Child feeling Isolated/Different

Child feeling Isolated/Different 3 years 5 months ago #68113

ebcohan
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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!

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Child feeling Isolated/Different 3 years 5 months ago #68115

b2h Offline Posts: 148 Thank you received: 47	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. The following user(s) said Thank You: ebcohan
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Child feeling Isolated/Different 3 years 5 months ago #68117

JJ Offline Posts: 226 Thank you received: 79	What is her platelet count?
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Child feeling Isolated/Different 3 years 5 months ago #68118

ebcohan
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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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Child feeling Isolated/Different 3 years 5 months ago #68128

MelA Offline Posts: 1105 Karma: 2 Thank you received: 367	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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Child feeling Isolated/Different 3 years 5 months ago #68138

ebcohan Offline Posts: 5 Thank you received: 0	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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Child feeling Isolated/Different 3 years 5 months ago #68142

MelA Offline Posts: 1105 Karma: 2 Thank you received: 367	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
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Child feeling Isolated/Different 3 years 5 months ago #68149

Hal9000 Offline Give me all your platelets and nobody gets hurt Posts: 1699 Karma: 10 Thank you received: 246	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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Child feeling Isolated/Different 3 years 5 months ago #68153

ebcohan Offline Posts: 5 Thank you received: 0	thank you for this information. i will ask her doctor about it.
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Child feeling Isolated/Different 3 years 5 months ago #68161

MelA Offline Posts: 1105 Karma: 2 Thank you received: 367	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
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Child feeling Isolated/Different 3 years 5 months ago #68187

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 Posts: 5 Thank you received: 1	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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