How did I miss this PANDAS link?

[3boysmom]

As much as I have searched Google and Bing, I never saw this link. Was just shared with me by another PANDAS mom that I discovered lives 10 minutes away! What is happening in Texas? ( i think that the girl in this story is also from Texas. (not sure) Her onset of illness story is almost EXACT like our's. Just change the names and there you have it.

 

http://e-pandas.com/

Edited July 23, 2010 by 3boysmom

[lss]

This young girl has recently graduated from high school and is fully recovered. I beleive she was one of Swedo's original 50 patients.

[KaraM]

I never saw that one either. When did it go up? I just checked out her links. Could you suggest she add a link to this forum and to the OCD and Parenting group?

 

(I guess I could, but since you have a dialog going already it may work better.)

As much as I have searched Google and Bing, I never saw this link. Was just shared with me by another PANDAS mom that I discovered lives 10 minutes away! What is happening in Texas? ( i think that the girl in this story is also from Texas. (not sure) Her unset of illness story is almost EXACT like our's. Just change the names and there you have it.

 

http://e-pandas.com/

[3boysmom]

.Actually, I have never contacted this lady and just saw the website 5 minutes before posting it here. I heard about it because my teacher's assistant was at a yard sale 10 minutes from my house and the home owner (not the family in the website) said she was down sizing due to a stupid illness from strep! My teacher friend asked "PANDAS?"

and the owner almost fell over. My teacher's assistant told her about us and the lady called me. Her son did IVIG with Dr. K 3 years ago and the son is now 15. He is much better than he was 3 years ago but got sick a few months after IVIG and he had a relapse. He continues to struggle and is on many different medications. His older brother is in college and plans on becoming a doctor. Maybe the family members, PANDAS children themselves, or siblings will be the ones to conquer this illness in the future! I will meet her when we have our first support group at the end of the month. (We began with 2 people meeting and sadly our little group is growing at an alarming rate and we have not even met or advertized yet!) So far it has all been freak chance meetings or divine powers connecting us. Anyway the home owner did not have blogs or websites to help her 3 years ago, but did find this link that I posted earlier and that lady from the website was her "angel"

 

Don't mean to sound confusing (trying not to use names). The girl in the website link did Plas...(PEX) through Dr. Swedo's study. She got much better until she got a vaccination and then she did not get better with the second PEX. I did see that they battled with many things for 8 years but she is well now and on NO medicines! I do want to know how they eventually got her well. I do want to contact her but we leave for vacation in the morning. How do you type on this forum from an Iphone? I think I will post that question.

Edited July 23, 2010 by 3boysmom

[momaine]

There is an awful lot on that web site that goes against all of the things we discuss here as truths. I hope it doesn't do more harm than good.

Angela

[3boysmom]

There is an awful lot on that web site that goes against all of the things we discuss here as truths. I hope it doesn't do more harm than good.

Angela

 

 

But it is just another story of hope. A great out come in the long run. We always wonder what happened to those kids in Swedo's study and it is just her story.