My 14 year old son newly diagnosed with ITP

My healthy, active 14 year old son was recently diagnosed with ITP after routine blood work showed he had a platelet count of 11,000. He was admitted into the children's hospital in our city and kept overnight for observation. By morning his platelet count was down to 7,000 so he recieved an infustion of WinRho. A week later his platelet count is up to 72,000. He will be rechecked again at the end of this week. His doctors said that they are cautiously optimistic that his case will be acute and that his numbers will continue to rise and not fall again. After doing some research on my own, and reading posts on this website, I am still hopeful, but a little wary.......Does anyone here have any experience with adolescents and ITP? Are their chances any better for having the acute version of the disorder, or, realistically, am I looking at a long road ahead?

Hi Page Welcome.
I don't have any experience with adolescents and ITP as I am an adult with it. But I would like to encourage you to believe for the best. No one can say for sure about your son, but either way it turns out keep an upbeat attitude and it will be easier! Please keep us updated.

Hi Page

No one can know the answer to whether it will be acute or longer lasting. I've heard from doctors that kids are more likely to get an acute version if they are under 11/12 years of age and if they have had a preceding virus. However, in the time that I've been reading these boards, there have been kids, teenagers and adults who have recovered quickly , so definitely keep positive. Either way, ITP doesn't need to mean the end of life as you or your son know it - its a real nuisance sometimes, but thats all.

Good luck, Ali

Thanks for your encouraging messages. I do have high hopes...just worried as you all can imagine, I'm sure! Page

Page,

I, like most people on this site, would love to be able to just give you an answer. Unfortunately this condition is confusing, inconsistent and has no answers or roadmaps. I was once told that if you asked 4 different hematologist their opinions about ITP, you would get 10 different answers (my hematologist said she had 2-1/2 of those answers). The good news is that regardless of your time dealing with this, you WILL make it through, that I promise. Myself along with others are well into the chronic part of the condition (my daughter was diagnosed 6 years ago at 3-1/2) and have kids that are doing great, having fun and living life to the fullest. That being said, there is still great hope and optimism that you will not make it to that stage and it will get itself figured out sooner rather than later. Unfortunately I cannot speak on any differences to adolescents being diagnosed vs. smaller kids. I have heard that the closer they are to being an adult when diagnosed may be a factor, but not for someone just entering their teen years. The biggest thing I applaud you for is reaching out to a group like this. It sounds like you are already getting the medical advice that you need. What is really important is getting that peer support and knowing that you are not alone. Like any condition, it is always scary when you first start reading about it. One thing to keep in mind with ITP is that every kid is different. If you gave 10 kids, with the same platelet count, the same exact treatment, you could very well get 10 different results. I do not encounter too many people on this site who are doctors so it is very important to keep that in mind when people start sharing their experiences. There is value to knowing what is out there and what people have gone through as long as you do not read it and start to think that this will absolutely happen to you as well.

I hope you will continue to use this organization, this site and this chat room.

All my best,

JJ

Dear Page,

My daughter was 12 when she was diagnosed, and as she had been having her cycles for over a year, and was fully developed, her doctors did use that as one of the criteria to look at, when assessing whether they thought she would be an acute or chronic case. They also did some various tests that helped to rule out certain other diseases, like Leukemia, Lupus and Rheumatoid Arthritis. Another part of the assessment is in how quickly, and to what degree does a patient respond to any treatments. Those that don't have any, or only a small rise in platelets with a certain treatment, are usually thought to have far less chance of having an acute bout of ITP. Your son seems to have had a pretty good rise from the WinRho.

But, just so you know, many of the treatments were never intended or expected to keep the platelets up for long, but are more of an emergency measure. (This is true of WinRho, IVIG and Prednisone. At least, this is what one of the researchers at an ITP conference emphasized to us.) It is not unusual for counts to drop even lower, after some of these treatments (esp Prednisone). For my daughter, her platelets never rose more than a few points with either WinRho or IVIG, and by the following week, they had already dropped again. We finally found a cure in the form of a homeopathic remedy that was chosen specifically for her. It took her counts from 11k to 411k in 4 days! And, she had many other changes with that, as well. Her counts have remained high, since, and it has now been over 6 years. You can read her story on the Original PDSA forum, under the heading of Natural Treatments, and under the thread of "Homeopathic Doctor".

Thanks again for all of your help with this strange disorder. I do have one more question for all of you....

How often are your (or your child's/spouse's) platelets counted? At this point we are checking once a week. My son was completely asymptomatic with a platelet count of 7,000 (no bruising, no bleeding, no rash) so I wonder how we will know if the number drops that low again between counts?

Page

For the first couple of months, once a week, then once every 3-4 weeks for a while, now once every 3 months unless we are concerned by symptoms, in which case, the local hospital will do a FBC on request.

Page:

My sister was diagnosed with ITP at the age of 16. She treated with Prednisone on and off for a year, then went into remission. She is now 44 and has never had a recurrence. There is always hope.

Page - my daughter was 11 when she was diagnosed. She had a count of 2 when diagnosed, but looking back, she had symptoms before that, but we just did not realize that anything was wrong. (i.e. she had episodes of petechiae, but we just thought it was a rash, and about six months before she was diagnosed, she had some teeth out, and bled for about 5 hours afterwards).

Danica does not respond to WinRho because of her blood type, and did not respond to Predisone. We tried Dexamethasone, and her counts were great for the four days that she took it, but fell as soon as she stopped (i.e. from 249 to 24 in two days). We tried three pulses of the Dex with the same result each time.

She gets IVIg every two weeks, and we are waiting to start the Rituximab.

Hopefully your son will recover, and stay that way. They say that young children usually recover spontaneously, but it sometimes seems that adolescents are not so lucky. Everyone is different.

Good luck.

Michelle

Michelle,

I am so sorry Danica has had such a hard time with ITP. How long has it been since she was diagnosed? My son, Ashe, has had WinRho with no success and one treatment of IVIG. He seemed to respond well to IVIG at first (counts went up to 107,000 after 7 days) but now, after 10 days is back down to 71,000. The doctor is supposed to call us tomorrow and let us know what her plan for him is. I didn't realize he could have IVIG again so soon. We haven't tried steroids yet and I wonder if that will be out next line of treatment. How did Danica do on steroids? I know you said her platelets didn't stay up on them, but were they hard on her system? Is Dex given only by IV? How long does it take to infuse? Why are you waiting to start Rituximab and why do you have to wait? I'm not sure exactly what that treatment is. Thanks so much for sharing your experience with me....this is all so confusing.

Page

Page:

IVIG is usually temporary, so unless it's the only thing he responds to, it's not normally a treatment of choice (takes so long to infuse).

Dex, or Decadron, can be given orally. It is a much stronger steroid than Prednisone. Yes, steroids are sometimes very hard on individuals but can cause remissions, so it is sometimes worth it.

Rituxan is a monoclonal antibody. It targets B cells and T cells that produce the anti-platelet antibodies. It's an infusion, usually given once a week for four weeks. The infusions can take between 4 and 6 hours. Most people have few side effects.

Hey Page:

Sandi summed things up perfectly.

The Dex was brutal on Danica - she had every side effect imaginable. Because of this, she took it on alternating days during her third pulse, in an attempt to lessen the side effects. It kind of worked - she was good on the days that she took the pills, and then suffered the next day. So, of course, because of this, instead of just the four days, it dragged on for 8 days.

It was so nice to see her platelets up so high during the days that she was on the Dex, however, they fell as soon as she stopped taking the pills.

She was on alternating doses of Prednisone for about six months, with no effect.

Win Rho does not work on her because she is only a "weak positive". This means that there is not enough "d" in her blood to enable the winrho to work. WinRho attaches to the "d" (hence calling it "anti-d").

We have to wait to start the Rituximab because it is not labelled for use in ITP in Canada. We have to apply to our provincial health system for them to approve it so that it can be covered. Our hemo has never used it before on peds, but we did see a ped hemo in another province (at a big city hospital) and they have used it quite often, with some kids going into remission for up to a year. That would be so nice to not have to go to the city every two weeks, all winter again. I hated driving on icy roads with a kid with platelets below 10.

Danica was diagnosed in June 2009. She has received IVIg 43 times.


Michelle

My daughter was 11 when she first had ITP. Her counts went from 10K to 600K to 3K with no treatment in a matter of a 3 -4 weeks. She was treated with IViG when her counts were at 3K. But she stopped the crazy roller coaster when she was diagnosed with anaplasmosis, a tick borne disease that wrecks havoc on platelets, and treated with antibiotics (IV given along with IViG).

Her ITP disappeared for about 4 years. Then it started coming back each time she had a viral head cold or even a flu shot. Thankfully she recovered with no treatment most times, just counts measured every day then every few days then weekly/monthly until stable in the normal range. Only once since the initial episode did she again require IViG, and we now think that is when she had mono.

She's 18 next week, doing well in college. Spent the summer as a counselor at a sailing camp where bruising was the norm from the hard boats. Survived the first viral cold at college with just mild petechia and she didn't even get a count cause they cleared up so fast.

I call her ITP "recurrent acute" though the medical world seems to call it chronic. She can't give blood. But her life is pretty darn normal unless she gets sick.

Hopefully you have a mild case on your hands.

Thanks to all of you for your help, advice, and personal experiences. This whole thing is so confusing. Ashe has now had one Win-Rho (totally ineffective), three IVIGs and is currently tapering off of steroids (from 120 mg to 60 mg per day). The high dose steroids make him feel terrible, but his platelet counts were in the normal range for the first time since we discovered his low platelet count (Sept. 2010). I do have another question, though....

How long do petechiae take to fade away? Ashe has had petechiae in his mouth (tongue and larynx) off and on depending on his platelet count. His platelet count was high at last count, but he still has a LOT of petechiae in his mouth. He also has some on his back and chest. Does this mean counts are probably down again, or could they be left over from the last drop?

Thank you, again, for all your help!!

Page