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TOPIC: 19 months old not responding to any medicines

19 months old not responding to any medicines 9 months 6 days ago #65433

  • shivaandeb
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My son who was born at 27 weeks had no issues at birth..recently when he started walking at 15 months we started noticing a lot of bruising on his body especially in his shins..after a blood test we found that he had only 8000 plateletes..he was admitted and administered IVIG and diagonised with ITP ( Immune Thrombocytopenic Purpura) after which his P increased to 40000..but after a week it dropped to 19k followed by 10000 and 8000 respectively at weekly blood test..one fine day he had a mild nose bleed so the doc started him on steroids as his P was at his lowest at 5000. Unfortunately he did not respond to steroids as after a week his P was only at 10000. The doc continued the steroids for another week to chk if he is a slow responder, unfortunately he dint respond.the doc stopped the steroids and ordered a bone marrow aspiration. Nothing alarming.the results were normal.he was given IVIG again to bring his critically low 5k P up.now he is on eltrombopag 25mg but 2 weeks already and his p is dropping steafily.first week to 21 and second week to 14k.he has no wet bleeding.need to know if any one had a similar experience or aware of the condition and prognosis..appreciate any input..

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19 months old not responding to any medicines 9 months 5 days ago #65434

  • maria3132
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How long ago was he diagnosed? No wet bleeding is a good thing. As our hematologist said to us about our son, 5,000-10,000 platelets is NOT zero. We opted to treat below 10,000 but only with ivig. Guidance is actually not to treat in young kids unless there is bleeding. 70-80% of kids recover spontaneously by the one year mark, many within the first six months. We had a lot of ups and downs in the first three months and managed with ivig, a helmet and "foot on the ground" rule. We tried papaya. Around the fourth month we started to see some stabilization. You can read my story by clicking on my name and going to the "Three year old..." thread. Best of luck to you and the little one.

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19 months old not responding to any medicines 9 months 5 days ago #65435

  • shivaandeb
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Thanks for your response Maria.it gave me some hope.it was first observed in late Aug but we went to doc only in October first week.
I am going to look for your thread to get details.

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19 months old not responding to any medicines 9 months 5 days ago #65436

  • th8899
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My 12 years son also diagnosed with ITP at the end of Sept. His response to IVIG and Prednisone was worse than your kid. IVIG or Prednisone alone could not bring his count above 10K at all. However, when our hemo gave him IVIG and high dose Prednisone at the same time, his platelet count shot up to 500K+. It only last for about 3 weeks, then his platelet was back down to 4K. We started Promacta 3 weeks ago and did not see any improvement yet. We will give Promacta another 2 weeks. If it still did not work, we will try NPlate next. At the beginning, my whole family were panic. But give it sometimes, as many said here, it will get easier. I learned a lot in this forum. Stay strong and positive.

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19 months old not responding to any medicines 9 months 5 days ago #65437

  • shivaandeb
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Ok..noted.i have an appointment on 20th Dec.. Will update you all on the result and course of action decided..thanks

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19 months old not responding to any medicines 9 months 5 days ago #65438

  • th8899
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Platelet transfusion won't help for ITP. Immune system will eat up those platelets in few hours. As far as I knew, Promacta and NPlate are relatively safe and has less side effects comparing to other treatment. For Promacta, you need to follow the dietary restrictions very closely. For NPlate, you need to do weekly injection. In US, we have to go to doctor office to do that.

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19 months old not responding to any medicines 9 months 5 days ago #65439

  • shivaandeb
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Thanks a lot for your support here.was looking into Nplate.is it safe? Any thing to look out for? My doc said that if he is not responding to eltrombopag then the last resort is P transfusion.

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19 months old not responding to any medicines 9 months 5 days ago #65440

  • mrsb04
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th8899
From personal experience I would give the Promacta longer it can take time to have an effect. What time is he taking it? I find taking it last thing at night as I go to bed makes the dietary restriction virtually none existent. If he is still on 50mg the dose can be increased to 75mg. Protocol is that it cannot be deemed a failure as a treatment until 4 weeks on the maximum dose has failed to produce the desired effect. Literature will state this is a count of 50k. I would say any count above 30k is ok. If I could maintain a count of 30 without medication I would be delighted.
Shivaandeb
Please note the above and make sure your haemo doses correctly, 25mg a day to start with in one so young. If your haemo thinks a platelet transfusion is the last resort then maybe it is time to look for a new haemo.
The following user(s) said Thank You: maria3132

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19 months old not responding to any medicines 9 months 4 days ago #65441

  • maria3132
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Is your doctor a pediatric hematologist? It seems like they went to TPOs very quickly for a child. I also agree with mrsB that a platelet transfusion is not an appropriate treatment for ITP (bassd on everything I've read and heard from our doctors).

Four months in is still early (even though I know it feels like years) and the chances for a spontaneous remission are still good. Are you seeing an upwards trend in terms of response to ivig? Our son started at 2k, then dropped back to 5k after a temporary ivig boost; then after the next ivig wore off, he dropped back to 8,000. Then back to 10,000 etc.

The very young kids are more likely to go into remission and kids generally are more likely to do so than adults, but even for adults, it's a good possibility they will.

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19 months old not responding to any medicines 9 months 4 days ago #65442

  • th8899
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Mrsb04,
We are still on 50 mg Promacta. Our hemo is very hesitate to increase dose and think 75 mg is too much for a 130 lb kid. We initially gave Promacta to my son before going to bed around 9pm. That is about two hours after meal. However, I realized that even we do not give any diary product during dinner. Our dinner still consider high calcium. So last 4 days I start to wake him up at midnight to take it. Hopefully this could make a difference.

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19 months old not responding to any medicines 8 months 2 weeks ago #65505

  • maria3132
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shivaandeb, how is your son doing?

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19 months old not responding to any medicines 8 months 1 week ago #65518

  • BRITT
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I have been diagnosed with ITP low platelet 11 months ago. I HAVE BEEN GETTING THE NPLATE shot every week since last Feburary.I have had IVIG, platelets transfussion, Rituximab and high doses of steroids. Decembber 26 my count went up to 878,000 December 31, I went down to 194,000 today January 7, I AM AT 2,000. They want me to start an old drug called immunoglobulin. I have read bad side affects connected with this drug. I need any help or advice I can get. eibbed58@yahoo.com

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19 months old not responding to any medicines 8 months 1 week ago #65542

  • Hal9000
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Britt, some folks call IVIG: 'immuno-globulins'. Is that what happened?
From 878 down to 2 in just a few days. That's extreme. Counts better now?

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