Question and Advice Needed

I have been lurking on the board for a few months since my 8 year old daughter was diagnosed with ITP on April 1st of this year and am finally brave enough to ask a few questions.
Here is a brief background- She woke up one morning with a bruise on her hip that took my breath away. The rest of that week she had some crazy cobalt blue almost black bruises. We took her in and she had a platelet level of 6,000 so we admitted her and administered IVIG. Her level came up to 84,000 next day so we were discharged and told to come back weekly for CBCs. After high of 189,000 she dropped down two weeks after IVIG. Her level hovered above 20,000 for about three months and then dipped down to 18,000 so we did another IVIG. Since that second IVIG she has stayed anywhere between 81,000-55,000 for the past three months. 41 blood tests later (a few times twice a week since we were low 20s) and everything else has been perfect on blood test results except the platelets. Her symptoms are every once in a while she has a few bruises on her shins and bony parts of her arms nothing else. Right now she has not a single bruise on her and hasnt for over a week! Here are my questions for all the pros out here.

How do you deal with the stress of waiting for the weekly platelet count? I find myself getting so worried that I'm a little bit obsessed.

With no symptoms except very light bruising should I be watching for anything else as a sign of her platelets going down.


I want to thank all on here who have posted and given a resource for parents like me who are new and nervous about this crazy disorder.

While you read this you need to bear in mind that I am based in the UK - and we seem to have very different treatment protocols. And a lot depends on whether or not your daughter has bleeding problems.

However, I really don't think that you need to be going for blood tests quite so often at those counts. No wonder you are getting obsessed!!! Just for comparison, my son sits quite happily at about 30 most of the time, with the occasional dip to around 10. He only has 3 monthly appointments, although we sometimes take him into the local hospital for a count if we think it is particularly low based on symptoms - only really to persuade him to slow down a bit. Maybe you could ask the doctors to go to once a month?

As for symptoms of platelets going down, I think it changes over time and depends on the individual - but the ones I notice on my son are, pinprick rash on lower legs, "dirty" looking legs (can't explain it any other way, but he looks as if he hasn't scrubbed off the mud off hard enough in the shower!), and sometimes, moodiness. And of course, there are the bruises he can't explain. Also, if he is low he gets marks on his skin where he has say been scratched and he bleeds under the skin - like a graze but without breaking the skin. He once had a brilliant pattern of this on his thighs which matched the mesh lining of his tracksuit trousers!

Try not to worry too much - I find it helps to remember what the consultant told us, that we should try and view ITP as a risk factor rather than an illness per se. Good luck with whatever you decide to do re appointments, and with your daughter's next count.

Ali

I know how you're feeling. It's very easy to be obsessed with bruises, petechia, counts, etc. at the beginning. My 13-year-old son was diagnosed when he was 5, so we have been dealing with this a long time. When he was first diagnosed, we used to go for counts at least once and sometimes twice a week. I think that our doctor was overly cautious back then, but also they didn't really know Brady's "pattern." Every child, every person is different. So one person may have very slow, gradual drops and another may drop very quickly and need treatment.

It sounds like your daughter is a little bit stable, if she's hovering between 50 and 80k, so maybe you and your doctor would be comfortable stretching out the time between counts. It definitely gives you more freedom and peace to wait a little bit - maybe see if you can go to a CBC once every two weeks. We have a standing order for the hospital lab now, so we only get a CBC when we think Brady's count may have dropped.

Some signs of a drop in Brady's count (but, again, every one is different): dark circles under his eyes, he's more tired, petechia, especially one spot on his cheek, and extra bruises. Those symptoms usually indicate a low count and then when he's really low (less than 15k) Brady will start to get nosebleeds. Brady is one of those kids that will have slow, gradual drops after treatments, but once he falls below 20k he'll nosedive quickly and need treatment.

It can be exhausting at the beginning, but your daughter has had good counts for three months, so try to focus on that and not on the "what ifs." For me, it really helped to stop running to the doctor's office every week, which let me be less focused on the ITP. We have been at this a long time, but now we only get CBCs every 6 months or so, or whenever Brady starts getting nosebleeds. You'll get to the point where you feel more comfortable with her pattern and it won't be your obsession, but it takes some time to get there. You have my permission to give yourself a break about obsessing - you're still new to this and you want your baby to be okay!!

Good luck - we promise that it gets easier with time!

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

I was having counts done every week and was stressing a lot and i have now moved to every second week and I am coping a lot better with that. I am finding I am not stressing anywhere near as much. If her counts seem to staying the way they are, it might be beneficial to ask to extend them out longer, it will also give her veins a chance to heal as well. I found i was running out of places to get the blood taken from and I was starting to get scar tissue from where the needle was put in as well.

Hi there, if it makes you feel any better, Im still in the obsessing stage! LOL My son was diagnosed in August, and we go for bloodwork once a week, at the request of hemo. And I know that the results are supposed to go back to the children's hospital stat, so if I don't know by the end of the day what the number is, I start phoning around! Ive phoned hem, if they don't have it then Ill phone my go to people from transplant, and Ill keep phoning and drive them (and myself) crazy until I get a number. I havn't gotten a handle on my son's "pattern" yet, but his symptoms of a low count are as most have said, the dark circles under his eyes, the petichia (sp?) and the bruises, but not horrible. Now for some reason when my son first started going low (3 and 2), he had no bleeding and the petichia and bruises were so barely visible, but every successive low the petichia have gotten darker and more of them, the bruises are more pronounced and the last low (3) he had some bleeding from the roof of his mouth, so every morning (see Im still paranoid) and every night before bed, I take a flashlight and look in his mouth. I still don't understand why every low gets worse, but we just go with it. My son drops quickly, used to be a count of 10 a day, now it just seems to plummet. Anyways, I hope it helps to know your not alone in your obsession, Im still the same but I think everyone is right, it will get better...I think!?!?? Hugs, to you and all the best.

THANK YOU!!!

It feels good to know there are others just like me and are feeling the same way. We have found that we can go to the Children's Hospital and have the results within a couple hours so at least the waiting time is not too bad.

My daughter has said to me "If you ask me one more time how I'm feeling I'm going to scream, I feel the same last week, last month and last year. Nothing hurts please stop asking."

At the beginning she had bruising pretty bad and would have some random bruises that you just knew didn't look normal like inside of her lower arm and inside her lower leg. She has never been a bleeder so hopefully that continues. Hitting the six month mark would have been pretty hard had I not been reading all the posts on here and realized that 6 months is just a number and not a definite indicator that its not going to go away.

I hope and wish for high high platelets for everyone.

Christine

I just called and my daughter, Hannah's platelets are 60,000 this morning so I'm going to ask the hemotologist when he calls if we can wait three weeks or a month. Wish me luck!!!

Thank you again for all the kind words and advice.

Thats awsome congradulations!!!! We just came back from the lab for bloodwork too, so hopefully we have a great count like that too....its not perfect but it would be so much better than last weeks count of 34. Good luck to you and me!!!!!!!!!!!!!!
LOL I like that....wishing everyone a high count, may everyone have a crazy high count!!! My son's bloodwork site didn't bruise so hopefully thats a good sign....praying, well do that constantly anyways!

Well done to Hannah's platelets!

Try and trust your instincts, because if your daughter got very low again, the bruises would probably tell you. Its really difficult not to drive yourself mad with worry, but I hope that less frequent counts would help - good luck with the haematologist.

Alison

p.s. Angela, 34 is not so bad because it is still in the safe range, but I hope he achieves a figure that you are happier with anyway!

Alison, I was happy with 34 too, the only thing that worries me is his symptoms seem to get worse at higher counts now ...BUT GOOD NEWS....He's up to 96 today!!!!!!!!!!!!!!!!!!!!!!!!!! YAYAYAYAYAYAYAY!!!!!!!!!!!!! Im so happy I could just dance till tomorrow morning!!!! I know that he's still on huge dose of pred and the cellcept is doubled now, but its time for some good news, I sure needed that after a god awful weekend. Smile in the face of adversity! I really wish everyone a great count and if I could I would hug each and every one of you, for putting up with my venting and whining, and now sharing some good news with you.
Hugs, and great counts to everyone.
Angela

Wow, Angela, 96 is a wonderful number!!! Congrats, thats awsome news. I'm very happy for both of you and Congrats to Hannah's platelets too. It is wonderful to hear some good news!!

I think the time between counts is something you and your daughter's doctor must work out, and it will depend on her activity level and how tolerant she is of the lower counts. ITP can easily turn a level-headed mom into a worrywart, and I cried at the drop of a hat early on. For months, I kept an index card of dates and counts, and tried to find a pattern. We initially treated at 19,000, but soon reached the point where the doctor and we were comfortable with counts in the teens without treatment, but with limitations on sports and activities. Our daughter could play mild tennis down to 25,000 but not sports when in the teens. She lost a season of volleyball, but learned to like tennis. You can adapt, and you can reach a point where the tests are fewer and farther apart. Our daughter now has counts in the normal and near normal range, and she is usually cleared to wait three or six months. Still, if she is bruising badly, looks ill, or has an increase in nosebleeds, we go in for a count. You will learn what works for your child and your family, but, yes, in the meanwhile, it can be really tough. Hang in there. We're behind you.
Norma

There have been some amazing feedback on this thread. It just goes to show how important this forum really is. I am one of those parents that have been dealing with it for over 6 years so I can tell you that while it is possible to manage the anxiety, it always seems to be there in one way, shape or form. I stopped trying to fight it because, after all, this is my kid and there is nothing more important than keeping her okay. That being said, the one thing I really needed to learn how to do is to stop the "stressing" when her count was up. When we would get a break, I would be sitting and waiting for the "shoe to drop" and her platelets to come down again. Because of this, I never enjoyed the downtime we got. Now it is different. We are thankful when she is up, we look for the signs that she gives when she is low, than we start back over in managing her back to a safe level. Unfortunately ITP is a flawed condition (with no answers) so the ways to deal with it can be a little flawed as well. My only advice would be to allow yourself those times to "obsess", but allow equal times of being at peace and having faith that they will be alright.

Hope that helps.