Child with immunodeficiency (IGA) and Asthma

[HowNowWhatNow]

Hi,

My daughter of 2.5 has breathing problems. I call it “pre-asthma”, given she has all the signs of and inhalers for asthma but is too young to be diagnosed. She has just had her first set of full blood tests done to rule out any immunodeficiencies, allergies etc. These were done at the request of her respiratory medicine consultant. But the results came back yesterday and it looks as if we now need to rule an immunodeficiency in.

Does anyone here have experience with child who has this / have this themselves?

I have done the bare minimum of research into what this kind of immunodeficiency might mean - recognising that it might not mean anything at all.

The things I note when reading about it (apart from the fact that it increases the tendency to / can go to explain why you get lots of infections or even asthma, which is of course the central take-away) are these:

- that it can mask the true result if you have a coeliac test

- some people who have it wear a medical bracelet because they can get anaphylactic shock from blood products

- in case of extreme immunodeficiency, some take prophylactic antibiotics (query on this - how would this help a person not pick up viruses? I can see how it helps with bacterial infections)

- doctors don’t take a firm view on it - just as when diagnosing asthma - before the child hits age 4/5, because the child may grow out it (fingers crossed!)

Question: Are there any things other than the above that I should think about, now that I have this result?

The result in question was Immunoglobulin A: 0.1 g/ L. Reference range used: 0.3 to 1.2. IG G and M results were normal.

For background: my daughter has had as many courses of antibiotics in the last year as I have had hot dinners. Almost all of them for throat / chest infections... and almost all of these infections bring on breathing (esp coughing) problems in turn. Her Vit D result was at 50 - the lowest acceptable result - even with taking a Multivit every day. Other than that, all normal.

Thanks

[Tree20862]

I would hope the doctor that ordered the test would have a plan for treatment.

As far as the asthma goes, keep up with the inhalers to make her lungs as healthy as possible.

Keep asking her doctor the questions you presented to us.

Keep us in the loop. I pray for answers and guidance.

[HowNowWhatNow in reply to Tree20862]

Thanks! You’d think the doctor would advise - I thought it a remarkable result - but she just wrote to say that the result “may be of little significance, on its own”.

And who am I to argue with that!

Which is why I’ve put it out to the hivemind, looking to make contact with anyone who has real experience of living with immunodeficiency themselves, of with a child who has it.

[Js706]

Hey

I currently have an immunodeficiency - I’m deficient in IgG and IgA. Although with me they’re currently trying to work out whether it’s due to steroid tablets (I’ve been on them since they picked up the deficiency a year or so ago but also have the correct childhood history for it to be a primary problem!).

Although it always sounds horrible when you start looking it up the doctor will probably have written about it not necessarily being significant firstly because, as you’ve been told they don’t like to diagnose it in young children as they can naturally have low immunoglobulins that then pick up as they grow up. But also that a lot of people (I think 85-90% or so) with just an IgA deficiency don’t have any symptoms from it.

For mine I’m on regular antibiotics and need long/high dose courses when I get an infection. But before that the main thing for me was just learning the signs of infection and being careful to keep an eye out for them - so if I felt like I was coming down with something keep an eye on my temperature/check my sputum hasn’t started to turn a nasty colour (lovely I know 😷) etc. Then if I thought it was definitely an infection to make sure I went to the GP to get checked over and to make sure they knew about the immune deficiency when deciding if I needed a course of antibiotics or not 😊

Hope some of that waffle helps! Happy to try and answer any questions if I can!

[HowNowWhatNow in reply to Js706]

Thank you so much, both Js706 and the previous replier. I really appreciate your taking the time.

Js706, it sounds like you are being closely monitored, as it should be.

I’m glad they spotted this. What caused the doctors to pick up on it now? Ie. What were your symptoms that led them to test for it?

[Js706 in reply to HowNowWhatNow]

Mine was actually just picked up by chance at my first difficult asthma clinic appointment - it was part of the initial bloods they did in everyone.

But I think if I was a child now it would have been checked out by my GP a long time ago. As I used to get pretty constant sinus/ear/throat etc infections that were caused by weird bugs or would take multiple antibiotic courses to clear

[HowNowWhatNow in reply to Js706]

Thanks for explaining, Js706. Again, so glad it was picked up .. finally.

Your tendency to get rolling infections sounds just like my son’s (my other child). I asked his GP yesterday if he might also get tested for immunology issues (knowing that his sister might have them), ‘no’ came the answer. The GP tells me that he has never seen a patient with immunodeficiency in all of his career in GP practices and hospitals.. just to show you that “kids these days” don’t get any medical treatment and care than the rest of us!

[Js706 in reply to HowNowWhatNow]

Yes it’s very frustrating! I guess at least you’re aware and it’s something to keep an eye on, then if it doesn’t resolve in your daughter you can ask again with a bit more backup!

[Pipsqueak77]

Hi

I’m sorry to hear that your daughter is poorly with immune/asthma problems. It’s difficult when they are so young.

I suffer from lymphopenia ( very low kind of white blood cell) which fluctuates up and down but never gets into a normal range.

I was diagnosed whilst they looked into my asthma at clinic - my antibody titres were very low and they initially diagnosed HIV.. which as you can imagine was very stressful at the time.

Eventually immunology ruled this out but my levels vary all the time so don’t think that just because your daughters levels are low now that they will remain that way always. In fact I think that it may well be that they will pick up naturally as she gets older and her immune system matures.

Day to day I have prophalytic (sp?) antibiotics all the time which I rotate between two different kinds and then I have additional ones to add into the mix when I have an infection.

It’s not that bad really.. they generally keep me well now so I just have the asthma to contend with!

I think you just need to be very aware if you think she might be heading for an infection and get treatment for her ASAP and also to make sure you ‘try’ to avoid others with infections too if poss. Finally just basic hygiene as well will help keep bugs away.

If there are any major concerns I am sure your daughters consultant will refer her to immunology - and those I saw in the nhs were fab! So try not to be too worried.. ( tho I know it’s hard😊)

Pipsqueak

[HowNowWhatNow]

Oh Pipsqueak, your journey to diagnosis has not been straightforward! But you are on the right track now.

Hygiene just seems like the one thing you can do to help yourself if you have immunology issues - that and living with the Amish to avoid too many vectors of new diseases! I am serious and yet also not. I am sure we will find a way forward. She is coughing a lot and not happy tonight again, and I can see why people go on prophylactic a/bs - in a heartbeat.

[Pipsqueak77]

Hi

Yes.... definitely! 😜

Don’t be put off long term antibs by peoples scare stories if they are offered to your daughter. The most important thing is to keep her well.

They have been life changing for me.. and I really have not had many problems at all even tho I have taken them for many years.

Hopefully it won’t come to this tho for your daughter. Just make sure they keep an eye on her levels - even if you have to remind them.

Fingers x all goes well for you all. 😊😊

Pipsqueak

[HowNowWhatNow in reply to Pipsqueak77]

Thanks Pipsqueak. At the recommendation of her asthma doctor, I’ve actually started her on Montelukast. Am very wary of the possible neuropsychiatric side effects but the doctor made a strong case for it.

[Hidden]

Good morning, I saw this and wanted to say that I hope everything will work out fine with your little girl. My son was always very poorly since shortly after birth and was admitted to hospital at 7 weeks old with pneumonia. That was the start of it & there were numerous hospital admissions and countless tests and investigations. They suspected cystic fibrosis as it was always his lungs affected. However, despite them checking for CF on 3 separate occasions the tests were inconclusive. They did all kinds of tests and biopsies & It was only after a specialist immunologist got onboard that they discovered my little boy had hypogammaglobulinaemia. He needed to have weekly intramuscular injections of IGG until he was about 8 years old when they came up with an intravenous form of the treatment which meant he only had to go to hospital every 3 weeks for treatment instead of weekly, My son continued with his treatment there until he was 17 years old. However, he was also on continuous alternating antibiotics.

My reason for sharing this with you is to reassure you & let you know that if your little girl’s antibodies level was to be below what they term ‘of clinical significance’

then they will speak to you at that point. Some young children under the age of 4 years can have a borderline low level where there are no real problems and it’s an incidental finding. Most of these children will have no problems as the antibody level will rise without the need for any treatment as they get older.

Good luck with it👍

[HowNowWhatNow in reply to Hidden]

Thank you, Rainbowbrite. Your poor son, going through a childhood of hospital visits ... but it was all for the best. My daughter had bronchiolitis at 7/8 weeks, very badly .. and has had non-stop infections for the last year and a bit, often bacterial, so I am afraid to say she is not of those who wears their immune deficiency lightly. I found out yesterday that she also has some kind of binding protein deficiency too. As rough as it is to find this out, it almost comes as a relief to know that there is something wrong because I have had to fight to get GPs to take me seriously / recognise that she has been ill, with many scary A and E trips, non-stop for over a year. Almost!

And your son is well now?

[Hidden in reply to HowNowWhatNow]

Hi again Geogeor, so sorry to hear that your poor daughter is going through such a rotten time of it bless her. I totally understand what you mean when you say it comes as almost a relief to finally feel like someone is taking things seriously as you always know, as a parent, when things just aren’t right don’t you?

Please let me know how things turn out as it can help to have someone who has been through it themselves.

The great news is that my son is now a fully grown adult which was absolutely unthinkable when he received his hypogammoglobulinaemia diagnosis as his dad and I were told that in all probability the severe damage caused to his respiratory system would take their toll on his body and he most likely would not survive beyond his late teens.

We had to go see a genetics specialist as well and it transpired that I was the carrier but that only boys are affected by it but girls can carry the gene.

Weird isn’t it?

My son now is a father himself and I am so unbelievably proud of him.

The doctors were all absolutely astounded by how well he was doing and said it had never happened before where someone who was so badly affected by this disorder had started to produce his own antibodies and no longer needs any treatment whatsoever.

Personally I think it was something of a miracle tbh!

Anyway, good luck with everything and please do keep in touch.

Take care 🌸🌼🌻

[Jenzzie18]

Both my daughters had IGA deficiencies but have both since grown out of it. My eldest who is also asthmatic had three lots of pneumonia in a year due to it. They generally retest when they are around 5. I am a severe brittle asthmatic too so was unsurprised to find my daughter also had it. X

[HowNowWhatNow]

I’m glad they’ve grown out of the immune problems. My daughter has had a lot of pneumonia, too. Medicine aside, do/did you do anything that helped your daughter/s with their breathing problems?