Please Any Advice

I have posted in the newly diagnosed as well. My daughter, now 13 months, has been diagnosed with ITP on Tuesday when her count was below 6,000. They gave her the IVIG treatment and her count was 38,000 when we left the hospital on Thursday. They projected her count to hopefully be in the 150,000 today, but we do not go in until Monday to get her count rechecked.

I'm new to this whole thing and really freaked out. I keep reading about hemorages and head injuries. I am the type to let my mind go to worst case scenario. My daughter is stating to walk and falls down constantly. How hard do they really have to hit anywhere for it to be concern? How likely is it as well for them to have any serious complications of bleeding? No one I know has ever had ITP or heard of this condition. I'm really looking for help on what to really worry about and what to expect. Any advice is welcomed! Thank you.

My son was 5 when he was diagnosed, so we didn't have the whole "learning to walk" worry, but we had other worries - riding a bike, playing sports, etc. It is scary, but you will learn to balance the hovering. Even when learning to walk, how many times does a kid (ITP or no ITP) really fall and hit their head hard? You're right to be diligent and try to keep your daughter as safe as possible - Ann had some good ideas in response to your other post. But you also have to accept that kids fall and get bumps and bruises and they're okay. I think that when our kids were learning to walk, our floors were carpeted and that helps cushion the fall. When Brady was first diagnosed, we definitely spent some weekends on the couch, trying to do quiet activities. You want to wrap them in bubble wrap, but it gets easier with time.

Hopefully you'll find out on Monday that the IVIG worked well and your daughter's count will be high. IVIG always worked well for Brady. Most kids that are diagnosed as young as your daughter have acute cases of ITP, so don't think too much long-term; take it one day at a time and ITP may be a distant memory soon. You'll be monitoring your daughter's platelet count more frequently in the beginning, so you'll know when to be more diligent. Brady plays lots of sports and leads a very active life, even with ITP, so it's possible to get to a place of normalcy, but it takes a little time.

Good luck - and feel free to ask questions here. There are a lot of people on this board who have been through what you're experiencing and it always helps to know you're not alone.

Beth - mom to Brady (age 13, diagnosed 1/18/02)

Hi

Doctors always give you the worst possible scenario - about anything, not just ITP. Of course, it is important that you understand the implications of your condition, but I don't think that they realise that most people then go onto obsess about that worst case, when in most cases, it just doesn't happen! ICH is really, really rare - something like less than 1/2 of 1%, and most cases are within the first week I think.

Of course, you should minimise risk where that is possible without ruining yours and your daughters life. So think about padding corners that she regularly bumps into, don't let her climb tall climbing frames, maybe even think about a soft helmet. Then try to let her get on with being a 1 year old! Maybe look up the symptoms of an intercranial bleed just so that you know what to look for.

Another thing I've learnt the hard way is to worry about symptoms not counts. Counts can be low without being problematic, as long as your daughter isn't actively bleeding (not just bad bruising or petechiae). Yes, a normal count is over 150. but my son's consultant reckons most people could survive perfectly well on around 50 - certainly over the last year I've adapted my expectations downwards, to the extent that if my son achieved a consistent count of 50K now, I think I'd be completely worry free.

Dougie had a count of between 1-20K for the first six months and now varies between 15-100K. During nearly all of this time, he has played football (soccer), rode his bike with a helmet on, gone to scout camp, done PE at school, etc etc - all without any real mishap. In fact, to reassure you on the head injury side, he once went to the children's ward to get a blood test, came out and walked slap bang into a door - yes, he had a massive bruise on his forehead, but nothing else. His count that day was 4K.

Hopefully your daughter will improve within weeks - in the meantime, try turning down the worry button a bit!

Good luck, Ali

I agree with the others. It is the hardest at the beginning when you are just learning about this disorder. After a while, you learn how to rely on the symptoms rather than the count.

I would also watch and see how often she really hits her head when she falls down. Most of the time, it is just a thump on the head and that really isn't enough to cause a head bleed. Like someone else said, become familiar with what the symptoms of a head bleed are. For the older ones, we can rely on their speech, but for the younger ones...if their crying sounds much different than usual, something is off.

If it helps your sanity, go ahead and purchase one of those soft helmets. There are babies who have to wear them for other problems so it isn't something that would completely single her out from other toddlers.

Hang in there....take it a day at a time and ask her dr every question you have to get some reassurance that you are doing everything right. She's still a baby so they should expect your questions. I also pray that she is one of the 80% who are a chronic case and really, the younger they are, the higher the chances are of it being an acute case.

Thank you everyone for your advice. I do not know anyone who has ever had to encounter this disorder, so it is really nice to talk with parents who have/are going through the same thing. We go for a check up tomorrow so I will def. ask more questions. Thanks again for the advice on what to really look for.

Look online at the connection between ITP and Helicobacter Pylori (H-Pylori). Do not listen to any doctor that tells you they do not believe there is a connection. There are several tests for this bacterial infection: blood, stool, breath test and I believe, a somach biopsy. Some tests can give a false negative, so if one test is negative, you should try the next. In many cases, there IS a connection. I had ITP for 2 years (6 years ago), My hematologist would not test me for it even though the connection was posted on the cover of a hematology magazine "cover" in 2002. If I had listened to my Dr., I would not have a spleen today and would be on prednisone forever! My hemo refused to test me, so I had to have another Dr do the blood work. The results came back positive and I took the prescribed medication. My platelet count rose very quickly and than began to slowly fall. I had read that it was a tough infection to get rid of, so I had a Dr. test me again, this time, the test came back neither positive or negative. Couldn't get my Dr. to renew my presription one more time, so I went to Mexico and got it myself! Within a week or 2 my platelets were in normal range and have stayed that way for the past 6 years. Since then, I have come across 2 other people with ITP, I told them to get tested, they did and they were both positive. Both of their hematologists refused to test them, so they had to go to other Drs and pretend that they has ulceric like symptoms to get tested. I hope some of you can find an answer through this post. I wish all of you the very best.

Interesting you mentioned the H-Pylori link, I pushed to have Kayla tested for it last fall and her result came back negative. I was talking to her Hematologist last Wed. and he asks if she has any tummy problems and I again tell him yes she has been on Prilosec for a few months now. He brings up the poss. link, I reminded him we had her tested and that the results came back Neg. and he then informs me there is a false negative. So he is talking with her Pediatrician to have her tested AGAIN. I am wondering if the treatment is so Benign as he put it why not just treat and see if it works:-) :woohoo:
Anyway I do agree with others to worry more about symptoms than counts. Counts become an obsession around here at times with even Kayla( asking to get check because she want to know. And a soft helmet for peace of mind sounds like a great idea. I'm still on the look out for a bubble wrap suit
Good luck to you as you begin this roller coaster of a journey and I hope your daughter is an acute case and will resolve itself.