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Autoimmune Neutropenia

(8 Posts)
Charlie781 Fri 24-Apr-15 17:22:12

hi, my son is 3.5 years. diagnosed with autoimmune neutropenia 18 months ago. neutrophils levels still only 0.30. was hoping to get in touch with people whose kids have recovered from this. thanks

summerdreams Fri 29-May-15 22:57:42

Hi just googling and came accross this thread my nestly 10 month old was 1st diagnosed at around 3 months we are not sure of the cause yet. But his count is usually 0.2 or around they told me to expect 5 serious infections within this year he hasnot hsd one untill yesterday. Now had double ear infection thriat infection vomiting and has a high temperature and is on antibiotics please let me know anything you knos about this as I have never spoke to anyone about it (except drs) as its soo rare. Really hope you see this still

Charlie781 Thu 22-Oct-15 19:17:29

Hi, just saw your post. My son has also had similar infections. About 4-5. Treated with IV antibiotics for a few days each time. Still has neutrophils of 0.1. How r u doing?

summerdreams Fri 23-Oct-15 15:46:43

Well unfortunately things went down hill from that 1st infection ended up average ing one every other week neutrophils going from 0.1 to 1.5 got booked for bone marrow biopsy but then cancelled as they went up. He's been diagnosed with an immune deficiensey and neutrooenia all uknown its actually not auto immune like we hoped he takes a 3 day a week antibiotic for the last month.. Not sure how much it is working actually as he's had 2 infections allready. Hard as you must know we're not aloud to playgroups , nursery, crouds or tubes. But we're getting closer to a diagnosis and aslong as he's not in hospital you gotta be greatfull. How is your lo getting on ?

goodasitgets Fri 23-Oct-15 23:52:28

So glad this thread popped up!
Bizarrely I have just been diagnosed with this as an adult, they are doing more tests as it's rare in adults. They think there's another primary autoimmune condition
Many many blood tests, back at the hospital in 3 weeks and I'm on weekly G-CSF injections to stimulate my white cells

Charlie781 Sat 24-Oct-15 16:54:26

Basically keeping him in a bubble for the last 3 years - like you said no play groups; no public transport.... It's also difficult to find other kids to interact with as they always pick something up from nursery especially in winter. Constantly using alcohol gels and hand sanitisers..... We also had the same 3 day antibiotic.

HopeandSoap Tue 19-Jan-16 18:54:42

Just pm'd you Charlie. My little boy has this diagnosis but we are told to carry on as normal (but avoid sick people and regularly wash hands). He's been in hospital 6 times for iV antibiotics in 9 months.

hollinhurst84 Tue 19-Jan-16 22:51:39

I should have updated really! I'm down to 12 weekly haematology appointments but staying on weekly GCSF injections at the moment as neutrophils drop too low
I believe most children outgrow it

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