IVIG

Daughter is 16months newly diagnosed with ITP. Each time she takes the IVIG her numbers increase. The first time they went up to 145 within 24 hrs of the treetment, then a week to two weeks they started dropping again. then the next treetment within three days they went up to 317 . well a week later (today) she got rechecked and it went down to 144. she is on the downward spiral again. so now she has to go back on monday to get rechecked once again. Is this normal with the IVIG treetments? They keep saying that it is from a virus, I cant seem to recall anyone virus lasting extra long. Why do they keep dropping, her color is getting pale again. Does it get any better through time and experience. She is just getting Diagnosed on Decemeber 6 of this year. We have been through so much in less than a month. She responds well to the IVIG but then she drops. I just don't know

IVIG is not a cure for ITP it is a treatment. So yes you can expect to have numbers drop a few weeks after. You are newly diagnosed so yes it is a lot to take in, and experience. Unfortunately this disorder is quite the roller coaster. There is a very good chance your daughter's ITP will be Acute and resolve itself within 6months.
This forum is a very good place to get advice and learn about different treatments, the parents on this board have been through almost all of it:-)
Good luck to you, I will be praying for you.
Krissy

They can speculate that ITP was caused by a virus, but they can't know for sure. Even if a virus triggers ITP, that doesn't mean ITP will go away immediately. Sometimes it takes time.

Krissy is right, IVIG is a temporary treatment which usually doesn't last long. There are other things to try and hopefully the doctor will suggest that soon.

I hear alot that ITP can be an "acute case" what is the chance of it being acute if my aunt has had ITP and I and my sister have had some issues with our spleens? with my my spleen enlarges causesing pain and my blood platelets have dropped when that happens in the past. She got the MMR and Flu shot a couple of days before the stuff started. why do they keep overlooking that. Sorry for all my questions. I just can't seem to understand how my otherwise healthy child that had never really been sick ever, no cold, no flu no ear infections gets these shots and she has been nothing but sick since then. where my other daugther was always sick and never no virus that allowed her to get ITP or my son.

We just had my Hematologist on the PDSA conference call this month and she said that it could be a whole different ball game with what she called Familial ITP (meaning other family members have it as well. She did not go into a lot of detail, but it is worth discussing with your Doctor.

menminime wrote: I hear alot that ITP can be an "acute case" what is the chance of it being acute if my aunt has had ITP and I and my sister have had some issues with our spleens? with my my spleen enlarges causesing pain and my blood platelets have dropped when that happens in the past. She got the MMR and Flu shot a couple of days before the stuff started. why do they keep overlooking that. Sorry for all my questions. I just can't seem to understand how my otherwise healthy child that had never really been sick ever, no cold, no flu no ear infections gets these shots and she has been nothing but sick since then. where my other daugther was always sick and never no virus that allowed her to get ITP or my son.

The sad truth is, they will never acknowledge the shots could have caused her ITP. But I can tell you from experience that the MMR (and the flu shot on top of it!) can in fact, have caused it. If you read the inserts for both of those shots it states ITP (or "low platelets") can be a side effect. If you want info on how to report it, you can PM me and I can give you the info.

The MMR destroyed my son's immune system. If there is already a family history of immune system dysfunction, then giving a child in that family shots has a very increasingly chance of causing damage. Name it - ADHD, ADD, food allergies, ITP, junvenile diabetes, etc. There are methods of counteracting the MMR shot but it has to be done fairly soon (to my knowledge) after having it done. Whatever your stand on vaccines, you might want to do more research with them and autoimmune diseases before allowing her to have another one. At least read the shot inserts. Most of them will give you enough info (or the CDC) to make an informed decision. Sherry Tenpenny covers the CDC info very well on her DVD about vaccines. But don't just blindly trust your doctor on that issue. It's too important.

Hi menminime, our youngest son, 3, was diagnosed last April so we've been on this rollercoaster 8 months. His time inbetween IVIG treatment has been 2 weeks and one time was as long as two months. You just never know. IVIG is a very short-term solution - just a patch job to get the count up quickly. It won't last a certain amount of time - for some you can have one treatment and the count will be okay for months and months. Others need it quite often. ITP definately varies from individual to individual.

We were told Ethan had ITP after he had recovered from croup which our other son had as well. He was fine up until then. A virus we were told as well. The I in ITP is Idiopathic which actually means no known cause. All anyone can do is get the platlettes back up when they drop low enough to be dangerous. From our experience our son's symptoms decreased over time, even when his count was very low. He was at 30 as of the Monday before Christmas then the day after started having nosebleeds. Got his count checked that day and has risen very slightly to 33. No change really. Now it's Saturday, New Year's Day, and we go back for another check on Monday, two weeks after his last check. We made it a whole two weeks more! He has only a few tiny bruises, no petechiae and has had no more nosebleeds. Before at 30 he would be covered in petechiae, have fist-sized bruises on him with two hour nosebleeds - not now. Hopefully your daughter's count will stablise soon - if not, and I don't know if this will reassure you but it did me every time I came out of a two-day admission with our son from the oncology ward, be glad with what you have - yes, ITP can be serious, but it's quite easily treatable (to a point), quality of life is excellent in most cases and that she doesn't have anything much more serious. Once I saw a two month old baby boy with a gastric nasal tube, two wounds on his head from a recent operation with four iv lines just lying on this bed, I thanked God for ITP instead...

Just want to give you some hope.
Cassie was diagnosed in July 2008, at 3.5.
She'd been sick about 3-6 weeks before, we think that was the cause.

She was diagnosed at 11k, shot up to 330k with her first round of IVIG.
10 days later she was at 10k, we were admitted for more IVIG.

That was her last treatment.

Her counts varied for the next six months, from 40k - 70k. (mostly in the 60s) In January 2009, she started having counts in the low 100s. She didn't have a sub-100 count until 4 days after her flu shot in October 2009. (It was 90k.)

This past August, at 5 and a half, she was released from the Hemo's office. No more pokes!

So just because you're there now, doesn't mean you'll be there forever. And I PROMISE, ITP will get easier to live with. Right now it's new, and it's on your mind 24/7. I laugh when I think about the things I called the hemos office for those first few months. By the time she was 6 months in, they wouldn't have phased me at all. You just have to adjust to your new normal

As for the MMR, I would see if you can get it documented. You'd have to google and do some research, but basically in 1:23,000 shots the MMR causes ITP.
Of course, it can't be proven if the MMR caused your daughters...i would, however, consider getting the blood test titers run before you get more shots for her, so you can avoid unnecessary ones.

Good luck.
I promise it WILL get easier.
And like a PP said...every time i walked into that hemo/onc office...I thanked God that "all" my child had was a blood disorder. I'll never forget my 40 minute ride to the Cancer Care Clinic, terrified she had luekemia. That was enough for me.

As for my daughter...she just turned 6. And she's been playing ice hockey for over a year
So it really does just go away sometimes!
Julie

Mem,
My son's (with ITP) paternal grandmother and aunt both have chronic refractory itp. The grandmothers is very severe, but has gotten batter now that she is in her 70s. The aunt has partial remissions and I'm not sure of her whole history, but the grandmother is spleenectomized(I made that word up:) (no positive results), and the aunt is not and neither is Tim. The biggest difference is that unlike the aunt and granny, Tim acquired his ITP in childhood (age 11). They both got it in their 20s. Tim seems to be more refractory than they are (so far only responds to NPlate, possibly a boost with Rituxan). The grandmother, at age 65 and years of low counts (and a bleeder) had the rituxan infusions and she is now at normal counts for several years. Her brother, a hematology professor at Western Carolina Univ., says that as they get older, they produce less antiplatelet antibodies, and so their ITP often begins to improve with old age. Seems so with the granny.

I've requested a family study, but nothing has ever come of it. I always wonder what the link is, genetically (there obviously is one!) and want my five kids to be aware that it could hit them or their kids at any time. Hopefully not, but its possible.

My son also has low platelets (around 135 to 140 last time he was checked. Additionally, my husband has low platelets and has for the last 13 years (though, he has never been treated). I told my son that he needs to be careful and watch himself and get checked often. My husband's platelets are probably low from years of welding--since we are not related (only by marriage).

As far as the IVIG goes, it does help repair your body so that you can heal. I had about five treatments of IVIG back in July and August and since then, my platelets have gone up.

My Hemo Doc called New Years eve. He said that she will have to have another round of the ivig treetment but the next time he is recommending that she have two treatments back to back. She has started to get the lumpy bruises again and the pail color and very sleepy again. And some really fould smelliny gas and diapers (i dont know why but everytime her platleets drop this happends.) As far as those little blister looking thingys (i can not spell them at all) she hasn't really had them but once even when she is at a 6. No noose bleeds thank goodness.

As far as the 45 min ride to the Hemo-Onco docotor that was the hardest drive but the best drive home. while we were in there i saw the little children that had cancer and I was so thankful that all I had to deal with was ITP. So I thank God it wasn't lukemia.

As far as her Inflamatory Disesease test went only one thing came back slightly elevated but her wasnt so concerned as if now.

I know that this new year I am changing alot of things. I am seeing that I have not given my children the best possible genes so I will be teaching them how to eat right and excersise from a very young age so they can have the best physical health they can have.

I was just told after having to research my family medical history that there is more back negative things there.

I am taking her to get her retested Monday. I hope they didn't drop anymore.