Any drs , nurses or anyone got any opinions on this please?

[summerdreams]

I have a 17 month old son, born at 33 weeks at 4 months old whilst in hospital for apnea they discovered he was neutropenic anc was 0.5 untill he was 9 months he never had an infection but was under heamatology. From 9 months old he's had 11 ear infections, tonsilitis x5, a uti and tons of viral infection they also discoveres he has low immunoglobulin but good vaccine responses, persistent thrombocytosis and Enlarged platelets. Bone marrow biopsy was booked but then cancelled as his neutrophils went up. His anc goes between 0.2 and 1.6 highest allways when ill and lowest when well they've described it as his bone marrow only remebers to fuction when he's ill and gets lazy when he's well. At the minute the diagnosis is Hypogammoglobulinemia, persistent neutropenia and thrombocytosis. Everything points to a bone marrow issue. We are not aloud out to packed places and every temp over 38.5 lands us in a&e for bloods. He's unwell 90% of the time at the moment. He also takes azithramycin 3 days a week which has made no diffrence does anyone have an oppinion on this ive been told if he got a bad infection he wouldnt be able to fight it as neutrophils only go to 1.6 and that wouldnt do much . I live in fear and im terrified something bads gonna happen and know ones got any answers has anyone got any ideas ? Thanks

I'm exhausted. Actually thought this week I can't do this anymore. I work full time though

The dietician and General pead seemed to have given up and have referred us to a gastro at gosh he has had severe reflux from birth and chronic constipation he's been dairy free since four months old and on full meds with not much change. Gastro says that as he has immune problems it could be causing delayed emptying hence all the tests he's meant to have done but they won't do if he has so much as a cold and considering he usually has an infection somewhere I don't see how he's ever gonna be fit for the ga

wolpertinger could you tell me what throbocytosis really means ? They only explained that it's proberly caused by repeat infections, yet when I ask Dr Google they say it's more of a blood clotting issue that comes with bone marrow problems even though it's written on every letter I get no one explains it.

Hollinhurst84

No advice summer, but a positive story - my 29 weeker developed neutropenia at 37 weeks when still in NICU. I can't remember her levels now but they were not good and she saw a haematologist for the first three years of her life.

Lots of hospitalisations for common cold, flu, recurrent uti s, staying away from busy places.

It was horrid and stressful and we lived on a knife edge a lot of the time.

At three years old her neutrophils became normal, no reasons ever discovered for it and she never looked back.

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Thrombocytosis is probably far and away the least interesting of his problems.

It means having a high platelet count. There are a few situations in medicine where this is interesting but not many - most of the time we completely ignore it. Which is probably why no one has ever given you an explanation of it - it's just not that interesting.

Platelets fall and rise for many reasons, again mostly uninteresting, but one of them is infection. It's normal for platelet count to rise with infection and presumably because DS has so many infections, and the rest of his immune system is busy doing nothing, his platelets rise a bit more and never get back to normal as he's then on the next infection.

Platelet counts have to be very very high to warrant any form of treatment - it's highly unlikely the sort of thrombocytosis you'd get from recurrent infection would approach anywhere near this level.

The list of problems on the letter stays the same each time usually and you just add new stuff to the bottom as it arises - if it's a long list, which I'm guessing your DS's list is I tend to tell my secretary 'diagnosis as before' and leave her to cut and paste it so everything stays on until the end of time, regardless of how current and pressing it is.

lavendersun you have made my day they originally thought it was a prem issue but said as he's past 1 he would have grown out of it by now, so in your situation it was 3 that gives me some hope. glad to here your Dd has recovered. We still sterilise, he's not aloud tap water, no play groups and at this time of year no other children atall it's a bloody nightmare to be honest. Ivig infusions were discussed In November and it was decided in novemeber that not at this moment but no my ruling it out just yet. They did say that if there's no resolve in the next few months he might get the infusions as he cannot carry on with this many infection oh and he still hasn't had any live vaccines. Allthough viral responses to the other ones were ok.

lavendersun that's such a lovely story, so happy for you and your DD.

My friend's experience was poorly DS with serious heart problem, stuck terribly underweight, lots of ear problems, worries about immune problems. Eventually 2 things helped - he was NG fed which made him put weight on so he grew and he saw ENT who cleared up the ear infections so he grew even more - and once he started growing everything else was able to mature and get better too. Effectively while he was small he was stuck in a vicious cycle where nothing could mature the way it needed to for him to get better. He's still a midget but a healthy one.

So ENT and Gastro are positive interventions, fingers crossed for you both.

wolpertinger thanks that is very helpful and makes a lot of sense.

No sweat test but he wasn't skinny until after his 1st birthday he's fallen from 75th for weight to the 25th and for height he is still 75th so looking a little bit skinny. Apart from being born with respiratory distress and being on a vent and some mild bronciolitus at 4 months he's never had any breathing issues.

summer, I really feel for you, it is very very hard. Ours was thought 'just' to be a prematurity issue, DD had a heart issue too - heart surgery at 13 months.

She never stopped gaining weight though. She had lots of serious allergies and we carried two epipens everywhere. She went on a clinical trial at 8 and she is now allergy free.

Still hasn't had her MMR yet because she has reacted to a skin prick in hospital every time they have tried to administer it. We are going to try again in another year. We have managed to catch up with everything else though.

Honestly, you would never believe it was the same child now at 9. We saw the GOSH consultant recently for a heart check up, all fine, no recheck for another 18 months. She is massively active - swims for 90 mins at a time, proper stroke classes not just messing about.

I really hope you get to tell a similar story to me in a couple of years, all the best to you and your son.

lavendersunVery nice to hear about your dd and to have someone who's come out the other side of this. Your dd sounds like she's doing brilliant .

Thanks everyone who replied its nice to hear everyone opinions as knowone in rl has any oppinions on it gps no one. Im glad everyone thinks I should be pressing for more treatment as allthough things are allways discussed immunglobulin and gcsf it's allways been not the right time, as ive said before things are not getting better infections are lasting longer with no time inbetween and ds weight is becoming an issue.

If we ever get awnsers fingers xd this year we will i'll update this thread or start a new one incase anyone ever stumbles accross it googling as info is so hard to come by.

I would definitely press a bit
My consultant put me on GCSF after my bloods came back as I was having symptoms. Am back at haematology with him this Tuesday so will see whether he says I'm to carry on with it

Back from haematology am neutropenic again after 9 days off injections so am staying on weekly ones of GCSF. Count wasn't as low but still not great at 1.3

Glad to hear your being taken seriously. I had to chase up my sons endoscopy and other tests he's being put to sleep for and the lady said haematology had put a note on his admission form for them to be contacted so Im hoping that since he's being put to sleep anyway they might do the bone marrow biopsy at the same time as I can't see what else they'd want to do with it

Fab, hopefully you'll start getting more answers

Just got the letter through he'll be having a bone marrow aspirated along side 5 other gastro tests what was a one day admission has now turned into a 3 day admission at the end of feb looks like I'll finally get some awnsers. I'm absolutely terrified he ran round screaming for hours a week ago when he got admitted I can only imagine how stressful this is gonna be

Have just found this thread (life a bit hectic)
DD 10 has Hypogammaglobulinaemia diagnosed after me nagging about her immune system. She now has x2 weekly gammaglobulin infusions done by me.
Apart from gut problems she is so much better. She has a colostomy and has diversion colitis which does not really bother her.
PM me if you want but good luck!!

Hi thought id update, we had 6 week long ear infection which cleared for 2 days and then my ds became very unwell no fever or vomiting just unable to stand up talk drink all he did was scream turned out he had a nasty urine infection we was admitted for iv antibiotics and neutrophills came back at 3, best response yet I thought this was great.

An app with his immunoligist a week later I was expecting good results but was actually told that all types of ig are low everyone and igg and a couple others are getting lower allthough none are missing there still abnormal and when I explained his brilliant neutrophil count was told thats no where near enough for a bad bacterial infection.
I was also told that him not having a fever with a serious infection is a sign the bodys not even trying to fight it so a little deflated by that. The more life threatening immuno deficienseys are still being ruled out slowely but he still thinks we may never get a solid diagnosis.

In two weeks we're in for every test imaginable scans, xrays and biopsys from just about everywhere even though im now thinking by the immunoligists view we may never name what ds actually has as he doesn't full in to an obvious box.

On a better note ds has put on some weight and is now taking an antibiotic everyday which seems to have protected him from the cold we've both had that for me turned into a chest infection.

Yes it's quite common when they have infection that neutrophils go up so would go from low to normal - mine hit 3 on medication when I was well so that's still low if poorly
Hopefully you get a few more answers soon

Lots of great advice. I really recommend a Facebook group called neutropenia moms. Between all the lovely ladies there's a wealth of information with children who have lots of different types of neutropenia.