Michigan PANDAS support group

[wornoutmom]

Hope this is ok to post here! I just wanted to share that we've started an email loop for PANDAS parents in Michigan, with the hopes of sharing information and support about local doctors etc and hopefully finding a way to all get together someday soon. Heck, maybe someday we will change the landscape of PANDAS here in this state! So if there is anyone on the forum I have NOT emailed that is from Michigan (or nearby), please feel free to PM me to be added to the loop.

 

-Rachel

[Mary M]

Bump-I don't want to miss anyone if this gets too far back. Personally, I know I am not on the forum daily right now so I want this to stay in the top page for a little bit.

Thank you,

Mary

[EAMom]

bump

[kengela]

Hope this is ok to post here! I just wanted to share that we've started an email loop for PANDAS parents in Michigan, with the hopes of sharing information and support about local doctors etc and hopefully finding a way to all get together someday soon. Heck, maybe someday we will change the landscape of PANDAS here in this state! So if there is anyone on the forum I have NOT emailed that is from Michigan (or nearby), please feel free to PM me to be added to the loop.

 

-Rachel

Hi this is so good to hear! Even though I must admit that Im embarrassingly computer/techno illiterate and I dont really even know what "Email loop" means, it sound like something I dont want to be left out of-Its good to be "in the loop" right? so add me in! I tried to PM you but it wouldnt go through-you can PM me if you need to. It will be so nice to connect with other families in the state, I have been noticing all the other Michiganders on here lately,so glad you are doing this for us. Angela

Edited April 5, 2011 by kengela

[EAMom]

Hope this is ok to post here! I just wanted to share that we've started an email loop for PANDAS parents in Michigan, with the hopes of sharing information and support about local doctors etc and hopefully finding a way to all get together someday soon. Heck, maybe someday we will change the landscape of PANDAS here in this state! So if there is anyone on the forum I have NOT emailed that is from Michigan (or nearby), please feel free to PM me to be added to the loop.

 

-Rachel

Hi this is so good to hear! Even though I must admit that Im embarrassingly computer/techno illiterate and I dont really even know what "Email loop" means, it sound like something I dont want to be left out of-Its good to be "in the loop" right? so add me in! I tried to PM you but it wouldnt go through-you can PM me if you need to. It will be so nice to connect with other families in the state, I have been noticing all the other Michiganders on here lately,so glad you are doing this for us. Angela

 

hi angela,

you might try Worried Dad...I think he's in Michigan too and can maybe help you get into the e-mail loop

[ekgmom]

Add me please!!!!

Trying desperately to find a doctor right now who will treat my son!

Thanks!

Cathy

[wornoutmom]

Angela and Cathy:

So So sorry I didn't catch this post earlier!! I had been on vacation that first week in April with no wifi, so lost a week of posts and this got buried until I was looking farther back somemore tonightand came across the thread. I have PMd you some more info!!

-Rachel

[kelwendling]

Could anyone give me direction on where to start for my son...he is 6 and is showing definite signs of pandas.. where do I go or see for this here in MI?? thanks so much!

[lln121]

I am a parent who has a son who underwent the ivig treatment for pandas. I am looking for a dr. In Michigan who knows anything about pandas and how to monitor him. Any suggestions?

[nicklemama]

I sent you a pm. To check your messages, go up to the right hand corner of the page.

[LookingForAssistanceMOM]

nicklemama and lln121 -

 

I am hoping one of you can help me. I live n Michgian and have recently been working with a Pshcologist who suggested I look into PANDAS sysndrom for my son. I would like to find a pediatrician that is familiar and has worked with patients. Your posts above have given me so hope. Can you help me?

 

Thank you!

[nicklemama]

Look at the pm I just sent you. You can read it by clicking in the upper top right hand corner of this page.

[daymerelf]

My 5 year old son has recently developed many symptoms consistent with PANDAS/PANS. He has frequent vocal and complex motor tics that are affecting daily activities. Frequent urination. More frequent nightmares. Dysgraphia. I could go on, but I really just need a referral to a provider who can wade through this with me and help figure out what is going on with my little dude. The stress of feeling helpless to find the right resources is really awful. We live in southeast MI. Any suggestions would be greatly appreciated, as he is starting KG in the fall and I want to get him as much help as possible, before that. Thank you!!!

[CastleDad]

My 4 year old daughter recently developed very similar symptoms to those described by daymerelf. We are currently getting the runaround with doctors and hospitals despite our everyday lives being turned upside down. Any suggestions for doctors in MI who are familiar with this condition would be greatly appreciated. Thank you!!!

[MamaDMK]

Could I be added to any Michigan email loop, or group, too please?

I'm in the Metro Detroit area and have an unofficially diagnosed, (yet highly suspected by our Behavioral Therapist) 7 year old son. I could use some support and probably advice on our next step.

Thank you!