Platelet Disorder Support Association

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Child feeling Isolated/Different

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5 years 10 months ago #68113 by ebcohan
Child feeling Isolated/Different was created by ebcohan
Hi. My 7 yo was diagnosed with ITP three years ago this January. As a first grader now, she is struggling with not being able to participate in activities, like recess. She is also feeling very isolated and alone. I was wondering if anyone is in a similar situation, and how you helped your little one feel better. I would love to introduce her to another child that has ITP, but not sure how to go about meeting people. Any suggestions? Thank you in advance!
5 years 10 months ago #68115 by
Replied by on topic Child feeling Isolated/Different
That sounds rough. My heart goes out to her.
Maybe see if there is a PDSA platelet support group in your area. If so, ask the leader if they know of any children who have ITP in the area. I'd also ask her hematologist as well as the infusion center(s) in your area.
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5 years 10 months ago #68117 by JJ
Replied by JJ on topic Child feeling Isolated/Different
What is her platelet count?
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5 years 10 months ago #68118 by ebcohan
Replied by ebcohan on topic Child feeling Isolated/Different
When she was first diagnosed they got down to 4,000. After 4 IVIG treatments -a year and a half ago she went gluten free and started taking pills from a holistic doctor (arnica, papaya leaf extract, and some others) since then her numbers have greatly increased. her last draw three weeks ago they were at 96,000! but they are not consistent enough to be given the green light to return to normal activity.
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5 years 10 months ago #68128 by MelA
Replied by MelA on topic Child feeling Isolated/Different
Your profile says you are from il - is that Illinois?
If you are near the Chicago area there is a support group - I don't know if there are any children
in it but I can ask for you if you would like. Let me know.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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5 years 10 months ago #68138 by ebcohan
Replied by ebcohan on topic Child feeling Isolated/Different
Hi. Yes. I am just outside of Chicago. I reached out to a local support group, but they didn't think they had any young kids. If you don't mind asking that would be great! Thank you!
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5 years 10 months ago #68142 by MelA
Replied by MelA on topic Child feeling Isolated/Different
Will do
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: ebcohan
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
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5 years 10 months ago #68149 by Hal9000
Replied by Hal9000 on topic Child feeling Isolated/Different
ebcohan, in my local PDSA support group there is a little girl and her father that occasionally attend. As I recall, after struggling with IVIG treatments for a long time (several years?) she went on to taking Promacta. With that, life pretty much returns to normal - as happens with adults too.
ITP Types and Treatments by HAL
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5 years 10 months ago #68153 by ebcohan
Replied by ebcohan on topic Child feeling Isolated/Different
thank you for this information. i will ask her doctor about it.
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5 years 10 months ago #68161 by MelA
Replied by MelA on topic Child feeling Isolated/Different
My friend thinks you may have already contacted her - she told me to tell you to go to their facebook page if you are on facebook. in search put in: Chicagoland ITP Support
I believe you will be able to post there and ask if anyone knows a child with ITP or ask questions

Good luck!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
  • Trish
  • Offline
  • Diagnosed with ITP 02/26/2002 Facilitator of Chicagoland ITP Support Diagnosed with Hypertrophic Cardiomyopathy May 2008 http://chicagoitpsupport.org "When you're going through hell, keep going." ~Winston Churchill
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5 years 10 months ago #68187 by Trish
Replied by Trish on topic Child feeling Isolated/Different
Hi there - I think you may have reached out to me - I'm still looking and not getting any answers - however, Promacta is a good choice - it's done wonders for me. Was my silver bullet, actually.
I have posted on our Facebook page - yet haven't been able to get to the email yet - will try to do it ASAP...
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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