ITP Resolved - Just wanted to share my story for

Hi All, I just wanted to share my story on my son's ITP for other parents of newly diagnosed kids. I found this forum very helpful when he was diagnosed. Although I didn't post much I would read other stories and comments and had a good understanding how to deal with being a parent of a child with ITP. He was first diagnosed in June 2012 @ 5yrs as a result of me being being concerned about the spotting all over he's body. He was sent to the ER and bloods were done. He's platelet levels were 2 at the time and he was admitted for a few days and it fluctuated between 2,3,4 back to 2 again. The hospital discharged him after 5 days and said that they didn't want to give treatment as most cases resolve within 6-12mths. We were told he literally had to become a couch potatoe. It was extremely hard as he was only 5 but he was the best. He went back to school in Sept with a level of 9. He had to stay in at lunch breaks and could not be involved in the physical activities. I actually think we were blessed with how well he took it. He never complained. we were in and out of hospital every week for bloods and he was also admitted on a few occasions for banging he's head (had to be monitored). He also suffers from tonsillitis and they hospital said the the ITP was a secondary infection he got from the throat infections and put him forward to have them removed. So he was admitted a few times when he got this due to the bleeding on the tonsils. It was all very stressful at the time and we were so worried about him and worried would he very be able to do all the normal activities boys do! As the months passed the levels increased and by Feb 2014 he was at 34. The hospital then said he could become involved in school activities etc again which was great Due to cancelled appointments his next bloods were not done until May and it was 293. He's levels stabilized from then on and I received a letter today saying the ITP was resolved and he can be treated like any other patient for a tonsillectomy which is due in 2weeks so hopefully both issues will be resolved by end of April. I know its very scary when you find out your child has ITP and its a constant worry when the levels are low but my story is a positive one and I hope yours will be too. Here is a breakdown of he's bloods as this was something I was most interested in.

23rd June 2012 - 2
08th August 2012 - 7 (admitted for nose bleed on this day)
24th August 2012 - 11
07th September 2012 - 9
05th October 2012- 7
02nd November 2012 - 8
30th Novembe 2012 - 13
11th January 2013 - 25
26th February 2013 - 34
07th May 2013 - 293 (at this stage they told me it look like all the antibodies causing the IPT were gone from he's system)
09th August 2013 - 163
29th August 2013 186
25th February 2014 - 188

Hope this information helps Any questions just let me know

This is great. I'm glad your child wasn't treated. The usual treatments for children are always worse than the disorder. As an adult with ITP I've had many of the treatments and wouldn't wish them on my worst enemy. It's also good for other parents to see that it might take longer than a few months for them to get better.

I'm glad for you, enjoy your child.

Thank you so much for sharing this! We're still in the first month so it's great to see your positive experience and how it played out.

I'm very glad his ITP seems to have resolved for now. Hopefully it will stay that way!

My sister acquired ITP after a tonsillectomy. It did go into remission after a year though. It's great when that happens!

I am happy your son is much better. Was there any treatment provided to raise his platelet count? or, did it resolve on its own?

Did you use any other treatment? Thank You.

Also, were any bleeding symptoms anytime?

Congrats on your childs recovery. Reading this was great news as i am my son was just diagnosed with ITP (still in the hospital now)

Hi Barbrai, Sorry for the late response. We didn't use any treatment we let it play itself out to see how it went. Felt like a lifetime going in week on week and praying they were up. but waiting week on week for the results but 3yrs late and we are all good.

Hi Sara614, We didn't use any treatment. If he banged himself he would get massive brusies. He was at his nose one day as any 5yr old does and he ended up in hospital with a nose bleed! He would just bruise very easily or if he cut himself we would have to give him medication to help his blood clot.

Thank you so much for your share and timeline. I have just gone thru the same thing with my 18 year old son who was diagnosed with ITP 2 weeks before he was heading off to college. He was done to 4K when he was hospitalized. They first tried IVG transfusions which really didn't have much impact and made him sick the second time around. Next to 4 day steroid treatment where he went up to 70K but dropped down to 5K week later. Then longer steroid treatment same thing up than down when off meds. Were at Hematologist ready to start 4 week Rituxin(sic) treatment when his level came back at 37K and watchful waiting w/o meds started and at that point I saw your timeline and it gve me hope. My son's was as follows:

37K again after a week
58K after 2 more weeks
49K after another week or so
then boom 224K after approx 2 weeks and now cleared to resume normal activities.

His Hematologist had always indicated his ITP was likely acute not chronic and the likely cause was fact it turned he had non-symptomatic mono over the summer which likely triggered ITP. Of course he will be tested again in 2 weeks and monitored going forward, but we are very hopeful he is done with this rare and scary illness.

Grateful, Dad