new here & a question

[Heartmum2Jamie]

Hi All,

Just found this board...I have to say that I am glad it's here! I have a son who will be 17 months old tomorrow. He has been under a dietician since he was nearly 6 months old as he was a "failure to thrive" baby. It turned out that his lack of weight gain was due to a heart condition. We are still under our dietician and saw her last monday after getting a cancellation appt. I had rang her up to tell her that Jamie keeps getting rashes around his mouth and suffering from a very sore ring around his bottom. After keeping a food diary, she things that he may be milk, egg & tomatoe allergic and we were told to avoid fish & nuts as well. She has refered Jamie back to his paed to have some tests run. How long should I expect to wait for an appt?? I am quite annoyed as Jamie was due his flu jab this morning and the nurse refused due the "possible" egg allergy.

I have also noticed in the last 7 to 10 days that Jamie is having alot of dirty nappies, very mucousy, with obvious bits of food in. I saw the dr this morning and he thinks that it may be due to the fact that we have changed his diet alot over the last 3 or 4 weeks. He eats less baby jars and more table foods like sandwiches and the like. He wondered if it could be due to the vast increase in wheat/gluten in his foods. Does this sound likey??

Sorry for so many questions. I would just like something to go right for once with my little man, but it seems to be getting worse with more appts than ever

Anyone??

sorry, no advise but didnt want you to go unanswered. try bumping it up this evening, lots of mnetters have kids with allergies and things speed up lots later on

welcome to mumsnet btw

I would telephone your Paed and request that this be treated as an emergency, because of teh flu vaccine issue. I say this because waiting times can be long- Sam (AS, milk allergy) was referred as an emergency referral to our first \paed as we were moving, that took a month. We have been waiting for another appointment here, and it has just been put back to February , therefore an 8 month wait.

Your GP should be able to refer as an emergency too.

Has your son been tested for coeliac disease ie intolerance to gluten? My ds1 was diagnosed with it at 20 months after months of yucky nappies, being sick, lethargic and rapidly losing weight. The initial test is a blood test for antibodies and if they are present then the medics generally like to do a biopsy to confirm the diagnosis.

NikkiH, he hasn't been gluten/wheat tested yet, but I plan on asking when he has his RAST test for them to do it at the same time.

don't know much about gluten intolerance but if you want to try avoiding/ limiting it look out for xanthum gum, which allows you to make food with a better texture.

Where are you? How long you wait varies with where you live, unfortunately. Waits are longer in the north of england ( could be years) but you're likely to wait at least 8 months anywhere in Britain.

I keep forgetting - it is possible for your gp to take blood and get an egg allergy result in about 4 weeks. They don't like doing it because its hard to get blood from babies. personally I'd avoid egg until you can get a blood test from someone with a lot of experience. If they haven't prescribed a milk substitute for you they ought to do so - nutramigen and neocate smell foul but are least allergenic. You could ask about Pepti Junior.

Thanks for that Tatt. I live in South Staffs. I was hoping that we could get seen quicker as we are already with the particular paed who deals with all the allergy cases. We are due to go to the hospital on Friday to have his flu jab given under supervision, so I may ask them to draw the blood anyway or demand to see the allergist while I am there (if you don't ask, you don't get ...right?! What's the worst that can happen, apart from them saying no, lol!) Other than that, Jamie has an outpatients appt with his paed on 6th Feb and I can get it done then, but that is still 3 months away. I have thought of asking my GP to write a letter of recommendation that I get Jamie privately tested as I have a health plan that pays cash back for private consultations. What do you think? I don't want to wait too long for testing as this allergy game is a minefield! Just yesterday Jamie managed to get hold of an empty packet of cheese puffs (courtesy of older brother) and came out in hives and spent a good hour scratching...poor baby.

Ok, on the advice of a friend who has a son who is egg allergic, I tried putting a bit of raw egg white on the inside of his arm. Within 5 minutes he was scratching and had come out in hives. I am presuming that this means a definate egg allergy?? Does this mean that he is only allergic to raw egg and that he would be ok with cooked egg? Also, is he likely to outgrow an egg allergy?

Yes it does mean he has an egg allergy. My ds is egg allergic and reacts the same way. He was actually tested again yesterday and still had a significant result. I have never tried cooked egg either or even cakes etc with egg in. Around 80% of those with egg allergy will outgrow by school age (5 or 6).

Stop fiddling around with egg around him - the more the exposure the worse you could make it.

yes ask when you're at the hospital. you could ask for a private referral. Not every allergist sees private patients so you might see someone less qualified but if you don't get anywhere asking its definitely the way to go. And I agree with bobbybob, don't messa bout until you've had proper tests it could be very nasty. He may be Ok with cooked egg but probably not at the moment, he'll probably outgrow it but not all children to - take care.

GO PRIVATE, allergy testing under the NHS is a complete disgrace, is not that they don't know how to do it, it's just that there are not enough allergic clinics to keep the pace with the severe allergy cases. DS had an allergic reaction to peanuts in February, we are still in their waiting list for testing... saw the paediatrician last week (after waiting for 9 months) who told us that they still want to keep us in the waiting list (we have gone private and confirmed peanut allergy and many others) and mentioned won't take place before March next year. So, my advice will be don't wait.

PS> Please, please, pleaase, don't rub more allergens onto your baby's skin, if he is already allergic you may be calling for problems, after all, if doctors preffer to test under controlled conditions it's for a reason. If your DS is not allergic you may be sensitising him to them. There was an article a year ago in one of the NHS publications naming early skin contact with soya and peanuts as a possible origin of nut allergy.

Thanks for your replies. We haven't ended up at the hospital today. After speaking with our GP last night, he decided that it would be too dangerous for Jamie to have the flu jab, even in controlled conditions.

How do I go about getting a private referal? Do I need to ask my gp? I guess that I may as well get my elder son tested as well as he suffers alot with his gut.

Doesn't matter! I found a wonderful website that allowed me to look up dr's with specialities in my area, even told me if they were private or NHS. I have found a few consultants that are worth considering.

Post the website address please!!!

Ofcourse! It's www.specialistinfo.com

I hope this is helpful to some of you. You can bring up lots of basic info, including waiting times. If you want to look at the consultants specialities, then you have to pay. A 2 hour slot is £2.99. I know that I must have spent more than that on many worthless telephone calls recently, trying to get the same info I found on this site.

Drat I was hoping you'd have managed to get the test. Try this website for free information on where members of the professional body have clinics.

www.bsaci.org/clinics/UK

Technically you need a referral to a clinic. If your gp was a pain most consultants have a private gp who will refer you. However that is rarely necessary - most gps are happy to refer you privately. Telephone the clinics to see who does private work and check with your insurer they'll cover you for both children. If you haven't already got the older one on probiotics that may help some gut problems. It won't help if the problem is gluten.