Children and CVID

[emsy]

The results of Zach's IGg is back: it is 2.2 (Same as mine!) ref for his age is 4-6 so he is low. I know some of you are quite medical on here, should I be worried or is it likely that it was low because he was ill, or could it be that he is too young to be able to make his own IGg and is runing on what little he was able to get from me?

I managed to get these results from a spy in the hospital, but when I rang the consultant's secretary to get the results oficially they had been filed. She said the consultant would get back to me when they have looked at the results but so far no call. I don't think they know what they are looking at re IGgs.

He has a folow up with GP at end of June shall I just wait and bring it up then? maybe they are waiting for sub class resuts to come in?......

Meanwhile it looks like my 3 year old may have glue ear. I read something about that being linked to CVID. In his short life he has had hand-foot-and-mouth, gasterenteritis (Hospitalised for this aged 10 months) and tonsillitis. Is this all just normal Kid's stuff or should I be woried about CVID with him too?

Sorry for all the questions and sounding so neurotic!

[s162216]

Hi,

Its unlikely to be from what you were able to give him as immunoglobulin production starts immediately after birth (hence why babies with severe combined immunodeficiency don't present symptoms immediately as they have immunoglobulins from their mother) and maternal antibodies start to disappear (except for immune memory cells) until they are gone around 6 months. During illness IgG production increases but they diffuse into the tissues and as so are not present in serum to as great a degree which will show up as low. They'll probably want to test them again when he's well to check if this was the case. As the sub-class results will be done using the same test (probably using ELISA: Enzyme Linked Immunoabsorbant Assay) and added so that shouldn't account for any delay.

At the moment I would just wait for the consultant to call back as they've probably just not analysed the results yet, besides some childrens immune system develop faster or slower than others.

Sam

[emsy]

Thanks Sam. He was still only 6 and a half months when the bloods were taken in hospital so it's possible then that he hadn't yet developed much of his own IGg yet.

[liz2mac]

Hi Emma,
It's REALLY important that you talk to a Consultant Paediatric Immunologist My children and Grandchildren were not tested until they were four, as this is really the best age to find out what their own bodies are doing. Until then you are only testing an incomplete immune system in the first place. If, like your children and mine, their Mother had undiagnosed CVID whilst pregnant, what they will have for a long time is very little antibodies. So testing them at your children's age is NOT a diagnosis of CVID in the children, but merely a reflection of your immune problems whilst you were pregnant with them. However, the fact is that they are low noe because of this and therefore will be open to more infection than is normal. You need to get advice from the specilaist Paediatric team at Newcastle General Hospital. The team there is headed up by Prof Andy Cant. Your GP is the only one who can refer your children as Consultants in England and Wales are not aloowed to undertake cross consultant referral. Please Emma, get your GP to refer you to Prof Cant's team and hear the truth about what's going on for your kids and not the semi understanding of the situation by other paediatricians who simply don't have the knowledge or experience, no matter how willing or interestef they are.
Let me know how you get on?
Liz

[emsy]

I will Liz. I will ask my GP to do this when we see he for Zach's follow up appointment.

[s162216]

Hi,

I was talking with one of the immunology nurses yesterday about this as one of the other patients is having a baby shortly and she was concerned about this, according to her its near impossible to diagnose CVID before the age of about 3 (XLA is different and can be identified in pregnancy or from birth if necessary as the genetic mutation is known and can be rapidly identified through screening) as children are still developing their immune systems until then and its only after that point when they are don't develop enough that it becomes an identifiable problem. It depends on the child as to how rapidly their immune system 'matures' so some might get infections during their early years but then be absolutely normal.

Sam

[emsy]

Thanks Sam. This makes loads of sense and answers lots of questions. It also makes me realise that I have to be really careful when they are I'll because they will be at higher risk than most kids as they are running on what little IGgs I gave them until they can make their own