Are fluctuating counts normal with no treatment?

My 14yo daughter was diagnosed in August. Since then she has received two IVig infusions which have increased her counts. Before today, her last infusion was about six weeks ago. Four weeks after her last IVig, her counts really started to fluctuate, they would drop to below 10, and then climb back up to almost 30. Her last three counts were 14 on Friday, 11 on Monday(yesterday), and 20 today. My wife and I did not want to give her any more infusions, thinking that her body was trying to right itself, but unfortunately our dogs changed our decision. Our two male dogs decided to fight over some food, and my daughter didn't think, she just reacted and ended up with a severly bruised hand. Luckily no broken bones, also convenient that she had an appointment with her Dr today. Well, needless to say, he advised, and we agreed, that it was best to give her the latest treatment we had been discussing. This time she received WinRho. She hasn't had any other medications other than the IVig, and a very low, and short, dose of Pred back in Aug. My main question is, has anyone dealt with these fluctuating counts without any treatments? We are getting close to the dreaded sixth month, and the possible chronic tag. We were really hoping that these fluctuations were a positive sign. Of course my wife has been training me to look at the positives in all situations, sooooo...... after about 10 hours and a few beers....my new hope is that this new WinRho infusion will be the last little catalyst to reboot her immune system. Any information, or experience that anyone has would be greatly appreciated. Please let me know, good or bad, if you have experienced these same fluctuations with your child. The more informed I am, the better I feel. It's so hard to have to sit back and wait, when all you want to do is kill what ever is hurting your little girl. I am a neanderthal, thankfully my wife is a good trainer.

I'll start by saying i am 25, so not sure if different ages react differently to things, but I am only on a very small dose of pred at the moment 5 mgs, but have slowly gone from 10mg to 7and a half now down to 5 over a few months and i don't think the pred is really doing anything either way, but i do fluctuate a lot. I go from 25 one week to 10 the next fornight, then the fornight after that be back at around the mid 20s, then back down to between 10-15 and i don't think the pred i am on is really influencing that at all. I do seem to tolerate the lower numbers just as well as the higher ones though. I don't get many bruises or petechia these days, but i am on tranexamic acid tablets to help stop brusing and bleeding. I don't know if the fluctuations are either a good or bad thing. The only bad thing i can think of is i can't seem to judge anymore what my counts are going to be, so i have to be a bit more careful at all times, wheras if u can judge what they might be at, then u have a better understanding when to be extra careful.

Not sure that you can call anything "normal" with ITP!!

But, yes, fluctuating counts can be perfectly normal even without treatment. My son has had big swings in the past 20-124-34-68-16 etc etc, all of which have been without treatment. In fact, I think he's had three stages of ITP so far - the first 6 months when he was always under 20K, the next 8-9 months, when he had a regularly fluctuating count, and the last 3 months or so when his count has been more stable at around 30-40K.

Personally, I find it more helpful to look at multiples of 10 rather than single units - so for example, anything under 10, 10-20, 20-30, 30+. The hospital told us at the beginnning that for any count under 20K, it was all pretty much the same number anyway because there is a degree of inaccuracy in testing and counting.

Good luck, Ali

JD:

Fluctuations are very normal in people with or without ITP. Platelets are constantly being produced and destroyed, so the counts will change daily, hourly, all the time. Also, there is a margin of error of at least 5k in the automated counts, so 5k and 15k could be considered the same. I agree with Alison's outlook on counts.

As far as the chronic label, that has been discussed frequently and someone recently said "all that means is that the person has had ITP more than 6 months". That summed it up perfectly. It does not mean that your daughter will have ITP for the rest of her life. Remissions can occur after a year, three years, five, ten.....at any time. Try not to fear that word, it doesn't mean much. Many, many children and adults go into long term remissions at any point in time. My sister had ITP at 16, was labeled chronic after a year, then went into remission. She is now 44 and has never had a reoccurrance.

Win-Rho is not known for rebooting anything...it doesn't work that way. However, any of the treatments can boost counts for a period of time and some people have had luck with Win-Rho for months.

Lauren, Ali, and Sandi,

I'd like to thank all three of you for your responses. It's always the soldiers in the trenches that really know what's going on, and can tell you in a way that anyone can understand. Well my Shayna didn't go to school today,she woke up with a fever. She ended up sleeping until about 2pm this afternoon. I guess her body was really working overtime through the night. She must be feeling much better, because she's on the Xbox. :laugh: I read some other posts about the day after a WinRho treatment, and it seems that she had the typical response. Thanks again Ladies.

Darrel

I just wanted to throw in my two cents. My daughter is 9-1/2 and has had ITP for 6 years. We have gone through good stretches and bad stretches. The last 7 weeks, her counts have gone from 5,000 to 240,000 to 9,000 to 110,000 back to 9,000. As someone else just said, normal and ITP do not go together.

hang in there,

JJ

I just wanted to update you on Shayna's count. She had a couple of rough days after the dose, flu like symptoms, but the WinRho got her count up to 180. Now we just wait and see how long it stays up.

Darrel