Frustration!!!

Well, we're back on the ITP roller coaster after an 8 month remission. My son (age 11 at the time) was dx back in Oct. 2009 after being hit in the thigh by a baseball during an off-season little league game. His bruising was so severe that his entire left thigh turned purple (within minutes) except for a semi-white circle where the ball made impact. It was so detailed that the outline of the baseball laces could be seen. There was no associated pain. He already had a doctor's appt. scheduled 2 days later so I figured I'd have the doc look at it then. The appt. was scheduled for other concerns - leg pains, slight temp, sleeping problems, frequent sore throats---things I had cracked up to puberty & stress resulting from the start of school. My son was dx w/ADHD in 1st grade, the Fall always results in a challenging transition period.
The doc's office was unusually busy that day and the appt. was being rushed along. The doc chalked things up to puberty, ADHD & a mild infection as I anticipated. As the appt wrapped up, I explained the baseball injury & pushed the doc to take a look at his thigh. He examined the thigh, asked some questions, etc. But it was the look on his face that made me worry! He immediately sent us to a lab with a list of tests to be done STAT. He followed up at the end of the day instructing me to take him to Children's hospital that evening. His suspected dx was ITP but he also wanted to prepared me for something more serious. He was right - ITP w/ platelets at 54k.
We went to the hospital & had another round of tests. We were told to watch & wait; it was probably acute. We were put on a biweekly CBC count and things kept getting worse. We didn't like the hemoc either. We were told no sports, gym, recess, etc. NOT a good thing for an 11yr. old boy w/ADHD! I wanted to put the kid in a bubble to protect him. His platelet levels continued to drop, his spleen began to swell, his bruises multiplied (at a much smaller size) but he also had frequent nose bleeds, and was covered on his neck, face & torso with petechia. He had blood in his urine & stool after eating popcorn.
We switched Hemocs, & insisted on further evaluation. His platelet count dropped to 2k in Jan. 2010 & the ITP ball started rolling. He was sedated for a BM aspiration & biopsy followed by a single infusion of IViG. This lasted for a week and a half & his levels plummeted again. In Feb. 2010 he had his first (of many) TRIPLE IViG infusion (2 1/2 days in the hospital & aseptic meningitis each time) The triple infusions would hold him for 5-6 weeks. This went on for months along with weekly CBCs. Prednisone didn't work for him and other treatments weren't an option due to his blood type (O-). The hemoc suggested a trial run of Decadron at 40mg/4days along w/anti nausea Meds. over a 6 month period which worked well for us. As long as platelet levels were above 30k all of his activities were approved. Everyone was happy. We began to look for symptoms vs. Platelet counts. Regardless of what the research shows & what doctors say - there are tell tale signs I watch for...fatigue, mood changes, increased sickness. Then I watch for the nose bleeds & petechia; when those appear I know trouble's around the corner.
After a temporary 8mth remission the ITP monster has come back in full force. The docs put him back on Decadron but it barely lasts 2 weeks. He has nose bleeds almost daily and now has spontaneous bleeding out of the pores on and around his nose - as if the petechia is opening up. He refuses to go back to Triple IViGs due to the required hospitalization & side effects. His frustration level is off the charts right now, as is mine! Looking at some of the new Meds on the market is also frustrating due to potential liver damage - he's been exposed to enough of that with ADHD Meds. Also, I don't want anything to stunt his growth or potentially make him infertile, etc. If it weren't for the ADHD & sports, I'd go back to the watch & wait. Unfortunately, it just gets more discouraging (should be fun when he starts driving - I'll worry more about accidents & bleed outs) but we refuse to let it rule our lives. What I don't understand is the lack of follow up testing. Why hasn't he had additional testing to check for liver damage, spleen damage or a CAT scan for brain bleeds? They just pump him with various Meds, take away activities & tell us to be careful. He's now officially categorized as severe chronic ITP. The hemoc tells me that it's an unusual case because he's a boy and it's usually teenage girls that have it worse due to their periods.
Sometimes I think it's harder for boys emotionally. They don't want to be different but they're not as keen as girls in expressing their feelings. My son is now 13 & in 8th grade. He said flat out to us - I'm not going to live like this. I'd rather die doing something I love instead of watching life from a sideline. I get it & agree! We'll take precautions and stay up to date on treatments but ITP & platelet counts won't rule our lives again. We're meeting w/ his hemoc later this month and requesting a referral to Boston's Children Hospital. We'll see where this goes...

Hi Drews Mum

I am also the parent of a 13 year old boy with ITP (although thankfully not with ADHD - I don't know how you cope!).

I really sympathise with the activity thing. It really matters to some kids. At one stage earlier on, when we were still sticking rigidly to what the doctor had told us, we actually became more concerned about our son's mental health than his ITP. He felt really out of things socially because he couldn't join in with his friends in the playground and he was really depressed. He was also constantly breaking the rules so he would get told off all the time which made things even worse.

So now we compromise a bit (some may call it bending the rules!). We've talked about the risks and benefits and I think we've reached a position we can all live with. Dougie still goes to soccer practice regardless of his count and he plays competitively if I think his count is over 20 (based on symptoms). I know that this has sometimes meant that he has played with a count of 10 or less, as he can be really asymptomatic. He has continued to play basketball throughout the last two and a half years with the approval of his haematologist. He always does PE at school but sometimes swops groups to stay out of contact sports. He does supervised adventure sports like climbing, kayaking and mountain biking, but we don't let him do unsupervised activity like BMX. I've always felt that he was safer with a qualified adult present. We've also tried hard to encourage other activity which is safe - tennis, running, swimming, etc. The list of things he shouldn't be doing is quite small now - the only other things I can think of are that he doesn't play rugby ever and he can't go to theme parks if his count is under 30. Dougie is much happier with more activity, and he has responded by taking greater care in the activities that he is permitted.

Sorry, I haven't any good answers!! But I hope that life improves soon.

Ali

You might consider reading through the natural forum about homeopathy. It is non-toxic and would deal also with his ADD as homeopathy deals with the whole body, not just one issue. Our son was in a similar situation in that nothing worked and he had no platelets for months. We refused to do anymore drugs then we had and he responded very well the h-pathy. His counts are now normal and his 40+ food allergies are gone as well (nice effect for us ).

Thanks for allowing me to vent and sharing your stories. Most people don't know what ITP is and can't understand that there's no cure. Everyone says "I thought he would outgrow this." In our case, we hoped he had after 8 months of remission but it was not to be. He is now worse than ever with bleeding that lasts for hours. For him, the worst part is taking away the sports - it's his outlet for his ADHD and he's extremely competitive. We took away the ski racing but worked things out for him to play travel baseball & basketball. Gym & recess were quickly added back into his schedule as well. However, there are so many concussions in basketball that I'm now getting paranoid about letting him play. Additionally, he doesn't want to go to school out of fear of having a bleeding episode in front of his classmates & teachers. He can have a platelet count in the 30ks and still have a significant bloody nose. It now comes out his pores too. The doctors begin treatment the minute he goes below 30k because he now has a history of crashing overnight to 5k or lower and he's a bleeder. I've completed a medical 504 plan with the school in case of extended absences and we're lucky that he is a straight A student in the honors program. However, it will be more difficult next year in High School. Fortunately, academics aren't an issue right now; yet, his social life at school is important to him. But you're right, I worry about his mental health too. His current hemoc has been great about finding ways around things but even he's recommending that we take our son to Boston. Lucky for us, it's only a few hours away.

Drewsmom - Checking for liver damage is pretty simple - it can be done with a blood test (ALT and AST). Are you sure they haven't run those?

As for a brain bleed - if he had one, it would be pretty evident. He would have stroke-like symptoms and a nasty headache.

I would be the most concerned if his spleen were enlarged and they really should look at that if it continues. That is not normal with ITP and an enlarged spleen can rupture.

Good luck with your second opinion - I hope you get some better answers.

Luke's spleen was quite enlarged with his ITP. More so then they would have expected. It was 4mm larger then what would have been considered "enlarged for a child." So it is possible. We have not done another ultrasound in over a year so I have no idea if that's gone down but since his body is not eating platelets anymore I would have to assume it's not quite as large as it was at that point. His count at the time of the ultrasound was zero so his body was pretty much sucking every platelet he was making at that point (which in my mind would account for the overly enlarged spleen).

Hi Drews Mum
I am the parent of a 16 year old boy with ADHD and ITP first diagnosed in 2008, He was symptom free for a while but was found to be low again recently following a gastro virus. The first time he was treated with prednisilone with good results. However also very frustrating with no sports allowed for a year, difficult at any time but as you would be aware very frustrating for someone with ADHD as well. This time the paedatrician has adopted a wait and see approach and no treatment has commenced. He has been having regular bloods for a few months now, and at the moment no bruising or petechia to be seen. He has been referred to a haematologist in our large childrens hospital here so will see how that goes. My son becomes very frustrated with his ITP and the ongoing restrictions. I hope you find your second opinion helpful, take care