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TOPIC: How long will this last??

How long will this last?? 9 years 1 week ago #5439

  • mrscookers
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Hello. My son, Jack (10 1/2 months), has been diagnosed with ITP. His levels dropped to 2000 two weeks ago and we did IVIG treatment and they jumped up to 184,000. One week later and his levels were back down to 2000 again. We are currently on day 2 of steroids, and he is doing well. He took his first steps the day before he was diagnosed, so it is hard to keep him from falling. We will check his levels again in the morning. Question to all of you, how long will this last?? How many different treatments have you all done?? Will any of the treatments keep the levels up?? My doc told me that if this doesn't work will will try WhinRho next. Having a difficult time putting all of these drugs in my baby.

How young were your children when they were diagnosed?

Thanks for talking,
mrscookers

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Re:How long will this last?? 9 years 1 week ago #5445

  • server
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  • newcreationchangingdaily
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Hello mrscookers :)
Glad you found this site. There are lots of smart people here! I am an adult with ITP, just diagnosed this past February. Unfortunatly the only answer to your question is, no one knows. There is no explaination of why people get ITP, what the symptoms will be, how one will react to treatment or how long it will last. I have heard on this site that for children there is a greater chance of the ITP "fixing" itself. I have 2 children of my own so I can relate to not wanting to put all those drugs into your child. I guess you just gotta weigh the choices and choose what you think is best. Give Jack a big hug from us!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:How long will this last?? 9 years 1 week ago #5453

  • NatalieM
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Awww...I hate hearing that such a young little one has to deal with all this crap, especially when he is just learning how to walk. You should be enjoying that milestone and not having to worry about ITP. If you research ITP, you will find that many times, ITP in young children is usually acute, meaning that it will "fix itself" as server said. But in the meantime, I guess treating is the smartest thing to do considering his numbers are low. If I was you, I would wait and see what the steroids do. They may boost his numbers up to a good count and give you more time to consider your other choices. I do not have children, but I have had ITP for over a year now, so I know how aggravating it can be! I was 22 when I was diagnosed and like you, my parents were very uneasy about it and concerned. I guess that "parent mentality" sticks with you no matter how old your babies get. I did Rituxan and have been in remission for over a year. My best advice to you would be to research WhinRho and all other forms of treatment. There are several people on here with young children that have tried that route. There are also many people with small children who have tried Rituxan. Hopefully they will read your post and be able to give you more valuable advice! Good luck with your search and I hope your son has a remission in the near future!

Natalie
*Here's to high platelets!*

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Re:How long will this last?? 9 years 1 week ago #5471

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hello:

No one can tell you how long this will last. Could be another week, could be a lifetime. The good news is that most children (80%) are acute, meaning that ITP resolves within 12 months.

IVIG is a pretty temporary treatment for most. Prednisone and Win-Rho can last longer if the person is responsive to it. I hope his counts are up!

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Re:How long will this last?? 9 years 1 week ago #5479

  • Ann
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I'd do more research if I were you. Modern thinking is that children don't need treating unless they have serious bleeding issues.

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Re:How long will this last?? 9 years 1 week ago #5484

  • dbishop
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Hi There,

My son was diagnoised when he was 14months and he too was just learning to walk....I had the same fears as you did but we were lucky and after 1 treatment of IVIG his counts went back to normal for over a year. But this past Nov his counts crashed again after a flu shot and since then we have been riding the rollercoaster called ITP. I find this time around much harder to deal with emotionally because now he is a toddler (2 1/2) and getting a toddler to walk instead of run is nearly impossible.

We have been doing the watch and wait approach untill about a month ago when his counts went to 8,000....because of his age we always agreed with his hemo that if he dropped below 20,000 that we would start talking about treatment and that if he dropped below 10,000 then treatment was a must!!! We have been able to do the approach because Devyn is not considered a "bleeder" and i pray to god that he never becomes one. This time around we only had normal numbers for 2 weeks after treatment. Right now he is at about 76,000.

I hope that his counts have gone up since your last post.....as hard as the wait and watch approach can be i definitly see why more DR's are doing it if the child is not symptomatic. Sometimes i'm not sure what scares me more the disorder itself or the treatments for it. This is a great place to get advice.....this forrum had helped me learn so much about ITP so don't hesitate to ask anything!!!

Good luck!!!

Deanna
Mommy to Devyn 3 years old

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Re:How long will this last?? 9 years 1 week ago #5485

  • Angel85
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Welcome

Like Sandi has said, sadly no one knows how long it will last. Hopefully your son's ITP will resolve itself. I myself have had it for about 20 years. I was diagnosed with it when i was 5 and i am 25 this year. It can be very confusing and down right depressing at times, but you just need to try to stay positive and realise that it is not a death sentence for him, it is not as bad as some other dieseses out there, hope it all goes well and keep us updated on him.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:How long will this last?? 9 years 1 week ago #5489

  • mrscookers
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Thanks everyone for the advise...that is what I have read and heard also. We could be in for a long ride. The first week we did just monitor my son and his levels went up for a while and we stayed near the hospital because we live 4 hours away from a hospital that would be able to help him if he did take a bad fall. His levels got up to 15,000 then and the doctors sent us home and we would check his levels at our local hospital. When we checked and his levels were 2000 the doctors wanted to do the IVIG treatment. The reason why we are even doing any treatments at all is because we live so far away from a hospital that would be able to help him if something did happen.

We tested on Friday and his levels were up to 76,000. I just pray that his little body will take over so we don't have to worry about this any more.

Thanks again :)

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Re:How long will this last?? 9 years 6 days ago #5504

  • server
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So glad to see that his numbers are up! I'll be in prayer agreeing with you for his body to take over and stop this nonsense. It sounds like you have doctors that are sensable, that's a good thing!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:How long will this last?? 8 years 11 months ago #5823

  • mrscookers
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** UPDATE ** We tested again last Friday and his levels are at 108, so it is getting better. In the morning he will start only 1/2 a pill of his steroids and we will be done with them in 1 more week. He will have his levels tested again this Thursday, we are just praying that they are high and stay high. Thanks for all the advise and well wishes for my little man. I appreciate it!!

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Re:How long will this last?? 8 years 10 months ago #6639

  • patti
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Two months ago we sat where you are right now. We submitted to the ivig because we were afraid. Our son was at 1000 when he was diagnosed. Since then, we have decided that a watch and wait approach is more preferable for us then putting more drugs into our boy's body. He was given ivig that had come from someone with hep. B which made things worse for us. So he now has hepatitis b antibodies running through his system. Our boy has been sitting at 0-2 for more then 2 weeks now and he's no worse for the wear other then we keep him pretty low. But for us, putting more drugs into a body that is already immune compromised makes no sense. Watch and wait is a viable option if you're comfortable with it. It will likely take longer for him to recoup as the body tries to heal itself though.

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Re:How long will this last?? 8 years 10 months ago #6652

  • Sandi
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Patti:

Every situation is different and sometimes the treatments are warranted. Having ITP does not make a person immuno-compromised, although some of the meds can cause that. Treatments can be a very important part of having ITP; the body does not always heal itself and may need a boost.

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Re:How long will this last?? 8 years 10 months ago #6706

  • patti
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Sandi wrote:

Patti:

Every situation is different and sometimes the treatments are warranted. Having ITP does not make a person immuno-compromised, although some of the meds can cause that. Treatments can be a very important part of having ITP; the body does not always heal itself and may need a boost.


My son is immune compromised. He has been since his MMR shot when he was a toddler. That was the point I was trying to make. But for the record, if someone has ITP, they have a compromised immune system, otherwise they wouldn't have ITP. The definition of being compromised is an immune system that is not functioning as it should in some way, shape, or form.

I was also only trying to encourage the mom that she doesn't have to fear watch and wait. It's another choice, just like the drugs.

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Re:How long will this last?? 8 years 10 months ago #6724

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Actually, the immune system is a bit over-active in autoimmune disorders, not under-active.

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