CMPA Weaning Diaries [3]

This week has been a little bit of a mixed bag of emotions, as I'm sure you know if you read my blog, Isabelle has CMPA (cows milk protein allergy). We recently saw a dietician, who said that she could either change her formula - the one she is currently on is recommended for 0-6 months but can be used for longer if they wish. The other option is for her to stay on the one she is on, of course, I don't want to disrupt her, if you have a baby with CMPA you will know that the formula smells disgusting, and it actually took a long while for her to adjust to the one she is on now.

We decided that it was fine for her to stay on that particular formula, and the dietician said that she'd contact the doctors and let them know to keep prescribing it for as long as needed, which was all fine - or so I thought. Turned out that she'd said she wanted us to stay on that particular formula but she reduced the amount, so instead of the normal 10 tins we were getting, we are now only getting 7. She isn't actually properly weaning, and she doesn't eat enough to compensate dropping her bottles. We are still going through the minefield of introducing new foods, slowly because she keeps having reactions to things. So far, strawberries and sweet potatoes are a no-no. Who knows what else will creep up as we try to introduce new things. Then there is the added annoyance of having to wait two weeks after a reaction for it to pass and get out of her system completely before we can try anything new.

It's actually really annoyed me that they adjusted her prescription without speaking to me first, I get anxious enough about trying new things with her, and the whole process of weaning or her accidentally having dairy in her diet. Not to mention the fact that I worry about running out of her formula because if did, I can't just pop along to the supermarket and pick her up a tin, I can only get it on prescription.

I spoke to the GP about it, who said I needed to take it up with the dietician because he can't adjust her prescription back to what it previously was, without her say so. I've left an email with the dietician, who is yet to get back to me. Hopefully, she will get back to me, because the uncertainty of whether or not she will adjust it back is driving me insane.

I think it's bothering me more than it normally would because we are due to go on holiday soon, and while I can take safe foods, and I will be taking her milk with me, It's such a worry that we will run out while we are away. I've been finding contact numbers of local places around where we are staying, and I have rung to ask a few pharmacies which are local to where we are staying to see if they stock her milk, in case we run out. I know that really isn't going to happen though because I'm super careful and I know I will end up taking way more than I need, but Isabelle being CMPA has become a real worry, especially because I can't just pop to the shops for formula if we run out. I hate that my anxiety is making me feel this way. I guess its just the lack of control I feel over the whole thing, it's awful.

Sorry for my rambling, I guess I just really needed to get this out, and I'm really hoping that we hear back from the dietician this week and it eases my anxiety over the whole thing. Having allergies myself, I know how much having a reaction takes it out of you, and thats the last thing I want for her.

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