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My 12 year old daughter with Chronic ITP

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2 years 2 months ago #72333 by raj369459
My 12 year old daughter with Chronic ITP was created by raj369459
Hi All,
My 12 year old daughter was diagnosed with Chronic ITP in Jan 2020 and since then her platelet counts have been a roller-coaster ride. She received 1st Covid vaccine (Pfizer) in Jan 2022 and her platelets nosedived from 100K to 2,000 and were never in double digits since then. Currently, her hematologist is giving her Rituximab and she just finished her 4th dose. Last week her platelets went up to 277K.
We need to travel to India next month and not sure the risks involved with Rituximab and Covid 19. Since she is not eligible for 2nd dose of Covid vaccine (given adverse reaction to 1st dose in Jan 2022), is it safe to travel with her? If yes, what are the precautions to take while travelling apart of usual medications such as Promacta, Sirolimus etc?
Thank you for your advice!

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2 years 2 months ago #72334 by RR01
Replied by RR01 on topic My 12 year old daughter with Chronic ITP
Hello raj ,
Sorry that your daughter is going thru this tough time . Rituximab by itself makes one more prone to infections and I would suggest if you can should postpone the travel. She is already going thru a lot at this young age , why risk anything more. Just my thought . I don't have any experience with Rituximab but I did IvIG and dint have any sustained result with that , Dr. suggested Rituxan but I said no. I havent gotten my booster yet because of my low numbers . I have been postponing my travel to India as well .
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2 years 2 months ago #72336 by MelA
Replied by MelA on topic My 12 year old daughter with Chronic ITP
Personally I'd ask my daughter's hematologist the questions!  He/She would have those answers for you.
 
Since she just finished her 4th infusion of Rituximab was that her last one?
When is her next blood work?   Her count was really good last week, hope it stays up!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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2 years 2 months ago #72339 by raj369459
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
Yes, I have asked these questions to the hematologist and she said if the platelets are stable for 2 weeks, then we can consider. But I still need to ask her regarding the Rituxan infusions (last week was the 4th dose and the last one) and the implications it can have to tackle Covid infection or other viral diseases. Her next blood work is next Tuesday. Hope the platelets stay in normal range. Thank you!

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2 years 2 months ago #72341 by MelA
Replied by MelA on topic My 12 year old daughter with Chronic ITP
 Let us know what her count is next week - sure hope it is up at a real good count!!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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2 years 2 months ago #72348 by raj369459
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
Update on this week's CBC count: My daughter's platelets went up to 282K this week. Spoke to hematologist and she said although her platelets are normal, it's safe for her not to travel and that too internationally because of Rituxan. For now we decided not to travel with her and would plan next year. Thank you for all your suggestions!

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2 years 2 months ago #72351 by MelA
Replied by MelA on topic My 12 year old daughter with Chronic ITP
Very good to hear your daughter's count is still good raj - that is wonderful!   I am sorry you needed to cancel your trip but as you said there is always next year.   

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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2 years 2 months ago #72355 by raj369459
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
Unfortunately, my daughter's platelets went down to 4,000 today. Does this mean Rituxan didn't work or stopped working? Not sure what to do to improve her platelets. The only option left is splenectomy, but in my opinion she is too young for that. Also, there is no guarantee splenectomy would increase her platelets as the efficacy rate is just 40% overall.  Please let me know if anybody has this situation and if you tried any other treatment. Thank you!

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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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2 years 2 months ago - 2 years 2 months ago #72357 by mrsb04
Replied by mrsb04 on topic My 12 year old daughter with Chronic ITP
I see from a previous post that she has tried Promacta but no mention of NPlate. Would that be an option?

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2 years 2 months ago #72361 by RR01
Replied by RR01 on topic My 12 year old daughter with Chronic ITP
Sorry to hear that Raj , did IvIG hold up her platelets for a while ? If yes can that be done a little more frequently? What does your hematologist suggest , I have heard people using a combination -promacta+prednisone or nPlate+prednisone . Your hematologist should be able to give you some options , splenectomy is again not guaranteed is what everyone says.. We will have to exhaust all options before you go for that

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2 years 2 months ago - 2 years 2 months ago #72362 by raj369459
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
Sorry, I should have given complete history. My daughter's ITP started in Jan 2020. Below is the chronological order of treatments:
Jan 2020: IVIG (She had negative reaction to this, so they stopped after 3 doses)
Feb 2020: Prednisone (She was not responding to the expectation of Hematologist with 35mg, so they stopped)
Mar 2020: IVIG, Prednisone, Promacta, Platelet transfusions
Apr 2020: 4 weeks of Rituximab, Promacta (Rituximab didn't have any effect on her platelets)
May 2020: Increased Promacta to 100 mg from 75 and Sirolimus
Jun 2020: Promacta 150 mg and Sirolimus
Jul 2020: Promacta 100 mg and Sirolimus
Aug 2020: 4 weeks of Rituximab, Promacta (Rituximab didn't have any effect on her platelets), Promacta 100mg, Sirolimus
Sep 2020 to Dec 2021: Promacta 75mg, Sirolimus. During this period, she didn't get any other treatment as the platelets were still fluctuating but no bleeding symptoms
Jan 2022 to Mar 2022: After COVID vaccine, her platelets dropped suddenly and they increased Sirolimus and Promacta to 100mg
Apr 2022: 4 weeks of Rituximab, Stopped Promacta, introduced NPlate 4mcg, Sirolimus, one dose of IVIG
May 2022: NPlate 3mcg (this is when her platelets dropped from 282K to 4K), Sirolimus
 

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2 years 2 months ago #72364 by RR01
Replied by RR01 on topic My 12 year old daughter with Chronic ITP
ohh, She has gone thru a lot of treatments :(  My platelets though low were quite stable in 40's until I received the Covid vaccine shots then they dropped significantly ( very low now). Please keep your spirit up there will be some option that will work out for her. Sometimes we just need to give the body some time I guess.. This ITP condition is like literally unpredictable :(

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2 years 3 weeks ago #72416 by Eli
Your poor babe. My almost 3 year old daughter is in the early stages. Just started with Promacta as she's had ITP for 6 months. I hope that you can find a good treatment for your daughter, or better yet, that her plateletes recover on their own. 

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1 year 2 months ago #73138 by raj369459
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
Hello All,
It's been a while since I updated my daughter's condition. Since my last post, her hema stopped Sirolimus and N Plate as they were not affective and restarted Promacta 75mg along with 12mg of Dexamethasone for 4 days. Unlike other treatments, Dexamethasone increased her platelets to over 650K and then a sudden drop (<2) after about a week later.  Then they tried WinRho which showed some positive results for 2 weeks, but she couldn't sustain the count. Now she is on Dexamethasone once in 2 weeks as this is the only treatment which raises her counts although there is a drop to single digit a week later. The hematologist says they can't keep giving her Dexamethasone as it has adverse side effects and the only option left is to go for Splenectomy this summer. Can anyone share risks involved with Splenectomy and whether this outweighs risks living with very low platelet count? Of course I understand the risks with low platelet count.  Thank you!

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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 2 months ago - 1 year 2 months ago #73139 by mrsb04
Replied by mrsb04 on topic My 12 year old daughter with Chronic ITP
Has she tried Avatrombopag or Fostamatinib ?
Personally I  prefer a low count to a splenectomy. There is absolutely no guarantee it will work. My spleen is staying put.
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1 year 2 months ago #73140 by raj369459
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
Thank you mrsb04. I will check these two treatments with hematologist.
According to multiple hematologists we have consulted over the past 3 years, the recommendation to remove spleen is because my daughter is responding to steroids and none of the other TPORA medications work well. They say taking steroids which inhibits her immune system is as good as not having spleen for the duration of steroids in her body. This is the argument they make whenever I talk of other treatments as removing spleen should be last resort and in case of emergency.
Also, living with low count is very risky and we don't know how low can we go before we take this into consideration. As we have noticed, my daughter bleeds whenever her platelets hover around 0 to 2000 which most of the times is the case. This is causing a concern not only for her but for all of us at home. She is not responding to other 'safer' treatments like N plate, eltrombopag, IVIG etc.

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1 year 2 months ago #73150 by MoJoPokeyBlue
Replied by MoJoPokeyBlue on topic My 12 year old daughter with Chronic ITP
After trying everything, I had my spleen removed this past November.  It was a more difficult procedure than I had imagined and it took 3 months for me to fully recover.  It made no difference to my platelet count.  Without any medication, my count would go below 10.  I am now on Doptelet and that is working great.  

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1 year 2 months ago - 1 year 2 months ago #73153 by raj369459
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
Unfortunately my daughter had blood in her brain and her hematologist had to do emergency splenectomy. There was another discovery by her hematologist. She has LRBA deficiency and the previous hematologist forgot to check this report in January this year. I am not sure if they had targeted treatment for LRBA deficiency, her ITP would have been controlled and not go till the stage of splenectomy. Now my daughter has to deal with two issues- one without spleen and another with LRBA deficiency.

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1 year 2 months ago #73156 by RR01
Replied by RR01 on topic My 12 year old daughter with Chronic ITP
Hope she is doing fine, keep us posted. Let's hope that the splenectomy works for her and she gets out of ITP. LRBA - Are they giving reasons as to why she got that, like is this an acquired condition just like ITP? 

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1 year 2 months ago #73157 by raj369459
Replied by raj369459 on topic My 12 year old daughter with Chronic ITP
LRBA is an acquired genetic condition. My daughter inherited one bad gene from me and another from my wife. They said that if a child has LRBA deficiency then s/he is prone to autoimmune conditions and one of them is ITP.

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