Support group wisconsin

[marmcglynn]

I can't find a support group near milwaukee? We have two PANDAS kids (6 &9 both symptomatic for over two years). I feel completely alone and depleted. Could really use some connection with people experiencing the same frustrations! Can't afford my own counseling when kids require private tutoring, OT, and still paying off IVIG 😜. Help please...

[ryan]

I can absolutely relate. We discovered both my children had PANDAS about 8 years ago, after years of trying to figure out why my Sons OCD and my daughter's tourettes would appear, seemingly out of no where, last about 3 months and then go away. With the OCD and Tourettes we had ADHD, dysgraphia, sleep, sensory and digestive issues and more. Around the same time we learned about PANDAS my daughter was also diagnosed with lymes. While we continued to read everything we could about both these issues, it was quite difficult to get any physician to support us. Once we learned what they had was PANDAS, as soon as our daughters next tourettes bout began, we took her in to see the pediatrician and pleaded with her to try a shot of penicillin. Within 3 hours all of her tourette symptoms stopped. From that point forward, everytime she had an outbreak we would take her in, re-plead out case and get her a shot. Each time the tourette symptoms would stop within in 3 hours (vs the 3 months when we didn't know she had PANDAS) Unfortunately for our Son, we were never able to convince a pediatrician to do this, despite the fact that his symptoms came and went in the same fashion as our daughters. Tired of managing in this way my husband and I attended the Midwest PANDAs meeting 2 years ago last summer in the hopes of finding a PANDAS friendly physician willing to treat both our kids. We found one, but she was in St. Louis.

 

For almost 2 years she has successfully treated both of my kids. Placing them both on a prophylactic course of penicillin to stay off strep and after a series of bloodwork, stool and urine tests began to treat & improve many nutrient deficiencies, immune and food challenges. Neither of my children have had a PANDAS outbreak since beginning treatment with her.

 

She is now leaving her practice (as I noted in another post today) and provided us some perspective regarding locating a physician who could pick up where she will be ending. The sites she suggested we search for a new physician are as follows:

 

http://www.pandasnetwork.org/research-resources/us-providers/

 

http://www.medmaps.org/clinician-directory/

 

http://ilads.org/ilads_media/physician-referral/

 

In case you have not seen the other post I answered, we came up with the following list of M.D.'s to consider:

 

WISCONSIN

Dr. Kyle Van Dyke M.D., Edgarton, WI -- Listed on PANDAS directory

http://www.wisconsinhyperbarics.com/kylevan.html

 

IOWA

Dr. Jon Ahrendsen, MD, Clarion, Iowa -- Listed on MedMaps & PANDAS directories

http://www.iowaspecialtyhospital.com/doctors/jon-ahrendsen/

 

ILLINOIS

Dr. Anju Usman M.D., Naperville, IL -- Listed on MedMaps & PANDAS directories

http://www.truehealthmedical.com/the-practice

Dr. Miroslav Kovacevic M.D., Hinsdale, IL -- Listed on PANDAS directory

http://webpediatrics.com/practice.html

 

Dr. Donald Raden M.D., Highland Park, IL -- Listed on MedMaps directory

chicagointegrative.com

http://www.chicagointegrative.com/raden_bio.html

 

Dr. Georgia Davis M.D., Springfield, IL -- Listed on MedMaps directory

http://www.georgiadavismdspringfieldil.com/

 

Dr. Lisa D. Crutcher M.D., Sycamore, IL -- Listed on MedMaps directory

http://rmg.nm.org/find-a-doctor/find-a-doctor-profile?id=2549

 

OHIO

Dr. Phillipp DiMio, Cleveland & Columbus Ohio areas -- ILADS Physician,

Our St. Louis M.D.shared: "I am a fan of Dr. Phillip DeMio MD in Ohio who is, leader in ILADS, and takes a very functional/integrative approach like me, only has been doing it longer.”

www.drdemio.com

 

I know this is all so daunting, but with the right support life can become so much easier. Things improved in all ways once we aligned with a PANDAS/Lyme knowledgeable physician. As an aside, the physician we are sadly leaving has a daughter with autism and PANDAS and the new physician we are aligning with has a child with Autism. In our experience, whenever one of our physicians or healthcare providers have had a loved one with a challenging condition they seem to push and identify approaches far more impactful then the standard M.D. My two kids are now a sophmore and a junior in college and educationally are thriving. Hang in there!

 

. . . I live in Appleton, WI