Feeling Crushed

[kim&savannah]

Little backstory for anyone who hasn't read any of my other posts.  Henry is MSPI and I've been off dairy and soy for over 2 months now, but he continued to have mucous in his stools even after the reflux symptoms went away.  For the last 4 weeks, I've been following a really strict ED--basically the RPAH, but minus all the common allergens as well, so no eggs or gluten (or nuts, shellfish, etc. . .).  The mucous is still pretty bad and his weigh gain has slowed down a lot the last 5 or 6 weeks, so his ped. referred us to a GI specialist.

We had that appt. this a.m. and I was totally dissappointed.  His regular ped. had been so supportive of all the sacrifices I'd made and wanting to get to the bottom of what is causing the problem before we blindly start supplementing or whatever.  But this dr. came in with a nutritionist (I was thinking Yay!  SOmeone to talk about all the food stuff with ) and a canister of formula.  He ordered blood work and a stool sample to rule out some various malabsorption issues and check for other things, but then started talking about how we need to get his weight up and its just so hard to know with BFing--they really need him to take bottles.  I told him I'd really like to wait until we get the results from the tests they are running before I start to supplement with some nasty tasting formula, which he agreed to because in his mind, I need some time to get Henry used to taking a bottle (which he takes just fine, even though I don't do it very often).  But in my thinking, if Henry does have a problem absorbing the nutrients from my milk, won't he have a problem absorbing the formula nutrients as well?  Shouldn't we solve the problem of WHY he's sick rather than just stuffing more calories into him, which is all their goal seems to be right now?

I have just gone through so much this last month trying to solve this problem so I can keep BFing and its killing me to think I'm going to have to fight the drs the whole way.  I DO want to do what is best for Henry, but I'm just not feeling like this is it.  And now I am worried that I have somehow compromised my milk by the severity of my diet the last month (more likely quality than quantity because H is having TONS of wet and poopy diapers--something is going in him to make all that come out.)  The dr. didn't think there was any point continuing with what I've been doing at this point, which I agree--4 weeks in and there really hasn't been any improvement.  So I came home and at 2 fried eggs with guacamole on them (lots of healthy fats!!!).

I do plan to see a lactation consultant who I assume will be more supportive of what I'm trying to do, and I think I'm going to try to cut out carbs and sugars since I really think we have a leaky gut issue at this point, and I can eat a lot more healthful foods with good fats, protein and vitamins on that diet.  I'm also going to get fenugreek to try to boost my supply.  

Oh, and they were not too happy that I'm not doing Vit. D supplements.  I told the nutritionist that the ones I'd bought had so much junk (colors and flavors) in them, that I got turned off of the whole idea.  She admitted she's never read the label, but "that's what most of our patients use and the babies are all fine."  It's not like I think he's going to instantly drop dead when I give him food coloring, but seriously, WHY should I have to?!!!  I'm going to the health food store today and hope they'll have something "cleaner".

Thanks for listening to my rant.  I was just so hoping to find a helpful ally in all of this because I'm not an expert and its been a lot to take in the last month, but I don't feel like this dr. is going to be that for me.  They don't even want to see us for another month, although I assume if the labs come back with anything, they will do more than just let me know over the phone.  I hope.

Editted to add:  Another thing I almost forgot--the dr. also compared Henry's weight right now (3%) to the % he was at when he was born (50%).  Even my regular ped. pointed out that they don't really care about the initial weight because babies are born at all diff. sizes and that has nothing to do with where they will settle in on the charts.  I was quick to remind him that he was 20% at 2 months and that is where all my babies have been, so its really only what has happened in the last 2 months that is of concern.  It was just like he was trying to make it sound like Henry had had some massive weight loss, worse than what has really happened.

[deb]

Oh, yuck, so sorry you're getting so little real help from the doctors who are supposed to be helping! I'm not entirely sure about the digestion between mother's milk and formula, but with the HA formulas the idea is that nutrients are already broken down so they're easier to absorb.

If you're feeling strongly that leaky gut is the issue - which it could very well be! - then come over to Healthy Living and join us on the Paleo Thread - no dairy or grains, and still plenty of good stuff to eat.

Oh, for the vitamin D supplement, if you yourself are taking a high-quality one, I think he'd be getting some without all the extra junk in it.

[~*~Louisa~*~]

Unsupportive peads are horrible.. OMG! mine was horrible she stopped thiving at 2 months and at 5 monthsish we finally put her on neocate fully

i had things like you might as well since soon breastmilk wont be nutitional because she will be 6 months (this is at 2 months) pushing on 2 week trials of nutramigen (which i cheated and did half breast half nutrimigen alternitivly to satisfy them and me)

[*jazzberry*]

No advice Kim but (((((((HUGS)))))) - you are making so much effort - I really feel for you x

[EloysH]

Kim I am so sorry that this is happening.

I think you are absolutely right here:

if Henry does have a problem absorbing the nutrients from my milk, won't he have a problem absorbing the formula nutrients as well?  Shouldn't we solve the problem of WHY he's sick rather than just stuffing more calories into him, which is all their goal seems to be right now?

 Breast milk is more calorie and fat dense than formula.  Its just that the breastmilk may contain the irritants due to your diet too.  But it also contains all the other goodies as we know that his gut really really needs to heal.  He needs all your good bacterias so he can heal a leaky gut - if that's what he has.

In your case, you are now in such a specialised area - gut nutrition there really aren't many doctors that are sympathetic to the cause as the diet side and gut side is not taught in medicene. Here I had to seek out a RPAH diet versed paediatrician and there are only a few in my city. To find my pother paediatrician that specialises in matters of the gut i had to go to MINDD organisation and find Dr's listed there, luckily mine is on the advisory board.

Are you in the states?  I can give you the links to the relevant organisations:

http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5457441/k.5E5F/Welcome_to_PhysicianLink__18005323688_/apps/kb/cs/contactsearch.asp

http://www.worldhealth.net/pages/directory/

HTH xx

[Erin M]

I'm so sorry Kim, that's dreadful!

We use the Carson (or is it Carlson?) Vit D supplements, they've got no additives.  I got them at Whole Foods.  If you can't find them, let me know I will pick up a bottle and send it to you (Whole Foods is literally 2 minutes from my house).  What about probiotics?

And what is up with the immediate formula push?  Is he on commission or something?  I'm very frustrated on your behalf.

And the birth percentile - James wasn't even on the chart when he was born and now is at about the 75th.  I don't think it means much of anything.

[deckchariot]

oh Kim {{{{{{{hugs}}}}}}} I'm sorry the specialist wasn't more helpful.  We had the same issue when we saw a GI specialist.  You are doing so great for Henry!  When we were struggling with Katie in the early months, my ped reminded me that she was still getting lots of great stuff from my breastmilk even as we were trying to figure out what was still bothering her.  I hope the lactation consultant is more helpful!!

[kim&savannah]

Thank you so much, everyone.  Seriously, it is so nice to have somewhere I can go for actual support and encouragement.

Erin--Thank you so much for offering to help.  I did make it to Earthfare today and found Vit. D that has nothing added to it, so we'll start that tomorrow (I just forgot this afternoon.)

Deb--thanks--gotta start looking at the links.

Eloys--thanks for those.  there are a couple drs. within a few miles of us.  I need to see if our insurance covers them and then I can look into that as a possibility here.  A local friend also has recommended her very holisticly minded ped. to me who has been amazing during their allergy struggles.

Louisa--how bad was your LO's weight gain?  What did you try before moving to Neocate?  How did you figure out all her sensitivities?

Totally enjoyed my salmon tonight, and took some Fenugreek--I'm ready to go with this.

[Jenn+Ethan+Emily]

((((((((((hugs))))))))))

[kim&savannah]

I am feeling really discouraged right now.  LC was great, and really had a lot of positive things to say and is still doing more research to give me a good plan of attack.  Intake is good, but the analysis of my milk showed that it is a lot lower calorie than she'd expect to see at this age    I've always thought that I probably don't make super fatty milk, but none of my kids have ever stalled like this for weight gain, so this is the first time it seems drastic enough to  worry about.  And now I'm left with all this mama guilt--did the ED hurt my milk?  Or did I hurt it by single side feeding?  Or stretching feeds out ala BW recommendations?  Or because he seemed like such a speedy eater, did I not let him eat long enough to establish good fatty milk?  I'm so lost!  And now I just need to know how to fix it, assuming that it can be fixed at this point. 

It's all so dissappointing.  This is my third baby--it was supposed to be easy this time around, but this is turning out way harder than it has been with any of my kids. 

[deb]

I would actually think that SS feeding would be increasing the fat of the milk he is getting; more hindmilk that way, I believe. (It's been a while since I was really conversant on this stuff, so if I'm talking out my backside, someone please let me know, but in my memory it seems that SS was helpful for getting more satisfying milk into them.)

Here, I found this page - http://kellymom.com/nutrition/milk/change-milkfat.html - while looking to see if I'm really talking sense after all these years.

I'd make sure you're eating animal fats to the degree possible on your ED. If you can get hold of coconut oil, it should be fine to have a spoonful daily or even twice a day - that's actually good healthy fat in there, and next to breast milk itself is the highest source of lauric acid anyone can consume outside a plain old supplement of it!

[Erin M]

Kim, I have no idea for sure, but would think that if you upped the fats now, it would help - have you dropped some of the ED?  Maybe if you concentrate on those good fats, it will help. 

[EloysH]

hugs love.  So hard,  You are doing everything in your power to get this right.  It's not fair to be told that your milk is not calorie rich enough.  I have eben told time and time again that the fat content of the milk is not hugely coming from diet rather than the body itself and that eating more fats is inconsequential.  But it can't hurt right?  Have you tried gee?  Dairy free and very good source of essential fatty acids.

[kim&savannah]

So, the LC called back after doing more research and reading and said that everything she was seeing actually said that milk averages a lower calorie count than she was thinking at this age, so I'm not so far off--still on the lower end of the range, but not off by 15 calories/oz which is what she first told me.  Kind of wish she'd known that at first so I didn't totally freak out!

Deb-Yes, SS feeding does seem like it should have helped, I just wonder if it didn't get the volume up.  I've been doing some reading and it seems that if you make lower calorie milk, the baby usually makes up for it in volume, but I wonder if both mine are a little on the low side.

Erin-I've added back in tons of foods, but took out all the carbs and sugars because I'm thinking now that he has leaky gut which means I need to get his gut flora in check by starving the yeast and upping the good bacteria.  So I am eating plenty of healthy fats now.

Eloise- From what I've been reading, and the LC said the same, that what you eat doesn't really affect your milk all that much, except possibly changing the TYPE of fats available in your milk.  But it pretty much is what it is.  And while I have lost a lot of weight the last 3 months, its not like I'm malnourished, or even skinny.  I've still got another 15-20 pounds I could lose, so there is still plenty of fat on me.

So the updated recommendations are to keep feeding him as often as possible, breast compressions at the end of feeds to squeeze out as much of the fatty milk that I can there at the end, and if I want to pump, then skim the fat off of that milk and feed it to him.  She also suggested that I consider adding back in some carbs--I was considering it, but after a couple days of less mucus, Henry had a pretty mucousy diaper last night, which I'm thinking was because I'd eaten a lot of fruit the couple days before, so I do really think that there is something to this GAPS diet and hate to just stop it right now when we might be getting somewhere.  And I'm not convinced that his body isn't having a hard time absorbing the nutrients because of the leaky gut.

Thanks for all the support.  this has really got me stressed, which I know doesn't help my milk supply either.

 I really hope he puts some weight on soon here.

[deb]

You can add in calories with good fats and starchy veg like squash, carrots, and sweet potatoes without getting into the grains, and there are gluten-free grains like millet that aren't pricey if you get them in the bulk aisle at Whole Foods. Millet and buckwheat (which isn't technically a grain) and quinoa (also not a true grain) got me almost all my carbs for a while when I was on the Body Ecology Diet.

[Erin M]

Glad things are looking better!  Are you doing probiotics for him to help heal his gut?

[kim&savannah]

Deb--Those were the grains I was thinking of.  They aren't allowed on the GAPS diet, and Rebecca had symptoms show up after eating quinoa, so I'm a little hesitant, but I may try it.  I think for now I'll add sweet potatoes back in, and I've been eating lots of carrots and squashes.  I had a lot of fruit the other day and we had a mucus flair up last night, so I'm thinking I need to cut that back.  The problem is, I think he might also be reacting to nuts, but if I cut out the nuts and most of the fruit, I'm really left with veggies, meat, eggs, and coconut, which is great and all, but I just can't maintain my weight eating only that.  I can only force myself to eat so much of it.  But I'm worried that losing weight isn't in my best interest right now (even though I love it, for my body's sake!) 

Erin--Yes--we got the Baby Gaia ones that didn't have anything else in them.  they aren't as strong of a concentration, but I think that may be better for starting out anyway.  From what I've read, you can get pretty strong reactions if you kill off too much of the bad bacteria at once.

I just wish that he would actually gain weight.  In the last 2 weeks, he's weighed 11.12 on 3 different scales.  I know that means that he could have gone up a little and we haven't seen it because we haven't been back to the same scale yet (and his last weight was before feeding, so I suppose that means he'd have weighed 4 oz more if I had already fed him, which I had for the other 2 weights.)  But they want him gaining 2 pounds a month if possible, which means I need to see some obvious weight gain each week.

[deb]

Are coconut oil and avocado GAPS-compliant? Those are awesome good fats.

[EloysH]

So the updated recommendations are to keep feeding him as often as possible, breast compressions at the end of feeds to squeeze out as much of the fatty milk that I can there at the end, and if I want to pump, then skim the fat off of that milk and feed it to him.

I forgot to tell you this, I went through this with Kai when he was around 4 months,  as you know i was breastfeeding pon the RPAH diet for a year. He slipped from the 50% to the 25% and dropping. percentile for weight. I consulted everyone and anyone, including two paeds, lactation consultants and early childhood nurses.  Some said put on formula -    But the main concensus was feed more often.  And that is what I did.  I fed him every opportunity and he was waking 3 times a night so I fed him every time.  Within 3 weeks he had gained a record amount and he started climing the percentiles again.   His weight did drop off later a little  and it wasn't until he was 13 months old that he got back to the 50th percentile. But by the time he was about 6-7 months old I had stopped worrying and weighing him  

[kim&savannah]

Eloise--Thank you, thank you, thank you.  That is the type of story I am desperate to hear right now!  I keep just hoping that he's going to have a growth spurt or at least start gaining enough that he doesn't drop any lower and can maintain this % until we start solids (and I'm pretty sure avocado will be his first solid--gotta give him something with enough calories to make it worth it!).  I don't expect him to be 50% until he's a lot older, none of my kids have as babies, but it would be nice to get the drs off my case with the formula.  It's just really nice to hear that it worked out for you.  Do you think the gut healing to a certain degree had anything to do with the shift in weight gain?  I am feeding constantly--gone back to doing a DF even though he was sleeping from 8/8:30 until 3 most nights, but now I feed him around 10 or so, and then whenever he wakes up (which is still by 3 or 3:30).  Last night he actually DF from 10:15 until 11, woke at 12 and I just brought him to bed (I was SO tired) and he stayed there, snacking, sometimes really eating, for 6 hours.  I figure that has got to be good for his weight gain.  I just wish I could get him to eat more of his calories in the day because our nights were actually feeling pretty decent!  But I'll do this over having to supplement.  Oh, and one more question for you--did you lose weight on the diet?  Do you think that affected it?  Do you remember as he started gaining more what your weight was doing?  I'm just trying to get a feel for how concerned I need to be over my diet, beyond the limitations and trying to eat a balance of good foods.  I am having a hard time maintaining with all the limitations, and everything I've read says that I can't really change my supply by what I eat, so I'd rather just stop worrying about that angle and feed lots and enjoy the fact that I am losing the extra weight for once.

Deb--yep, coconut oil and avocados are okay and I'm eating both.   Although everything I eat cooked in the coconut oil tends to make me feel a little sick afterwards.  I've never liked oily or greasy foods.

[EloysH]

Yes I steadily but slowly lost weight on the diet.  It is normal to loose weight because there is absolutely no junk in the diet, every meal is caculated and well planned.   Most people I met onlione who have done this diet slowy and steadily loose weight. It didn't ecome obvious until about 5-6 months, then I started falling below my natural size.  I am usually a size 10, I went from size 12 to size 8-9 by the time I had been on the diet 12 months.  I ate alot of protein and fat but i guess the diet really isn't ideal, one is only doing these things because we have to.  As soon as I stopped breastfeeding I rapidly put weight back on, I think it took 3 months to go back to being size 10, which I am now but less muscle and more fat   

As he started gaining weight by weight loss pretty much remained constant throughout the 13 months i was breastfeeding.

Be careful with avocado. If he does have a salicylate sensitivity, he will react badly as this is a very high salicylate food.  My lO is sals sensitive and is just been enjpying avocado at 18 months old for the first time!

As far is gut healing is concerned and weight gain... hmm let me think.  The weight gain slwpoed down from 3.5  - 5 motnhs old.  Then at 5-6 months that's when he had the big gains.  At 5 months old I had been on the diet about 6-8 weeks so yes it did co-incide with his mucus poos settling.  it took about 6-8 weeks for his poos to go back to being no mucus 100% of the time.  I would say that yes, it is a valid point, if your gut is inflamed it will be harder to make good use of the nutrients that are coming in. 

  Having said that, many babies still thrive with an inflamed gut.  I feel that the frequent feeding was important.  And I also made sure that my boobs were completely drained before switching to the next side so he was getting all the fatty milk - although he was pretty much a one sided feeder from the very start.

HTH x

[Buntybear]

Hi, I also lost weight on our ED. I think that is mainly due to the dairy and convenience foods. I also just ate less as it was a hassle to find meals. 

We had night feeds until he was at least 1 then he weaned himself. I never tried to stop them myself as both our diets were so restricted I wasn't going to restrict him BFs too!

[kim&savannah]

It's been over a month, and things seemed like they were going well.  We had a weight check at 5 months and he'd gained 3/4 of a pound--just enough to make the dr. happy and to keep him on his % line.  But now he just turned 6 months, and it doesn't seem like he's gained hardly anything in the last 2 or 3 weeks.  He was almost to 13 pounds a couple weeks ago--the scale actually did show 13 pounds twice, but tonight I weighed him and he came in at 12.4 or 12.6 (this is all with our bathroom scale which only goes to .2 of a pound).  He has been sick the last week, and spitting up/gagging/throwing up a lot more than normal, but I'm so worried.  We go back in Monday for his 6 mo. check up and I'm afraid he's not going to show a gain at all in the last month!

I keep hoping that we have a growth spurt just around the corner, but so far its just been VERY slow, somewhat steady gains.  I am still feeding him a couple extra times in the day.  I'd feed more, but he doesn't ever seem to care, and I have a hard time believing he's getting much if he just fed an hour before. 

We also still have mucus in the diapers (esp. the last week, but he's been so snotty, that I'm really hoping its from it draining from his head.)  But even before he got sick, it wasn't totally better.  LIghter for the most part, but still there.  So I feel like I haven't really fixed anything.  And yet both the allergist and the gastro I saw told me that there was no reason to stay on a restrictive diet other than the dairy/soy that I have seen improvement with. So if I followed their advice, I really can't imagine that his intestines would heal.  I'm just so lost as to what to do.

[EloysH]

both the allergist and the gastro I saw told me that there was no reason to stay on a restrictive diet other than the dairy/soy that I have seen improvement with

Did they give you their reasoning as to why?

[kim&savannah]

Since he has no symptoms of an allergy or intollerance other than the mucus, they think there's no point.  Except he's not gaining weight.  I don't know if they think that I may be suffering from being on a restrictive diet so they are trying to give me the greenlight to help ME out, or if they think it might help my milk supply, but they can't give me an explanation as to why he has mucus, but tell me its not anything I'm eating.

[EloysH]

Well the other food intolerant symptoms are and you don't need all of them... unsettled, night waking in pain, sore tummy, bloated tummy, wind, unable to resettle without lots of APOP. Does he have persistent red rash bottom, red dry cheeks?  My LO never had much wind, but he used to wake a fair bit at night and his poos would go to mucus at times. He does get a bright red spot on his cheeks when he is teething or having too many salicylates.


Are you interested in finding out about specifc tests on the health of his gut?  most our outside the medical system ( some stoll analysis are wtinh the system so are cheaper) but can give alot of info as to what is going on  (parasites, bacterial over growth, leaky gut etc). Ones outside the medical system are expensive though and you  would be required to find alternative medical practioner trained in nutritional science and biomedicene. Alot of these tests will become mainstream one day and funded by the health care system, but not at the moment.

He could have a parasite, they are easy to be picked up and can pass down from parents. Blastocystis comes to mind. I thought of this because if his slow weight gain. Parasites can cause food intolerance let alone other gut issues. 

 

[kim&savannah]

I've wondered about a parasite.  He had stool tests run with the GI dr.  I don't know exactly what they tested for, though.  I never received a copy of the results, just was told that they were all ok.  I'll ask for sure at his appt. Mon.

He really doesn't have much of any of the symptoms--wind amount seems normal, no persistant rashes--just very occasional diaper rash, doesn't seem to be in pain, NWings are for eating and then he goes back to sleep fairly easily most of the time (this last week, he's been sick, so that's changed up everything).  I guess the only other possible symptom is his cradle cap, but does that always mean something or can it just be a normal baby skin thing?

[*jazzberry*]

Oh so sorry you are still having such a hard time Kim. No advice but many ((((hugs)))))

[Erin M]

Yes, ((((hugs)))) from me too, I wish things were better.

[EloysH]

Eat proteins several times to day to stop your own weight loss - see if that helps.  The problem with rapid weight loss is that it adds keytones to your breastmilk, and as we loose fat we also loose any stored toxins.  I think its ok to loose bits steadily but not rapidly KWIM?

Its worth following up parasites esp if you have travelled to third world countries or Asia. Huge % pof the population are infected with thme and many people can be asymptomatc carriers.

We have just ordered a 3 day stool sample test for parasites for my son.  It will be a few weeks before we get some answers, but working on the premise to rule it out as he still has food intolerances and reflux at nearly 20 months.

[kim&savannah]

I think its ok to loose bits steadily but not rapidly KWIM?

My weight loss has slowed down now as I'm getting closer to my healthy weight.  It's still going down a few pounds a month, but I'm not losing 2 or 3 pounds a week anymore, so hopefully that's an okay place to be at. 

I'll have to see what the dr. says tomorrow.  I haven't traveled out of the US for several years, but have spent time in Mexico in the past--I don't know how long stuff can last with no symptoms. 

I hope you get some answers, Eloise!  It's so tough to be doing everything you can and just not KNOW.

[EloysH]

Its great that you haven't gone below your normal weight. 

Thanks love,  I feel that I have gotten some answers but not all.  Another reason we are going for parasite tests is that his immune system is compromised to any exposure and he would be likely to get infected.  Also, there have been plenty of cases where parasite infections have been found in reflux kids (according to a microbiologist that is helping us).

The main thing we uncovered for Kai was mineral imblances - low zinc / high copper. This leads to gut dysbiosis because zinc is required for over 200 enzyme processes and also protection of the gut walls, production of musin and many other things.   So my Kai basically is lacking alot of the necessary enzymes for digestion at the moment - on top of that no stomach acid due to the meds.  It will take a few months for his zinc levels to start correcting.

 He also has too much histamine in his blood - which means he is undermethylating - and it means his detoxifcation processes are compromised, another reason why he has food intolerances.

[kim&savannah]

You had to go to non-medical specialists to find out all of that, right?  I know that whatever they tested for with the GI was neg. or normal, but I'm not even exactly sure what all they tested.

Well, Dr. yesterday was more supportive, or at least accepting of my stance, than I'd hoped.  She doesn't agree with me (about his gut health or that it means we shouldn't be vaxing right now), but she didn't push formula at all and agrees that getting good quality food into him at this point is probably fine instead of formula.  He doesn't really seem to have absorption issues based on the results of the tests they've done, so its hard to imagine that the formula would be easier for him to absorb.

He weighed 13 lbs .5 oz., so we JUSt made it to 13 pounds which is what I was really hoping for.  Only 1/2 pound gain in the last month, though, so not great.  They are sending us for one last test (which I thoguht they'd already done) for cystic fibrosis.  I'm nervous that they even think that is a possibility, but its highly unlikely and he really doesn't have many of the symptoms other than slow weight gain (but he's still tall for his age, so he is growing) and the excess mucus, but he doesn't have lung mucus build up, even after being sick all last week.  We go in Wed. and should know within a day or two.

[*jazzberry*]

Good luck and ###vibes### for wednesday