sosudden Posted June 1, 2012 Report Posted June 1, 2012 Just curious if anyone would like to get together in the midwest??? My dd would benefit from a friend!!
Mayzoo Posted June 1, 2012 Report Posted June 1, 2012 Yeah, my kid could use a friend too, but I am in Central Texas. Wish I could help both our kiddos with this one
Mayzoo Posted June 1, 2012 Report Posted June 1, 2012 Familiar with that term as kiddos NSG was in Illinois and we made 1-2 trips a year to see him.
minimaxwell Posted June 2, 2012 Report Posted June 2, 2012 My DD17 now mentors/penpals with younger PANDAS kids. Feel free to have them email her drewashleymaxwell@gmail.com or friend her on FB. there is also a private fb page for Pandas kid to connect with each other.
Mayzoo Posted June 2, 2012 Report Posted June 2, 2012 My DD17 now mentors/penpals with younger PANDAS kids. Feel free to have them email her drewashleymaxwell@gmail.com or friend her on FB. there is also a private fb page for Pandas kid to connect with each other. We may try the e-mail idea; however, we do not use facebook. Kiddo is expressively delayed (autism and three neurological disorders + pandas) and 10 only yrs old. I would help her with the e-mails if we do this obviously, but if it seems like a waste of your DDs time (kiddo not motivated etc...) then I will let your dd know she is unable to right now. That is great that your DD is willing to share herself in that manner. I imagine my kiddo will not really "get it" as far as a pen pal goes, but many other kids could use a mentor that understands them. Give her a hug for me if you think she would receive it well, otherwise give her kuddos from me please.
AmySLP Posted June 2, 2012 Report Posted June 2, 2012 How do u find the private fB pages for pandas for the kids. My nearly 8 year old wants to know if anyone else has PANDAS...I think this would bE great for her
momoftwinsplus1 Posted June 2, 2012 Report Posted June 2, 2012 I asked my dd9 and she said she would be interested. She does have some language delays and is much improved, but still not fully recovered. She has good and bad days. We live in Topeka, so it should be fairly easy.
minimaxwell Posted June 3, 2012 Report Posted June 3, 2012 @ AMYSLP--You need to request to be added on the PANS PANDAS PITAND fb page. @Mayzoo- thanks for the hug and kind words. Drew has been a Special Olympics Coach for 7 years and is also involved with Best Buddies. She also works with Quadrapelegic and Parapelegic children who are non verbal Last summer she worked as a one on one aide in a Special needs class room for an Autistic child.. It would not be a waste of her time, just let her know what works for you guys
thereishope Posted June 3, 2012 Report Posted June 3, 2012 (edited) . Edited September 30, 2019 by Vickie
sosudden Posted June 3, 2012 Author Report Posted June 3, 2012 Topeka is not far from us! We live in the KC Metro area. I may see if she would like to email your DD17!! As I have said in previous posts - DD had IVIG on Feb 16th & 17th - many symptoms disappeared almost immediately, we did have the "flipping back the pages" (as Dr K calls it) over the past 3 months, but she continues to improve!! I would say her one true symptom that remains is the FEARFUL OCD THOUGHTS grrr!!! Ocassional rage-ish and racing thoughts, none of which was present prior to PANDAS, will appear but we/she is able to talk herself down. This crazy, weird disorder is just so strange!!! Soooo, maybe I will start with an email and maybe we could eventually get a few of us and kiddos together over the summer?
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