Ivig

[kjosborne]

I just came to get support I'm very lost and anxious with all of this. My 4 month old was diagnosed with ITP his platelets were at 7,000 and now up to 214,000. He got ivig a week ago and now the petechiae is back and I'm scared his platelets are going down again.

[JasonJ]

IVIG isn't a long term fix, so it's quite normal to drop again I am afraid. I don't know what other medicine they give to kids but there are a lot of options. It's likely to be short term, it's usually the case with children.

You need to tell your Haemotologist about the petechia as its a sign of low platelets of course.

I know it's worrying but I am afraid it is usually a bit of a roller coaster ride. My platelets have been up and down for a year now, although I have a reasonable count compared with my first count of 3.

Good luck

Jason

[Hogze]

Actually, I did receive the IVIG also, but my doctor was honest with me, she told me that this is not a treatment: it was only a temporary solution to boost the platelet count. Afterwards, when my platelet count was boosted, it was safe to go under the splenectomy procedure. That worked for me for few months.

[rharvin in reply to Hogze]

HI

After you got your spleen removed did you have any problems with platelets dropping again

[sailor]

Hi kjosborne. Jason is correct in what he has said. Children often remit within a period naturally. Prof. George from Oklahoma said once, ITP is far worse for the parents than it is for the child. Take heart from this. However, if you are in the UK, if you look at the ITP Support Association's web site ( linked from this site ) you will find a list of specialist centres throughout the country. This list can be found under forum. Edinburgh and Manchester have children specialists in ITP, but all can provide expert advice and treatment and equally important, all the specialists in this group communicate with each other and share information. Chin up.

[prasadyarra]

Try to deflazacort tablets,,,, and ask ur doctor..

[lc12345]

Hi, you had quite a few responses already but I'd like to still add mine to support what Jason said and to give you a bit more confidence. Whatever I read about ITP in kids was quite optimistic in terms of the condition not necessarily becoming chronic, unlike in adults. Immunoglobulin is a common treatment and it does treat kids sometimes leading to recovery, again, unlike in adults. Hope your child recovers soon

[scaryteacher]

My lad had outgrown his ITP by six months old. He was born with it, had IVIG just after he was born, and blood tests for about 6 months until they were sure he over it. He is now 20, at university, and hasn't had ITP since, unlike his Mum!

[palash199 in reply to scaryteacher]

Hi you have give vaccine your lad first six month after he born.

[scaryteacher in reply to palash199]

He had all the normal vaccines given in the UK, so MMR etc.

[kjosborne]

Thank you all so much. I just needed words of encouragment. I called the doctor and they also said his platelets will go up and down. Itp is so scary.

[takari]

You should join the facebook support group for ITP, best community of people there is. There are a lot of mothers with children with ITP and many adults, like me, who are also there. It's a difficult disease and we all need all the support we can get.

[Laffa2779]

My daughter is 6 and has had ITP for 3 years now! We did ivig a few times and every time her platelets would drop back down! It's pretty normal. Ask the doctor what other treatments they could try! My daughter is on a weekly injection of Romiplostim and it's working well but don't know if your little one is too little! Ivig just didn't work for us!

[Nespinoza]

Hi looks like you need to let the hemotologist know the petechia is back I have been diagnosed with itp for like 10 years already it's a roller coaster ride i had a splenectomy done which helped for only one month and platelets dropped my last ivig was Oct 2012 then Sept 2015 since then I have been doing good I go for blood work every month but from what I heard children grow out of itp... I don't know what other medication is good for an infant hope all goes well

[kjosborne]

I called the doctor he has an appointment next Tuesday. The petechiae is getting worse everyday. I was really hoping the ivig would work and we could just be done with it. It's so heartbreaking to watch your 4 month old go through so much already.