Need help truing to reach out to someone

[3boysmom]

Since Dr. L. diag. our ds10 in September with Sydenhym's Cohrea as well as PANDAS, I decided to google information about SC. When I googled Sydenhym's Cohrea, one of the choices was a you tube video titled "Sydenhym's Cohrea/aka St. Vitis Dance. I clicked on to watch the little girl and read pages of comments. I think the comments began a year ago and none of them mentioned PANDAS (however some made me wonder) The very last comment was dated 2 weeks ago by a person: southernlilly (?-something like that). She commented to the mom of the girl that her child also had the SC movements but wanted to know if that girl in the video had OCD, Emotional issues, anxiety....along with the movemnts (because southernlilly's child did)!!!

The mom of the girl in the video said "no". No one went back to that comment...I tried to answer and post a comment just in case she would see it but it said "posting error", so I joined You Tube and created an account...no luck! I tried to go into her pass name and send her a message, but I don't know if it worked. I am terrible at tech things and never even You Tube...can anyone help me get the word out to this person so that her child can get help and not suffer too long before she hears of PANDAS?! Also, it would be great to post a comment about this illness for all the other people clicking in to watch that video. I know this request is a bit "off the beaten path" but can't help thinking how lucky we were to finally get the correct diagnosis and on the correct path with only 6 life changing words..."Have you ever heard of PANDAS?"

 

 

Thanks in advance, Linda

Edited January 8, 2011 by 3boysmom

[browneyesmom]

I found her; I have an account on YouTube and I am emailing her now and linking her to this forum. Bless you, Linda... for reaching out to her. ♥

[kferricks]

You guys are awesome!

[browneyesmom]

Thanks, but our children are the awesome ones!

[3boysmom]

Thank you so much! I was losing sleep over the thouht of that child possibly going down the wrong path of diagnosis and not getting help and missing the chance to tell her because of my tech weakness!! I am so overwelmed dealing with this illness in my own boys, but just could not pass up the chance to help. I hope she comes here, because you all are also like that....dealing with so much yet always there with help for others.

THANK YOU, Linda

[browneyesmom]

Hi Linda... just got home from a 2 day break at the beach. I do not see an email from her - going to check YouTube as well - I've never emailed on there before, but it did send... not sure if it will notify her via email or not.

 

I too, am concerned for her and others struggling with this condition. I want to help any children/parents we can as it is not so well known... hopefully, she will either receive the message soon or a doctor will help guide them.