bubbasmom Posted October 1, 2009 Report Posted October 1, 2009 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!!!
fuelforall Posted October 1, 2009 Report Posted October 1, 2009 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!
bubbasmom Posted October 1, 2009 Author Report Posted October 1, 2009 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!
fuelforall Posted October 1, 2009 Report Posted October 1, 2009 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.
EAMom Posted October 1, 2009 Report Posted October 1, 2009 Is your son on antibiotics? Which one and what dose? That is really important. Have you been to www.pandasnetwork.org ?
thereishope Posted October 1, 2009 Report Posted October 1, 2009 Beth Maloney posted that she has a doc name in MO. Send her an email at info@savingsammy.net. She will gladly share it.
bubbasmom Posted October 1, 2009 Author Report Posted October 1, 2009 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 ?
EAMom Posted October 1, 2009 Report Posted October 1, 2009 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)?
ShaesMom Posted October 1, 2009 Report Posted October 1, 2009 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
peglem Posted October 1, 2009 Report Posted October 1, 2009 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...
Kinsella Posted October 2, 2009 Report Posted October 2, 2009 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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