Remission... how does this work?

Not that we are anywhere near "remission" or having normal levels or anything but I have a question.

They say 80% of kids get over this in 6 months. We are on week 18, I only know this because that is how old my youngest son (NOT the one with ITP) is.

What happens?! Like ... one cbc will we notice a higher number and it will continue to slowly climb? Or will it be like ... one cbc will come back at 162,000 (just a random # there) and it won't drop again?

When they say it takes 6 months, is that how long it takes for the platelets to build back up to the normal range? Or do they mean it can be a roller coaster for 6 months until it stabilizes?

I know 6 months isn't a magic number and it can take more or less.

I hope my question makes sense...

My son was diagnosed at age 4. We went through several different treatments, ivig, steroids ect. These all brought his counts up for a few days to maybe a week then they would drop again. We decided on Rituximab and his counts slowly climbed for a few weks then they just stayed up. 250k - 375k. They have been up for going on 4 years now. Sometimes I still see petichia and bruises and begin to worry but his cbc has always shown good #'s. Thats how remission worked for us. On another note, my son was just diagnosed with HSP. He is covered in bruises and petichia and we are praying it will go away! Doc's seem hopeful but I'm not sure because they said his itp would go away too, that ended up taking 2 years. I wish you luck and your family luck.

Hi Brandi,

This is a really good question, but I'm not sure that there's ever been any actual data gathered about it. It seems like its just one of those things "they" say to reassure parents, but I do wonder myself how it plays out.

Our experience was, my daughter was right at the 6 month mark, and had basically been at <10k since diagnosis. The only two treatments we had done were WinRho (to which she had an anaphylactic shock reaction) and something like 35 IVIG treatments. With all of these, her counts would go up for 2 or 3 days to the teens or low 20's, but in less than a week later she'd be back down to 3k, 5k. So, she never once had a very good response.

I had taken her to my homeopath (I was in the middle of my homeopathic studies at the time.), and the first time he gave her a remedy, within 10 days her platelets went into the low, normal range, something like 144k, if I'm remembering correctly. After about 3 weeks, though, her platelets dropped again. After she got quite ill, her illness caused me to give a slightly different homeopathic remedy that began helping her almost immediately. She went from literally looking like she was on her death bed, 'call the relatives to say goodbye' state, to running aroud, laughing and playing like she'd never been ill at all. When I took her back to the hospital for a check up 2 days later, her count was 11k. When they checked her counts 2 days later after that, her count was an amazing 411k. So, for her, she jumped 400 points in 2 days.Her counts have still been good, almost always in the 300k rannge..

Thank you for your responses. Ryan has had 4 ivig treatments, and it looks like we're headed to number 5 here soon since his numbers are getting lower and lower. With each treatment he gets up to at least the 40's ... sometimes even the 100's! But then a slow decline over the course of 4 weeks.

Brandi:

You never know how a remission will happen. Counts can rise suddenly and stay there, or it could take a slow rise. It does not usually happen right at the six month mark...it can happen any time within the first year or any time after that. Children can still attain a remission years after diagnosis. 'Chronic' is a very misleading label.

Thank you Sandi! We're still so new to this and just when I think I've got a handle on things, more questions pop into my head

Then ask away!

Hey, Brandi -

Like others have said, remissions happen in a variety of ways it seems. For my son, Brady, his platelet count never went up on its own, without treatment. We treated somewhat regularly in the beginning - this was 10 years ago and our hematologist wanted us to treat when Brady dropped below 20k, which was when he would have bleeding epidoses. After a number of years we treated less frequently. Brady's last treatment was two years ago, when we treated him so that he could participate in all activities on a family vacation. That treatment brought him up to close to 300k, like always, and then he very slowly dropped but never went below 50 or 60k. We actually haven't even been to the hematologist in two years so we don't have the official remission title, but I think ths is a remission of sorts. Brady's count when we last checked (6 months ago) was still around 60k.

Hang in there - you may be done with this at any time!

I think it is different for each kid...so you never know.
Here's DD's experience.
Diagnosed at 3.5 years with a count of 11k. IVIG that day, went up to 330,000. 11 days later she was back in the hospital for more IVIG - her count had dropped to 10k.

She stayed mostly in the 70s for six months, with one dip into the 40s. I was starting to think she'd be one of the kids who didn't get better, but I was grateful her counts were "good" (70 beats 11 any day!).

At month 7 they started to go up! They stayed in teh 120s for about 8 months, then she got a flu shot. 2 days later she was down into the 40s. The right back up - no treatment. Soon her counts were in a normal range.
She's 7 now, and hasn't had to go to the hemo since she was 5.5.

We only go back to bring them chocolate peanut butter balls and Christmas Crack. Did I mention we LOVED the office?

JulieP

Ours worked differnt too. Lexi was diadnosd in 2009 and was treated with WINRO twice and then hung in the 110 for a long time with no treatment needed and we were happy people. Discharged from the same hemo office as above.. Hi Julie:)

Then in September 0f this year here came the bruises again and we went from 90k, 70k, 66kk 40k, 31k,21k in a little less than a two week span and were treated with WINRO again.

Now we have had a reaction to the WINRO and she has extremly low redblood cell count because the WINRO is attacking the redbloodcells:(

SO it does work differently. Hope this helps. SNd yes we dole our hemo office too