Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC:

Our Son's ITP is In Remission - Our Story So Far 8 years 4 months ago #48551

  • jpeek388
  • Offline
  • Posts: 2
  • Thank you received: 1
Hi - I created an account on this forum in the hopes that our experiences dealing with ITP might be helpful for other parents. I'll try and detail out the things we've tried, the symptoms we've experienced and anything else that might be generally helpful.

We live in the San Francisco Bay area and our son was diagnosed in mid-December of 2014 with ITP with a blood platelet count of 13,000. He was 2 and half at the time of diagnoses, although we suspect he "came down" with ITP likely in October or November and, being new parents, we just didn't connect the bruising to anything other than "toddlers just bump into stuff a lot."

We took him in for bruising all over his legs and the pediatrician quickly ordered a battery of blood test to try and rule out Leukemia, which was our main worry at the time. When we found out it wasn't Leukemia we were relived and based on what we had read, over 60% of toddlers just go into remission within 2 months, so that was what we were hoping for. Unfortunately, that didn't happen. His counts remained very low - 13K, 7K, 10K, 28K, 18K, 17K and 399K (most recent, LOL).

His main symptoms were bruising and hematomas on his shins. When he was very low (7-10K) he had some nose bleeds and some "blood boogers". We did notice that he seems to sleep more when his counts were low. We also noticed that he would appear to go into remission for a week or so (as bruising would disappear), but then come back, so there is definitely some sort of "cycle" going on though it is difficult to tell.

We tried papaya leaf extract and it didn't seem to do anything. Most recently, between his 17K and the remission event (399K) (the time period here was about 5 weeks) two things happened that might have helped him (at least these were major changes): 1. My wife stopped breast feeding completely, and 2. We started giving him a liquid children's multi-vitamin and a high strength pro-biotic pill - acidophilus. We would mix both in water and have him drink it. Obliviously we have no scientific evidence that either of these things help, but it was something relatively safe we could try. The multi-vitamin wasn't anything special, just a children's formula that had extra Vitamin C, E, B, etc.

I know we aren't completely out of the woods yet as I've read too many posts where the values go completely normal and then drop all the way back down to near-zero. I am really hoping this won't be us, but if it is, we'll keep trying different things and update this post.

Also, we were treated at Stanford Children's Hospital and they told us that based on the recent medical evidence all of the treatments such as steroids, IGI, etc are all ineffective at permanently treating this type of acute ITP because while levels go up, they just go back down again. They recommended that we just wait it out, and that strategy seems to have worked.

Let me know if anyone has questions and I will try to help best as I can.

-Jeff

Please Log in or Create an account to join the conversation.

Our Son's ITP is In Remission - Our Story So Far 8 years 4 months ago #48555

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2375
Jeff - what a great story! I'm so glad your son has gone into remission without treatment! I hope he stays there for good! (Looks like an exclamation point spree)

Please Log in or Create an account to join the conversation.

Our Son's ITP is In Remission - Our Story So Far 8 years 4 months ago #48557

  • jpeek388
  • Offline
  • Posts: 2
  • Thank you received: 1
Hi -

Yeah, we're still processing it right now mentally. The doctor's told us to come back in 2 months and did say there is a small probability of relapse, but did not quantify it. The first thing they asked us was, "Did we put him on steroids?" (LOL - they should know this). We obviously didn't. So I am cautiously optimistic and if I don't see any new bruises over the next 10 days or so I am probably going to mentally say he is cured (we'll see).

One thing I forgot to mention, and this could be a tip for others out there, is that my son was one of those with VERY mild symptoms, so I pushed back on the doctors and instead of going every 1 month for a test, we had 5-7 weeks between tests because a) It's expensive, b) We were getting the same number over and over again, c) His symptoms were stable, d) The experience sucks for him. Your mileage may vary here, but that might be something to consider for others out there.

Jeff
The following user(s) said Thank You: Mom2

Please Log in or Create an account to join the conversation.

Our Son's ITP is In Remission - Our Story So Far 8 years 4 months ago #48559

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12436
  • Karma: 11
  • Thank you received: 2375
It seems as if he had very calm doctors and parents. :) Acute ITP usually resolves within 12 months and can be triggered by an illness or vaccine. There is such a thing as cyclic ITP but it is rare and I've never seen it in children. He wouldn't have gone into remission for week or so since remission is only considered after a few months with normal counts....so I don't know what was going on with the disappearing symptoms. It's hard to know since you weren't having frequent counts done. The only thing that matters is that he's doing well now!

Please Log in or Create an account to join the conversation.

  • Page:
  • 1
Moderators: jaycharness
Charity Navigator
GuideStar Seal
NORD Member Badge
THSNA logo
THSNA Summit 2024
April 3-6th
https://www.thsna.org/2024