feeling bloody miserable -- beware self indulgent rant

[excitedLJ]

My gorgeous little boy is 17 weeks old tomorrow and is ebf. However he has a cows milk allergy and seems to have a few other intolerances. We've been to paeds with him and the jr docs we get fobbed off with are crap - one tried to tell me there is no replacement formula so will need to feed for a year like it or not! The HV seems to have no mind of her own and just jumps on ideas/suggestions I have and tries to make it sound like they were hers, then tried to trick me by quizzing me about what I eat and wondering how I would know if he is allergic - 'and do you eat cake?' WTF?!
I would like to keep him ebf til he's at least 6 months but the guilt is crippling me - every time I eat I wonder if something in there is going to be something he is intolerant of because I eliminated dairy 6 weeks ago but we've still had blood in his nappies twice. He had dropped some weight but is gaining now, although both his height and weight have gone down through 2 percentiles. Just feel like me feeding him is actually holding him back re growth etc and why take the chance on something I eat hurting him. It's not supposed to be like this!!

Oh love have you read kellymom? It is all evidence based information and it may help you:www.kellymom.com/babyconcerns/food-sensitivity.html

There is always something to worry about and we so desperately want to do the right thing for our babies. Have a read of the link. It may help you so much more than what you've heard so far. You can also ring La Leche.

blood in his nappies is not normal :( I'm sorry you're getting such little support from your HV and the paeds - is it worth insisting to see a more senior dr do you think? Is your GP supportive?

Please don't feel guilty (easier said than done I know) - you're doing an amazing job by feeding your DS - just think how poorly he'd be if you were FFing!

Oh poor you. My 5 month old has been on neocate since she was 3 months as she was suspected of having a milk allergy. She still has other problems but the neocate did make things better and it is reassuring to know that there is absolutely nothing in the milk that can be harming her. I felt awful about giving up bf at the time but the specialists were firm about it and I don't care so much now, I just want her to be better. Why not see an allergist? The pin prick test obviously only establishes a skin allergy but they could talk through the other symptoms and it may be that you only need to cut relatively straightforward stuff out of your diet if you want to continue to bf. I don't think you are being self indulgent. All we need do at this stage is feed them and so it is very stressful if that is problematic.

Just seen others have posted in meantime. I do support bf but I don't think it is fair to say that if you ff he would be poorly. Obviously you would use a hypoallergenic formula.

thank you ladies.
Spanner My GP is a star, although he knows very little about this specifically he is at least interested, which helps a lot. I saw him this morning and he has given me a prescription for neocate so I at least have the option if I choose to stop BF. He also said he used to work in Oz and they were great there but feels we get fobbed off in this country by hospitals and consultants etc. He has suggested a letter to the hospital and he will do a covering letter for it - they haven't sent the info on to him either so he wasn't too pleased.
very it is the knowledge that the formula would def not hurt him that makes it so appealing to me. I was supposed to be referred to a dietician by the HV but that never came around... The paeds are saying nothing can prove milk allergy but he is significantly better so just to carry on. It would appear they are ignoring the flare ups we had or refusing to believe i didn't eat dairy at all.
tea thank you for the link. I have probably read it in some half dazed state but will look again later when I get the chance.

My DD was allergic to cow's milk (grew out of it aged 6) - I bf until she was 1, but used soya formula in food, and as a drink from about 6months.

You can get hypoallergenic formula, but we were advised that it tastes rather different, so to try the soya milk first - tiny bit on skin, if no reaction big bit on skin, then tiny bit on lip, bit more on lip, small amount in mouth etc etc. We got the soya formula on prescription, but it was available off the shelf too (Boots, and probably other similar places).

Ask for another paediatric appointment. Complain if necessary that you have been given incorrect advice (no replacement formula!?) - when I was told by GP DD probably didn't have an allergy (so I should just try some more milk and see what happened!!) I went back with "I'm probably just being a fussy mother, but I'd like an allergy test, so that I know for sure, please". Who cares if they think you're being awkward - you're doing it for your son. You should also be given an appointment with a dietician - ours was fantastic. (I found HVs no help at all.)

I cut dairy out of my diet, seemed to make her less sicky.

We were advised not to try egg until DD was 1 (reacted - still allergic to that), and to keep off nuts until 5 (then 7). She's fine with nuts, and I don't know what the current advice is, it may be different.

Good luck with everything. For the future - there are loads of dairy-free foods that you can get - it is awkward, but there are worse things.

I'm sorry veryworriedme I didn't mean to cause offence, I meant he would be poorly if he just had normal "off the shelf" formula rather than hypoallergenic!

excit - some baby's who are allegic to cows milk protien are also allegic to soya, so it should be aviod and if you can cut it out of your diet as well it's a good idea.

It is hard but a lot of baby's woun't take the hypoallegenic formulas as it tast horrible apprently.

You are doing the best thing by feeding him as your milk is the best for him. Have you seen a dietation, you could try a full ellimination diet (should really be done under a dieatition) It mean's cutting everything out of your diet (you have to eat chicken and rice for a few weeks gets very boaring) and slowely reintorducing things, could be worth a try.

Just thought I'd let you know that the Allergies Board here is fab. I thought DS might have cows milk or wheat intolerance and found reading the board really helpful.

Spannerpants, thanks, sorry it was written in haste and probably a tad defensive. It seemed to me that while the op was feeling guilty about bf she was also feeling guilty about considering formula. If it is a milk allergy regular formula would indeed be a disaster!

Also meant to say to the op, yes neocate does smell and taste foul plus it produces dark green smelly poo. The younger the baby the easier for them to adapt to it. We started at 12 weeks and it was fine but you may find you have to mix it with expressed milk for a week. That is if you do switch to it. The advantage is that it is completely invisible to the immune system so if you don't see an improvement in a few weeks then it is unlikely to be an allergy problem. The disadvantage is that it can be a long time to keep expressing in the hope that you can return to bf..... Have you considered lactose intolerance too?

It's definitely worth considering cutting out soya - about 60% of babies with cow's milk protein intolerance also have problems with soya.

DD had CMP allergy discovered at 6 mo when we weaned her and she broke out in rashes whenever she had any dairy or formula. Never had blood in nappies but she was very slow to gain weight and very small and I guess the allergy perhaps was a part of the cause of that.

I never cut stuff out of my diet at all really as I was never advised to. I think if I had needed to really restrict my own diet it would have probably put me off bf. Its a lot to ask. I will warn you though that at 6mo it may not be an easy ride to get them to accept neocate either. DD point blank refused it even mixed with BM or in cooking. The dietician suggested putting milkshake flavouring in but that was a bridge too far for me and I decided to just carry on bf.

I think NHS is quite bad on allergies in general (very few specialist clinics) we never even saw a paed which I really think we should have just the GP and dietician. You can insist on seeing the consultant though. Just ask at the front desk of the clinic. They will think you are arsey but so what!

DD grew out of her allergy at 18mo which was a blessed relief and I think many do so there may be light at the end of the tunnel.