How long did you have to wait till appointment at allergy clinic for DC?

[rednellie]

My Dtwin2 appears to be allergic to dairy. After eliminating dairy from my diet and excluding it from his, his ezcema disappeared and he was just better in himself. We accidentally fed him some baby cereal with follow on formula in it and he reacted (red on all points of contact with raised hives) to it within 2 spoonfuls. Similar happened when he got hold of his twin brothers yogurty covered spoon.

Anyway...we've been referred by the GP about 3 weeks ago and still haven't heard anything. I'm chasing it with the referral unit, but it looks like we wont see anyone till March, at the earliest. Now, I don't know if he's allergic to anything else, he's very small (wavering between 9th and 2nd percentile, but he's healthy and chubby, if that makes sense!) and this has all occurred at the start of him eating solid foods. He's EBF and I'm currently dairy free.

Anyone a) got any advice and b) how long did it take till you saw someone at the allergy clinic/dietitian? Basically, I'm swimming around in lots of information and feeling slightly overwhelmed!

Blimey that's bad. SIt sounds remarkably similar to my ds, who is 8mo and has similar issues with dairy causing hives (my older ds touched him with his ice-cream covered hand) and we're seeing a specialist on Monday, were referred 3 weeks ago. I'm dairy free too as he's still ebf. My ds is just under the 50th centile line and I only went to the doctor to find out what I can supplement him with now I want to cut down on breastfeeding, expecting to be prescribed special formula. Instead we got referred,a nd quickly by the sounds of it, especially as ds is pretty fat. I'd really really chase this up. 3 more months is a hell of a time to wait.

I first took DS to the Dr when he was around 10 weeks old saying I was sure he had an allergy, he's now 18 months old and it's only just been diagnosed. If your gp's referred you, that's the 1st step sorted. I would make a nuisance of yourself until you're seen. Good luck!

Welcome to the postcode lottery!
I don't have any advice to offer on speeding up your appointment with allergy specialist but you could go back to your GP and request an appointment with a dietician, ( stress you are struggling to know how to feed him a balanced diet that is dairy free and that he is below the 9th centile). The dietician will take weight and height measurements and will be able to offer advice.
Appointments can be made at short notice if the professionals feel it is urgent. My ds2 was diagnosed with coeliac disease this summer. He was given the diagnosis on a Friday and we were given a dietician appointment for the following Wednesday. In September I was given an appointment for his follow up with the dietician for early December, this clashed with another medical appointment and when I phoned to try and change it ( in September) I was told I couldn't get another appointment until late January-It was clear to me he was no longer seen as a priority so you just get put on the end of the waiting list.
I would tell your GP you are feeling overwhelmed and need the support of the professionals.
I found with my Ds2 the GPs used to say their bit (it's just a virus or we'll refer him) and expect that to be enough. I found that when I questioned them about how I was to cope inbetween and demanded specific answers I started to get somewhere.
Make a list of questions you feel you need to know.
What can he eat to get a balanced diet?
How can you ensure he is getting enough calcium?
Where should he be getting Calcium from?
Should you still be breastfeeding?
What should you be eating?
How often should his weight be monitored?
Shoul he be having supplements?
Is it acceptable for you to wait until March to get answers to these and many more questions, if your GP cannot give you these answers insist that you need the answers ASAP.
From my experience you are currently on the most stressful time, you know what is wrong but don't have access to the professionals who can assess his needs exactly and give you the info/ support you need. Once you get this, and adjust to the dietary changes life does go back to normal again.

8 months. that was good, as i was told some wait 18 months at the time. of course that was some years ago.

nowadays the pead allergy clinics, the london ones try and have make first appointment in 8-10 weeks.

have to say it was worth the wait. my son is now 16 and the pead team are trying to find an adult clinic that will support him. I think thats going to be harder to find.

Thanks so much for all the responses. Funnily enough I took him to the gp on Wednesday to ask for a dietitian referral, glad that was a good instinct! I don't know how much more of a nuisance I canbe. We haven't even got an app yet, am still hounding the referral team to get a date from west middlesex.

Argh, it's all so frustrating. I'm sure we're doing all the right things but him being a twin and with an older sister I'm finding it hard sometimes to focus on what to do!

We had a 3 or 4 month wait but saw the dietician quicker.

I spoke to the consultant's secretary on the phone ( as our referral got lost) and asked her if there were any cancellations at short notice to keep us in mind. Perhaps we were lucky but she did phone us with a cancellation and we grabbed it.

I agree with everything the others said. Hopefully your appointment won't take long, for my Dd it was 7 weeks from a&e admission, but I phoned and spoke to a dietitian about a week or 2 after because like you I was completely overwhelmed!

I started a support group and I'm written a website in an attempt to put a stop to the limbo phase for newly diagnosed and suspected cmpa parents, and also for the management of the allergy, have a look through the website especially the management and free from foods pages
cowsmilkproteinallergysupport.webs.com/

also please come and join our group if you have facebook one of our members like you has a 23m ds and 6m dtS one of the twins has CMPA and soya allergy
m.facebook.com/groups/Allergy.diet

Wow, thanks Jolene. That's incredibly useful although I'm now totally paranoid about soya too!

I'm just wondering whether it's worth paying for the allergy test so we can find out sooner. Anyone know how much it might cost and if it would put us at a disadvantage for future treatment? I just want to get him sorted. Poor baby

I personally wouldn't bother paying for testing, its highly inaccurate because non IgE allergies don't show up, although the reaction your lo had to milk sounds like an IgE reaction, the other symptoms sound like non IgE reactions, so in your situation I would probably avoid soya as well just to be on the safe side for now.

Ok. Wow what a palaver. I'm going to try that tip of mixing oat and rice milk then!

My SIL who is vegan reckons that you can get enough calcium through a good diet, but I'd still like reassurance that we're not missing out, especially my baby as it's such qn important time for growth.

My Dd's dietitian likes to try and get calcium through diet, but it is difficult, dd was prescribed calcium syrup at her last appointment, unfortunately she reacted too it, it's rare to react but my daughter did, they source some of the calcium from cheese, ridiculous really!!

You should certainly have the support of a dietitian to make sure all the nutrients you and your lo need to stay healthy are being met.

We've got our app after much hassling - the 4th of Jan so that's great! Thanks again for all the advice. It's all starting to make more sense.

That's really good news you've not got long to wait at all then
The mixing milk tip is something Frances does, personally I prefer Kara for everything now, it's the best for cooking and I think it tastes best too, I can make a white sauce and feed it to guests and they have no idea until I tell them, and my Dd loves it which is the main thing