Hi, I'm new here...

My 2 1/1 year old Princess was dx with ITP on 4/25/11 and I just finally read through the paperwork the doc gave me, which led me to this website. I am SO thankful to have found other people going through this too!

Here's a little background on our family...

I am Tracy, married to Rod. We have 2 kids. My oldest, Z, is 4 1/2 years old and was diagnosed with T1 Diabetes at 18 months old. We have been battling Diabetes for almost 3 years now and do well with it most of the time. I have found online communities extremely supportive and helpful with his disease.

Then my daughter, S, is 2 1/2. She has asthma, dysphagia (swallowing disorder), and was dx with ITP 2 weeks ago. I noticed bruises all over her body, and then more, and more. I took her to the pediatrician and she was 95% sure we were dealing with ITP when she looked at her and ordered the blood work. I got the call that night that her platelet count was 6000. I took her to a hematologist the next day and her count was 2000. We chose to do an IVIG the next day. She did really well for the treatment, but did get many of the possible side effects early the next morning. We ended up back at the clinic for IV rehydration, morphine, and zofran, tylenol, and eventually some motrin. She developed a high fever. The good news is that less than 24 hours after the treatment her counts were up to 54,000.

Her blood work 1 week after treatment was up to 230,000. I am so thankful her counts came up and we were able to schedule the next appt for 2 weeks out. Our next appt is on the 18th.

The doc does not seem optimistic that the treatment will last very long. He is sure we will be back for another treatment after 3-5 weeks. I am really hoping she can go a little longer.

I look forward to learning more about ITP and each of you as well.

Tracy

I'm so sorry you are having to deal with this. Your doctor is probably right about it being a temporary rise as IVIG works as a band aid to keep platelets up but is not a cure. There is no cure for ITP but there is a very good chance your little one's ITP will resolve on its own(acute ITP) within 6months to a year I believe the statistics say 80% chance it will go away:-).
My daughter (9) has had it for 2 years now and has a very typical childhood with occasional trips in to deal with ITP. She looks at it as an annoyance now:-)She too has had the nasty side affects from IVIG headaches, nausea, vomiting and overall icky feeling, pre-treating with Tylenol, and benadryl before a treatment helps A LOT along with a slower infusion rate.
If you have any questions this is the place to ask them. I will be praying for lots of platelets for your little princess:-)
Krissy

Thanks Krissy. I appreciate the support.

I am just tired overall of dealing with medical issues. ITP is "just one more thing" added to our already fill medical plate right now. And I ended up pulling her out of daycare for now. They are letting me drop her in when her counts are good. I just had a hard time even thinking about taking her when her count was 2000 and she was covered in bruises.

I am letting her go for 2 days this week since her count was good last week. Hoping she stays up for a while and we aren't dealing with this long term. I guess, if we end up on that road, I am at least glad to have found some support.

Hi Tracy,
I think that there should be a site for famalies dealing with more than on sick kid. I've got five kids, two of them sick. The eldest boy was born with a very rare heart defect and after 5 surgeries is stable with meds. He presented with Multiple Sclerosis at age 14 too. Then my second eldest son at age 11 presented with ITP which is now chronic refractory ITP (he's 18). I raised all of my kids alone (their dad took off) and had to cope with the two medically fragile kids and all of their needs. Its been rough, and thankfully they are now adults! They still live with me, but they are really wanting to be on their own. I'm trying to help them achieve that.

Hang in there, it will get better.

Thank you, Donna. Yes, 2 autoimmune children is tough. I have learned to deal with the Diabetes over the last almost 3 years and it is just a part of life. Now with ITP I feel like we are living in 3 week increments.

Her 1st IVIG seemed to last about 2 1/2 weeks (started bruising), appointment at 3 weeks post IVIG showed platelets back down to 12,000.

We repeated the IVIG the next day and have another appt for 3 weeks post treatment (since we know it raised her platelets the first time). We can go back sooner if we think we need to.

I am REALLY hoping we don't have to do this long term. It is so hard watching her go through all the IV attempts and blown veins.

We were successful at pre-treating the side effects this time around. I started giving her tylenol/codeine and zofran after we came home from the clinic. We medicated her for 2 days and she never got sick like the 1st time.

Hi Tracy, Welcome to the PDSA family.

You have really come to the best place, this is a very supportive forum with lots of wonderful members here to give you advise and support. It's perfectly normal to be overwhelmed by all of this. There is a lot of information to take in. Hopefully your daughter will be one of those lucky few who outgrow it, but if she is not, just know that you can live a normal happy life with it. I have had low platlet counts since birth and have treatments for it on and off for almost 26 years. The Doctor doesn't believe I have ITP, but i do have something called T.A.R Syndrome which means low platelets and absent radius.

I hope this is something you don't have to deal with long term, we're all here if you need advise or support.