Cvid and low IgA

[jpd]

Hi!
I haven't been here for a while.(Cvid for ten years now).To update-my haemophillus is at last under control.I am on nebulised gentamicin and it's a good control for my chest and fairly good control for my sinuses.I feel like a human now.However it seems to be a longlife treatment for me.
Today I would like to ask about my son.He is twelve now.At the age of five he was diagnosed with low IgA.We repeated the tests six months ago and his IgA is 0.06 and IgG2 below normal as well.My son has recurrent upper airways infections,abdominal pains and sometimes diarrhoea.The problem is my Paediatrician is not concerned at all!!.His only advice was:if your son gets a pneumonia we will test him for CVID.I was furious about it.We forced the doctor to repeat the tests in two years and to refer to ENT if there were two confirmed sinus infections.What is your experience about kids with low IgA and CVID parents.Sometimes I think I am hysterical but I promised to myself that none of my children would damage their airways.Sorry for my long post and thank you for reading.

[jpd]

To be more precise-the first IgA level I did privately and then I was fighting for medical review for five years.After the recent tests had come back the Paediatrician said literally: your son has NO immunodeficiency.But for me he meets criteria for selective IgA deficiency.That is why I am so frustrated.

[keziah]

Can you ask for referral to a Paediatric Immunologist? Understand you are frustrated.

[s162216]

I do find it a little concerning that they want to wait for your son to develop pneumonia before they will test him, although pneumonia is common amongst those with immunodeficiency not everyone will necessarily have it or it may be many years before they do (I've never had it) during which time they could have been tested and appropriately treated to lessen the likelihood of actually developing serious infections. Some immunodeficient people like me just simply don't get many more infections compared to 'normal' people when their younger but then suddenly for unknown reasons they can start rapidly getting them (I only found out I had CVID by complete accident!) so waiting is completely the wrong way to do it if a family member has an immunodeficiency and their child etc shows common clinical signs.

I agree with Keziah and would ask for a referral to a paediatric immunologist as they will know the best course of action and will very likely test your son based on what you've said.

Sam