BabyWhispererForums.com
EAT => Food Allergies => Topic started by: bjutka1 on May 19, 2011, 17:06:03 pm
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So after 2.5 months of different diet stuff and EDs, I have give up breastfeeding! I was pushed by the doctor but I also felt that I pretty much exhausted every other possibilities. Even during my strictest diet, Julia was still up every 2-3 hours at night with bad wind and only catnapped. Her poos were never right, only sour smelling, watery and mucousy. I only had one option left but she hates it and so do I.
Can't believe the EDs didn't work and now I have to force this awful noecate on her and she is crying and my breasts are overfull but I can't let her nurse. I keep telling myself that this has to happen for her to feel better and I should be happy for nearly 5 months breastfeeding, some LOs don't even get that much. It registers in my brain but I'm heartbroken.
What if neocate wont' even work? Or it creates other problems, like constipation? Can't see when I'm gonna feel better about this. It's as though I'm mourning this special relationship with her...
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((((hugs)))) it is hard to end a BFing relationship even when it ends on a happy note - no wonder you feel that you have to grieve the end. I hope and pray that the Neocate will help your beautiful LO to feel happy and well.
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((((((hugs)))))) It sounds like you did your very best. I am sorry it didn't work out :(
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Please please don't feel bad or guilty. You are doing what you feel is right for your baby. 5 months is amazing! Please try and move on from this. I understand how sad you must be feeling but you have done an amazing job, this is just the next step. Don't let your feelings spoil this amazing time with you and your lo. Xx
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((((hugs)))) I understand. I stopped feeling abruptly for neocate with DS and then for medical therapy for myself this time.
I found it so hard both times, but did feel better once we were 'all done' and my hormones started to go back to normal.
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Awww, as soon as I saw the title I knew just what the message was going to say. :(
Can you pump a while to help relieve the fullness? In the event she won't take the Neocate, or you have to get her on it more gradually, you'll have, well, SOMETHING in between and can let off the pressure on your breasts at least.
Lots of {{{{HUGGLES}}}} to you - it was bittersweet for me both times, even the time I was the one who initiated it. :-*
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((((Hugs)))) I'm really sorry things didnt work out with BFing for you. I know what kind of bond that creates and its hard when you have to stop. I felt bad not being able to BF my DGS. Just remember you are doing whats best and even tho its hard, things will work out.
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The transition is not going too well. She hates the stuff and so do I, having to do this. I have to keep pumping otherwise I would get mastitis. Have a big supply and it feels wrong to have to dry it up.
Has anyone experienced any negative side effects with neocate? Just to know what to prepare myself for.
Yesterday, I kept trying her with it the whole day and not giving in BFing, but she only took a total of 370 ml all day. That's way too little, right? I then breastfed her through the night as I don't think I could function during the day if e had to battle through the night too and also worried about her liquied intake. Her nappies used to be so heavy and wet and now they are quite light... Not much pee at all.
Wish I didn't have to do this... :(
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Be careful about BFing through the night you don't want to end up with her reverse cycling ie feeding all night and none in the day. As you are happy for her to have a little breast milk why not transition gradually to the Neocate ie start out with 75% breast milk and 25% Neocate and then in a couple of days go to 50:50 and then in a couple more go to 25:75?
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Soooo many hugs to you. Well done for persevering so long - I am only eliminating dairy and find it tough at times (and we pretty much knew this was the cause of problems as Murray has the same). 5 months is a great length of time to have breastfed.
Murray took a bit of time to get used to Neocate (but he was much older) but now LOVES the stuff!! Oliver takes Neocate if/when he has to. I think it just takes time to get used to the taste (and I suppose the fact it comes in a bottle).
Agree with all that pp have said too. Hope your LO is better soon - it will all be worth it to have a contented little girl (and happy mummy) xxx
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I also found this thread which may help... http://babywhispererforums.com/index.php?topic=210474.0;topicseen
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*HUGS*
BTDT :( It is really hard at first, and at times I ached to put DS to the breast (in our case he wouldn't have got much out though) :'(
It takes a while but you can get used to bottle feeding and be just as close - I hated having to do it too at first but now it's fine as he's doing really well, and I can still cuddle him on my lap while he takes his bottle :)
I agree with anna* - mix the breastmilk & neocate for a while until she gets used to the taste.
More *hugs* from me :-*
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More (((hugs))) from here too, and definitely agreeing with Anna. If you breastfeed at night she will refuse to feed during the day to hold out for breastfeeding at night, and then you'll be dealing with the same problem but doing it completely sleep deprived :-\ If you're ok with some breastmilk as you make the transition I would definitely do the mixing idea suggested. That's actually how I got Dylan off of ebm and on to soy when I couldn't pump anymore - it gave him time to get used to the difference in taste.
More (((hugs))) The end of the bfing relationship is always tough, but so much more when you're not ready :-*
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I've BTDT too and it did take a little while for DS to take the Neocate without protest (DD took it no questions) and a good volume of it. If you look back in a couple of weeks though, I'm sure you'll be amazed!
I can so sympathise with how you're feeling about stopping bfing. I felt exactly the same. All I can say to encourage you is that at least at 5months she's not on solids. IT gets so much more complicated when they are. I stopped at 7 months because it was just getting way too complicated figuring out what was related to my diet and what related to his and while pleased I made it that far, I know stopping before solids would have made our lives easier in that respect. Hindsight is 20/20 though!
Hugs, but I agree - I think you need to go cold turkey on her otherwise you're just going to end up with her reverse cycling.
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Thanks for all the support, girls! Yesterday seemed to be a better day - she took the stuff more willingly. I started to feel slightly better about it too and don't break down in tears every hour or two... Still just wish I could breastfeed like any other "normal" mum but have to accept that she has these problems and will hopefully grow out of them soon.
When the doc and dietitian pushed me to make the switch, one of their point was that when it comes to weaning, it will be a nightmare.
Only thing is, neocate seems to be giving her very smelly gas - anybody else experienced this? Also worried about constipation so I still mix the formula with BM. That way, I figure, her little system gets more of a chance to get used to it.
Oh, what does BTDT mean?
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BTDT= Been there done that. I'm glad she's doing better with it. It will get easier with time. (((hugs)))) stay strong, your a wonderful mom.
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How long on neocate before I should see improvement?
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Hi - just saw this and couldn't help but offer {{{hugs}}}
My lo was put on Alimentum, very similar situation when she was around 3 mos. She also reacted to that so I continued to bf on an ED, and we struggled. I never found out what that final 'trigger' was for her. I just finished bf'ing last week and the soy milk she was doing fine with finally started reacting in her little body due to the amount she was finally on. We transitioned to Nutramigen. I went with the mixing idea and pumped off the pressure but didn't give her any. One thing I would recommend is if you're still giving the odd bf but know you're definitely going to be done, is to have a good feed and call it quits after that. End it on a good note and go forward. Don't forget that your hormones are a bit wonky right now due to the stopping of constant feedings so don't beat yourself up for being emotional. I'm crying over everything this week and struggling for ending although it's for the best.
E got better almost immediately after my breast milk and the soy milk was out of her system. I really hope the same for you. She actually slept through the night last night for the first time and she's over 1 now. She's happier, and it was a rough bit at first trying to get her until I mixed. We still have our cuddles and I'm the one who does the bottles and she gets some skin to skin contact but I'll be completely honest that it's more for me as much as she likes it too.
More {{{hugs}}}. Mummy guilt is so hard when bf'ing is concerned. There's nothing wrong with either of you - circumstances just weren't right for you to continue. I commend you on the ED. I did one for 6 months and it was hard.
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Thank you! You're right- this is a killer. I'm back to crying loads, just finding it sooo difficult. Keep wanting to let go but I can't seem to be able to do it. If she was older, it would be easier but she is only 5 months next week. At least you can say that you have breastfed your LO for so much longer!! It's hard to understand that a synthetic man-made stuff put together in a factory is better for her than my milk.
Plus I keep getting advice from my home country (I'm not originally from Northern Ireland) that breast is best and when allergy is concerned the longer you breastfeed the better...
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Oh hun I am so sorry this is so hard for you. No advice I am afraid but Olly had allergies and he was EBF till he was 14 months xxx
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Plus I keep getting advice from my home country (I'm not originally from Northern Ireland) that breast is best and when allergy is concerned the longer you breastfeed the better...
as is the case here. It's hard to hear that when you're in the position of making such a difficult decision. I still feel twinges as I'll always wonder if I should have carried on even though E is doing much better on the hypo-allergenic formula. My lactation consultant (who was a Godsend when E was a Failure To Thrive) had a saying: "Breast is best until it's not". I really held on to that.
The other thing I wanted to mention was what I copied from another thread:
You Have Done THIS:
Reasons To Be Proud
First Feed:
For baby - helps to stabilise baby’s blood sugars and protect baby’s gut.
For mother - a great opportunity for the first skin-to-skin cuddle.
1 Day:
For baby - the antibodies in mother’s colostrum provide natural immunity from infection.
For mother - helps womb to contract to normal size.
2-3 Days:
For baby - sticky black meconium is cleared more readily from baby’s bowel.
For mother - instant relief for hot, swollen breasts when milk comes in.
1 Week:
For baby - transition to world outside womb is eased.
For mother - frequent feeds mean time to sit or lie down and for you to get to know each other.
2 weeks:
For baby - food & drink always ready at the right temperature, adapting to the baby’s needs.
For mother - hormones help you to get back to sleep after night feeds.
4 weeks:
For premature babies - lower risk factors for heart disease in later life.
For mother - saves time sterilising and making up bottles.
6 weeks:
For baby - half the risk of chest infections now and up to 7 years old.
For mother: Breastfeeding likely to be easier and you can go out and about without bottle feeding equipment.
2 months:
For baby - lower risk of food allergy at 3 years old if breastfed only.
For mother - reduced risk of ovarian cancer in later life.
3 months:
For baby - five times less likely to get diarrhoea now and a reduced risk for the whole year.
For mother - fewer visits to gp as baby is less often ill.
4 months:
For baby - Half the risk of ear infections. Less risk of asthma now and protection continues for up to 6 years.
For mother - feeling of empowerment at having been solely responsible for growing your baby for 4 months.
5 months:
For baby - five times lower risk of urinary tract infections.
For mother - a lovely way to reconnect with the baby if you go to work.
So yes, the longer you go GENERALLY the better. You have done this much. I won't try to talk you out of the guilt as I still feel it daily when E happily drinks her bottle of synthetic formula and I wonder what's in it. But I can tell you that you're not alone, and you have a ton of support for the gift you've given and for the hard decision you've had to make. You're allowed to be upset, as it's tough not being able to do what you feel is so natural and proper. You're a great Mummy :-*
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Thanks, Vicki - wonder how it goes on???
At the minute she is about half noecate, half breast cos I just can't give up and she seems to be doing really well. I'm really hesitant what to do. One minute I think it would be for the best if she was on it completely, the next I'm crying my eyes out and want to go on. The doc seemed to think that I'm harming her by going on and the latest research says breast is NOT best when it comes to allergies...
Wonder could I keep doing half and half? Though I think this would annoy the hospital people very much. Don't know if I would get their support when it comes to weaning...
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Though I think this would annoy the hospital people very much. Don't know if I would get their support when it comes to weaning...
Am not sure what hospital you are going to but my friend sees the paed and feeding team in the Ulster in Dundonald. They had told her to stop BFing when her LO was 4/5 months due to allergies and move to neocate and she was devastated but was finding the ED very very difficult so took their advice. She couldn't cope though with giving up BFing and her LO wasn't doing that much better on the neocate (which i guess is different as you are seeing improvement) so she went back to 1/2 BFing, 1/2 neocate and then back to EBF and is on a very restrictive ED. Initially the feeding team were not impressed but they supported her when they saw she was determined. Her LO is 7 months now and doing really well and weaning is going really well. Did the doctor give you the research to read through?
Am not sure how the hospital responded to my friend not keeping up with the neocate but I'll ask her and i know they were supportive in the end when she told them she was determined to follow the ED.
{{{{hugs}}} Must be really tough to make this decision xx
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This is the hospital I'm going to! Is there any chance I could contact your friend? Do you think she would mind?
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How are things going sweetie? Been thinking about your situation a lot, as it brough a lot of mine back.
Just to give you a little background - E was a Failure to Thrive and I was pressured from Paeds and family to quit bf'ing. We tried Alimentum which made things worse, I was an emotional wreck with the decision so I continued to bf. If your lo is no better on the formula I can certainly understand why you want to continue - I've btdt. The ED is very hard but there's a lot of support here. These ladies literally kept me sane in a very dark time.
You are doing a great job and the fact that you're this upset shows you really do want to fo the right thing. I hope you're getting some support IRL.
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This is the hospital I'm going to! Is there any chance I could contact your friend? Do you think she would mind?
She wouldn't mind at all. I'll text her and ask her and let her know you'll be contacting her and PM you her details. I had hoped you were going to the Ulster as I thought she would be able to help xx
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Thanks. Looking forward to talking to your friend!
Julia has never been Failure to Thrive, she is around the 50th percentile. BUT she IS highly allergic. My diet has been very strict (potatoes, rice, root veg, pears, chicken and lamb) but I have never been able to reach a baseline. She improved but still only catnapped, was up loads at night with wind and there was always mucous in her poo...
Would so love to go on breastfeeding but I'm not quite sure what else I could eliminate from my diet... Part of me really wants neocate to work. I think I have to give it a trial. Just want her to feel better! It's a terrible feeling though when I feed her from the bottle and feel my milk letting down. Or when she is crying and I can't feed her but have to run to get the formula ready. And she is wondering why I'm not responding to her promptly like I used to.
It further complicates things that I also have a young toddler who is only a year and a half and he has been very jealous the last week or so. Probably senses that my focus is on Julia and my despair that I have to stop breastfeeding - it really is pretty much consuming me... So awful. I completely understand what you're saying, Vicki about this being a very dark time...
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so many hugs xxx
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I know exactly what you mean when you say it's consuming you as I was so there 8 months ago.
I have no advice in that department as I really struggled there too. I felt that I was ignoring my twins and they knew where the focus was. Just a thought though, as I've been doing it and find it helping as E demands to feed NOW. When I know she'll need a bottle within about half an hour to an hour, I'll get one ready and stick it in a bowl of warm water to keep it nice and toasty for her. The can instructions say it's good for an hour and a full day in the fridge. I make them up in the morning now when the girls are eating (perhaps this is something your older lo could do) and keep them in the fridge. Around the time I think she'll be looking for one I'll pop it in the water and it's already ready to go. Less grumpy baby, less stress on me, less chaos from the girls.
More {{{hugs}}} I can't remember but is she medicated for reflux at all?
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Sorry re bottle help - perhaps this is something your older lo could HELP do.
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I could cry for you Hunxxx I was fortunate enough to be able to BF till 14 months but believe me we did not have an easy time with it. Only in the last couple of weeks have we taken out high fructose foods and nights have settled down a bit.
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Major hugs, I only just saw this :(
I was going to say what did you decide with regards to half and half? I think that you can do that, if she is better, they why not?
many ((hugs))
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Just wondering how you're doing? :-*
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Hi, I'm back! We have made it to about 70% neocate and 30% BM. I know you guys won't agree but I still breastfed her through the night. It's so tiring to be putting light on and warming neocate etc. Especially since she wakes very frequently at night. Last night's wakings looked like this: 22:40, 1:15, 2:55, 5:10, 6:30 and 7:30. Surely this is not normal? I always thought that baby insomnia was a sign of food intolerance but with 70% neocate should this not have improved somewhat?
I can see a bit of imrovement on neocate that she is easier to settle to sleep but she is still just as windy and the wind is now really smelly... Her skin is also a bit better though the eczema and cradle cap hasn't cleared completely.
Yesterday afternoon she was really constipated from the neocate and it took me putting a thermometer up her bottom to actully get her to poo. I got so upset at this that I breastfed her in the evening and through the night and I got beautiful textbook breastfed poo in the morning, no mucous at all.
So now I'm back to thinking that I don't wanna give up breastfeeding.
Any ideas?
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That number of NWs is what makes me worry that she's reverse cycling at night. I wouldn't expect her to need more than two feeds overnight.
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The thing is that she has always been like this. Even when she was EBF.
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The only problem with continuing bf is that you are not going to get clear results. The only way to be sure if your lo is reacting to your milk is to go 100% neocate while expressing ad dumping/freezing. This way if your lo makes huge improvements you may feel better about changing to neocate. If your lo does not show improvements then you can go back to ebf. Obviously this is just my opinion though.
Kelly
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Maybe the NWs are habitual at this point? When she was younger obviously discomfort was at play but if you think she is feeling better, at 5 months I think it is reasonable to settle some of those NWs without feeding. YOu both need the sleep.
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The only problem with continuing bf is that you are not going to get clear results. The only way to be sure if your lo is reacting to your milk is to go 100% neocate while expressing ad dumping/freezing.
Yes agree, if that is important for you to "know". Otherwise if it's not important to ascertain whether your milk truly is the main irritant, then don't worry just continue to do both. You seem to have conflicting evidence - the skin clearing on one hand and then the nice BM poos after a night of feeding. So you won't truly know until you do the trial at 100% formula, hard I know.
As for the night feeding I tend to agree with Anna, the issue would more likely to be an association with feeding rather than a food intolerance symptom. If it was food intolerance related, you would expect her to be in pain when she wakes, and but you would expect that a BF would NOT get her back to sleep, she would be struggling to get back to sleep due to discomfort.
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Okay, so I haven't had time to read through all of the responses, but wanted to chime in as another BTDT!!!
If you're in the mood to read about our story - http://babywhispererforums.com/index.php?topic=165003.msg1842089#msg1842089 but the quick version is that I was very heavily pressured to stop breastfeeding. Like to the point of the doctors telling me that my daughter could have an acute fatal reaction if I put her to the breast even one more time ::) - and this was after almost exclusively BF'ing her for 9 months already.
What I found was that (especially at big children's hospitals) it is much more convenient and even, I admit, effective (as far as *quickly* figuring out what's going on) to have a mother stop breastfeeding if the child has any sort of GI issue. They don't have the time to take each and every case on such a personal level - they're trained to get the kid on a baseline of foods that are not reacted to and the best way to do that is on an exclusive diet of elemental formula like neocate.
In our case, I was presenting such problems for the poor doctors that one finally broke down and told me that even one sip could kill her ::) Oh it was so stupid. But of course it terrified me - I was so torn. I wanted to figure out what was going on, but she would not accept the formula (we are a good example the fact that an older child will not accept the formula - she ended up on an ng tube and the whole thing was a complete disaster).
Anyway, I obviously have some baggage with this, so keep that in mind. But if it were me, I would continue to try and get some formula in her to get her used to the taste, but not completely let my milk dry up. Also keep in mind that if you think you might want to go back to BF'ing, they can forget how to latch pretty quickly. It took only 2 weeks for me and I was heartbroken (although with a lot of hard work and pressure to get her back on the breast because she couldn't tolerate the formula via tube, we got to a point where she re-learned it)
But I honestly think you're doing the right thing - I don't think there's anything wrong with taking it slow though. Docs don't always understand the BF'ing thing. Take is slow and know that you're doing good:)
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Question: Are any of you with these "allergy" problems going 8+ hours at night without nursing? I ask because I read an old doctor's advice about never feeding a baby at night because her digestive system needs time to rest and heal, and cannot do that if it is constantly digesting!
I was nursing what seemed all night long and we've had diarrhea for over 2 weeks! I'm making it 7 hours currently (trying to extend it each night) and have seen this progress: reduced poo down to 2-3 a day from 8-10, less smelly, and less gassy, very few spitups if any - but still dark green and thin poo, and cannot nap more than 30 or 45 minutes (unless I'm wearing her in a sling). I know she's still tired, but her legs jump around and the swaddle only contains her arms (when she doesn't pull them out). She puts herself to sleep so I know it's not our ritual. I was about to give up and just call the doctor again (I know what we'll go through - more I don't know's and let's strip down your diet even more and add medications or supplements). But I just read that even with eliminating a milk allergy, it can take 2 weeks to heal. So, now I'm thinking I'm on track. I also jumped to a 4-hour feed during the day, which is hard when baby won't sleep, but she seemed to be okay with that feed. Only I was a bit engorged which makes it harder for her to get all the way to the fatty milk, (which she needs to keep from irritating her gut from "lactose overload"?), so I pumped off the top a few times to relieve that and it also seemed to help. But I may go back to a 3 or 3.5 hour schedule, I'll see how today goes. I hope I haven't diminished my supply too much.
One other thing, this "old doctor" also said, "An angry mother's milk has been known to kill the nursing infant." I've struggled with frustrations over my 5yo and his new-found lack of discipline and attention, my needy husband and our business I've also neglected, and my resentment towards a midwife at my 2-week checkup who strongly suggested that I change my 3-hour day and 5-hour night-feeding perfectly healthy baby, to a 2-hour day and 3-hour night because she may not be gaining as much weight as she should. I so wish I had not listened to her - it all seems to have started here. Gassy, reflux, no longer sleeping well, nursing all night long, a nonsensical daytime routine, and totally scatter-brained and sleep-deprived mother! I've been so mad about this! I'm trying really hard now to relax before I start feeding and think happy thoughts. My husband and son have gone to grandparents for the weekend, so I have some quiet time for a few days! Just trying to get this figured out soon!
I hope you haven't had to give up breastfeeding yet. Yes, it doesn't seem right that the best thing for a child can somehow harm them? I just keep wondering if the old doctor is right? Are we just OVER-feeding them? Are the little "seedy" specks really just undigested milk curds, and not necessarily a sign of a healthy poo? I saw a mom comment on here somewhere that her baby's poo is green after she's been a little engorged (like in the morning). Makes sense then that by not getting to the fatty stuff at the end would irritate. Here's an awesome link to a better explanation of foremilk/hindmilk - http://thefunnyshapedwoman.blogspot.com/2011/05/foremilk-and-hindmilk-in-quest-of.html
So, do you think I'm on the right track, and do you think it may help your situation to cease the night feeds? We had a difficult night or two so far, but it's been worth it!
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I really jumped around with that post, sorry! I believe the diarrhea trouble began when we started falling asleep during the night feeds, not finishing, waking up an hour later and trying to finish. This is what I mean about all night long. Our days were already difficult with the naps, but the night had been fine with only one or two feeds, until we started falling asleep during them. So, I think that she was already being "over-fed", and then we created a 'lactose overload" situation that really irritated a fragile digestive tract, so now anything I eat will cause problems unless I can get her system to heal itself. My analysis. And I don't think that feeding her more or changing to formula solves it. It may make the diarrhea stop, but sets her up for a different set of possibly lifelong problems. Do I sound crazy? Okay, maybe so, but I just want to know if anyone experiencing these problems was actually going all night without feeding. If so, I'll give up on this theory and go along with the doctors' guessing game. ;) I just feel that this is the golden clue. (whatever that means? can you tell I'm sleep-deprived?! LOL!)
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I really jumped around with that post, sorry! I believe the diarrhea trouble began when we started falling asleep during the night feeds, not finishing, waking up an hour later and trying to finish. This is what I mean about all night long. Our days were already difficult with the naps, but the night had been fine with only one or two feeds, until we started falling asleep during them. So, I think that she was already being "over-fed", and then we created a 'lactose overload" situation that really irritated a fragile digestive tract, so now anything I eat will cause problems unless I can get her system to heal itself. My analysis. And I don't think that feeding her more or changing to formula solves it. It may make the diarrhea stop, but sets her up for a different set of possibly lifelong problems. Do I sound crazy? Okay, maybe so, but I just want to know if anyone experiencing these problems was actually going all night without feeding. If so, I'll give up on this theory and go along with the doctors' guessing game. ;) I just feel that this is the golden clue. (whatever that means? can you tell I'm sleep-deprived?! LOL!)
Hi Suzymoreland:)
Well, our case is a little different only because dd has a specific form of food intolerance (FPIES) - not so much irritability and diarrhea, just very severe GI episodes only when she eats certain foods - she's older now as well - 2. So we're not BF'ing as much, but still do - even once or twice at night still, so your theory may have some merit;) lol - but from what you describe, I wonder if your own experience with your lo may have been more of a foremilk/hindmilk thing as you hinted to. The thing that popped out at me was you mentioning her feeding a little bit, falling asleep, then feeding a little more later on. So she'd get lots of foremilk that way and not as much hindmilk - I'm pretty sure that can cause a looser stool in some kids and even the gas and discomfort you were talking about.
anyway - it can be such a puzzle to figure out what's going on, can't it!?!?
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Thank you. I hope it's as simple as the foremilk/hindmilk thing too, and I just need to be patient to let it work itself out now that I've decreased my supply some. Best case scenario, we come out of this with a happy, tummy-trouble-free baby that goes all night without feeds! Right?! I'm willing to put in the work for that! Hoping for 8 hours tonight!
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Hi guys, just back to let you know how things are going.
Unfortunately (or not) she IS doing better on the formula. Sleeping better, less windy and generally happier. The truth is that every time I started to feed her more frequently myself (because I just couldn't let go and kept thinking she would be fine on BM) she got worse. So yesterday we invited friends round for a bbq and I had some too. This was the only way to ensure I wouldn't feed her again. It still breaks my heart but I have to do what's better for her, right?
So it's gonna be neocate for a couple of weeks then weaning. (No doubt I will be back again then!)
Thanks for all your help and encouragement - it meant a lot! Wish I could have gone on longer but we only lasted 5 months and 1 week. Still doubled the time I breastfed her from when they originally wanted me to put her on neocate...
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Sorry it didn't go as planned but great your LO is doing better. You did fantastically to b/feed for so long with all her issues, and the main thing is she is happy and healthy :)
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Great job, Jutka. You can be very proud.
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Yes - you SHOULD be proud! Not only of BF'ing your lo for 5 months, but also for having the guts and love for your lo to make a tough decision - something you yourself didn't want to do, to nurture her in the best way possible.
The truth of the matter is - some children really DO do better on an elemental formula like neocate. Despite all of my own negative experiences with a similar situation, I'm still very happy that we live in a time when formula is available for children who truly need it, and grateful for the doctors who help us try to figure out how to help our lo's grow and thrive.
Hope you can begin to feel some peace with the decision.
Unfortunately (or not) she IS doing better on the formula. Sleeping better, less windy and generally happier.
I understand why you wrote it in this way, but now practice saying "Fortunately, she is doing better on the formula!" :-*
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Biggest of {{{hugs}}}. I KNOW how hard this has been and you have done so wonderfully.
I highly recommend some skin to skin time when giving her bottles - it helped me so much.
You are a wonderful mummy to her. :-*
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Wish I could have gone on longer but we only lasted 5 months and 1 week. Still doubled the time I breastfed her from when they originally wanted me to put her on neocate...
I am really happy for you that you got this far, really, you jumped through every hoop possible to keep breastfeeding, I honestly don't know what more you could have done :D And you really didn't have much support from your health professionals to breastfeed or to support an eliminationdiet so that makes it even more amazing :D The fact that you ate such a restricted diet for so long shows how committed you were to breastfeeding. We just want the best for our LO's and the fact that she is doing better on neocate is great news really, you have found a way to make your baby comfortable. :)
I hope you enjoyed the BBQ ;)
And again, I hope you can feel immensly proud of yourself and take the time to have someextra cuddles with yourlittle one whilst you are weaning. Well done.
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Oh girls! I can't believe I'm back with bad news so quickly. Just had Julia screaming for over an hour and half with TERRIBLE wind and constipation from neocate. In the end I had to put a tube up to help her poo. And honestly, the crying was awful- she last cried like this before I started the EDs. So I'm really upset...
Is this to be expected when you first start neocate fully? Should it get better in time? How long before the stuff I ate yesterday and this morning clears from my system? I'm thinking I can't have her cry like this - half and half was the best so far. If I have to, I will go on with the diet if half and half helps her best...
Wish I never had the bbq. (It was nice but made me sick - was up all night running to the loo...)
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Oh {{{hugs}}} sweetie. So sorry this is happening to you :'(
If there was milk unfortunately it can be up to 10 days until it clears your system. My public health nurse did advise when my twins were constipated to the point of bleeding that a tsp of sugar in the bottle could help things along. Have you considered trying another type of formula?
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Serioulsy! 10 days - I did have some chocolate and a small ice cream. Can't believe that I was so stupid. I thought it was the best thing - making sure that I don't cheat and feed her when it's better for her if I don't. Now I'm not so sure...
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So are you sure that she's reacting to something in your milk? Have all other possible causes been investigated?
Like I said, my lo did horribly on elecare (same as neocate), but her ng tube could have also been irritating to her (she would vomit profusely after feedings, although she seemed to do fine with BM through the tube - it's hard to know what was going on) You're not really supposed to be able to react to elemental formula ??? But I swear mine did.
what IS normal when first starting that stuff is lots of mucousy poo - perhaps it's normal to be a bit windy as well :P I don't know - see what the doc says...
What I would wholeheartedly recommend right now is, whatever you decide to do, try to pump and keep your supply just in case the formula doesn't work out. There are so many unknowns right now!!
{{hugs}}
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Neocate can be constipating. I know some people have to give their children a gentle laxative to help with this. Would your lo drink some water from a bottle to help with the constipation?
Kelly
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Question: Are any of you with these "allergy" problems going 8+ hours at night without nursing? I ask because I read an old doctor's advice about never feeding a baby at night because her digestive system needs time to rest and heal, and cannot do that if it is constantly digesting!
Yes, we did. DS took a DF of EBM at 11pm (I pumped around the same time) then didn't take a BF until 7.30am from about 2.5mo. He slept through pretty quickly, dropping the 2am feed first then the 5am feed without any encouragement from me - he wanted to sleep!
Unfortunately it didn't make any difference and he ended up on HAF at 5.5mo and I dried up within a month :( Now he's doing great, has caught up on his weight & growth and hasn't been having the same digestive issues he used to :) He has a pretty severe reaction to cows milk protein so I won't be trying him on any dairy until he's at least 1 year.
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My DD also started STTN at 9weeks (df at 10pm till 7am). I didn't eliminate dairy from my diet until 12 weeks. It was eliminating dairy that changed gave me a different girl. No change just from not feeding over night. Good theory, and it might help to have a break from digestion but I definitely don't think it's the holy grail.
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I think some symtomps are the same when it comes to too much foremilk (wind, mucousy poo, green poo, unsettled) but there is so many more symptoms with allergies, unfortunately...
Just spoke to people in the hospital. They reckon the constipation is from the changeover and should settle within a few days but if it doesn't, a mild laxative will do the job.
She is definitely sleeping better on the HAF so that's good news. I'm still pretty miserable and crying loads though. Just feel an extreme sense of loss...
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It must be a very sad time for you. Even when I weaned at 13 months i felt a great sense loss, it did pass though.
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More {{{hugs}}} sweetie. I understand the loss, and understand how it is harder to see them doing better on haf when all we hear now is how breastfeeding is the best. E's first full day on haf she sttn for the first time and she was 12.5 months old. I felt guilty for bf'ing so long and just an emotional cycle.
It WILL get better, and you WILL feel a bit better.
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dropping off some more {{hugs}}...
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*hugs* time is a great healer and though you are sad now take heart in that you have done your best by your LO. xx
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This must be so emotional for you. Just remember how hard you have worked to be able to bf your dd this long, you have done an amazing job. There are lots of mums on www.kidswithfoodallergies.org that have/are going through the same kind of experiences. When my ds was a baby I bf him until 4.5 months and then mixed fed to 6 months. My ds had severe atopic eczema from head to toe, had horrible bowel movements and lots of wind. Whilst EBF I asked the GP, Dermatologist and HV if my ds could be allergic to something in my diet. I was told definitely not, it is just eczema you will have to learn to deal with it. When formula was given his eczema got worse and we were still told that it was not related to food allergies. Weaning was a nightmare, he reacted to so many foods. When my dd was around 10 months he had got to the point where he could not eat properly, was sleeping a max of 3 hours in a 24 hour period due to the intense itch. We took him to the A&E department at our local hospital where our friend works as a paediatric nurse, she met us there and came with us to make sure he got seen by 1 of the paediatric doctors. We were given a referral to a consultant and also given piriton to help him sleep. The first thing the consultant did was have him tested for food allergies due to the severity of the eczema. My lo turned out to be allergic to dairy, egg, nuts, peanuts, wheat and soy. At this point my ds was prescribed neocate and we made sure he did not consume any of the other allergens. My ds gradually improved and weaning became a whole lot easier because you could tel straight away whe his skin was flaring wher before his eczema was that bad it was hard to tell. My ds could not eat stoned fruit, citrus fruit or berries until he was around 4 years old. He could not eat apple either unless it was cooked. Vegetables were also limited, he ate mainly sweet potato and butternut squash. We were limited to lamb and turkey regards to meat and poultry. Things have improved as time has gone on. He is still allergic to dairy, egg, nuts and peanuts. We are not sure about soy but don't give it for other reasons.
Sorry I have rambled. I hope you become more comfortable with your decision as time goes on.
Kelly x
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That sounds terrible, Kelly! How did you survive on such little sleep? I'm sure your heart was breaking for him. Awful!
What sort of allergy test were you able to get done? I kept asking about testing for allergies but I was told it can't be done. They did a skin test on her when she was 11 weeks old but that came up negative. Is there anything else like, say, a blood test?
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For us, testing involved the skin prick test, which I think is the most accurate for detecting true allergies. Blood tests are also done but I don't think they are as accurate as the skin test. Maybe someone else knows more about that and can confirm.
The problem with a lot of the issues that babies have with feeding is that what they're suffering from are not true allergies, so they will not show up on an allergy test. Much of the milk/soy protein stuff is actually more of an intolerance.
Since dd's intolerances are so severe they require hospitalization, we did a skin PATCH test - different from the prick. It's where they put a bit of the food on a little metal disk, tape it to their skin (usually on the back) and you leave it there for 24 hours or more and then go back to have it 'read'. My dd reacted to several foods on the patch test - some very obviously, while she also didn't have any reaction to the skin prick test. And I know it's at least somewhat accurate in her case because the two foods that did cause such intense GI reactions - sweet potato and squash, came up all red and angry on the patch test. She also tested positive to egg, dairy and soy on this test, so we are avoiding those as well.
Maybe it's worth investigating a patch test. It's not 100% accurate, but does give some good info.
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You can have a blood test done, it is called a RAST test. This is what James had done. It can be hard to get them done on babies as the results are often not accurate. Having said that the test results are only guidelines as the only way to be 100% sure is to follow it with a food challenge.
The lack of sleep was hard to deal with especially as we have a dd that is 18 months older than ds. It was tough but we got through it. At the moment we are trying to discover what James keeps reacting to. He has had 3 anaphylactic reactions within 3 weeks of each other, but that is a whole different story.
Kelly x
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With the RAST tests, they're actually testing for antibodies in the blood that would indicate an immune response, a true allergy, as opposed to an intolerance.
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Now James sees an Immunologist he has had skin prick tests aswell as RAST tests. Of course if your dd's reactions are intollerances rather than allergies then these will not show up on either of these tests.
Kelly
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Allergy tests are so hard to make sense of. E breaks out in hives and eczema, wheezes and has blood in her stool from just a mouthful of milk. Her milk allergy test (RAST) was negative :( I was literally dumbfounded when told the result. This was after months and months of eliminating milk from my diet and I KNOW she has an allergy or at least a severe intolerance. So I just flat out refused to give it to her regardless of the test result. After speaking with a dietician, I now know how finicky those tests can be. She even cited one child who had an anaphylactic reaction after testing negative to a substance. So yes, testing is great, but not always that reliable :( I'm not sure if this is why so many hesitate to test so young or if it's because their IGE hasn't matured enough to show in their bloodstream. Regardless of the reason, it's so hard when you can't find things out instead of trial and error.
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So I suppose the allergy test is really not the way to go then...
Just spoke to my sister who suggested breastfeeding her once a day if I miss it so much. But surely I can't do that?! Or I would need to go back on ED. Otherwise would I not be harming her?
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Don't forget that the skin *patch* test helps to detect intolerances (different from both skin prick and the blood - RAST test). Even though not a true allergy, intolerances can sometimes be very very severe (like I said in our case, requiring hospitalization). Look into a patch test! It could give you some very helpful info on which foods could be causing some trouble.
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If your dd is improving the I would not personally start bf her once a day at this stage. If you do want to though (which I fully understand why you would want to) you would need to go on an elimination diet again, otherwise surely all your hard work wold be for nothing. Your dd would be back to reacting terribly to your milk as she was before the elimination diet.
Hugs Kelly x
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Just spoke to my sister who suggested breastfeeding her once a day if I miss it so much. But surely I can't do that?! Or I would need to go back on ED. Otherwise would I not be harming her?
I thought about doing this, but it seemed a bit crazy to be on such a restricted diet for 1 feed a day :(