Baby with ITP

[Calouk]

Hi I'm new and a bit lost and I guess looking for input/help/someone to listen. My 5 month old baby girl has ITP. Has done since she was 2 months old. For two months she pretty much had no platelets, not low - almost none. They'd see an occasional one (nice and fat) on the slides, but she wasn't responsive to either steroids or IVIG, other than to control the 'spontaneous' bleeding (and that still look weeks). Took her off steroids and she'd start the bleeding again (mouth, nose, eyes, skin), requiring more hospitalisation. We're now in the third month - with ongoing IVIG she's able to get up to 40, but every time she gets a cold they disappear (I also have a toddler in childcare who keeps getting her sick). I'm worried about teething - I'm worried about her learning to crawl and then to walk with no platelets. Has anyone else experienced a baby that may or may not be getting better?

[Hidden]

Ask them to give her tranexamic acid to help control the bleeding she can live with a lower platelet count if this is controlled. We carry it with us at all times it can be given orally or iv.Children of this age usually grow out of it so as long as the bleeding is maintained she will do ok

[tigerpurrs]

Hi, I know you feel hopeless, and that sounds like myself with the low platelet condition, and nothing helped me except trying the new medications. Please try to pray and ask God to heel your little girl and ask Him give you inner peace. You have to see the specialist to give you the advice because he knows the blood platelet the best. I will pray for you and your family everyday, and please be strong and take care of yourself.

[nishassa]

Very sorry to hear ur news. Praying for ur child