DD9 wants to talk to other kids with PANDAS

[pixiesmommy]

Is there anyone here who has a child who is recovered/recovering who would be willing to talk to her? She is 9 today and was pulled from school yesterday. Naturally, she doesn't fully understand the consequences of not being able to return to school or what is going on in her brain. She says she can't help it (and we believe her) and that no one understands and she wishes she could meet more kids like her.

 

I told her we would try to reach out and figure something out.

 

Ideas?

[thereishope]

Pen pals is a great idea. My son is 5 so he's too young for that, but if you can't find one on this fourm, I will gladly reach out to other groups for you. I think I know one girl that is around 8 or 9 and she's doing well now. I'll keep an eye if you get any responses.

[Ellen]

I am so sorry for what you are going through and I understand how difficult it is on everyone when you are in an acute crisis period and have to worry about everyone's safety. I believe my son, who is 13 and recovering but not recovered from PANDAS, would be willing to talk to her and offer support. Our son's case was extreme and he had to endure seven psychiatric hospitalizations over a six month time period before he began to improve over the last year through a combination of interventions including a gfcf diet and supplements, plasma exchange, and most recently, neurofeedback. He still has some significant OCD and focusing issues, but is much more stable and calm and more like his old self in many ways. He would probably be very open to talking to your daughter. I will speak to him about it after he gets home from school today and send you a personal message some time soon. Hang it there! I've been where you are and I know it will get better!

 

Ellen

 

 

Is there anyone here who has a child who is recovered/recovering who would be willing to talk to her? She is 9 today and was pulled from school yesterday. Naturally, she doesn't fully understand the consequences of not being able to return to school or what is going on in her brain. She says she can't help it (and we believe her) and that no one understands and she wishes she could meet more kids like her.

 

I told her we would try to reach out and figure something out.

 

Ideas?

[PANDAS_Denmark]

Is there anyone here who has a child who is recovered/recovering who would be willing to talk to her? She is 9 today and was pulled from school yesterday. Naturally, she doesn't fully understand the consequences of not being able to return to school or what is going on in her brain. She says she can't help it (and we believe her) and that no one understands and she wishes she could meet more kids like her.

 

I told her we would try to reach out and figure something out.

 

Ideas?

 

 

Hi Pixiesmommy -

 

I´ve just asked my almost 9 year old son if he was interesting in "talking" (that is writing since we life in Denmark) with your daughter - and he is more than willing ;-).

 

As he put it : "I will do whatever I can to help any kid with PANDAS !"

 

My son experienced his first PANDASepisode when 5 years old.

 

Every time he is infected or even exposed to strep or other bacterias/vira he has a symptom flare up, that is both OCD and tics.

 

I think he is amazingly good at both telling how he experience the PANDAS - and how he is fighting the PANDAS.

 

You are VERY wellcome to contact me, if your daughter is interested !

 

Wishing you and your daughter all the best !

 

Best regards -

PANDAS_Denmark

He is homeschooled very often, either due to "too many strep in the school" or due to his physical and/or psychological reactions when exposed

[mom md]

we are 8 weekd post PEX and doing pretty well. I know my son would love a penpal so let mne know and I will e-mail you our address or you can send me yours. I think it would be great for them to realize they are not alone.

[pmoreno]

Is there anyone here who has a child who is recovered/recovering who would be willing to talk to her? She is 9 today and was pulled from school yesterday. Naturally, she doesn't fully understand the consequences of not being able to return to school or what is going on in her brain. She says she can't help it (and we believe her) and that no one understands and she wishes she could meet more kids like her.

 

I told her we would try to reach out and figure something out.

 

Ideas?

 

I don't know how much Gaby would want to write in an e-mail - I think a complex topic like this would be hard for her to communicate about in writing, but she might want to talk about it over the phone - (she is also 9 and fairly well recovered at this point - if there are no setbacks around the corner). If you want to send me a personal message, you can give me your phone number or vice versa. Pat