No IGa in 2yr old, anyone else out there??

[Hardymum98]

I am very eager to find another mum who's child/tot has an immune disorder.
My son has been in & out of hospital since he was 8months old. At 14 months they diagnosed him with Moderate Hypogammaglobulinemia although on his most recent blood test his IGg has gone up. But he still has no IGa.
He is on a prophylactic antibiotic.
He suffered from:
repeated ear infection (even with grommets),
Constant viral toncilitious-due to have them out soon at GOSH,
Repeated chest infections,
Skin infections,
And UTI's.

hi We are going through something similar. My 21 month old has been having recurrent upper respiratory infections since 9/10 months. Ent have referred her to a pedatrician that specialises in immunity issues. We have had first set of test back all clear justing waiting on other ones.

Vents seemed to have sorted her ear infections but has had 4 bouts of tonsillitus in 6 months us uti.

It's so stressful isn't it. It's like our wee ones don't get a break.

To be honest I'm finding it really hard to cope.
We ended have up in hosiptal for 2 weeks on IV antibiotics & a operation over a paper cut! We very nearly lost his finger.
It's been a really rough journey but having a dianosis does make things easier. I've had to give up my job as he is a full time job. Him being poorly had delayed his speach so now he's under S&L & he is very small for his age!
What blood tests has your little one had done? Have they said they suspect a problem? How do you cope seeing him suffer day after day? I avoid soft play areas where I can as I find them to germy for Joseph & our paeds said to delay nursery & day care. I socilise him as much as I can but it's hard as he's normally ill & there fore I can't make plans. I'm at my GPs once a week, emergency doctors every 4/5wks, paeds every 6/8wks, ENT every 5/6 wks & a hosp stay every few months.

I'm sorry to hear that your DS is struggling with this. Slightly off-topic, but have you considered applying for Disability Living Allowance? He may well qualify if you have to give him more care and supervision than a typical toddler.

Thank you Lougle.
I didnt know anything until recently. I have applied & am currently re-applying as they have put me on the lower rate when I sent in all the reports/hosp admissions forms/paeds letter ect proving he takes far more then 1hr extra care & expence a day then a normal tot. At the time I couldn't face arguing & hoped things would improve but they really haven't even tho his IGg has gone up slightly. It's it's no IGa that is causing the infections.
Everything is such a fight. Apparently you have to use certin words when applying for DLA... Stupid.

I know they are testing iga and Igg but I thi k these are the ones that only take a week so must be clear. The other one take 6 weeks and I believe they are testing her reaction to infection. They do think there is something but it may be she just grows out of it. Just have to wait see. My gp is sick seeing us as our out of hours. I am working full time and DD is in day care and she loves it but I know peads r going to tell us to take her out at next appointment. Basically I keep all my leave for her sickness. It's every 5-6 weeks at minute I don't think as severe as your little one. God love him. Are there other options apart from antibiotics. I know there is a transfusion you can get. Do u have much family support

Hi We are currently awaiting test results for my ds whose results were lowing first time he was tested. Have you been referred to a paediatric immunologist? We are under a paed until test results indicate we need referral. One test result has improved others we are waiting to find out. It is good you have immune tests as often it can take ages to find thing out. There used to be a good charity, PIA but it has closed due to funding cuts.

Well he ended up in hospital for 2 weeks on IV antibiotics because OD a paper cut at 14 months, that is when they sat us down & said they think he can't fight bacteria & infections. Since then were there every month or so.
They have explored the IVIG route but because he has no IGa he will react to the blood fraction & that lane could kill him.
There immunity is developing till they are about 7yrs old so all there IG levels will rise but because DS has no IGa they don't expect that to change with age.
An important blood test to ask for is the 'Tilt' test & subclass tests. Both are important as if they are making antibodies to thing they have been jabbed against its a very good sign & if they have no sub class problems the symptoms they are expirancing will pass.
We are under GOSH & they are fantastic. We are also under our local paed immunologist but they are rubbish. Always push to go to some one who knows more...!!
I still have so many unanswered questions.
I never thought I would never leave the house with out a bag of meds & I would know how to listen for a chest infection. Know how many reps a 2yr old should do & his base temp... The list is endless.
Do how do you both cope with constant hosp apps & having a child that's so Ill you can't live a normal life?