4 year old daughter recently diagnosed with ITP

Our terrifying roller coaster ride all started Dec. 26 2012, the day after Christmas. My husband and I had been noticing quite a few bruises and what at the time we thought were just red marks from scratching on our 4 year old daughter. We knew we needed to take her to see her pediatrician, she looked at her and immediately said it looked like ITP. We were sent for labs which were ordered stat, within an hour we received a call from her doctor stating we needed to take her to St. Joseph's Children's Hospital in Tampa as her levels were 4K. I can't begin to tell you how fearful I was as I had never heard of ITP and really had no idea what was going to happen to my baby girl who again is only 4. The first night consisted of just monitoring my daughter as the doctor would be in the next morning to go over what our options were. Dr. P came in that next morning and I was so happy to see him, but once he gave us our options, all I could say was I need time to think this all over. After a lot of thought we chose to go the route of IVIG, after a long 8 hours of her receiving the infusion, we had to wait 24 hours before testing her levels. After what seemed like an eternity they finally had her results, Dr. P said she was at 32K. We were released from the hospital, and scheduled to have her labs done 2x a week. I didn't realize that was just the beginning to this, terrifying ride. My husband and I just became numb not really able to function unless we were with her, this included not being able to work, so no income coming in, which made this entire process even more stressful. In about a 2 week period she went from the 32K, 17K, 16K, 17K and then had a bone marrow biopsy which came back normal. Next came 24K then 78K. When we got the news of the 78K we felt confident we were on the up, and told to come back in a month to see the Hematologist, which was also in Tampa. My husband and I in the meantime went back to work, but still unable to stop worrying, we decided to would wait 2 weeks instead of 4. Right at about the 2 week mark we began to notice a couple small bruises and a few small red spots starting again on her chest. I knew in my heart this wasn't going to be good, but didn't think it was going too low since she was up to 78K. I kept saying to myself how much could she really drop in 2 weeks.
After what seemed like the longest 2 weeks, it was finally Monday, Jan. 21 2013, levels came back at 24K, I was so upset, I called the Hematologist and they wanted to see her Wednesday, Jan. 23, and the results came back the same 24K, went today Jan. 25, 2013 and they dropped to 23K.
So that is where our terrifying rollercoaster ride just comes to a sudden stop. We now have to wait another week to see where she is...if we can wait that long.
I am looking to gain more knowledge, opinions, and support. Like I mentioned earlier, my husband and I have become consumed by this, and has made everyday challenging especially emotionally.
(I wanted this to focus on my 4 year, but would like to add that I also have 2 boys 1 & 2, that don't show any signs or symptoms)

Hi Staci

You must have had a huge shock, but I think you and your husband need to calm down a bit now.

Your daughter started off with really low counts, but responded somewhat to IVIg and she seems to have an untreated rise all by herself too. The 23 and 24 that you have seen more recently are low, but not really at dangerous levels. Chances are still that she will get over this by herself and that her count will return to healthy levels all by itself. You've had the bone marrow test, so you know its only ITP. And even if your daughter is in the very unlucky few where that doesn't happen, ITP isn't a death sentence. For most people, its a manageable condition and people live a normal life, treating where required. In the UK where I live, we don't even treat kids with ITP unless they have active bleeding symptoms - more than bruising.

My advice now would be to get counts less frequently because they can take over your life, and not in a good way! Concentrate on symptoms instead. If your daughter starts getting loads of petechiae or bruising then you might want to get a count. If she has any bleeding in her mouth or anywhere else, then take her to the doctor. Keep an eye on what she is doing to minimise the risk of injury - make sure she has a helmet on when she is on her bike, don't let her climb trees, or bounce on a trampoline with other kids etc. Make sure that her school or childcare do the same thing and that they understand to err on the side of caution in terms of medical treatment if she gets hurt.

Other than this, keep life as normal as possible. Worry isn't going to change anything and it gives your grey hairs! Honestly, chances are that you will look back on this in a few months time and wonder what all the fuss was about.

Good luck for her next count, Ali

Staci,

I cannot imagine how scary this must be for you and your husband. I turned 60 years old in December and was diagnosed with ITP on 12/28 and it has been really scary for my husband and I. I recommend you read everything you can on this site. Educate, educate, educate. I have calmed down quite a bit and my counts have not been over 12. I have a medic alert bracelet and a an alert system in my home in case something happens when my husband is traveling but I have stopped worry all the time about something happening. I have very few bruises and no other signs of bleeding. I have chosen to take a natural path and there are some amazing stories on the site of people who have use natural methods with their children. Whatever route you choose to take, education yourself as much as you can so you feel in the driver's seat. I wish you all the best.

Love and Light,
Patti