ITP for almost 9 years - help!

My son was diagnosed with ITP in January of 2003 when he was 2.5 years old with a platelet count of 16 after a viral infection. For 4 years he was treated with steroids, WinRho and IVIG. His response was good, but temporary with levels always falling below 10. In 2007 things seemed to settle down and his count stabilized in the 30 - 50 range. We were thrilled. No need for treatment and visits to the Dr. only every 6 months. This fall, his counts dropped again and we have needed to treat every month. His response to steroids is good but very short-lived (less than 3 weeks). His response to WinRho was much longer (2.5 months) so we are staying away from steroids and sticking with WinRho for now. He tested negative for celiac and H. Pylori. His autoimmune markers are normal. He also took Dapsone this year but his hgb dropped too low so we had to stop. I also had him tested for food allergies, but his reactions were minimal. Our Dr. doesn't believe they are related. Has anyone linked their ITP to a food allergy?

It has realy started to affect his life and we feel like we need to do something more. We are hesitant to use Rituxan because of the side effects, multiple infusions and low response rate. We are considering splenectomy.

I know ITP changes with highs and lows and no explanations, but we have identified some patterns that aggravate/improve his ITP. Has anyone experienced any of these?
* His levels drop when he has a viral infection, but increase when he has an ear infection (150+).
* His levels drop with seasonal allergies (This is why i think food allergies may also come into play)
* His levels drop when he is stressed (e.g. His count was 25 on Monday. We decided to schedule a WinRho treatment for Thursday so his counts would be good for soccer season. He HATES getting an IV because his veins are difficult to access. He was so upset and nervous about the upcoming visit. They took a count yesterday before the WinRho and he was at 2! This has happened in the past as well.)

Any advice/experience you can offer is greatly appreciated. Thank you.

Hi Athena,
I unfortunately can't offer any advice on your patterns, but as a mom with a soon to be 5 year old son who has ITP, I feel your pain. My son was diagnosed in September and has only been treated with IVIG. The drug hasn't produced any noticeable side effects and each treatment continues to provide us with prolonged windows with stable counts.

The IV's are awful, breaks my heart when we have to get them. They never hurt any less, no matter how many times you get them... especially with kids with small veins.

Hang in there!

Hi Athena, my son has had itp for 2 years, now 13. His counts are never above 20k. We only did rituxam to no avail. We pray constantly and trust Jesus for his protection. We switched from soccer to golf. Its tough for boys with sports for sure..
We have drops during colds as well. We tested him for lymes and it was a positive but after treatment no difference. His counts always always drop at the beach, which is where it started. Noone can tell me that the environment should affect him this way but there must be something he is allergic to. My son hates the iv's too. We've only done ivig a few times becuz it makes him feel bad and only lasts a short while.
What are winrho side effects??

Athena:

I can't tell you what to do, but I would like to give you some points to ponder.

I actually think the response rate for Rituxan is pretty good. Many people here have had good remissions from the treatment (a year or more). Reading the side effects is scary, but most people tolerate it well with few or no side effects. I've been seeing more side effects from IVIG lately than I have with Rituxan. There have been studies that show that one infusion may be enough for ITP, so he may not have to have all four infusions. You could do one, wait about 6 weeks, and if there is no response, go with the other 3. Having all four treatments in a row is not necessary; it's just recommended but for no real valid reason. Most people sleep through the whole thing. I do think of Rituxan as a heavy duty treatment and not one to be taken lightly, but it can be successful and there are many good stories.

Splenectomy is a whole other ball game. Most people think the biggest problem is risk of infection. While that's true, there has been a lot of research lately linking splenectomy to a higher risk of blood clots. There have been several (young) adults lately who had a splenectomy and have had strokes or serious blood clots. Sometimes ITP can also go along with certain clotting disorders and unfortunately, they don't find out until they have had a clotting problem. This can occur with high counts or low counts. Some have had to juggle low platelets and blood thinners at the same time.

I'm not trying to scare you, but I think people need to be aware of this. The risk is even higher if the splenectomy fails at one point and treatments are needed. If you'd like to see some articles, let me know and I'll find some for you.