A confusing rollercoaster

My name is Fran and my daughter Sofia ( was recently disagnosed with ITP in early December. I rellay appreciate these discussions and forums- they have truly helped.

Like many of you this has been a very scary roller-coaster ride. She received her initial IVIG and steriod treatment on December 9th and her counts stayed in the "normal" range until early January. As the IVIG "wore off" her platelets started to plumate. The constant body cehcking for new bruises and petichae is really hard for an 8 year old. As a parent- I just want to take this all away from her. Everytime I see more petichae we go in for a count which has been going down every week since the first week of January.

Last week her counts ranged from 14K on Tuesday, 40K on Wednesday afternoon and then 7K by Friday. They started her on steriods over the weekend to hold her over with the expectation that we would do another IVIG on Monday morning. When we got the counts on Monday morning it was up to 123K. They decided not to give her IVIG and stopped the steroids. We go back in tomorrow for another count.

Not sure how to feel. It was nice to see the petichae resolve and it almost reminded me for a short time what "normal" could feel like. Could her count increase that dramatically with only a 3 day course of 60 mg of steroids or could this be a sign that her body is starting to level off?

What would you expect for tomorrow?

Any advice would be appreciated:)

Hi Fran,

My guess, for what it is worth, is that your daughter is quite responsive to steroids - I think you can get quite a big effect quite quickly.

I know how you feel about normal. My son has just had a two week break from ITP thanks to an IVIg treatment (his first) and its been just lovely for him. No restrictions, no need to worry about it, just lovely!

I hope that Sofia's count stays good, but if it hasn't done, try not to worry too much. ITP sorts itself out for most kids, and even if it doesn't, it is mostly a nuisance rather than anything too serious.

Ali

Thanks for your reply Ali

The start of the day was a definite disappointment. Unfortunately her counts went down to 40 this morning (from 123 on Monday). We go back tomorrow- If they drop below 20 they will likely give her another course of IVIG.

I was so surprised- because she did not have any petichae or brusises this morning so I thought they would have been higher. Sofia was really disappointed- I hate seeing her face everytime we walk out of the doctor's office.

I am holding my breath for tomorrow- I almost feel the constant checking is worse. How often do you check? Have you experienced this dramatic of a decline coming off the steroids?

I hope your son tolerated the IVIG ok. Sofia had a few side effects initially the first week- but it did keep her levels up for about 4 weeks- Good luck

Fran, my daughter, Brooke (6 years old), was diagnosed on Nov 17th, so it seems like we are going through the same thing, although Brooke can't have IVIG anymore due to her low IgA levels. It is a crazy rollercoaster we are on! I try to pay attention to the signs (bruises and petichae) but they seem so inconsistant. On 1/7 (following a steriod treatment) her numbers were 192k, then, by the 19th they had dropped to 26k, and as of Monday they were at a GREAT 62k. We go back on monday to check them again. I though for sure when we went in the 19th they were gonna be high because she usually starts to show signs when she drops below 35k, but I was worng. Hopefully when Brooke and Sofia go back monday we will have some good news to share with eachother.

Oh and I check Brooke twice a day; once in the morning to guess what her numbers might be and determine how active she can be that day, and at night to see if she has gotten any more bruises that I might need to worry about.

Hi and thanks for the response

Well needless to say Sofia dropped below 10 yesterday so we had to head to the outpatient infusion center. We had full intention to do IVIG again- BUT- they tried to get an IV in her 6 times and all her veins kept on collapsing. It was a nightmare. Then the hemo recommended since Sofia is Rh + blood type that we try Win Rho because they could push it in 5 minutes.

I was hesitant because I was not sure how she would respond- but given the circumstance- I had no choice. We now hold our breath and hope that it works to give her a bit of a reprieve.

Have you had any experiences with Win Rho?

Hoping and Praying.....

I also hope that Brooke's recent up tick is a sign that she is rallying- crossing my fingers!

YOur stories are familiar. My 5 year old is almost been dealing with this for 2 years. It is a rollercoaster and it takes time. Good news is there is a great chance your kids will outgrow it. Trust your instinct.

I am not a Parent of a child with ITP, but I have ITP. So, I hope you do not mind my two cents. Prednisone seems to raise counts as long as one is on it. As dose is tapered, counts drop. So, Prednisone will generally not sustain counts. I think it is tough as an Adult with ITP to choose a treatment. I cannot imagine how difficult it would be to choose for my child!! Hopefully she has an Acute case of ITP and grows out of it. It is definatly a "Rollercoaster" ride!!! All of the treatments for ITP have their risks. What may work for some may not work for others. If a Splenectomy is suggested anytime soon, I would refuse that option. She is far to young for that and it is not a guaranteed fix for ITP. ITP can return with any treatment. With a Splenectomy her body is at a greater risk of a serious or life threatning illness. I have had two Rituxan treatments. The first lasted 16 months. I had to see a different Dr. prior to the second round, he suggested a Splenectomy. I refused and went with the recomendation of another Rituxan treatment from my regular Dr. The second treatment is going on over 2 years with counts leveling out at around 200k.
Prayers are with you!!!

Prednisone can keep counts up for some people, but usually if they are on it until counts plateau and if a slow taper is done. It worked for me a few times (I had a few remissions that way).

Fran, how is Sophia doing? Did the WinRho work? I can't give any advice about that casue Brooke is Rh- so she can't have that. Her platelets were checked again Monday and went down slightly from 62K to 56K. Not much of a change, but still the wrong direction. Hope Sophia's treatment worked! Our thoughts are with you.

Hey Fran, I will keep you and your daughter in my prayers. She will be ok physically, but I know that doesn't help the soul or mind. My son had to be air flown to another hospital once for other problems. I remember that look he gave me every time the doctors came in to take blood and how he was told he couldn't go home or he wasn't better yet. It isn't easy, but trust that your daughter is so strong and brave because she has such an amazingly strong mother to look up to and take after. You taking her to the doctor's office every time is a pain, but your daughter knows it's because you care, she matters, and you want her better. Hang in there.

Thanks to all for the responses and support. It defintely helps to hear from people who understand.

It looks like Sofia is responding to Win Rho! Today is 1 week since the treatment and we went to See Dr. Jim Bussell (Cornell) for a second opinion. The good news is that her platelets were very high (650K). I hope this gives her a little break- we go back in about 2 weeks (unless we see something different)


It's good to see that Brooke is at least in the same range and I hope she starts to stabalize and then increase... Please keep us posted.

hi Fran, my daughter Payton also was diagnosed early December. They havnt done anything for her yet even though she has gone as low as 17k and is now holding steady at 18k for the past two weeks. At what point did they start treating Sofia? I feel like they should be doing something...
thanks,
Brit

Hi -- the doctors told me (our daughter is newly diagnosed) that they do treatment at 10K or lower, but even then not always if there are no symptoms. My daughter was at 6k and they were on teh fence about treating her since her bruising had actually improved. They could tell, however, that we were worried and were not able to "guarantee her safety" (not reassuring at all!) so they did treat her with 60 mg predinzone and IVanti D.

Hi Brit

Aplogies for my late response. When Sofia was first diagnosed she was at 2K so they treated her with IVIG and the effects lasted for about 3 weeks. After that her platelets started to drop dramatically and she was as low as 7K and 10K again and we treated her with Win Rho (she is positive blood type). The Win Rho seemed to have helped her the most and she has been stable for the last 10 weeks.

We saw Dr. Jim Bussel who is an ITP specialist at Cornell in NYC and his opinion is to treat at 20K. It really depends on your daughter's restrictions and how she is dealing with the lower platelet count. Sofia never stayed at a consistent number before getting treatment she would always dip below 10 which was too low to feel safe.

My opinion is to treat when they are low to see if you could sustain a period of time where counts are "normal" and potentially kick into remission.


Good Luck and praying for you.