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TOPIC: new to ITP and nothing helps

new to ITP and nothing helps 9 years 7 months ago #12250

  • alexpaul
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My son was told on January 10, 2011 that he had ITP we had a level of 500 did IVIG TWICE AND LEVEL CAME UP TO 26,000. BY MONDAY WAS BACK AGAIN LEVEL 3.34 THIS TIME DID WINRO BECAUSE IVIG GAVE HIM MIGRANE AND VOMIT AFTER. AFTER WINRO HIS LEVEL CAME DOWN TO 2.76. tHE NEXT DAY WE DID BONE MARROW STARTED PREDISONE AND LEVEL CAME UP TO 8.8 DID ANOTHER ROUND OF IVIG AND LEVEL CAME UP TO 50,000. TWO DAYS LATER WE HAD NOSE BLEEDS AND BRUISES I KNEW HIS LEVEL WAS COMING DOWN. WE THEN STARTED RITUXIMAB WITH A LEVEL OF 2.9 WE GO BACK VERY WEEK TO DO A TREATMENT OF RITUXIMAB. SECOND TREATMENT LEVEL WAS 3.1, SO THEY DID A ROUND OF METHYLPREDNISOLONE IN HIS IV. TWO DAYS LATER MY CHILD COULD NOT WALK HIS LEGS WERE IN SO MUCH PAIN. DID I MENTION THAT HE IS 7. THE LEGS HURT FOR THE NEXT COUPLE OF DAYS BUT NOT AS BAD. BY MONDAY I SENT HIM TO SCHOOL AND WHEN HE CAME BACK FROM SCHOOL THE TROUBLE STARTED, HE HAD BLOOD IN HIS URINE AND A LOT OF IT. WE BROUGHT HIM IN TO ER AND HIS LEVEL WAS 900 AND HAD A LOT OF BLOOD IN URINE. THEY STARTED HIM ON IVIG THAT NIGHT AND NEXT MORNING DID A ROUND OF PLATELTS TO STOP THE BLOOD IN URINE. THAT AFTERNOON HIS LEVEL WAS 71,000 BUT I WAS NOT EXCITED YET BECAUSE THEY HAD JUST GAVE HIM TRUE PLATELETS. THE NEXT NIGHT DID ANOTHER IVIG AND THE NEXT MORNING DID AN ULTRASOUND ON HIS KIDNEYS AND SPLEEN ALL LOOKS NORMAL. HIS COUNT WAS UP TO 78,000 THE HIGHEST IT HAS BEEN SINCE THIS STARTED. THAT DAY WAS OUR NORMAL DAY FOR RITUXIMAB SO THEY WENT AHEAD WITH THAT TREATMENT AS NORMAL. AND DON'T YOU KNOW THAT DAY HE CAME OUT WITH A RASH ON HANDS AND LEGS AND ITCHING LIKE CRAZY LIKE HE DOESN'T HAVE ENOUGH TO WORRY ABOUT. WE LEFT THE HOSPITAL LAST NIGHT AND WE GO BACK NEXT WEDNESDAY FOR OUR LAST TREATMENT. THAT IS IF WE ARE NOT THERE BEFORE. I AM NOT FEELING TO GOOD ABOUT THE WHOLE THING OUR LEVELS GO UP AND COUPLE OF DAYS AND THEN WE ARE BACK AGAIN. THE DOCTOR SAID THAT HE IS BEING STUBBORN, AND NOTHING SEEMS TO BE WORKING ON HIM FOR A LONG TIME. IF ANYONE HAS ANY ADVISE I WOULD BE HAPPY. THANKS LORETTA

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Re: new to ITP and nothing helps 9 years 7 months ago #12270

  • patti
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Loretta,

What a lot for a little guy to go through. :-( As a mom of an 11yr old that was dx when he was 10, I want to encourage you to read through the natural thread on homeopathy. My son's case sounds much like your son's in terms of not responding, etc. We started using homeopathy and it has fixed my son. His last count was 188,000. It has healed so much of his body (besides ITP) as well. If you do a search for "homeopathy" it will pull up the threads that discuss it.

patti

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Re: new to ITP and nothing helps 9 years 7 months ago #12382

  • alexpaul
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Well today is Tuesday so for good. We have been out of the hospital since wednesday and our levels i guess or okay we have no new bruise and the old ones are healing great. We go back in for our fourth treatment of Rituximab tomorrow. I hope our levels are the same or higher. We are thinking about getting him a helmet for him to hear at home riding bike and things like that. Any idea where to get one?

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Re: new to ITP and nothing helps 9 years 7 months ago #12383

  • Rhiannon
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In UK people riding bikes should be wearing helmets anyway but most dont....:unsure:

Any good cyclist shop will sell helmets

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Re: new to ITP and nothing helps 9 years 7 months ago #12406

  • menminime
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I know how you feel my child was diagnosed with ITP in December of 2010. Like you we are in and out of doctors office and hemo office. Along with finding out it isn't an acute case.

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Re: new to ITP and nothing helps 9 years 7 months ago #12554

  • alexpaul
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Well we went back in Wednesday for our fourth treatment of Rituximab last week our level was 78,000 and today our level was down to 54,000 which is still go but they are dropping again. But it was not bad. On Thursday I noticed red spots on his belly and sides and Friday too. But today i didn't notice too many of them. We go back on Wednesday to check his levels. And we are waiting for a second opion from Dallas, Tx.

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Re: new to ITP and nothing helps 9 years 7 months ago #12578

  • SteveC
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I didn't respond to Rituxan until week 9 after my first Rx so hang in there. Seems many jump much sooner but there is still hope - Keep the Faith!
Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C

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Re: new to ITP and nothing helps 9 years 6 months ago #12621

  • alexpaul
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what if the levels drop after the treatment does that mean it didn't work or still wait
loretta

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Re: new to ITP and nothing helps 9 years 6 months ago #12719

  • SteveC
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I only have my experience which might not be typical but I'd say try not to get concerned and give it time. I bounced around +10, -2,-4, +8, -4 but generally had a slight improvement trend over time. Week 9 +30, +25, +40 and +65. So there wasn't much doubt something was happening after all the small up/downs.
Blessings of enough...
Faith to trust our Lord
Joy to share with others
Strength to help the weak
Love to share with the hurting

Steve C

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Re: new to ITP and nothing helps 9 years 6 months ago #12754

  • alexpaul
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hello to all just wanted to updated telling everyone that alex had cbc count yesterday and with rx the count in 129,000. we are so happy this is the first time we get any reaction with any medicine. i hope they stay that way. thanks for listening and all the support.

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Re: new to ITP and nothing helps 9 years 6 months ago #12900

  • alexpaul
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we are doing great didn't have no bruises at all this weekend. But today the school called and he had a headache went pick him up and tonight he has itching spots all over him and they are turning red and making marks. i hope the levels are not dropping. i had to give him bendrayl to go to sleep. is there a connection with itp and skin problems. he also has his hands peeling skin all over them. thanks

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Re: new to ITP and nothing helps 9 years 6 months ago #12918

  • alexpaul
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Well we woke up this morning and he don't have the big red spots and itching like last night but we do have red/ purple marks where he was scaring him. If any one has advice or anything on this topic please let me know. thanks loretta

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Re: new to ITP and nothing helps 9 years 6 months ago #13242

  • 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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I'd call his pediatrician. Sounds like something is going on - hives, maybe?

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Re: new to ITP and nothing helps 9 years 6 months ago #13244

  • patti
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alexpaul wrote: we are doing great didn't have no bruises at all this weekend. But today the school called and he had a headache went pick him up and tonight he has itching spots all over him and they are turning red and making marks. i hope the levels are not dropping. i had to give him bendrayl to go to sleep. is there a connection with itp and skin problems. he also has his hands peeling skin all over them. thanks



You might want to consider switching to sulfur pellets for itching instead of benadryl. Because it's known to lower platelets it won't help keep your son's up at all. For someone without the risk or gene propensity to low platelets, benadryl might be fine. But with ITP, I personally wouldn't use anything known to lower them. We had trouble with benadryl keeping our boy's platelets low.

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