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Posted

So as all of the parents of kids with PANDAS I'm in crisis mode. I need a doctor in the St. Louis area that can treat this NOW, not next week, not working around a doctor's schedule.

I see some of you posting about the fits of rage. My son weighs 130 pounds and is strong as an ox. During an episode he seems stronger. Do you know how hard it is for me to physically restrain him?? I know you all will think it is 'abusive' but in the end when its bad the only way for me to get him down to hold him is grab his hair. I don't pull just hold so he can't pull away. I can't stand it a minute longer!!! Plus my girls, I'm totally neglecting them. My husband has to work so I sit here on PANDAS watch all day. He can't go to school so here we sit.

 

HELP ME!!!

Posted

Yes that is here in St. Louis (we're all a bunch of suburbs here!) How is he connected to the guy in Illinois? I've heard of him too. We're just 4 hours from the other guy.

 

Tipu Sultan, M.D.

Environmental Health & Allergy

11585 West Florissant Ave.

Florissant, MO 63033

ph: 314-921-5600

fax: 314-921-8273

 

Is that anywhere near you? If not, my apologies and you better go to Illinois to the main guy!

Miroslav Kovacevic

http://www.webpediatrics.com/practice.html

 

Good luck!

Posted
Yes that is here in St. Louis (we're all a bunch of suburbs here!) How is he connected to the guy in Illinois? I've heard of him too. We're just 4 hours from the other guy.

 

Tipu Sultan, M.D.

Environmental Health & Allergy

11585 West Florissant Ave.

Florissant, MO 63033

ph: 314-921-5600

fax: 314-921-8273

 

Is that anywhere near you? If not, my apologies and you better go to Illinois to the main guy!

Miroslav Kovacevic

http://www.webpediatrics.com/practice.html

 

Good luck!

 

Sultan is a Defeat Autism Now doctor so it is likely he has familiarity with PANDAS. Call first, but Dr. K is probably your man. Gotta pay up either way.

Posted

Is your son on antibiotics? Which one and what dose? That is really important.

 

Have you been to www.pandasnetwork.org ?

Posted

My son at the moment is on Keflex because that's what worked two years ago. But last night I watched the video clip from Good Morning America 'Saving Sammy' and that mom said he must be on Augmentin. Of course my doctor is off today, so I can switch him until tomorrow. But my son wants to go back to school and i'm afraid to let him because if he has a 'fit of rage' at school I'm afraid they will put him in a facility. With the lack of education regarding PANDAS they put kids in a mental instution where they are separated from their family except one hour a week. How do I know? We went down that road 2 years ago. Not going to do that again!

 

Is your son on antibiotics? Which one and what dose? That is really important.

 

Have you been to www.pandasnetwork.org ?

Posted

Different PANDAS kids respond best to different antibioitics. A lot on this forum are on Azithromycin (gets intracellular strep and is immune modulating). Certain parts of the country have strains that are resistant to Azith, so those docs prefer not to use it. Augmentin (Dr. K. also likes Augmentin) would also be good to try if Kelfex isn't working anymore (did it help initially?). Other kids do well on amoxcillin or Keflex.

 

Is your son on Full-strength antibiotics? That is important too.

 

Was your son on Keflex for 2 years..or just when he has an exacerbation?

 

Have you tried adding on Ibuprofen (advil, motrin)?

Posted
So as all of the parents of kids with PANDAS I'm in crisis mode. I need a doctor in the St. Louis area that can treat this NOW, not next week, not working around a doctor's schedule.

I see some of you posting about the fits of rage. My son weighs 130 pounds and is strong as an ox. During an episode he seems stronger. Do you know how hard it is for me to physically restrain him?? I know you all will think it is 'abusive' but in the end when its bad the only way for me to get him down to hold him is grab his hair. I don't pull just hold so he can't pull away. I can't stand it a minute longer!!! Plus my girls, I'm totally neglecting them. My husband has to work so I sit here on PANDAS watch all day. He can't go to school so here we sit.

 

HELP ME!!!

 

Try calling some allergy/immunology offices as well. We are finding that a lot of these kids may have underlying immune issues and some of these Immunologists have treated Pandas patients.

 

Atkinson, John Patterson, MD

Division of Rheumatology

Center for Advanced Medicine

Medicine Multispecialty Center

Washington University School of Medicine

4921 Parkview Place, C, 5

St. Louis, MO 63110

Phone: 314-286-2635

Fax: 314-286-2338

 

Knutsen, Alan P., MD

Cardinal Glennon Children's Medical Center

Pediatric Research Institute

St. Louis University Health Sciences Center

1465 S. Grand Blvd

St. Louis, MO 63104

Phone: 314-268-4041

Fax: 314-577-5398

 

Referral Centers:

 

Cardinal Glennon Children's Medical Center

St. Louis University Health Sciences Center

1465 S. Grand Boulevard

St. Louis, MO 63104

United States

Phone: 314-577-5600

Fax: 314-577-5398

 

 

Center for Advanced Medicine

Washington University School of Medicine

Medicine Multispecialty Center

4921 Parkview Place, C, 5

St. Louis, MO 63110

United States

Phone: 314-286-2635

Fax: 314-286-2338

Posted

I don't have a doctor's name for you (really wish I did), but wanted to let you know that I don't think what you're doing is abusive. I have to hold my daughter's ponytail the same way and it doesn't always work. I FEEL abusive when I do that, but logically, I know I have to...there is no choice...

Posted

My child's psychologist when first diagnosed was Dr. Brooke Kraushaar, who is in the St. Louis area now. She's beyond wonderful in helping with OCD symptoms, and she was the first to flag the possibility of PANDAS for us. She might be able to help with the psych symptoms as well as point you in the direction of an MD who'll help.

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