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TOPIC: How often have you had to have IViG?

How often have you had to have IViG? 10 years 2 months ago #5989

  • falafal0
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Hi there, my little 2 and a half year old was dx 2 months ago and since then he had already had two infusions and is looking at having another one this weekend if his count drops more. His count hit 33 the week after his first infusion (no steroids) and then dropped over the next few weeks. Four weeks after the first infusion he hit 7 and had another infusion, this time with Methylprednisone. Two days after discharge it was up to 93 - highest in two months - and I thought finally, no hospital visits for two weeks. 10 days after we left the hospital he came out in a pale raised rash on his torso - a normal virual rash the GP said when I checked - plus he had new bruising to his lower legs. Took him to hospital for a check the next day and it had dropped to 24. Rash over night went to petechiae and keeps getting worse though he is fine within himself. A few new bruises and we went back Monday with a count of 17. Going back on Fri and if it's under 10, another infusion only 3 weeks after the other one. I'm SURE his count would of gotten higher if he hadn't of got this virus. He had to be sedated the last time they put the canula in he was that distraught. I seriously don't want to put him through it again if I can at all help it. He is currently being assessed for autism and doesn't understand a thing about what's going on and I can't appease him in any way...it breaks my heart.If he has to get another infusion I'm not letting him leave the house, only to go to the hospital for counts, until his count is high.How often have your children had to have infusions? Is it a monthly or bimonthly thing as long as ITP lasts?

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Re: How often have you had to have IViG? 10 years 2 months ago #5991

  • gsh
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I'm an adult but wanted to share with you that IVIg would last (keep counts over 15) for about 10-25 days. This was the case for the first year after I was diagnosed. After a year, my ITP went into remission. I also treated with steroids on and off.

It seems everyone with ITP is different and each response to treatment can be different for one person. I'm sorry about your little one. Hang in there. Time is a big factor I believe. Hopefully ITP parents will chime in too.

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Re: How often have you had to have IViG? 10 years 2 months ago #5993

  • falafal0
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Hi ghs, do you mean you had ivig at least every three weeks or so for a year?? I'm so glad you're free of it now :-)

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Re:How often have you had to have IViG? 10 years 2 months ago #6117

  • bethann
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My daughter was diagnosed with ITP in September of 09. She had an IVIG treatment and was released the next day. Her count was 2,000 She increased to 79,000 with treatment. 2 1/2 weeks later we went to dr and she was back down to 6,000 She was treated twice during that stay at the hospital. Happy to report that even though she has not hit the normal range but once in the past 10 months she also has not dipped below 40,000. I am hoping she will go into remission soon and this can be looked at as an acute case but I heard that after a year, they are considered chronic.....Does anyone know if that is true?

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Re:How often have you had to have IViG? 10 years 2 months ago #6118

  • bethann
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i forgot to mention that my daughter is around the same age.....She will be three in two weeks.

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Re:How often have you had to have IViG? 10 years 2 months ago #6150

  • wildroseao@aol.com
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Hi, ladies!

Sorry you haven't had many replies--holidays, you know. Look at the Treatments section on the home page, and you'll see that most of them are short-term solutions. How long each treatment is effective can usually be predicted from the same child's past response to it--my child may get only 2 weeks of counts over 60K, while someone else reports 100K for six months or even longer. That said, it is possible for a treatment that had been effective in the past to no longer be (as) effective--or even to stop making any knd of difference. Some people are non-responsive to one or two treatment possibilities, others are 'refractive'--and don't get much of a count boost from anything. The good thing is, there are several new meds in the pipeline, and great minds are working on the problem that is ITP.

Chronic is a label the docs slap on, some at 6 months, most at a year--but that doesn't necessarily mean forever. My daughter developed ITP at age 15, didn't respond much at all to IVIg or WinRho--but Dex pulses took her counts over 100 for a few weeks at a time. She was retreated about every 4-5 weeks. Side effects got to be too much (weight gain, hot flashes, bone loss, trichtillomania!), and at the one year mark, when she was officially 'chronic', we consulted with another doc who mentioned Rituxan. The first doc then picked up the ball and ran... Long story short, Caitlin had 4 doses in Sept-Oct 02, and she's still in remission, 7 years, 8 months later..... It only works for about half the folks who try it, but it can be quite remarkable! Since she had it, they've come up with N-Plate and one or two other new possibilities, but when it works, I think Rituxan has an edge on other treatments because after the four infusions (week apart), that's it (except a few more CBC's). With the others, they're weekly injections...

Also, other folks are MUCH more patient than we are and have kids who seem to handle it alot better. Over the 9 years or so I've been on this site, I've seen UNMEDICATED remissions many times, some after years of ITP. The crucial factor for most in making the decision not to treat is, are there active bleeding symptoms at the child's usual unmedicated count? If symptoms are few, and especially if counts are over 20-30K, and the treatments themselves leave the child feeling ill --then choosing to watch and wait is often possible or even preferable.

And yes, lots of people reports platelets drop with a virus--or any other infection!

As to your little guy with possible ASD, choosing not to treat will also depend on how he spends his day and how well he communicates. How active and risk-taking is he? Will he tolerate a soft helmet? Does he let you know if he hurts himself? Can you pad a room or an area for him, using those foam puzzle piece mats they sell everywhere? Have you been in touch with the Child Life specialist at your hospital--they can often provide help in these areas....

I wish your kiddos many platelets...to infinity and beyond! Ann, Caitlin's (23) Mom

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Re:How often have you had to have IViG? 10 years 2 months ago #6292

  • gsh
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fal - sorry for the delay. I alternated IVIg with dexamethasone 4-day pulses. So I would do IVIg then 3 weeks later I'd do the steroid. After a while I was done with dex so I did IVIg every 3 weeks for 3 months. All the best.

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Re:How often have you had to have IViG? 10 years 2 months ago #6303

  • falafal0
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Thanks for responding everyone - SO SO interesting to read your experiences. Thank you. The problem we have is whether to treat or risk a spontaneous bleed, either internal or external, and to weigh it up. Thing is as you know about the ASD (his final assessment is in two weeks) he is non-verbal and can't tell us how he feels on a day-to-day basis. And yes, when he has a virus his count drops quickly. After I wrote the last post asking those questions, just a week after the last unfision, he had a viral rash which turned into petechiae on his torso and a week later now with a croupy cough and runny nose. Rash is spreading and I took him in early this morning to get a count check to see where it's at now. The last two counts were 17K so I wonder where they are now. Waiting for a call...he was at 93K when he was discharged so I would of loved to have seen how high he got without getting unwell. We'll see what lies ahead for us. All the best to you all :-)

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Re:How often have you had to have IViG? 10 years 2 months ago #6304

  • falafal0
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Well, to update you, his count has dropped to 5K so we are being admitted tomorrow morning and will go through it all again. I honestly don't know how parents who have extremely sick children manage it all, emotionally or physically. I cried after I finished talking to his haematoligist when reality hit what he'd have to go through again. He's a patient of the oncology ward and it breaks my heart to be there seeing the other children. It's only been 14 weeks and it's his third admission...how long will this go on?

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Re:How often have you had to have IViG? 10 years 2 months ago #6306

  • carahas2withitp
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i'm quite interested in all this, i have 2 children with itp they are currently going to look into and see if there is a family connection, my daughter has had it for 8 years she is a chronic suffer my 2 year old was diagnosed a month ago. my daughter when she diagnosed was given an infusion and her body rejected it, so they decided the best course of action was just to leave it, her count even now is rarely above 50!!, now my son who was diagnosed a month ago had his blood last taken just over a week ago and is due to have it taken again on friday his count was at 6, he is well in himself so they have decided as we already know what we are doing with my daughter they are going to let his manage itself for now as well, he has also been referred to my daughters blood specialist its all very odd

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Re:How often have you had to have IViG? 10 years 2 months ago #6309

  • falafal0
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Eight years?? That's amazing. I feel for your family going through all that. I realised it's been only 10 weeks sinc our son was diagnosed, not 14 so it makes me feel even worse. Are your doctors worried about spontaneous bleeding at counts so low with your son? They haven't tried anything else? I'm new to all of this so it seems like forever already - I can't imagine it going on for many months or years like you.

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Re:How often have you had to have IViG? 10 years 1 month ago #6798

  • bethann
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Hello Again. It has been 11 months since my daughters diagnosis of ITP. She went to the dr. yesterday and she is at 93,000. In September, they plan to run additional tests (i believe an ANA test) because it marks the one year mark. They are now calling it chronic but it seems many still recover even after a year. I hope that is the case. This has been difficult for me to handle. Although, my three year old complains of nothing and carries on like a normal three year old. In the past year she has only been above 150,000 two times. Once with treatment and once on her own. We currently do not treat with anything but constant monitoring and bimonthly CBC's.

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Re:How often have you had to have IViG? 10 years 1 month ago #6815

  • falafal0
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One year - goodness. Hope it goes more smoothly for you than it already has. Our little boy after his third infusion hit the highest count yet - 234,000!CAN'T believe it. We relaly hope it's over and done with as it's been 3 months now...fingers crossed...

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Re:How often have you had to have IViG? 10 years 1 month ago #6816

  • falafal0
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One year - goodness. Hope it goes more smoothly for you than it already has. Our little boy after his third infusion hit the highest count yet - 234,000!CAN'T believe it. We relaly hope it's over and done with as it's been 3 months now...fingers crossed...

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Re:How often have you had to have IViG? 10 years 1 month ago #6817

  • falafal0
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To update, we had our third infusion and Ethan's count is WAY up to 236K! Unbelievable. We really hope this is the last we'll see of it as it's been three months now. Fingers crossed. Hope everyone else has some good news coming their way :-)

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Re:How often have you had to have IViG? 10 years 3 weeks ago #7638

  • jackie09/17/2005
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hi!

im jackie im 18 and i have had itp for 6 years now and i have tried the i.v.i.g. and it worked great when i first started i was in the hospital probably every 3 months and then at a point i wasnt back into the hospital for 2 years. and just having my count checked about every 2 to 3 months. unfortunately this year the i.v.i.g. hasnt been working so great i mean it still brings up my count but not for long amounts of time but i have also been taking it for 6 years. Have they ever talked about doing a whinroe treatment?? im not sure on the spelling of it im sorry but it worked really well for me when i needed a quick boost. the only problem was i was allergic to it... it only took about a half hour for the treatment and then it last a good amount of time.....


if you have any questions you want to ask just write back i would be glad to help =)


diagnosed september 17th of 2005 when i was 13 excatly a week away from my birthday

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Re:How often have you had to have IViG? 10 years 2 weeks ago #7842

  • vsessions
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Hi there. I was wondering the same thing - thanks for posting.

My daughter Remley is 4 now, she needs an IVIg about every 4 weeks to keep her above 10,000. Not sure how long they will keep that routine up but it seems to be working for her.

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Re:How often have you had to have IViG? 9 years 11 months ago #8561

  • Angelalogin
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Hi there, my son was diagnosed with ITP in August of this year...Initially was a transfusion, didn't work, he was down to 2 went to 11. Then on to IVIG, two infusions, worked for a couple days, then back to be admitted, he's 10 and had a stroke after transplant when he was a baby so is functional but very delayed. In the last two months we've been admitted 6 times and everytime has had 2-3 treatments of IVIG. Everytime the results are less impressive. We've also tried the Anti-D. Didn't work. But the oral pred which for my son is WAY better than the Methylpred which nearly killed him, works in conjunction with the IVIG. But its like everyone said a temp fix, only works for my son for a week and a bit, then he hits rock bottom...like right about now. He does have bronchitis and although all the hem docs are telling me that that has nothing to do with it, I think they are full of it!!!!!!!!!!!!! I cry all the time, Im a mental and emotional wreck after seeing my son pack his own bags now to go to the hospital, but its what buys a few days at home! We'll run with it, and enjoy our time at home while we can. This site has helped soooooooooo much, I feel so much better to know Im not alone!

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Re:How often have you had to have IViG? 9 years 10 months ago #9536

  • MissMOM
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My daughter also 2 and a half yrs old , had the IVIG just her very first time and since then she gets Whinroe. It works really good. It raises her counts to over 300 and they stay up for about 2 months. She has had 3 treatments total and had ITP for 8months.

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Re:How often have you had to have IViG? 9 years 10 months ago #9537

  • MissMOM
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How old is your son?

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Re:How often have you had to have IViG? 9 years 10 months ago #9546

  • Angelalogin
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Hi my son is 10 years old

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