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No additional treatment options available for my son.

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1 year 3 months ago #73072 by Reeves29928
My son was diagnosed in October 22 with ITP. His platelets were 23000. He started with dexamethasone and IVIG. He did not respond. Was given Nplate and responded and released from hospital. The N-plate stopped working. To make a long story short, he has been hospitalized for two months. His platelets are anywhere from 2000 to 12000 with the 12000 being short lived. He is currently on Doptelet and Fostamatinib (3 weeks) with no response. He also had a partial splenic embolization (post 1 week). He receives daily platelet and red blood cells (low hemoglobin). Platelets are not working. He also has a GI oozing causing bloody stools. 

Doctors have reached out to associates at other hospitals with no additional answers.

any help would be appreciated.

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1 year 3 months ago #73073 by RR01
@Reeves29928  Not sure if it helps but I have ITP for the past 4 years and my platelets have always been in  the 20K range. I have tried ivIG once but the count dropped after 3 weeks . After that I didn't want to go for any more treatments,  In my case I felt that the treatments and constant blood count checks were making the condition worsen even more. As a mom it should be really tough for you, please try not to worry too much. As soon as they figure out something that works for him just to maintain at the 25-35K range , this will all be behind him.  

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1 year 3 months ago #73075 by Reeves29928
Thank you for your kind words. Doctors have run out of treatments. This morning platelets were at 3000. Praying for a miracle.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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1 year 3 months ago #73078 by mrsb04
pdsa.org/conventional.html 
@Reeves29928 There are lots more treatment options see the link above. 

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1 year 3 months ago #73080 by JJ
You need to see a haematologist who is experienced in treating ITP because it's not normal protocol to do platelet transfusions for ITP. In fact it can make the situation worse as it makes the body do everything it can to eliminate the new platelets. Good luck.

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1 year 3 months ago #73085 by Reeves29928
Thank you for your response. We do have a benign hematologist making the decisions. They are transfusing platelets due to the GI bleed. They do not last long but they are buying time waiting for something to work.

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  • Lman
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  • We cannot change the cards we are dealt, just how we play the hand.
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1 year 2 months ago #73126 by Lman
Hi
so sorry to hear that
Platelet transfusion is normal for GI bleeding
There are still plenty of treatments available (or a combination of treatments)
I don't know where you live but try to find a more professional doctor who knows how to combine treatments. What they have done so far seems based on protocols. but some people may not respond to treatment but may respond to a combination of treatments. You may also consider rituxan as well.

I hope you find something that works best for your son. I've been there and I'd pray for your son to get better soon.

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1 year 2 months ago #73127 by Reeves29928
Thank you for your kind response. They started Rituxan three weeks ago. He is still receiving Doptelet and Fostamatinib so they are trying combination treatments. This morning his platelets were 2000. He has been hospitalized for 11 weeks. Bone marrow biopsy and FoundationOne testing showed no cancer.

thanks for any and all help.

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