused to take it. So I went to buy lf again, but today it didnt work ??? ???She had accute bouts of gas after her bottles and farted while crying. Naps were very irritable. She'd wake up after 1 hour. Quite fussy and cranky today. So....now definitely going to buy Nutramigen and see if it settles her once and for all. She was doing quite ok during the week she was on lf, not too much fussing and had less gas. Dunno what this gas is all about!!!!She's been ok on expressed b/milk during the week so cant think what this is.
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Just wanted to share, my 2.5 year old can't have dairy and won't drink rice milk, so I've worried about his calcium intake. I've had trouble finding an appropriate supplement for him. Then, at Costco, I spotted a calcium supplement in the form of gummy bears! It's the same company that makes the gummy bear mulitvitamin that he takes. He loves them and they contain no milk or soy and no artificial colors, flavors or perservatives.
They are called L'il Critters Calcium Gummy Bears with vitamin D. Two bears has 200mg of calcium and 200 IU of vitamin D.
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Thanks for sharing Bethany!
I am sure that puts your mind at ease a little bit more.
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so I have success fully put soy back in the diet. she did get a bit more gassy, but still bearable. I started milk about a week ago and the past couple days have been kind of harder then normal. she is spitting up more and crying more when we lay her down. today the only way I could calm her was to feed her. then she fell asleep nursing and then woke up screaming when I layed her in her crib. so, I am not sure what to do about it. could a take a week for something to show up like that? her blood work has come back negative for a milk allergy, but I still wonder.
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So nice that you were able to add soy back in! That makes life easier.
Hmmm . . . I'd be suspicious of the milk. :-\
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Blood allergy tests at 5 months old are pretty inconclusive, fwiw. Too many false negatives and false positives. And even if she is not allergic to a food, doesn't mean that she isn't intolerant or sensitive to it. (Eggs make me terribly sick even though allergy tests say I'm not allergic) I would put much more faith in how she reacts to a food. If you remove it from her diet and she seems happier, then keep it out. If you remove it and it doesn't seem to make a difference, then I would probably keep it in. I always err on the side of caution with elimination though because I worry about their long-term intestinal health. It's much easier for me to not give them something for 6 months now than have them be allergic as an adult, kwim?
5 months old is a tough age, sleep-wise, anyway. Watch her screaming, spitting up, and general unhappiness, plus waking up screaming. (sometimes bad sleep habits emerge that have nothing to do with tummies/gas but more to do with inability to self soothe or put self back to sleep, developmental issues like tingly legs learning to push up and crawl, and other external factors) I would also evaluate for reflux or adjust meds if she is already on them.
Continue to research the safety of soy. If it is the only alternative nutrition, then I would use it. There are too many reports of hormonal danger using soy that I don't feel safe with it, and our family does not consume it at all. I would use soy before I'd use a hydrolyzed corn formula... I would also consider a goat's milk if it's available. Fortunately there are so many more options for intolerant and allergic babies now.
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Dd has been doing ok, but lately things have been crap again. She was on the lf for 2 weeks and did get a bit better, then switched back to normal cow and gate (she was on comfort before)and seem to handle it ok. But this last week or so has been terrible again. Very cranky and gassy. I would've thought it would go away now that she's 4 months old, but she still struggles with this. She just had 40ml of mixed b/milk and formula and has been screaming, face all red and fists clenched. Draped her over my legs on her tummy and she's now fallen asleep. Even got dr brown bottles which is suppose to reduce the amount of air they swallow. She probably just is a windy, gassy baby.. :(
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if they grow out of it, it can take up to 2 years for that to happen.
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i agree. The milk sounds not so promising. I would back off and give the soy more time. Our GI told us that it can take up to 6-8 weeks for the slow onset intolerance to take full effect and by then it takes just as long to rid the body of the offending stuff. They told me if I re-trial again that I should wait 3-6 months in between soy and milk.
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Bethany - I need to find those where I live. My little guy is in the same boat and will not touch either rice or almond or hemp milk with a ten foot pole. He says "no milk", not that I blame him. I have tried every single Calcium supplement that is safe for him out there with no luck. He does take 2 of the multi-gummy vites every day and that is all he will take. I saw the sugar coated ones at our Target, but he does not like those. Are they plain?
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No, the calcium bears sort of have a little sugar on the outside. :-\ They're really yummy though. DS also drinks calcium fortified orange juice.
So I went off dairy and soy because my newborn was refluxing milk up her nose. I've accidently had dairy once or twice and it's clearly affected her--disrupts her night sleep and causes her to reflux milk up out her nose. I'm toying with trying to reintroduce soy to my diet, but I'm not sure I should.
DS 1 is 2.5 and VERY sensitive to diary, but seems fine with soy.
What do you all think? Worth trying?
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So i've read that swallowing air (while feeding)is rarely the culprit of giving painfull gas to babies, as the air usually will come up or pass easy. Ashleigh b/feeds in the early am's if she wakes and I dont burp her after that as she usually falls asleep again. But she ALWAYS wakes in the morning from gas, and its always after having breast, never before.Squarming and thrashing around to try and fart. So I lift her legs and she farts like an adult!! Loud, big ones! A couple of times before its all eliminated. And sometimes they sound 'wet' and I'd think she's pooped but nothing. One nite she slept thru from 11pm till 8am, without having breast and she literrally slept like a newborn baby. Then, during the day she'll have sessions where she will be gassy and uncomfortable and moaning. I still burp her after feeds in the day as she still needs it with her being so gassy.She has improved since she was about 1 mth old, but its not gone yet. She does fart almost all day, sometimes just easy and spontaniously, and sometimes screaming and very upset.
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Hi everyone! So glad to find this thread! Please Help! lol
My LO has been informally diagnosed w/MSPI (and also may have wheat, egg, and nut sensitivies :o). I've spoken to lactaction consultants and my ped, and they are almost positive about the MPI and as I was allergic to everything except soy formula for 2 years (then I could have anything) they want me to be careful and eliminate all of those things from my diet right now (dd2 is bf, and on occasion we use a couple of ounces of Alimentum).
My questions:
1- I've read and printed the cheat sheet from kellymom about hidden dairy, one of the items listed says caseinates (magnesium, etc etc and sodium). Does this mean that if it says just sodium on the label it can have hidden dairy? or does it have to say sodium casseinate?
2- Both my LC and Ped has urged me to keep giving an ounce or two of the Aliementum every couple of days to rule out an intolerance to that. For various reasons I may need to eventually stop BF'ing and they want to make sure LO can tolerate the formula. Anyone have any success/issues with this type of formula? I've heard of the Neocate and other prescription formulas - are those better? I'm pretty clueless about formula.
3- Last night my dd had a minor reaction (blood and mucous in her stool, cranky for a few hours, a few bumps broke out on her face). I have eliminated virtually everything for almost a week for a two week trial and am living off of avocados, oatmeal, organic chicken and organic beef (I am highly anemic and have had beef pretty much every day of her life, don't think that's an issue?). My ped said that it could just be from the milk protein still in her system, and to give it the full two weeks. Is this what your experience has been, or is that indicative that something that day or the night before set her off? I really would be at a loss. A week ago I had several fig newtons that had whey in them, along w/lots of bread (with hidden milk) so that's what my ped is saying needs to get out of my system....just looking for some advice/reassurance from mamas who have been there.
4 There is a lunch meat that I have bought from whole foods, it says that it is gluten and casein free (it's the smoked chicken breast). Does that mean I am in the clear? There are very few ingredients in it, so I'm hoping!
Oh, lastly - any wine or beer that is approved? :o ;D Haven't had a glass of either in almost a year - but don't know if it's possible?
This is rambly - sorry! I truly appreciate any information anyone can give me.
Thank you!
Tari
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oh, ps - the last time we gave dd any of the alimentum was 4 nights ago....it was about an ounce...
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Hi Tari:
I know it has to be so hard to avoid everything in your diet. I really admire people that can do it, I never could cut that many things out of my diet to continue BF, so way to go!!
1.) I am pretty sure it mean sodium casenaite. Here is a link I found www.webmd.com/allergies/guide/milk-allergy
2.) Alimentum formula, is milk based, but the proteins have been broken down so much that it rarely causes an allergic reaction or an intolerance.
- Are you using the powder or the ready to feed? The powder form has corn syrup solids in it, which some little ones can react to. Alimentum Ready to Feed is the only formula that does not contain corn syrup solids. Also it is a bit thicker and easier for little one's with reflux.
- Neocate is an amino acid based formula. No soy, dairy, nothing in it. It has all the essential amino acids that are found in a complete protein (such as dairy). In some cases, babies still react to the hypoallergenic formula's such as Alimentum and need to go on Neocate.
Are you in the US? In the US, you do not need a prescription for it. You can get your pharmacy to order it or order yourself online. There is actually a pharmacy where i live, that stocks Neocate. I know Canada and elsewhere, you do need a prescription for it.
3.) It can take 2 weeks or even longer for their body to get rid of milk/soy proteins and for the body to heal. Personally I think it is odd, that she would have just now had blood and mucus in her poop though from a week ago.
- Is she constipated at all? Does she strain a lot when going? My son had blood in his poop and they told me it was from an anal fissure, from straining so hard.
4.) What are the ingredients in the lunch meat? I still read ingredients very closely, even if they say gluten or casein free. Casein is just one form of dairy.
5.) If you have to avoid wheat, I don't think you can have any beer, BUT if you do drink, you would pump and discard that milk anyhow.
I think wine would be okay.
Hope this helps some. Oh by the way, was the blood bright red or black?
Hugs to you, Wendy
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Oh my goodness, Wendy, thank you so much for your response! :'( I'm almost tearing up with relief hearing from you. Thank you thank you. :-*
The blood is black; black specks, that's all we've ever seen, never the bright red. Oh, and I just gave up wheat on Monday, also just stopped eating potato chips which I thought were ok, but actually I think is only gluten free - I stopped those on Tuesday I believe.
The ingredients for the chicken is organic chicken breast, water, sodium lactate (from beets), organic honey, sea salt, organic potato starch, carrageenan (from seaweed).
Yes, I'm in the US. I have thought of just going straight to Neocate for peace of mind, but may try the ready to feed (we're using the powder right now).
eta: no, she does not appear to be constipated and doesn't strain when she poops. thanks again
This is so overwhelming, I'm trying my best but find myself so nervous about eating anything. Again - thank you SO much for your responses...
xoxo
Tari
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Do you have to pay for the Alimentum?
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Yes, we have to pay for the Alimentum...it's pricey!
We got the Alimentum rtf the other day, gave her an ounce last night and probably another ounce or so tonight - keeping our fingers crossed!
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Let us know how it goes!
I'm curious, how much does that stuff cost in the US? Here, Canada, I see it is about $55 for a case of ready to feed, 8 oz cans, 24 cans.
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Hi Tari:
Sorry I did not respond earlier. How is is going? I really am hoping that this will work.
Black specks in the poop is not a good sign. Black poop means that it is more internal, then just an anal fissure or something. It also indicates old blood.
Can you get into the Ped. to have a stool test done. They will do an anal exam and get some of the poop and put it on a card to see if it is actually blood.
If you don't see improvment, I would try Neocate. That is what I did.
Melanie: Alimentum RTF comes in a 32 oz. bottle and it is right at $10.00. The can is $26.00 a can.
When Tyler was on Alimentum, he went through one bottle (and a little more) in one day. It was costing us $80.00 a week for his formula.
Please let me know what happens.
P.S: Just another thought. I have found out that I am allergic to potato's and my son has an intolerance to them. I never ever thought it was a common allergy or intolerance. I noticed the lunch meat had potato in it. If things don't improve, you could try removing potato's.
HUGE HUGE HUGS!! Wendy
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Tari, so how is everything going with the Alimentum? I hope it is going well.
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Hi Melanie - well, we only gave the one ounce a couple of nights ago because she ended up not taking any and then our rtf had to be thrown out, etc etc, but plan to try some tonight. No huge side effects at this time, thank goodness, thank you for asking! :-* We may be switching to Nutramigen though as our ped said that he likes it better and has seen great success with it (he also gave us 2 big cans of powder to use, so we have to think about it). Is your LO on hypoallengenic formula? Did you have success? It's all so nervewracking.
Wendy - thanks so much for the reply. DD was doing great, eating, sleeping, etc wonderfully and then had a fussy night last night and this morning had what looked like black blood in her diaper. I was SO upset - rushed her to the ped, he said it looked normal, but did a test to check and....it wasn't blood! YAY! I was SOOOO relieved. He said she is doing great and could just be the last of it getting out of her system, or the ALimentum since she usually has BM, or a host of little other 7 week old things that are completely normal and to remember aside from any intolerances/allergies her digestive system is just started to mature. She hadn't pooped in a while and after that one she seemed so happy - so who knows. Funny you mention the potatos - I saw your thread on that and immediately took them out of my diet.....along w/the lunchmeat. Ped said that to introduce wheat in the next couple of weeks, about 2 weeks after I start (if I do) the Nutramagin.
This is all so confusing still but thank goodness for this board you experienced mama's. I read a very distressging article about how it's almost cruel to keep breastfeeding allergic infants as the trial and error impacts them the hardest, :'(, I was devastated - but my awesome ped said that's cra* and we're doing great.
Thanks again ladies for your responses and interest, makes me feel not quite so overwhelmed.
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Tari, I'm glad you guys are doing better! And yes it took me almost a year before a doctor would listen to me, but once I put him on Rice milk and all his symptoms cleared up my NEW doctor praised me. I finally got a prescription. I tried Alimentum, but my son's symptoms came back and so I had to try Neocate, and it's working like a dream. I'm thankful the government pays for it here in Canada, I looked online out of curiousity and one case of that stuff would cost $90 Canadian, and that would probably only last me 1.5 weeks. I think in the US there is a way to get your insurance to pay for all or most of it.
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Wow - almost a year before a dr would listen to you?! That's terrible - poor you and poor DS. That must have been very tough. Excellent job advocating for yourself though - mommy's gut instict is rarely wrong....That's awesome the gov't pays for the Neocate, I've heard it is really good. Here it costs $150 for a small little tin (I called the pharmacy to ask because I was going to trial it (we don't need a prescription here) on my own even though my ped said he wouldn't recommend it just yet) - yikes! I've heard some insurance companies will cover it, but it's hit or miss here w/our insurance companies >:( . How is your LO now? Was it hard introducing solids? That scares me...
So, I am going to have grapes on Monday. ;D It's on the low allergen spectrum and honestly I'm about to lose my mind on my steak/chicken/avocado/oatmeal diet, lol. I'm really nervous, but will just have a few and go from there.
Anybody ever hear that table salt may have soy somewhere in the processing? Crazy.....sea salt is recommended instead. Learning so much!
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Wow, I had no idea about soy in salt, that is crazy. I find most of the foods in the organic section have sea salt and no additives. Thank goodness for the organic section of my grocery store, I never shopped there EVER before, but it's a life saver.
Introducing solids was a nightmare. I started him on oatmeal, I figured he'd like it over rice cereal as my daughter did. 2 hours later he was vomiting like crazy, over and over, he was cold, pale, sweaty, lethargic, and then the nasty diarrhea hit. He had the same reaction with barley cereal. He wouldn't even open his mouth for the rice cereal, so I had to put it in his bottle, Ped told me this. I accidentally gave him oat bran in some baby food mixture about 2 months later, and we had a repeat of the terribleness. With wheat, egg whites, and beef he does NOT vomit, but he gets hot, sweaty, nasttyyy diarrhea, and then his eczema starts to come back. This is why I believe the Alimentum did not work for him, as it 'appears' he may have Multiple Food Protein Intolerances, and for this Neocate works best. I say "appears" because my appt to FINALLY see an allergist at the huge children's hospital in Canada is not for another few weeks. My son is one of two babies on Neocate in my province, very rare. I'm still learning and trying new foods, I know there is more out there that can cause problems.
You are amazing for being able to stick so far to this diet, it would drive me mad! I hope your little one gets better, and gets proper treatment right away. I know how horrible of a feeling it is to watch them suffer so much.
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We bought Alimentum on e-bay. It was much cheaper (even with shipping) and safe as long as it hasn't been opened and isn't expired.
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Tari: Checking in on you to see how things are going.
Wendy
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Hi Wendy - thanks for checking in w/me! :-* Well, I hesitate to say it as I'm afraid the allergy gods will punish me for it ;) but things are going really well. I introduced rice, but there seemed to be a reaction - however it could have been the start of a cold, either way I cut it out. I also introduced apple a few days ago and so far so good. She is a totally different baby - such an angel. For the first time since she was a few weeks old she is waking up happy again, it's so wonderful. Her eating has improved as has her sleep.
I still have anxiety dreams several times a week though - they are so freaky. Where I dream I have eaten some ice cream, or cake or something and then realize what I've done and am soooo upset. Otherwise, she is just so happy and fun and cooing and giggling and "talking" - it's a joy to have my baby back. I'm nervous about introducing more food, and plan to do it just once a week, or every other week. We'll see.
Oh - this is interesting - we took Scarlett to the pumpkin patch a couple of weeks ago and she went and played in all the hay. Well, I had to brush the hay off of her tights and then touched Gwynnie and she immediately broke out in a terrible rash - it was pretty scary. So looks like we have environmental allergies as well :( We'll get through it though. I'm crazy about everyone washing hands, takin shoes off, etc etc and it's slowly becoming habit. When she's older I will take her to an allergist, but in the meantime will try not to get too overwhelmed.
Gotta run and feed little bub. Thanks again for checking in. Hope you are doing well! Spectra - how are you?
xoxo
Tari
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I'm glad you guys are doing better!
I'm doing better now that I have more answers. It's a bit long to write out again, so here is the link to my other post about the results of the allergy tests and such. http://babywhispererforums.com/index.php?topic=136226.0
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hi ladies, i'm responding to some older posts that had questions about fats. i wanted to mention that if you buy butter in a bar it's almost always 100 percent pure. but almost every butter or spread product in a round container or anything labeled a spread, is most likely mixed with oils of various kinds as well as water and chemicals and should be avoided. every health guru i have ever read says that margarine is one of the most unhealthy fats on the market. i bake bread and cookies all the time and i don't use shortening or margarine and sometimes use butter. most of the time i use canola oil, xv olive oil, or grapeseed oil. it's true that olive oil has a stronger taste but you don't taste it in the cookies, but olive oil is not supposed to be heated over certain temperatures to retain its health benefits. grapeseed (very healthy but also expensive) and canola can tolerate heat. i must say, i've had fantastic experience with using oils in baking, but i think the secret is not to put in such large quantities. i often use only one tablespoon or a little more per every cup of flour. this makes a nice chewy cookie. but it's harder to make crisp cookies like this. an extra egg white can also make products moister and replace extra fats.
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Thanks for the great info.
I have been told that margarine is also really bad for you, but that Smart Balance in the tub is 0 trans fat and is a great alternative.
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I love the taste of real butter!
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there is a dr mercola and some people who he does research with (including sally fallon, who someone started a post about) who advocate adding raw, organic butter and cream into the diet, so apparantly not everyone believes it is bad for you. ever since i read that, i am all over butter!
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But you're not saying butter is ok for those intolerant of dairy, are you?
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I think that I heard someone say that about butter...they were reading the pH diet book, I think.
Hi, I'm new here! I think my 6 week old baby has some intolerances. His symptoms are/were green stools, diarrhea, fussy, red cheeks, gas, spitty... He is on breastmilk and Alimentum rtf at night. I started avoiding dairy several days ago and soy for a couple of days now. Do things usually get worse before they get better? I think I will take out eggs too...
I would love a small list of convenience foods that are safe (not necessarily fast food, but just things I can get at the grocery store that are good for snax and quick meals). I feel like I am starving all of the time, and that there is nothing I can eat!
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Welcome steph!!!!! I'm glad posted on here!
I would wait 2 weeks before making any judgments. you will still have milk protein in your BM so things being worse or the same doesn't surprise me.
I love peanut butter, the only kind that I found without soybean oil was adams naturals. I would toast a piece f bread and put that or jelly on it. if you have a trader joes by you they have some great treats. chips, pretzles and things like that which have no dairy or soy. I'll keep thinking of others for you.
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I think I am going to have to go total elimination diet. I was trying not to go there, but Bennett is feeling really bad.
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poor bennett, what are you eating as of now?
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I am just eating chicken, turkey, albacore tuna, steak
green beans, peas, spinach, carrots, white and sweet potatoes, squash (all varieties), corn
apples, pears, bananas, avacodos
safe flour tortillas, corn chips, pretzels, crackers
hummus
rice dream and safe cereals (kix, cheerios, rice chex)
chamolmile tea and decaf coffee w/sugar
and I am sure there are a few other things, but they are all soy and dairy free and are not "fuss foods"
He is doing a bit better now.
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i read soybean oil was ok am i wrong?
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Soy oil (and lecithin) contain very little protein so are usually safe for most people w/a soy allergy.
But both of these ingredients have been known to cause allergic reactions in rare instances.
If you have an allergist you can speak to him/her and see what he recommends based on the severity of the allergy, or avoid them completely.
Honestly, in regards to a BF'ing mom who is eliminating foods for their LOs allergy, the oil and lecithin should be no issue.
hth!
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thank god its in everything! lol we just found out DD is MSPI...i knew something was wrong and her doc wasnt listening to me so i demanded a stool sample and they found blood...go figure...ive only been on this diet for one day...
she was diagnosed reflux but now im wondering if she ever had it or if it was this. ???
shes spitting up sooooooo badly its scary and the past few days shes been hysterical most of the time...
when i lie her down she screams...does that happen to any of your babies? she also spit up pedialyte...im wondering if it is the reflux buggin her too...her doc insists its not but im skeptical...
she seems to be in ALOT of pain is there anything i can do for her? yesterday she was sound asleep at 5am was hysterically screaming with no warning just silence to shreiking...im really worried.
whats all this about organic butter? it has cream in it...i have some but figured i cant eat it...
a great alternative for butter that tastes better and is more natural than the stuff at the supermarket for mspi is olive oil...just put it in a glass container with a little sea salt and freeze it covered. it tastes like butter and spreads like it. its really good
im wondering about terriyaki sauce too... love it i know its made with soybeans that they brew but do you think it has the protein in it?
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also all dietz and watson deli meats are milk and soy free. if i ask them to slice it on a clean slicer you think thats alright? oh and btw all the flieschmann's margarines and butters arent milk and soy free where i am so make sure you read the label
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sorry for posting again but also my LO isnt eating well and crying at the breast is that mspi related? its been 4 hours since she ate last and i tried to feed her and only got her to eat for 10 mins (broken up) on one breast...idk if this is just from the mspi or if something else may be going on. i keep callin her doc and no one is calling me back so im really worried. any advice would b appreciated thank you!
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big ((hugs)).
As far as crying at the breast - my DD2 did that...they start to associate feeding w/pain. So we had to take it very slow. Once they start feeling better it gets easier. For now try to feed her at incline, I would even almost have DD2 sitting up, and also feed for a little, try to burp, speak calmly, etc. It actually helped us quite a bit.
As far as laying them down and crying - yes, my DD2 did this as well, and especially if they have reflux it will be painful for them to lie flat. You can elevate the mattress so that she is at an incline, that should help - I actually started DD2 tummy sleeping - but that is a very controversial decison...I got the OK from our ped GI dr.
I would not do deli meats, even if they are soy free they may/probably have caseins (milk derivative) in them, and also you can never be sure the slicer is completely clean unless it's in your own home. I would just make a beef roast, or turkey or chicken roast and slice myself. Yes - good catch on the margarines, many (most have soy or milk in it).
For now I would leave the terriaki sauce alone.
I'm sorry she woke up screaming this morning :( DD2 would do that too - the abdominal cramping and passing stools can be very very painful. Honestly, I threw EASY out the window during this time and did whatever she needed. Alot of comfort nursing and snoozing together in our rocker, and lots of times the only way she would go to sleep, or back to sleep was in bed with me. I went with it because I needed to get sleep, our whole family did. We eventually got back to EASY once she was feeling better it just took a few days of being consistent again.
Big big (((hugs)))). It is so worrisome when they are hurting. :'( I'm so sorry you are not hearing back from your dr - I hope you hear back very soon. Keep coming here, and we'll help as much as we can.
:-* :-*
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oh, about the butter - butter doesn't contain milk solids, so many milk allergic/intolerant people can tolerate it, especially cooked in recipes,
However, I would not use it for awhile. Not until her gut has healed and the elimination diet is under control. It might be one of the first things your reintroduce, but personally I'd wait.
hth
:-*
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oh ok cool about the butter lol
yeah i think we are throwing easy out the window too...seems to be going that way her mattress is inclined btw. i try and try and try to burp her and never seem to get a burp...
we ended up going to the docs today b/c she wasnt eating hardly and shes been spitting up 1-7times after a feed. the doctor said it seems like her symptoms are severe and getting worse but her weight loss wasnt bad only 3 oz. to me im freaking out shes loosing weight?! but ive been feeding her every 2-3 hours! but w/e
the doc said she doesnt know whats wrong but a possible organ problem may be causing all the spit up...i forget the word she used...so she will be having an upper GI tract x-ray. she has to drink some stuff and do it but that wont be for at least a few days and her appt with the GI specialist isnt for 10 days! so apparently my baby will just be in pain until then...i feel like they dont even care! they took blood and urine too...i got mad b/c she uses the potty at home (we EC pt) so i asked if i could jut have her pee in a cup and she said no. i didnt think to put up a fight about it b/c i figured there must be medical reasons behind it but then i thought if she were older they wouldnt cath her so wtfudge? is there a medical reason to have cathed her and make her go through the pain and screaming that came with it or was she just being a jerk? my baby will potty on cue as long as she has to potty..all i did was ask if we could try it first and she looked at me like i was nuts and flat out said no. im wondering if i just need a new doctor all together....
and EVERYONE keeps telling me oh just give her formula ya know you did your best with the breastfeeding and blah blah blah. you all get that alot? i say tell them ive sacrificed everything for her so far why should i stop now? lol besides i plan to breastfeed until shes 3 or she weans herself
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Actually butter does contain up to 20% milk solids, but some BF babies can tolerate their mums having small amounts. Ghee/ clarified butter has most of the milk solids removed, so only a very sensitive baby would react to the tiny amounts coming through breastmilk. Ghee is a lot more expensive than butter though and has a different taste.
It can take 2-4 weeks fro their guts to heal so you might have to be very patient i nthe meantime. Has the doc given you any meds to ease the pain?
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he gave her gaviscon prn up to 3x a day...idk how much it helped...its hard b/c her reflux is acting up too. but today was amazing! i had my old baby back for the most part and im really starting to hope!
im not risking anything no butter for me lol
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That's wonderful!! I hope it continues!
Actually butter does contain up to 20% milk solids
Interesting, I didn't know that and had been told differently...thanks for the clarification (pardon the pun..) ;)
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Unless butter is different here in Oz?
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Not sure - but it makes sense there are different ways of producing it. I never took the risk to try it until much much much later - way too paranoid.
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Thanks for clarifying that! I never had it until after he was 12 months old too.
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hi there
I am baaack; unfortunately! I discovered this site & helpful thread with DS1 in '06, now DS2, breastfed & 3 months old, has tummy issues too, so here I am. I was anticipating troubles and knew what to look for (mucousy, green poops) and when I saw some mucous I cut out dairy. Then eggs (DS1 was fine with soy but intolerant to dairy & egg); later tested both and they were definitely a problem. I wasn't using much soy but thought it would be safe since DS1 was fine with it. Well, after a sushi night with tons of tofu products (inari, edamame, miso soup) DS2 had a REALLY bad reaction, so I cut out soy completely.
Here's the weird part: for about 2 months,his poops have smelled strongly of vinegar. My pedi wasn't concerned (but I'm not sure how much weight he's giving to the whole MSPI thing anyways) but I was certain it wasn't normal. Well, I've been eating a LOT of peanut butter to make up for fat & protein, and remember reading somewhere that peanuts can be an issue for soy-allergic folks because they're both legumes. 3 days after cutting the peanut out, his poos smell like normal baby poops! yay! But he never reacted as far as mucousy poos go... Anyways, I can totally sub sunflower or almond butter, no biggie, but I was wondering: has anyone had a peanut problem along with the soy? And if so, can you eat beans? Or are all legumes out? I've been avoiding beans because they seem to make DS gassy.
Last question: for those with a soy intolerance, is soy sauce ok? I read on the list that soybean oil & soy lecithin are usually fine...
thanks!
-regina
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Soy sauce is out because it has soy protein in it--not just oil and lecithin.
I guess if you have a known reaction to peanuts, I'd eliminate all legumes and then challenge one variety at a time.
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yeah my DD was starting to do well and i had a pb&j yesterday (we hadnt excluded peanuts b/c i barely eat it and we didnt think that was an issue) and she was up at 3 am wouldnt go back to sleep but wasnt upset...then at 7 had a TON of diarrhea that was green and mucousy...the Dr said green poop was fine but everytime its green it seems to be diarreah so im linkin the connection lol guess i will cut out peanuts too.
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thanks for the replies. I am super bummed about the soy sauce since Japanese food is so easily dairy-free! Has anyone found an acceptable sub for soy sauce for sushi? Maybe the vinegar sauce they use for gyoza (pot stickers)? -sigh- I know it's worth it, but it's hard having the additional restrictions this time around.
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I could eat peanuts fine but not soy. You try a Vietnamese/Thai fish sauce based dipping sauce - not quite the same but better than nothing.
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ive replaced soy sauce with curry...its certainly not the same but its some sauce lol
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yumm, curry! I just made some tonight, with coconut milk. It was so good, it's making my tummy rumble thinking about it, lol.
I have been thinking I am going to pose the problem to the sushi chef next time I go out. Maybe sit at the sushi bar and ask if they can give me a dipping sauce that is soy-free. They usually seem game for a challenge!
MLK, I'll go to the Asian market and see if I can find what you're talking about. thanks!
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Stargrl, it's a home made dipping sauce actually! Based on fish sauce. Not sure how well it would go with sushi - I got used to eating sushi plain.
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DD is 4.5 mo, and is honestly quite a happy baby! I'm looking for a little feedback from the MSPI people to see if any of the following symptoms ring true:
- liquid stools for the past 2 mos on and off - last normal stools were over a week ago (no evidence of blood, but stool soaks completely into diaper)
- Frequent puking - started around 9 wks, has gotten better recently but today has been a bad puking day
- Red cheeks and raised bumps on neck (thought both of these were due to drool/teething etc)
On the positive side, she:
- Sleeps well - STTN 12 hrs, naps getting better
- Eats well
- Doesn't seem phased by the puking or the pooping
- Isn't fussy unless she's tired or hungry
I asked the dr about doing a stool sample and he poo-poo-ed me.... but he recommended that I cut out dairy (DD is EBF) instead. I haven't had any DIRECT dairy (milk, cheese, butter, etc) for 3 days. I know that it is a little early to see a difference.
My questions are:
- Do the symptoms above sound like MSPI?
- Wondering if I need to cut out even trace dairy and soy too.... (gosh... I hope not?)
Thanks much!
Tara
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Hello everyone, probiotics can be the solutions to your tummies' problem. Gas, bloating, diarrhea, constipation, flare up of IBS symptoms, Crohn's disease, and a host of other gastrointestinal upsets. When the flora of your intestinal tract is disturbed and the balance upset, then disease happens. In order to make sure that the flora in your colon and intestines stays healthy and happy you need to add probiotic supplements or probiotic foods to your diet. Probiotics are good bacteria that are helping us to be healthy and fights against any diseases.
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agreed
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I have been trying to find out information on the likelyhood of repeat babies w/MSPI, but have not found any information yet. DD#1 no allergies, DD#2 MSPI and silent reflux (had to go hyperallergenic formula), DD#3 MPI and silent reflux (did just fine w/soy formula). With DS #1 on the way, I am really starting to wonder if this milk protein intollerance business thing should be expected. I would like to try breastfeeding again this go around, but I'm not sure if I should take milk out of my diet as a precaution, or wait to see what happens. I am a huge dairy lover. Taking dairy and soy out w/DD#2 made me miserable and I think I'd have to switch to formula if it appeared to be the case again. It just puzzles me..why did DD#1 have no allergies (intollerances) nor did she have reflux...what would cause DD#2 &3 to develp these things. It's almost like something happened that made me forever have babies w/allergies and reflux. Which is just odd to me.
Anyone experience multiple children with protein intollerance and or reflux? Anyone have a mixture of children w/and w/out...if so was it from a certain point on w/all subsequent children? Anyone have younger children w/out intollerance and older children w/it?
Thanks,
Krista
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There are 5 of us who becamwe friends in birthclubs on here, our first borns are all around 2.5 yrs old. 4 out of 5 of the firstborns had relfux. We all got pregnant around teh same time, and have had the second bubs, I was last, mine is 3 months old. Anyway, ALL the second bubs had relfux except one. The one wh didnt have relfux thinks in retrospect her first born had relfux.
So that's 4 mummies with two kids each, all with reflux, then one mummy with one of each. All of our bubs also have MSPI. Mine also is intolerant to gluten.
My husband also had colic - he was the one who has passed on the gene to our kids I guess.
I know its genetic and the genes for reflux are linked to genes for allergies and intolerances.
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I've had it with #1 & #2. Both reflux-y but not enough to warrant meds. My theory: some moms tend to pass more proteins through their breastmilk, some babies genetically have a more open/susceptible gut. I think we're an unfortunate combo. But I will say, it was a LOT easier cutting out dairy & soy out of my diet the 2nd time around. The first time was just such a shock, I felt like I couldn't eat ANYTHING, but 2nd time I was like, eh, it's not so bad. Helps lose the baby weight for sure! So I'd encourage you to breastfeed; you may want to go at least the first few weeks and maybe just avoid large amounts of obvious dairy? Just a thought. I wish I knew "why me"... I'm the only one I know (excluding internet friends!) who has had to deal with this.
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I took dairy out of my diet as a precaution as soon as Ds2 was born and it was the best thing I ever did, I didn't regret it when Ds2 was born. It was alot easier to do it second time round. He ended up having multiple food intolerances and I am so happy I didn't have to let him go through all that extra pain of having a gut sensitive to the dairy. I wish thoguh that I modified my diet whilst pregnant, I drank sooo much milk and ate so much gluten, I really think that was a mistake :(
There is new research showing that if you take obvious allergins out of your diet when pregnant in the last trimester you are less likely to have a child with intolerances. A study was done on mothers who had a first born with multiple food intolerances in conjuction with the allergy unit at royal prince alfred hospital in sydney, Australia.
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The one wh didnt have relfux thinks in retrospect her first born had relfux.
So that's 4 mummies with two kids each, all with reflux, then one mummy with one of each. All of our bubs also have MSPI. Mine also is intolerant to gluten.
My husband also had colic - he was the one who has passed on the gene to our kids I guess.
My two are slightly younger, but I too think in retrospect DS1 also had issues. MIL says DH was the only one of her 3 that "needed ovol" - he was EFF (and it was regular/cow's milk formula!). Now (after 10 years of thinking he had IBS or colitis or chrohns) he cut out all obvious dairy and feels like a new man!
For those that did this before, when did you start re-introducing stuff? I'm thinking no sooner than six months (although might try a wee bit of hidden before then) and not for real until after a year?? I'm with you, Eloise in thinking that the sacrifice now is easily worth it if it can save DS grief later (and permanently) in life.
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yes I agree Shannon about the prevention stuff. as for introducing intolerant foods I would do it first through the breastmilk which is such a milder way to go. I personally am going to try when I notice a marked improvement with the reflux. Hopefully at 6 months point. Last time Ds1's relfux was nearly gone by 8 months, I started eating dairy again at 7 months, everything except milk that is. Then at 9 months he wasn't showing any issue with my breastmilk, so I gave him a few spoons of yoghurt, no problem, then cheese not problem. We successfully weaned him off his meds by 9 months too. I didn't give him cows milk until 18 months, at 12 motnhs I gave him goats milk and rice milk, which he tolerated well. This time round I will give A2 milk after 18 months, or else just stick with the goat.
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Well I was *hoping* to hear that it was hit or miss, but kind of expected it to be a consistant thing for parents having multiple children w/reflux and or MSPI. DD#3 is only MPI, but I do wonder about her. She just hit 1 year and I tried mixing regular milk in w/her bottle and there was instant fussiness (doesn't help she's teething too, so some could be from that), but she started have more loose bowels. Didn't think much of it until we got to about 1/4 soy formula & 3/4 milk...the bowels became even more loose. So it confirmed that she was not ready to switch yet. The reason I wonder about her is because she started having her stools transition way before normal. They started becoming loose and not the black tar before we even left the hospital! How can you tell the difference between MPI and lactose intollerance? I know lactose had been misdiagnosed for so long since they didn't really understand MPI, but I thought that lactose intollerance does exist and shows signs at birth vs. a few weeks later. DH had and still has lots of stomach issues. His mom said he was "allergic to her breast milk", lol, love that old time thinking. Not sure what she ended up feeding him. He couldn't drink cows milk for a time, has had IBS and confirmed thyroid disease. I do drink a lot of milk (at least a full glass every morning) and lots of cheese. I also had been very sick and could only drink rice water for a while when I was around a year old. Family says it was bad water they were informed of after the fact, but I've questioned that with our kiddos having issues w/milk. Not sure I'm willing to try breastfeeding again since the odds are really against me...kiddos w/MSPI, insufficent gladular tissue resulting in low milk supply. Going to try switching DD#3 to soy milk (since she can handle soy formula) sometime soon, hopefully all will work out. Going to be difficult to avoid cooking w/milk/cheese for her over the next 6 months since she's on solid foods.
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Krista, with your DD#3, have you tried cooking with milk? My pedi GI said that when milk has been cooked, it alters the protein. Also, how about yogurt & cheese? I think that straight cow milk can be difficult even if you don't have a problem with dairy, but you can get the calcium & calories in with cheese/yogurt, etc., if she can tolerate it. Just a thought.
If I have another kid, I think I will go dairy free maybe starting a few weeks before my due date, but definitely start out dairy free & really not much soy either, and perhaps try adding it in after 2-3 months. I wonder if giving them a break from the beginning would help?
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Cheese is a problem as well. Even stuff that is questionable if it's really cheese or just flavoring (guess it was really cheese), such as scalloped potatoes or mac-n-cheese. She was not able to tollerate any meat for a while too. We waited about 3 months and she appears to be doing fine with meat now. Although, I can't confirm that until her teething is done (getting the first set of molars in...ouch). So due to teething she's been having some loose stools.
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I've finally had the time to get on this thread, but was hoping against all hope that this wasn't what I was dealing with :(
E is a 14 week old angel/textbook and has been almost exclusively bf since birth. I've gone through what seems to be a million bfing problems, but when the feeding got back on track the weight gain was still low. Then E started to lose weight. E started month 2 at the 90th percentile for her weight and at the end of month 3 was at the 7th. We've been to a paediatrician who made me feel like I was starving her, and I've practically lived at the bf clinic where my LC said from day one MSPI. I should have listened to her from the start.
The second time E lost weight dh and I were quite worried and we decided to top her off with formula. It was milk based, and the second 3 ounces had her in the emergency room with a scarlet rash and eczema all over her chest. There was a little blood in her poo a couple days later, and then the eczema finally dissappeared. So at that point we knew major MPI or allergy but not 100% sure yet but I'm leaning towards allergy due to the weight loss. The docs and paed said to try soy while the LC wasn't keen on it. I think I should have listened to her again. My angel baby is quite grumpy on the soy :( this is the only time she screams. I was giving her one 6oz bottle per day to see if that helped with the weight gain. Right after the feed she's great, but within 4 hours very fussy, gassy, and has a mucousy brown bm. Then she's fine.
Now in the last 12 hrs she's either developed a cold because she's incredibly mucousy from the nose and quite congested. I've heard that this can be a sign of allergy, but since going completely dairy free for 3 weeks (hidden dairy too) the only culprit could be the bottle she had yesterday. Or here's to hoping she has a cold.
We had a really great week where she gained a whole pound after the dairy was out of my system, but this past week it was only 2oz. The little turkey has also decided she liked the forceful letdown we were dealing with so I'm gradually bumping my supply up so she feeds better. The popping off and on is starting to hurt but she's getting enough I think, so I think the bfing is going ok. Oh - I also don't let down for a pump so it's really hard to get enough bm to top her off with that if she has a bad feed.
So now I'm on weekly weight checks, and dh goes back to work tomorrow. He's going to see if he can get another 6 mos off but the military stipulates that your 9 month entitlement has to be taken all at once. I'm also feeling like I'm neglecting my twins a bit, although I was told that's normal for when you bring a new lo home.
Sorry for the long saga but that's what it's been. We're back at the doc early next month for the 4 month jabs so going to get a script for Alimentum just to give me a break if I need it. I'm happy to continue bfing on the dairy free but soy free scares me. Hopefully it's just the soy formula I need to avoid, and I can go from there.
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I foudn I was makign most stuff from scratch because of the dairy intoelrance, so going soy free wasn't such an extra bother. Once I'd worked out soy-free sources of bread, it just became another part of life.
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Good point! Breads and french fries are my downfall lol.
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Hi all I honestly thought I had come by here before, but guess not!
We too have slowly figured out DD is MSPI with reflux as well. DS had reflux as well. He was off meds at 6mo.
DD is now 6mo and she is on half the dose I was giving her. I am not ready to even try milk for me yet as we were on vacation and figured out soy was bothering her just as much ! That was a week or so ago.
I did like to hear though about the time frame you have tried to introduce dairy to your LO's.
I grew up in Wisconsin...America's Dairy Land...so I am having a hard time even thinking of having a child who can not eat cheese or drink milk! Plus, I am missing it soooooo much!! I have enjoyed the few pound weight loss, but still would rather have dairy!
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Mommy Mertel, my twins were MPI and reflux and outgrew it around 20 months, as 90% of them do. I jear you on missing milk. I'm a milk addict and the thought of ice cream, cheese and plain old milk makes me a little sad. I've been dairy and soy free for about 6 weeks and would kill for just a nibble lol.
I'd also like to know when to try adding dairy to my diet again.
Well we had E weighed again today and she's gained 5oz in 3 days with bfing alone :) this is the third time she's proved that she consistently gains without formula so there's something else in it that she's sensitive to. But she's gaining and no longer a failure to thrive!!! :D :D :D
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WOO HOO!!! Good job on the weight gain!!
We are kind of small here too. DD was 13lbs at 5mo, and she will be going to the Dr. for 6mo checkup in a few weeks. She just did a big GS...my first I noticed in supply, so I am hoping she has gained some good weight.
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Well we had E weighed again today and she's gained 5oz in 3 days with bfing alone Smiley this is the third time she's proved that she consistently gains without formula so there's something else in it that she's sensitive to. But she's gaining and no longer a failure to thrive!!! Cheesy Cheesy Cheesy
That is so wonderful, Vicky! Congratulations!! This really made my day. BTW, I've got a friend who is doing FF with her refluxer and she is encouraging me to stay the course with BFing (although she is very sympathetic to the ED tactics we have to do to get there). At least we can (theoretically) control the contents of our milk. Tari (Scarlett's Mom) told me there can even be a corn product in normal table salt, so I've switched to sea salt as I think S is really iffy on corn. It does seem to pop up everywhere!!
Sarah, sorry to hear soy is now giving you guys grief too. Apparently a lot of bubs can tolerate the soy lecithin, but we ended up avoiding it.
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Fantastic job Vicki!! ;D
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Thanks :D
Just a quick update: Emma is now almost 16lbs and has some rolls of fat and doing quite well growth and developmentally. I had started adding foods in about a month ago and had some pretty nasty flare ups :( we've also discovered silent reflux that only became apparent when the foods were added back. We've started with Ranitidine and she's improving slowly but with my experience with the twins, she'll probably need something different in a couple of months.
Otherwise, during the day she's a happy little gal and doing great. Nighttimes are still a mess but we'll get there.
Thanks for the continued support.
Oh and still EBF'ing!!! :D :D :D
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Wanted to ask some of you ladies over here this question:
My DD has had MPI since she was a few weeks old, but we didn't discover and treat it until she was 5 months. Since then she's been on soy formula and we've avoided all milk products. At 9 months we introduced cheese and then recently yogurt and she has no issues with them. However yesterday she had a peice of her brothers bagel with butter on it and she was not grumpy at all from it, but she did have a little spit up for the rest of the day. So I take it, she can tolerate cheese, yogurt, but not anything else yet? Anyone else here with advice as to when I should try to intorduce other milk products to her? Do I just keep trying every few months?
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Just from my experience, and I'm not sure why, but my LC suggested to me that when I start eating dairy again to go with cheese and yogurt. Possibly the pasturization? Also these were the first two she recommended for me to introduce to her when the time came to try her with milk products.
Personally if she just spit up a biut more and she's otherwise fine, I'd mention it to the dr and wait and try again in a month or so. Yay for positive outcomes with the first two though. It sounds like if she's tolerating that stuff, then progress may be in the works.
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save the milk for last hun, the proteins are in the most "pure" state. If shes tolerating cheeses now you could try goat milk or cows milk at 12 months.
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Thanks Eloise. She's not doing cheese well enough yet. I did cheese about 2 months ago and bits of blood in per poo but not as bad as it was. So I think things may be getting better but just not 'there' yet. Hopefully soon though :)
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Thanks ladies! Myla can officially tolerate yogurt, cheese, and hidden milk in her food! We've come along way from the baby who would vomit from a drop! Things are looking brighter over here for a start of whole milk in 2 months:)
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Hello,
I'm new to being a mother, new to using forums and new to MSPI, so finding my way around this forum and picking up advice - please excuse my ignorance of forum acronyms, I'm trying to get my head around those!
My lovely daughter, Bettie is 5 and a half months old and the poor thing suffers with awful eczema and allergic colitis. I breastfeed, but she was given formula in the hospital by an awful nurse who accused me of starving her when she was less than a day old, and subsequent midwives who told me my milk hadn't come in, however by day 3 I used a pump and filled the bottle! Had an awful time establishing bf due to being really ill with repeated bacterial mastitus, but luckily I was able to continue bf and Bettie has always gained weight well.
After going backwards and forwards to the gP with my concerns about her skin, reflux, bloody stools and green diarrhoea, I finally saw a pediatrician and dermatologist 3 weeks ago. I have a new routine of creams and bandages, and have cut all milk and soy protein from my diet (not easy for a veggie, but I think i'm eating healthily enough, if not missing cheese, choc and tofu!). As advised I have started weaning with purees and it's going well. Her skin is still terrible, still having poop issues, but the blood stopped as soon as I changed my diet. I am taking solace from your stories here of your children who are still healthy, some also able to tolerate these foods now they are older.
My concerns are about routine, or total lack of it! I read about EASY and dip into the whisperer book, and I fear I am allowing "bad habits" But are all bets off with an unwell baby? The poor girl is in so much discomfort due to her eczema and stomach. She often wants to feed every 2-3 hours, but that is common for babies seeking to sooth the pain of acid reflux. She struggles to stay asleep as she itches so much and wakes herself up inconsolable, despite taking piriton at night. then we have bad days of her being overtired. I feel for her so much, I do anything to give her comfort, so at night myself or my hubby hold her arms in her moses to stop her itching herself awake, and in the day, I feed her to sleep and let her nap on my lap so I can hold her arms and soothe her. If I don't do this she doesn't get rest and will scratch until she bleeds (we use scratchsleeves and bandages to minimise the damage).
Lack of sleep is taking it's toll on my husband and I, and I get nothing done all day. As soon as hubby is home, it takes both of us to do bath, creams and bandages as she gets so agitated and itchy, and then the stress of bedtime starts!
Anyone been in this position and got through it?
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Welcome to Baby Whisperer and big {{{HUGS}}}. You certainly have a lot to deal with.
Have you tried swaddling? A lot of reflux babies do well with it and it may help her to stop scratching
You can forgive yourself for the 'bad habits' :) Reflux babies need comfort more than anything. I'm only now starting to sleep train my lo at 9 months. She wasn't comfortable enough with the teething, mspi and reflux. I rocked and nursed her to sleep until very recently. It's not ideal, but you do what you have to for everyone to get some sleep if your lo is in pain or discomfort.
There's another thread and I'll get you the link to it when it get to my computer. It's called: "Dear Diary, Support Thread for MSPI". There are a lot of us on there and we pass along support and info. Most of all understanding. :)
A lot of us have dealt with these issues and it's a great support network.
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http://babywhispererforums.com/index.php?topic=186294.0
This is the link Vicki was talking about :-*
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Big thanks to you both! I will definately go through the thread as the experience of others is so helpful. My Bettie is like Houdini when it comes to swaddling, but i've been looking into large swaddle bags that some eczema forums recommend to give a try.
Many thanks again!
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Hello from me too!
I am sorry but I don't know much about allergic colitis. Has it been diagnosed through tests??
I do understand about your LO's eczema though. Poor thing. Olly was swaddled from birth until about 8 months. The main reason he was swaddled so long was the itching. Even now it has practically gone he still scratches when he goes to sleep. I stay with him tbh so if he scrathes too badly I take his hands away.
Do you use steriod scream on her skin? I know it is not ideal but it did help with the itchiness. The turning point for us was cutting wheat and egg from my diet (EBF too) but that is just us - not saying you need to.
And routine - crikey when a baby needs help you just need to help them! There are lots of mums on the chat sticky that have BTDT (me!) or are going through it now. All worry about routine and bad habits but you just can't worry about that until your LO is better. Olly didn't really sleep thru the night until he was 1, before that we would hold him for hours as he would be in pain.
*HUGS*
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For excema you can buy tubafast dressings they are £15 each but washable, they give a skin tight thin dressing and are best used for days between washing (so they hold in the moisterisers) they come with built in mits which help stop scratching, its not a mirical worker my 2 year old will still scratch and has still drawn blood but can not do as much damage
if your in the UK you can get the on perscription but only if they deem nessesery (sophina was ripping chunks out before they deemed them but now she gets them as and when as she she has to wear them 24/7)
I had a question i wanted to ask in here...
If you have two intollerent children, are the likely to follow the same so my 2 year old is now outgrowning MPI does that mean Alyssa will probabaly grow out at around the same time?
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i know this is a little late, but you moms w/ mpsi, have you tried baby on probiotics? i swear by them! my lo was diagnosed w/ reflux & i went off all dairy/soy/wheat/everything for several weeks to help her. she would scream half the day. it was awful! we'd both cry. a friend turned me on to probiotics though and it seemed from day 1 she started them, i saw improvement. her poo went from mucous snot w/ some blood to normal yellow breastfed poo. now, grant it, i stayed off all dairy until around 6 mo. i did dr. sears elimination diet w/ her in the beginning and incorporated other things in over time, but probiotics have helped her tremendously!
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what are the probiotics made from?
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Hi ladies! I have a quick question. I just started my 11 mo DS on Alimentum formula(long story) anyways, he is now having diarrhea. Any thoughts on what I should try next? He is not bothered by dairy in my diet anymore(still gets 2 oz of bm a day), and he can tolerate dairy cooked like milk in pancakes or bread.
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Ive never heard of that milk but a quick google says its simular to nutramegen in that its an extensivly hydrologised formula
Nutramagen says you will have looser poos so it might be the same for that formula?
are you able to get advice wiether this is normal o not?
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You can get funny poos on some of these formulas. I think it is Nutramigen that they now state it on the can as many Mums were worried by it.
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We had the exact same with Alimentum here.
Hope things adjust quickly for your lo. Sometimes things just need to adjust in them iykwim.
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Thanks everyone. I switched to the ready to feed and his poop was better today. We were using the powder while we were traveling. Thanks to you al for pointing out that this is common, the nurse at my ped. Office told me to switch formulas. ::)
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I haven't been on this thread before. J is my 2nd MPSI baby so I knew what I was doing with him this time around and didn't really feel the need to be here - it has been second nature to me this time! ::) But he's just turned 1 and I have just started a dairy trial. And I need to write it down and be around others who know what I'm talking about!
With J I cut out dairy from my diet at 3 weeks old when bf him because we had the first signs of reflux and difficult feeding and he had no traces of milk from then on. At 7 months we moved to Neocate.
So yesterday I gave him cow's milk in a sippy cup. He drank about 30ml maybe a little more and then refused to drink anymore. He usually drinks from a bottle so I wasn't sure which he was complaining about (or both!). Today I put it in a bottle and he drank 70ml. Both mornings he's just been so fussy. Cries and whines and follows me around and is just generally unhappy. His tummy is also hard (a problem we have with other foods including gluten and fruit - but I'm otherwise only feeding him things he has no problems with). His poo has changes to be much looser. Not quite diarrhoea though.
I think I need to press on for another day to be sure. I tend to quit when things start heading bad but then I never have a definitive answer. Teeth don't seem to be an issue right now (he just got tooth #4 last week).
I wanted to go the milk route first because the last time he had any traces of dairy was so long ago. If he COULD tolerate milk it would skip the in between steps. Plus with DD we took the slow route and it did my head in. But if he does fail milk I will go back and try cooked in dairy and cheese etc in separate trials.
We will have to switch from Neocate at some point. I think I'd rather not go to Neocate Advance if I can avoid it. I don't want to do soy and I have a feeling (based on the other things he doesn't tolerate) that coconut milk will be out otherwise I would have tended towards rice milk with added coconut milk for fat. I haven't investigated the nutritional benefits of oat and hemp milk yet though I read someone around here saying hemp milk was fab nutritionally. I don't even know if we can get that here. So maybe we will have to go to Neocate Advance :-\.
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Oh Jenny, it does sounds like he is reacting. Yes I would go one more day to be sure, you don't want the question mark.
To share the advice I got on introducing milk - I am not trialling cows milk until 18 months. We have started with RAW unpasteurised goat milk which is perfectly legal to buy. Because the proteins are not broken down and changed through the pasteurising process they are much more easily tolerated. Kai is tolerating it :o I won't be going for soy. Goats milk also is higher in fat and calclium. If you can't get raw, even the pastuerised version is much easier to digest the proteins are different.
Check out my thread on food allergies board a while back:
http://babywhispererforums.com/index.php?topic=185707.0
Buffalo yoghurt trial seems to be going ok.... that is another option which is well tolerated, high in fat and calcium.
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hi jenny, i'd be considering that a reaction too but if it were k i would press on for a few more days to get a more definitive answer. (not easy i know :-* ) my only other thought is maybe too much too soon? although 70ml isnt a lot, it is for someone who has never had it. i'm about to get my outline of how much, how often from dietician next week but it is very much slowly slowly slowly. i cant remember exactly but i think it's along the lines of 1tbs for 3 days to start out then gradually increasing from there. when i stopped bf it took me a good month to be able to tolerate a whole cup of milk again (i never had probs before). i had to go back to just yoghurt and cheese first for a couple of weeks. then 1/4 cup of milk for a week, 1/2 cup for a week, 3/4 then 1 cup. i still cant handle full fat milk or ice cream. long story short, if you do think he's reacting you could stop and break for a couple of weeks and then trial more slowly. is he on neocate LCP or regular?
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anyone have any good ideas for substitutes for milk in recipes like bread and other baked goods?
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good point Kirry, Kai is only drinking 20ml a day I am not about to announce he can drink any amount of goat milk yet ::)
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melissa, i've just been using rice milk in baked goods and so far it's been fine but i use a bit less than the recipe calls for as it is quite thin. i've heard oatmilk can be better for baking as not so thin as the rice milk.
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Coconut milk is quite yummy. I've used it in pudding before. There's a thread around here somewhere on mpi recipes. I'll have a look for you.
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hemp milk was fab
It may have been me (waving HI to everyone-it's been awhile since I have dropped in here) on another post. When I was researching alternatives for me with Bean, I found research suggesting that Hemp and Coconut were the most nutritionally sound and closest to cows milk in a nutrition sense. I could not find anything directly comparing them to one another, but I found hemp to taste totally disgusting!! I also chose coconut bc it had more fats in it than any other drink substitute. It also was the highest in cals if I remember right.
There is also a whole grain drink that you can sometimes find that has oats, amaranth, and a bunch of other grains that tastes quite good and is not a bad nutrition substitute.
I personally stayed away from soy as so much soy in the US is genetically modified and personally I don't trust that as they have no long term studies on how it is affecting us as a population.
My only issue with rice was it really did not contain much nutritionally. It was just good if you wanted to get cereal wet or if you needed something to replace a liquid in cooking.
That is my official contribution :D
I used the coconut milk in all baked goods for the family and it really worked well. Even in scrambled eggs, it made them a touch sweeter but not a noticeable coconut taste.
:-*
Sorry I haven't had more time to chat with all of you!!
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Yeah, it was you Sarah, I remember now!
J had 2 sips of milk this morning then THREW it across the room angry. He also had a completely uncomfortable NW at 11pm (needed gripe water and a cuddle) and then an EW at 620. He was still tired and I lay in the spare bed in his room. He was trying to sleep (not crying and trying to get me to just get him up) but was uncomfortable and didn't sleep. Both NWs and EWs are very rare for us.
Once we are recovered from the milk trial I think I will try him on yoghurt. I know that lactose intolerance is rare in babies, but I think it would be a good (though not perfect) test to see whether he is lactose intolerant rather than MPI. The pattern of what he can and can't tolerate follows the FODMAP diet which is used for Irritable Bowel Disease suffers. The GP has said J has an irritable bowel (description of symptoms rather than diagnosis of disease). The FODMAP diet involves reducing foods such as those containing fructose (and so far J only tolerates fruit that is low in fructose like bananas, berries), fructans (which includes wheat and J has failed a gluten trial) and lactose (would say he's just failed a milk trial - so that's why I want to see if it's the lactose or the MP).
I soooooo don't want him to have to follow this stupid FODMAP diet but on the other hand it would be helpful to have actual RULES for what should be safe to feed him! (and I have been keeping FODMAP in mind when I try him on different things and it's been right so far....)
Just before we had our latest big earthquake we had done our gluten trial and I decided to get help from a dietican that deals a lot with IBS people and FODMAP diet. I had rung them the day before and hadn't got through. Now they're not even open again since they are inside the cordoned CBD ::). But I need help so will do it when I can.
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Here you go melissa :)
http://babywhispererforums.com/index.php?topic=172158.0
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Jenny-not that it makes a whole bunch of difference as J is dealing with more than bean. But, yogurt made bean really sour and spit up prone until about a wk before she had milk.
She could handle cheese and milk and yogurt through me before she could have yogurt or drink milk. She has been doing great with ricotta chz on bread. That was our first real dairy food she likes.
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I found oat milk almost as thin as the rice milk, I expected a thicker then it was
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Yesterday (the day after day 3 of the milk trial) he was definitely teething. But he doesn't get a hard tummy from teething so I don't think the trial is null and void but I don't want to continue when it makes it all a bit grey to be able to tell what is related to what.
We use rice milk in baking. Never had a problem with it.
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My 2yr 5month DD and 6month DS are both MSPI. My DS was only diagnosed at 10 months, we cut out milk and soy in full forms but she still ate foods containing milk and soy as they did not bother her terribly. We have now been told she won't grow out of MSPI unless we completely cut out all foods containing any milk and soy. We have started doing this but I wondered if anyone knew how long we may need to do this?
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I have finally today managed to convince my doc to try nutramigen as i feel my lo is mspi but she hates it!!!! so far she has only taken 3oz with much protesting. anyone else found this??
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I haven't read through the whole thread, but was wondering--how young did all of you diagnose the MSPI? I've had 2 kids with MSPI already, and while #3 is only 6 days old, today he has been a LOT fussier and gassy and has seemed like he's in quite a bit of pain (knees drawn up and yelling suddenly). I know he could just be starting to wake up from the sleepy newborn stage, but I'm wondering if its time for me to cut out the dairy and soy. I haven't been avoiding any of it because I was hoping I'd get lucky and not have to this time. Also, we've had so many friends bringing us meals, so at this point, its been easier to just eat what we have.
Thanks!
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7yeargap, my LO is on Neocate and gp and hv were pretty surprised that he was fine on it as LOADS of LOs have issues with the taste.
kim&savannah, i suspected at 5 weeks old but just started reflux meds so gave them a go first and only cut major dairy (milk cheese yoghurt) not hidden. at 7weeks still had issues and gp did stool testing and confirmed MSPI so cut all hidden dairy too and all soy. and i hear you on the meals, i had the freezer stocked with a months worth of meals and majority contained cheese! (lucky DH had some nice lunches at work for a while)
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Hi, Please be advised I am going to lock this thread now and transfer the info on MSPI to a new sticky. Please ask any specific question that you have on the Food Allergies board and we will try our best to help you! xx