My baby might be having a Bone marrow biopsy terrified

[summerdreams]

Basically my son was diagnosed with severe neutropenia at just 3 months old, found by accident in a routine blood test. Under gosh heamatology never had an infection untill 9 months since then he's pretty much had one infection after the other (he's 1 on tuesday) had his app with heam yesterday theyve said that as he has constant infection and fevers everyday now he's having a tesf for wiskott-aldrich syndrome and if negative ill get a call to bring him in for a bone marrow biopsy he'll have a ga and be in 24 hours. The appointment was rushed as they was trying to get his bloods done quick to get them to the lab that day (the dr was hand delibering them) im in such a panic and he's so unwell and now the wait for these results is gonna be hard im shaking cant eat dont sleep and watching unwell everyday is so hard does anyone kniw anything about any of this experience or heard of it as I feel so alone ad its all so rare theres no groups or much info online thanks

[BlackSwan]

You must be frantic. This is awful. I haven't any experience of this. But my son has had a lot of treatment at GOSH for very serious stuff, they are excellent there. Are you home now or in hospital? Do you have family and friends as support? Are there any groups on Facebook at all - you would be surprised what you find.

[lurkerspeaks]

www.wiskott.org

US site but might be helpful.

[Origamiheaven]

Hi summer. My son was also diagnosed with severe neutropenia, picked up by a routine blood test ( looking for other things ). He has a congenital form of neutropenia. Also had the bone marrow biopsy under a GA. He is now treated with medication in the form of injections that help with infections. I found it all so stressful and I totally understand what you are going through.