My son and his ITP

Hi my name is Amber and I have been doing research on ITP because about a month ago I noticed my 3 yr old son was covered in bruises that weren't healing and just looked horrid. Of course people giving me looks like I was abusing him was very hard, he started getting petechiae all over his body, and then came the nose bleeds and every time they drop back low he gets this nagging cough that just won't go. We took him to the doctor bc I suspected then his platelets to be low because I am in nursing school. Took him in and his platelet count was at 9k. We went to Vanderbilt Childrens Hospital where he was given IVIG, his counts went up to about 30k and within a few days had dropped to 15, we then tried WINRHO which brought them up to 84K which we only found out they went up so quick bc he had a reaction to the WinRho that included fever, chills, vomiting, headache, and back pain. About a week later his counts were back down to 23K then we went to have bone marrow biopsy and the next day had dropped to 16K. They started him on dexamethasone which of course brought his count up to 66,000 and they are thinking oh he is cured well that was Monday, Friday I take him in and they were at 8,000 which I knew they had gone down bc the bruises were back along with everything else. I am so stressed bc trying to keep a 3 yr old from falling and safe has to be one of the hardest tasks. I know he doesn't feel good and it is very overwhelming. I am in nursing school and the only place in our text we find anything over ITP is of course in the cancer section which increases my stress through the roof. We are still waiting for our bone marrow results and I just need some sort of advice. Other things to try bc they are trying to look into it, ways to protect him, etc.

Hi

I want to start this off by saying I am by no means an expert -- particularly concerning children with ITP. I am a 25 year old who was diagnosed with ITP in August of 2011. I can only speak to the experiences I have had and the knowledge I have acquired through this site and elsewhere.

First, it is a huge step that you are here. I felt very alone when I was first diagnosed. I had never heard of ITP, and no one in my family has ever experienced a severe medical situation of this nature. It was difficult to explain what I had and how I was feeling to family and friends, and the fact that I didn't know anyone who was going through the same thing (or had gone through the same thing) made it worse. I found this site right around the time I achieved remission, and I have been thankful ever sine. So, know that you will find support here.

Second, ITP for children is much different than ITP for adults (per the knowledge I have). I believe that children usually develop ITP from a virus, and it is usually a one-shot and they are done. Adults develop ITP for no known reason, and it is usually a chronic thing -- meaning they will have flare ups and remission. Someone else can correct me here if I am wrong.

I started out on Prednisone, which is a steroid that a lot of ITP patients are started with. We realized that wasn't working very quickly, and I was given an IGG infusion and then put on Dexamethasone. I did pulses of that for nearly six months. After three months, we realized that wasn't working. So, I was given a few options and decided to do infusions of Rituxin. I credit Rituxin with getting me to remission, and of all the treatment options, that was the least rough on my body. I've been in remission for about six months now, and while I still have regular blood tests, my life is pretty darn close to normal. So know that things will get better. The more knowledge you have, the better off the process is -- in my experience.

Feel free to ask me any questions you have. Everyone here has been so helpful. You may want to check out the parent section -- specifically for parents with ITP.

Best of luck!

Jess

Amber:

Hopefully the parents will start chiming in. They have a lot of knowledge and experience that will help you a lot.

Read the children's section. You may find some calming information in the threads posted.

In the meantime - forget the cancer stuff you are reading. ITP has nothing to do with cancer and shouldn't be lumped into that category. Breathe - ITP is treatable and manageable.

Hi Amber

Welcome to the group, sorry you have to be here but I think it will be real helpful!!


My son is now 2 and a half, I totally understand trying to keep them safe feels impossible. I can tell you some things we have done but I hope yours is short lived and maybe you won't need to turn your entire house into an ITP zone. My son always wears a helmet if he isn't sleeping, it was hard at first but he has adjusted and now will ask for it before he even gets up. We don't have beds no frames or headboards, mattress on floor is all. We do not have a toy box, toys are just in the corner of the room!! (climbing issue).. Dressers are in closet, there is no computer chair, no coffee table, no end tables...I think you are getting the picture?? Anything he can climb on, or if he were to fall is no longer in the rooms he is allowed in.

I know how scarey this all is...my son hasn't had a count above 10 but you do start to adjust and he has done just fine. We are extra careful but he has done great considering and it will get easier!!

80-90% of kids get better in a short time, and that can happen even without treatment!! Stay positive!

Welcome Amber. Sorry to hear your son is dealing with this. Hope it is an Acute case and he bounces back on his own. Very helpful group of people here.

Hi Amber,

My son is a bit older - diagnosed at 10 and is now 14. I just wanted to reassure you that ITP is generally a manageable condition and most children live near normal lives with it. And this is for the minority of children whose counts don't recover quickly - most children are back to normal in under six months. Its not anything to do with cancer, and it probably doesn't make you son feel ill.

Hope it disappears quickly for him

Ali

6 weeks in with our boy of almost 3.

Unfortunately he has a 17 month old brother and stopping the rough housing is a CONSTANT uphill battle.

I am glad I found this site to buoy my own sanity.