Help!

[putting together the piece]

Our ds is flipping back and forth emotionally really fast. Also dealing with "voices" or intrusive thoughts of SI and HI.

TSS is calling crisis. Is there a hospital that can handle PANDAS? I don't want Psych. drugs for him he needs abx. protocol maybe IVIG or steroids.

Is there anywhere in eastern central Pa. that can handle this?

[MomWithOCDSon]

Most ERs and hospitals neither understand PANDAS nor have a protocol for it. Unfortunately, I've only heard horror stories from going through a standard or ER admissions process, no matter where it was. If you do not have a doctor who will actually admit your child and call the treatment shots, unless your safety or the safety of your DS is in eminent danger, I would avoid the ER as it is very likely a straight shot to the psych ward and psych drugs.

 

Do you have abx in the house? If so, start dosing your child. Do you have a doctor who will prescribe abx or a refill? Call them, call their answering service, get that prescription and fill it pronto. Dose ibuprofen. Maybe try an antihistamine and/or melatonin to slow his brain down in the meantime.

 

I'm sorry you're going through this, and I wish I had more positive feedback for you. Perhaps someone from your area will yet chime in with a more positive response and be able to direct you to a hospital that will, in fact, help you.

 

Hang in there!

[Kathy4Him]

Something I have personally tried, more for anxiety but works fairly quickly is Lemon Balm. Bought it at Whole Foods brand is New Chapter: Lemon Balm Force. It may help to calm him down. I found it works in about 30 minute. Have not used for my DS but for myself so I know it helps.

[putting together the piece]

Most ERs and hospitals neither understand PANDAS nor have a protocol for it. Unfortunately, I've only heard horror stories from going through a standard or ER admissions process, no matter where it was. If you do not have a doctor who will actually admit your child and call the treatment shots, unless your safety or the safety of your DS is in eminent danger, I would avoid the ER as it is very likely a straight shot to the psych ward and psych drugs.

 

Do you have abx in the house? If so, start dosing your child. Do you have a doctor who will prescribe abx or a refill? Call them, call their answering service, get that prescription and fill it pronto. Dose ibuprofen. Maybe try an antihistamine and/or melatonin to slow his brain down in the meantime.

 

I'm sorry you're going through this, and I wish I had more positive feedback for you. Perhaps someone from your area will yet chime in with a more positive response and be able to direct you to a hospital that will, in fact, help you.

 

Hang in there!

[putting together the piece]

Thank you Nancy,

Crisis didn't want to assist when I said it was a medical issue with neuro-psychiatric symptoms. They practically said "best of luck and good bye".

I will take him tomorrow for a medical eval at an ER that may have some enlightened doctors. Right now he is resting, gave him some melatonin which will help him drift off. As long as he is safe I am happy to try to find a better option in the morning. Can't wait too long though he is definitely destabilizing overall.

[putting together the piece]

Something I have personally tried, more for anxiety but works fairly quickly is Lemon Balm. Bought it at Whole Foods brand is New Chapter: Lemon Balm Force. It may help to calm him down. I found it works in about 30 minute. Have not used for my DS but for myself so I know it helps.

[putting together the piece]

Lemon Balm Force. I have never heard of that before but I will check it out. Thanks.

[tpotter]

Our ds is flipping back and forth emotionally really fast. Also dealing with "voices" or intrusive thoughts of SI and HI.

TSS is calling crisis. Is there a hospital that can handle PANDAS? I don't want Psych. drugs for him he needs abx. protocol maybe IVIG or steroids.

Is there anywhere in eastern central Pa. that can handle this?

 

 

PM me the ER. I'll let you know if I know to stay away. One place for sure to stay away from is CHOP. They deny PANS exists, and will dx all with conversion disorder.

 

I'm going to PM you the name of a good doc in the area (hopefully close enough for your.)

 

I would suggest that you go in and ask to have tests done for:

 

Strep

Staph

Mycoplasma Pneumonia (walking pneumonia...very common, and causes mood swings/rages, but rarely tested)

 

I would suspect there may be other things, too, like viruses (did she recently get any viruses, immunizations that may have been given while she was sick?) Did you see any evidence of lyme (like the bullseye rash that only shows up in about 30% of people.) Does your DS have stretch marks anywhere on her body (that tend to look like cat scratches, and/or are very dark reddish/purple). These may be bartonella, which is a tic-borne disease, like lyme, but causes severe mood swings and rages.

[mdmom]

Putting together....

 

Read your inbox - I sent you a personal message.

[philamom]

Maybe Doylestown Hospital in Bucks County, Pa?? I remember seeing it mentioned on a hospital list that recognizes PANDAS. I think by Beth Maloney (Saving Sammy).

 

Sending prayers

[philamom]

I'm trying to locate that list of hospitals that acknowledge/treat PANDAS. I'm pretty sure it was in one of Beth Maloney's mass emails. Does anyone else have a copy?

[philamom]

Found it:

 

 

Parent Recommended Hospitals for Treatment of

 

PANDAS/PANS

 

** cautious or mixed recommendations

 

 

 

 

 

 

 

Arizona

 

Phoenix – Phoenix Children’s Hospital (Dr Spikerman)

 

 

 

 

California

 

Palo Alto – Lucile Packard Children’s Hospital

 

 

 

 

Iowa

 

Des Moines – **Blank Children’s Hospital

 

 

 

 

Maryland

 

Baltimore – Sinai Hospital (Dr. Shafrir)

 

 

 

 

Massachusetts

 

Boston – Massachusetts General Hospital

 

 

 

 

Minnesota

 

St. Paul – **Children’s St. Paul Pediatric Hospital

 

 

 

 

New Jersey

 

Newark – University of Medicine and Dentistry of New Jersey (UMDNJ) (immunology)

 

 

 

 

North Carolina

 

Winston-Salem – Brenner Children’s Hospital

 

 

 

 

Oregon

 

Portland – Randall Children’s Hospital at Legacy Emanuel

 

 

 

 

Pennsylvania

 

Doylestown – Doylestown Hospital

 

Horsham – Foundations Clinic

 

Pittsburgh – **Children’s Hospital of Pittsburgh

 

 

 

 

South Dakota

 

Sioux Falls – Sanford Children’s Hospital

 

 

 

 

Tennessee

 

Memphis – Le Bonheur Children’s Hospital (Dr. Kathryn McVicar)

 

 

 

 

Utah

 

Salt Lake City – Primary Children’s Medical Center

 

 

 

 

Washington

 

Kirkland – Evergreen Hospital Medical Center (Dr. Cynthia Keller)

 

 

 

 

Washington, DC

 

Georgetown University Hospital

 

 

 

 

Wisconsin

 

Oconomowoc – Rogers Memorial Hospital