Out of interest how many of you with CMPI kids are under a dietician?

[BNmum]

Im curious to know how many of you with CMPI kids are under a dietician. If you are EBF are you also under the dietician?

Lo is 8months (diagnosed at 2months by paediatrician) and EBF. I'm on a dairy free diet and conscious of both of our nutritional requirements but not sure if both are being met adequately. We just seem to be 'winging' it and I get the impression that my GP doesn't believe in CMPI. Should we be under a dietician?

I saw a dietician with DS. She wasn't massively helpful and tbh. I had read a lot, I'm an HCP and knew more than she did about substitute milks and vitamin supplements for example.

I've found MN more useful really.

I really do not rate any of the NHS dieticians I have seen, or NHS diet advice I have been given. I asked to see a dietician when pg with dc1, be ause I am lactose intolerant. I ended up telling HER about the different dietary sources of dairy and their relative bioavailabilities!

When I discovered that my dc were CMP intolerant, I did not bother getting it 'officially' confirmed by the dr, not did I seek NHS dietary advice. Clearly my own knowledge and research was just as good, if not better.

Duh! Not dietary sources if dairy FGS. Dietary sources of calcium, of course.

DD had cows milk protein and egg allergy. I breastfed til she was 2.5 and was dairy and egg free for that time (after diagnosis).

We got given a book by the hospital dietitians department, met the dietitian briefly at the allergy clinic and were given a number to ring if we wanted to.

I didn't find the dietitian particularly helpful. She seemed uncomfortable with breastfeeding (seemed horrified by breastfeeding a one year old and, looking back, made some bizarre comments). She kept trying to get me to give DD soya formula "so she has more variety". I would assume most dietitians wouldn't be like this though!

I found online research the most useful.

Interesting feedback. Sounds like it is possible to do this alone and I shouldn't feel guilty for not requesting a referral.

wow! well done hanging! Did you return to work during that time and if so did you express for your dd or did you also introduce some formula?

Thanks I returned to work when she was 1. She just had alpro junior soya milk as a drink from a cup in the day, and I breastfed her morning and night. Sometimes all night!

It was tiring at the time, but lovely. Dd sort of remembers. She is 3.5 now, and no longer allergic to milk. The other day she said "I was a baby cow, and you were a mummy cow and I went (slurp) for milk". She also asked me if she could milk me into a bucket if she could find one!

just wanted to add a positive story; i am under a dietitian and she's great, able to give me more information about cmpa than the doctors were. Also if you have to go dairy free you should be able to get calcium and vit d supplements on prescription so it might be worth asking about that

Oh hanging that's adorable! It would great if I could just get lo to breastfeeding morning and evening. I'll be returning to work in the new year (lo will be 9.5months) so would feel better if I could get him to get some specialist formula when in childcare, he isn't showing any signs of dropping feeds at the minute but I live in hope! Our gp has prescribed nutramigen aa so we'll give that a go.

Thanks for the info ruth, at what point did you get referred to a dietician?

bnmum immediately, but ours was a slightly different situation; LO was 3 weeks old at the time with a lot of blood in his stools. We were in a&e over the weekend and the dietitian rang me on the tuesday, saw me on the thursday. My feeling though is that shes the person with the most knowledge about cmpa way better than my unhelpful hv and it seemed like it was just procedure to be referred.

Crikey ruth, that sounds awful! I hope your lo is doing a lot better now. Is he on prescription formula?

The nutramigen didn't go down well at all, even though I diluted it with breast milk (4oz bm with 1oz formula). Will try again today....

I didn't really manage to stop feeding during the day until I actually started back at work. DD was willing to accept an alternative from others, but not while I was around.

Nutramigen tastes pretty rank, I agree with people who say it is hard to introduce to babies old enough to realise they can refuse it! You could maybe try using it as an ingredient e.g. with cereal to help your wee one get used to the taste.

Alpro 1+ seems a lot more palatable. Might be worth asking if it is OK to give earlier if you are still BF as well. I think the BF might make up for whatever is lacking in the alpro (maybe fats).

My DS2 was milk and soya intolerant. We did see a dietician but waited so long for an appointment I'd worked most of it out myself by then. I think he was about 10m when we first saw her and then 6 monthly until he outgrew the intolerances at 2.5y.
She had no idea what contribution BF was making to his diet so had to rely on Kellymom info. It was useful to have prescribed calcium and vitamin supplements for Ds and she did have some good ideas for getting more calcium into him. He never took the prescribed formula ( Neocate) but we muddled through with 2 BF a day, Oatly in cereal and 'milk' puddings, supplements and getting fat and protein elsewhere.

DS is absolutely fine now and lives on yoghurt and cheese sandwiches....

Just want to echo what most others have said. My 2.5 yr old is dairy, egg and sesame allergic. We were referred to a dietician and allergy paediatrician at about 9 months. I didn't find the dietician to be helpful - she kept suggesting things that my daughter was allergic to and then saying "oh, but she can't have that can she. Hmmmm". She also suggested trying items with cooked egg and milk ie: brioche etc to see how she got on even though the paediatrician had advised strict avoidance at that age. I pretty much just taught myself and used the Internet.... I ebf until 1 year and then supplemented with nutramigen during the day for another year after I went back to work and bf morning and evening. Paediatrician was happy to prescribe nutramigen until 2 years old and luckily my daughter would drink it. Now she drinks coconut milk. Nobody ever offered me advice on my own diet but really I don't think cutting out dairy is bad for you as long as you have a relatively healthy diet otherwise. My daughter takes a daily multivitamin with calcium (halibirange calcium softies) which the pedi recommended.

Our dietician was good. Discharged us after 4 4- monthly visits when it was sorted what was wrong/ we knew what to do and confident in reintroduction trials.

She had also made a point of trying dairy/wheat/egg etc substitutes which I thought was helpful.

I'm afraid I also found the dietician pretty unhelpful. DD had terrible stomach pain and explosive diarrhea that burned all the skin off her bum from about 3 weeks old. Almost every health professional we looked to for help seemed to be in the aforementioned group of non believers as to the existence of CMPI. Or thought it was so rare we must be making up how bad it was.

I just did my own research. We don't have many allergies ourselves so it was really new to us. Luckily DD can tolerate soya as she refused hydrolized formulas point blank. The dietician was not aware of current advice on soya for under 6 months. My advise is to read as much as you can and follow your instinct.

Good on you for still breastfeeding. in the chaos of the first few months and trying to find DD some relief I gave up and really regret it.

Thanks for all your replies, it's nice to know that I'm not the only one to be replying on the net for advice! Since my last post my lo has refused all attempts to give him the nutramigen (although I only tried for a few days) it was so disgusting I've just sacked it off and im continuing to EBF. My health visitor has pushed for a dieticians referral for both of us so I'll keep my fingers crossed for a knowledgable, useful one and not a hopeless one . I wonder have long it will take to get an appointment....