intravenous antibiotics

[Pandamom777]

My daughter has had a yawning movement with her face that has been diagnosed as a tic, a seizure, dystonia (movement disorder). Every doc seems to have a different opinion. A diagnosis is complicated by her having a developmental disability and is non-verbal. Because of her disability, some docs feel it is just a behavior. Ugh!!!

 

After trying several medications, the movements quit suddenly after she was sedated for dental extractions. She was fine for 6 years, but now the movements are back and I'm trying to figure out what helped her. After seeing Beth Maloney discuss Saving Sammy, I looked back into my daughter's records and found a strep connection to when the movements initially began. I also have been reading about post strep antibodies being linked to movement disorders in addition to PANDAS.

 

My daughter was given phrophylactic antibiotics through an IV called Ancef during the dental surgery. Could this have helped? She has been sedated for procedures before, so I don't think anesthesia helped. She also had dental extractions before without a change in the openings.

 

I would appreciate any insight.

 

Sharon

[T_Mom]

Welcome--It sounds like you have certainly something worthwhile to look at in your d's case. I think your question is a good one and worth considering with a doctor willing to treat Pandas--

 

"After trying several medications, the movements quit suddenly after she was sedated for dental extractions....She was fine for 6 years, but now the movements are back and I'm trying to figure out what helped her. After seeing Beth Maloney discuss Saving Sammy, I looked back into my daughter's records and found a strep connection to when the movements initially began. I also have been reading about post strep antibodies being linked to movement disorders in addition to PANDAS.

 

My daughter was given phrophylactic antibiotics through an IV ...Could this have helped?

 

My Mother-in-law has dystonia which is believed to be an auto-immune issue. If you can make the connection to cessation of the movements with the administration of antibiotics--if it was me, I would ask the doctor if you might try a month of full-strength antibiotics to see if there is an effect--to give her some relief. Where are you located? Do you have a doctor willing to treat her?

All the best--

[coco]

Hi, I really do think there is something to IV antibiotics and there have been several threads here and there talking about it. When my dd was in the hospital 2 years ago for a horrrible upper respiratory infection she rec'd iv abx. By the time she was well enough to come home it seemed like all her symptoms disappeared for a good 4 months or so. However, we had no idea what Pandas was at the time nor that the the iv abx had anything to do with the wonderful stretch we were having. Looking back, we feel the dosage was high enough for long enough and directly into the bloodstream that she received tremendous relief from it. However, symptoms returned with a vengence with no proper follow-up abx or ivig or anything to continue the healing. I know Dr. B was willing to try iv abx as part of my dd's ongoing treatment, but Dr. K and he consulted and it was strongly recommended not to do iv abx and ivig at the same time as the abx would negatively affect the gamma. Now, it's not to say we could not add in iv abx perhaps a couple of weeks after ivig treatment, but we have not gotten to that point just yet.

[Pandamom777]

We live in Minnesota. I haven't found anyone yet with knowledge/experience with PANDAS. Does anyone have any suggestions of docs in Minnesota with expertise in this area?

Sharon

 

 

 

Welcome--It sounds like you have certainly something worthwhile to look at in your d's case. I think your question is a good one and worth considering with a doctor willing to treat Pandas--

 

"After trying several medications, the movements quit suddenly after she was sedated for dental extractions....She was fine for 6 years, but now the movements are back and I'm trying to figure out what helped her. After seeing Beth Maloney discuss Saving Sammy, I looked back into my daughter's records and found a strep connection to when the movements initially began. I also have been reading about post strep antibodies being linked to movement disorders in addition to PANDAS.

 

My daughter was given phrophylactic antibiotics through an IV ...Could this have helped?

 

My Mother-in-law has dystonia which is believed to be an auto-immune issue. If you can make the connection to cessation of the movements with the administration of antibiotics--if it was me, I would ask the doctor if you might try a month of full-strength antibiotics to see if there is an effect--to give her some relief. Where are you located? Do you have a doctor willing to treat her?

All the best--

[T_Mom]

We live in Minnesota. I haven't found anyone yet with knowledge/experience with PANDAS. Does anyone have any suggestions of docs in Minnesota with expertise in this area?

Sharon

 

 

Sharon--

 

Here is a thread by parents that lists doctors who have helped--in different states; you may have to travel. Once you have established someone who is knowledgeable they may be able to advise a doctor in your area-- It is worth a try.

 

http://www.latitudes.org/forums/index.php?showtopic=5023

 

I would also try:

 

www.pandasnetwork.org

 

and contact Beth Maloney via:

 

www.savingsammy.net

[PANDAS_Denmark]

My daughter has had a yawning movement with her face that has been diagnosed as a tic, a seizure, dystonia (movement disorder). Every doc seems to have a different opinion. A diagnosis is complicated by her having a developmental disability and is non-verbal. Because of her disability, some docs feel it is just a behavior. Ugh!!!

 

After trying several medications, the movements quit suddenly after she was sedated for dental extractions. She was fine for 6 years, but now the movements are back and I'm trying to figure out what helped her. After seeing Beth Maloney discuss Saving Sammy, I looked back into my daughter's records and found a strep connection to when the movements initially began. I also have been reading about post strep antibodies being linked to movement disorders in addition to PANDAS.

 

My daughter was given phrophylactic antibiotics through an IV called Ancef during the dental surgery. Could this have helped? She has been sedated for procedures before, so I don't think anesthesia helped. She also had dental extractions before without a change in the openings.

 

I would appreciate any insight.

 

Sharon

 

Hi Sharon -

 

So sorry to hear, that your daughter is suffering :-(.

 

My son (9 years old, diagnosed with PANDAS) was treated with intravenous antibiotics in 14 days when he was 5 as he had Acute Disseminated EncephaloMyelitis.

All of his tics and OCD went away in 24-48 hours -

 

Best wishes to you and your daughter -

PANDAS_Denmark