Advice from the MN experts please on first hospital appointment for cmpa.

[clairedunphy]

My DD has finally got a hospital referral for cmpa. She will be exactly 12 months by that time.

She's still breastfed, but has an allergy formula (Aptamil Pepti 2) when she's at nursery. We tried normal formula when she was much younger, which is what made us suspect the allergy because she came up with nettle rash around her mouth. I've since tested lots of dairy products on the skin on her arm and she reacts to milk, yoghurt, butter & cheese.

The GP admitted he didn't have much knowledge of cmpa and was only able to prescribe the formula after I'd researched it myself and told him which one I wanted. So he agreed to a referral and while we've been waiting for it we've just been making it up as we go along. I've cut a lot of dairy from my diet (although not completely), and I've given her malted milk biscuits on the advice of a HV who knew a bit about milk ladders. She doesn't react to the biscuits so I'm hopeful that it's not too severe and that she'll eventually grow out of it.

Now that we have the appointment I've realised that I don't really know what to expect, what I should be asking, and what I should come away hoping to have achieved.

Will they actually test her, or will they just give us the milk ladder and ask me to follow that and see how we get on? Is there anything that I should be insisting on them doing / checking?

Has anyone been through this process who could give me some guidance?

Thanks.

[Raeliz123]

Hello! Well done for getting referred - that's half the battle won in my experience :) At our appointment we were tested for full milk and soy allergy but that was on the basis of a full family history and then our food diary (we were tested for lots more too). Most Paediatricians seem to take the history first then decide on any appropriate testing (usually skin prick tests) and then go from there.
I think it's helpful to write a list to take in with you - I asked for the allergens to be tested that I was concerned about, then on diagnosis discussed what other steps I should take to keep my LO healthy as they were the things I needed to know most about (adding extra Rapeseed Oil to dishes to help with essential fats, calcium rich foods etc all discussed with the dietitian) and how often we would see the team. I also asked about what I needed to tell other caregivers and how to find help. that was six years ago and we still fight our allergies but there is lots more advice out there (including the site I've just set up to help other mums). good Luck!

[clairedunphy]

Hi, sorry haven't had a chance to post again until now. Thanks so much for that, great idea to take a list, I'm terrible at these kinds of appointments. I tend to just take the subservient role and nod and smile, then think of everything I should have asked when it's all over.

Sounds like you're an expert now, not surprisingly after 6 years! Good luck with your website, can you share the address?

[clairedunphy]

Bumping in hope of more advice...

[HotMommy]

Your story sounds almost identical to mine. I knew my daughter had a milk and egg allergy but she wasn't seen by an allergy clinic until 12 months. I first saw a consultant and we discussed my daughter's reactions and decided what to test for. I asked for milk, tuna and sesame as she had previous reactions to those and also for soy and peanuts just because I had been avoiding them out if fear that she may have an allergy to them too. Then I we saw a nurse (I presume) who did the skin prick. They do two control pricks (one with nothing and one with histamine) and then pricks for each of the substances you want to test. Sometimes they do two pricks so for egg they did raw egg and egg solution. My daughter doesn't mind the skin pricks to much - wide eyes but no tears. It's not as painful as a jab but scary. I make a big fuss over her but try not to make a big deal of the tests themselves. Some other children do get quite upset though. Then you wait 20 mins or so for the reaction to show and the consultant will measure the welts that come up and explain the results to you. Bubs arm will probably be quite itchy so bring something to dustract them, though they will probably have some fun toys in the waiting area. We have always had an option of seeing a dietician right after too but I'm sure different hospitals have different procedures.

Assuming your allergies are confirmed they will probably make a plan to retest every 6 months or so to see if there are improvements.

Our consultant said that we shouldn't try giving her any of her allergic foods unless there is a significant improvement. He said if she gets to 5yrs and still no improvement (I hope not!!) then we will think about ladders/desensitisation.

Definitely a good idea to take a list of questions so you cover everything you need. That said, our consultant has been quite good about answering questions if I phone up.

They will probably also give you a prescription for piriton to give in case there is an accident. You can give one to your childcare provider and keep one at home.

[clairedunphy]

Thank you HotMommy, that's really helpful. Your experience sounds very positive, I hope mine is similar - would you mind sharing which hospital you're under? We're going to Birmingham Children's, I'm hopeful that they'll be as helpful.

I'll come up with a list of foods to test for, good idea about peanuts etc, there are quite a few foods that I haven't tried yet because I'm worried about her reacting, so it'd be great to get a definite yes/no on them.

Interesting that they want to wait until 5yrs before trying ladders etc, it feels like a long time doesn't it!

So other than foods to test for and questions about making sure she's getting all the required nutrients, is there anything else I should be asking about do you think?