Annoyed with paediatrician

[heatherb]

Hi, don't know if many of you will remember me, so have copied a post I did a few weeks ago to remind you, below.

Saw the paediatrician this morning. Firstly, his weight gain is really good, and he is now well above the bottom line on the chart. He now weighs 17lb 2oz.

But, the paediatrician was most unhelpful. He said the blood tests results weren’t likely to be false negatives, even after I said that the dietician told me that most blood tests in children Callum’s age don’t produce conclusive results. He sent us away saying that we could test him with foods if we want to, but gave us no guidance as to how to do it. I am going to ring the dietician when she is in on Monday. She seemed a lot more helpful. I feel like this morning was a big waste of time. He did say as we were walking out the door that they will do some more testing for the gluten, but that seemed to be an afterthought. He has asked to see us again in 3 months.

Hopefully the dietician will be more help. Our next appointment with her is not till 12 June, but hopefully I will be able to see her before then.

Anyone got any advice for me?? I feel like we are back to square one now. He is definitely intolerant to something. One of my other children gave him a chocolate biscuit last monday and it was obvious he had eaten quite a bit of it as it was all mushed up in his fist. 10 hours later he was violently sick, and still a bit sicky the next day. The biscuit contained milk, soya and gluten. Also, last week, I got some dairy, wheat and gluten free mini eggs for him. They did have soya in though, and he was sick later that day. He has been more or less sick free for the last couple of months apart from when I have a slip up.

Thanks for any advice

Heather


This copied from previous post:
Hi Everyone,

I am fairly new here, so will give you some background info on my ds. He will 11 months on 6th April, and was an extremely sicky baby from birth. He has been through loads of different tests, (including barium meal, sweat test, urine and bloods) and all have come back clear. The consultant saw that he had some eczema on the backs of his legs so suggested it may be dairy, so I have been on a dairy free diet since November, and he has got better. However, he only really got a lot better when we cut gluten from his diet. We have had the coeliac test, but because we had already cut gluten out, it came back negative anyway. We are going to have to introduce gluten and have the tests done again - dietician said it would take 2-3 weeks of gluten in the diet to show up a positive result.

He has also had RAST tests for dairy, soya and wheat, but they came back as GRADE 0 negative, but I know they are not very reliable either.

The next step will be to re-introduce the foods he is not having now (one at a time, obviously) and see what his reactions will be. This will obviously be done in a controlled environment with medical advice. But, we are not going to be doing this until DS has put a substantial amount of weight on. He is completely off the weight charts for his age (at last weigh in 2 weeks ago he was 15lb 6oz - about 4lb less than average!!), so I have no idea when that will be.

[Copper]

I feel really sorry for you. All I can suggest is a sort of exclusion diet. If he was ok if you excluded soya, gluten, wheat and dairy then he has a problem with one or more of those things. All you can do now is keep him on that diet for a couple of weeks and if he is ok then try him on one of those excluded items. If he is ok after a few days you could then try him another of those excluded items. This will be a long process and could be quite distressing for you both when he has a reaction and is sick.

Write down everything you try - a diary - as this will be the proof which you can show the dietician and your GP.

I don't know what else you can do really as you have tried the NHS way with no help what so ever :mad:

Let us know how you get on and good luck.

[rebecca c]

My advice to you is to keep going with the testing as long as you want to. But bear in my there is no test for intolerence and yet the symptoms are just as real as for any other illness. Just because you can not be told you definitely have such and such doesnt mean that you are not really ill.

For a long time I felt desperate for a diagnosis because I felt being taken seriously by everyone would help me. I have got a diagnosis for part of my illness now but most of it is still put down to intolerences. However I have some better doctors who are very supportive and understanding and I am developing confidence that I know what is wrong and how to deal with it and that is what matters not what other people think.

I hope these opinions are of some help for you coping with your sons condition, I know it is different when it is your child not you that is ill but some of the same principles apply.

[ellsie]

Hi there. I noticed that you live in S Derbyshire. Do you have an allergy doctor- there aren't many around- in your area? There is one at Glenfield hospital in Leicester who I was referred to and allergy is her speciality. I don't know if you would be able to be referred there or not. It is all East Midlands.:) Might be worth asking as paeds are not allergy specialists and it may be down to personal viewpoint as to how seriously they take it.

[tigerlily]

First of all, it's 8 weeks on Gluten before they test for Coeliac. But even that test can be inconclusive in children under 4-5.

The RAST is known for false-negatives at such a young age. We experienced the same and then when my daugter was 2 and had another test, our worries were confirmed!So stuff the RAST! I personally would give the RAST a miss (or at least until age 4-5) and wait until he is 2 and then have the YORKTEST done.
Until then I would do elimination.

As far as I know, dietitians are not allowed to refer you for tests, by the way.

Vanessa.

[matt]

right... i doubt they will go for the allergy doc as the symptoms don't sound like an allergy. unfortunately as has been said tests are not perfect and are subject to false negatives etc

the only way to acheive anything is to begin a food diary immediately. then remove one item of food at a time.
he's too young to do a full exlusion diet. this is where you remove all potential foods and go on a really anti reaction diet but this is very restrictive.
so best to remove eaach food in turn.
so remove dairy in total be very strict as the smallest amount will take you back to square one. and see if the situation improves after a few weeks.
then reintroduce and see if the symptoms come back.
then once on dairy again remove wheat and gluten.....

once you have gone through the wholelist you will have a damn good idea what types of foods cause a reaction and you will have a diary logging it all. this will mean that when you see the dietcician you will have the evidence you need.
i'd speak to your gp as you might be able to get the milk substitute on prescription.
hope this helps.