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Looking for Pediatric Stroke Support Groups
My daughter suffered an in utero stroke, she is now 14 and doing well. I am looking to find a support group for her of other pediatrict surviviors. Does anyone have any support groups that you may know of? I am in Arizona, are there any out there?
Thank you all.
Vegas, August 20, 2018 4:19pm EST
I don't personally know a group and don't want to recommend a group I Googled without knowing they are okay but there might be a facebook group and they might meet up near you.Someone mentioned a facebook group for female stroke survivors and there might be one for her age.
Another way to meet people and compete could be video games. I'm trying to get people with similar disabilities to play each other and eventually have disabled e-sports teams.
You might like the accidental genius post in the stroke catagory and the game clips in the heart rehab section.
As someone who had a stroke at age 5, I strongly recommend the whole family see a counselor if possible. No pills but talking can help everyone. The stroke either can or does affect everyone envolved in profound ways, and talking helps.
ASASarahI, August 21, 2018 1:12am EST
I would encourage you to call our Stroke Warmline. You can talk to actual stroke survivors to see if they have experienced the same things you are going through.
The Warmline connects stroke survivors and their families with an ASA team member who can provide support, helpful information or just a listening ear. We have trained several members of ASA's national call center to answer your questions about stroke.
Call us Monday- Friday between 8:00 a.m.-5:00 p.m. CT at 1-888-4-STROKE (1-888-478-7653).
AmbassadorDN, September 19, 2018 5:37pm EST
I'm a perinatal stroke survivor myself; my stroke was during my mother's labor with me 43 years ago, and aside from having had to deal with surgeries to address my congenital heart defect (which was the likely cause of the stroke), I'm doing awesomely well! One of our VTE Ambassadors, Mary Kay, is the co-founder of the International Alliance for Pediatric Stroke. The web site is http://iapediatricstroke.org/home.aspx Mary Kay and her college-age daughter, Michelle, who is an in utero stroke survivor, are avid AHA Ambassadors and do much to spread awareness of pediatric stroke.
I hope this helps! Also, feel free to ask me any questions since I have a lifetime of experience living with the aftermath of a stroke.
AmbassadorMK, September 19, 2018 7:28pm EST
Hi! My daughter also suffered a stroke before she was born. She is now 20 and in her 3rd year of college. I don't know of any local support groups in Arizona, but I can recommend a Facebook group, KISS. https://www.facebook.com/groups/KISSPediatricStrokeSupport/ You may be able to ask if there is anyone in AZ that is willing to meet in person. I can tell you that face to face meetings are valuable not only for the parents, but also for the children. If you would like your daughter to connect with others in her situation, I can send you my daughter's contact info. Also, check out our website, www.iapediatricstroke.org for resources, publication and inspiration. You are not alone and there are many children going through what your daughter is going through.
Mary Kay Ballasiotes
debbiehart, October 13, 2020 11:08am EST
Hi.My son probably had a stroke in utero causing mild CP at birth. He's 25 and doing ok although continues with lots of speech and language problems.
I would like to contact others in a similar situation