Just need some support

[Kayanne]

I'm really sorry you are going through this...I'm praying for your family.

 

Perhaps a compromise on the Rifampin? Three of my kids were prescribed it for only 3 days. It was piggybacked onto the last 3 days of a 10 day treatment with other antibiotics. Two (non-PANDAS I think) were cleared of their strep, and my PANDAS daughter still had to to move onto Clindamycin.

 

I'm going by memory...but you have tried clindamycin already, right?

Edited September 27, 2010 by Kayanne

[peglem]

Hang in there, Peg - I've been so amazed and what you guys have accomplished. To me, you seem to have the patience of a saint and I always greatly admire the perspective in your posts. I'm glad that you come here for support.

 

 

I'm sorry if I'm off here, but is the deal that she was doing so great on rifampicin, but then had to go off for fear of its side effects? This is interesting to me because I had very aggressive PANDAS at Allie's age, as you know, until I was treated for TB and got two years of isoniazid and some period of something else that I couldn't remember the name of, but that Dr. T told me must have been rifampicin because isoniazid is apparently never prescribed for TB without rifampin. It was during that period of treatment that I finally managed to recover. I haven't heard much about other cases of use for PANDAS. I wonder if Allie might benefit from isoniazid, which like rifampin, works against mycobacteria? Do you know what infection you're fighting? I assume that she's been tested for TB - I didn't even know I had it until a routine prick test and then the follow-up that ensued. Interestingly, isoniazid also has been found to have antidepressant activity...but I don't know if that has to do with its antibacterial activity or something else.

 

I'm no expert on these drugs...just a thought.

Wow! That's amazing! And its interesting that you found that journal right at this time!

We used rifampin 2x, 1st a 10 day course, and 5 months later a 14 day course. She doesn't do great while on it, but afterwards she is wonderful for @ 3 months. I'm thinking that indicates a slow growing, intracellular bug. We don't know what infection we're fighting, and w/ monthly IVIG, its hard to test. She has not been tested for TB.

I have not heard of rifampin being used for PANDAS either, but I think it is used by lyme docs.

 

Your post got me thinking though, that we should be asking why the rifampin works so good for her. Thank you so much!

[peglem]

I'm really sorry you are going through this...I'm praying for your family.

 

Perhaps a compromise on the Rifampin? Three of my kids were prescribed it for only 3 days. It was piggybacked onto the last 3 days of a 10 day treatment with other antibiotics. Two (non-PANDAS I think) were cleared of their strep, and my PANDAS daughter still had to to move onto Clindamycin.

 

I'm going by memory...but you have tried clindamycin already, right?

We haven't used clindamycin. That's a great idea.

 

See, I knew you guys could get me going again! Thanks to all!

[momto2pandas]

Yes, particularly given what you describe, I would insist on getting at the question of why the rifampin works so well. Given that she doesn't do great while on it, but does really well afterwards, it suggests to me that it's not some sort of side effect of the drug (like an anti-inflammatory efffect); it's actually the impact that it's having on an infection. As I mentioned, rifampin works on a different category of infection than most of the drugs people take for PANDAS, but evidently that's the one that Allie needs help with (as was the case for me). So it makes sense to ask what else would work similarly that she might be able to take more consistently, or perhaps alternate with rifampin.

 

Some day I'll have to look more into the TB issue. I don't know if it's TB that was causing my problems, or if by treating the TB, I incidentally was treated for whatever else it was that was causing the problems (either directly via the antibiotics or because my broken-down immune system finally got a break). I never had obvious severe TB symptoms. I was really skinny (but of course I was anorexic), and I was tired a lot, unwell, sick...but nothing that screamed TB. Then once I had the positive prick test, they took a chest X-ray, and what do you know, I had TB. If I hadn't had that routine prick test, I don't know how long it would have been before someone had done a CXR and figured out that I was actually physically ill, not just mentally.

[peglem]

Yes, particularly given what you describe, I would insist on getting at the question of why the rifampin works so well. Given that she doesn't do great while on it, but does really well afterwards, it suggests to me that it's not some sort of side effect of the drug (like an anti-inflammatory efffect); it's actually the impact that it's having on an infection. As I mentioned, rifampin works on a different category of infection than most of the drugs people take for PANDAS, but evidently that's the one that Allie needs help with (as was the case for me). So it makes sense to ask what else would work similarly that she might be able to take more consistently, or perhaps alternate with rifampin.

 

Some day I'll have to look more into the TB issue. I don't know if it's TB that was causing my problems, or if by treating the TB, I incidentally was treated for whatever else it was that was causing the problems (either directly via the antibiotics or because my broken-down immune system finally got a break). I never had obvious severe TB symptoms. I was really skinny (but of course I was anorexic), and I was tired a lot, unwell, sick...but nothing that screamed TB. Then once I had the positive prick test, they took a chest X-ray, and what do you know, I had TB. If I hadn't had that routine prick test, I don't know how long it would have been before someone had done a CXR and figured out that I was actually physically ill, not just mentally.

From what I read so far, lots of people are harboring TB and it only becomes symptomatic and full blown when the immune system is compromised. The symptoms are pretty non specific until it gets so bad that you're coughing up blood. But also, TB is in the family of mycobacteria.

[Kayanne]

I'm really sorry you are going through this...I'm praying for your family.

 

Perhaps a compromise on the Rifampin? Three of my kids were prescribed it for only 3 days. It was piggybacked onto the last 3 days of a 10 day treatment with other antibiotics. Two (non-PANDAS I think) were cleared of their strep, and my PANDAS daughter still had to to move onto Clindamycin.

 

I'm going by memory...but you have tried clindamycin already, right?

We haven't used clindamycin. That's a great idea.

 

See, I knew you guys could get me going again! Thanks to all!

 

Peg, my daughter was 6yrs old and about 42 lbs, and she was prescribed 300mg 3x/day for 10 days--that is a high end dose for adults with serious infections. I have googled in the past, and found that Clindamycin is anti-inflammatory...and one site I read said that it acts like a macrolide at higher doses -- but I have not been able to find it again. I'll try to look for it.

 

Also, when I found J. Zulli's website (e-pandas.com)last year -- she had posted that when her daughter got PANDAS, she needed 1 month of clindamycin. But I have been back since then, and it is no longer there (she last revised it Aug '09 -- I found it in May '09).

[peglem]

I'm really sorry you are going through this...I'm praying for your family.

 

Perhaps a compromise on the Rifampin? Three of my kids were prescribed it for only 3 days. It was piggybacked onto the last 3 days of a 10 day treatment with other antibiotics. Two (non-PANDAS I think) were cleared of their strep, and my PANDAS daughter still had to to move onto Clindamycin.

 

I'm going by memory...but you have tried clindamycin already, right?

We haven't used clindamycin. That's a great idea.

 

See, I knew you guys could get me going again! Thanks to all!

 

 

Peg, my daughter was 6yrs old and about 42 lbs, and she was prescribed 300mg 3x/day for 10 days--that is a high end dose for adults with serious infections. I have googled in the past, and found that Clindamycin is anti-inflammatory...and one site I read said that it acts like a macrolide at higher doses -- but I have not been able to find it again. I'll try to look for it.

 

Also, when I found J. Zulli's website (e-pandas.com)last year -- she had posted that when her daughter got PANDAS, she needed 1 month of clindamycin. But I have been back since then, and it is no longer there (she last revised it Aug '09 -- I found it in May '09).

She's on a macrolide- zith, and has been for a long time. We took her off, only for the course of the rifampin and then continued it. Clindamycin is biaxin, right?

Edited September 27, 2010 by peglem

[Kayanne]

I'm really sorry you are going through this...I'm praying for your family.

 

Perhaps a compromise on the Rifampin? Three of my kids were prescribed it for only 3 days. It was piggybacked onto the last 3 days of a 10 day treatment with other antibiotics. Two (non-PANDAS I think) were cleared of their strep, and my PANDAS daughter still had to to move onto Clindamycin.

 

I'm going by memory...but you have tried clindamycin already, right?

We haven't used clindamycin. That's a great idea.

 

See, I knew you guys could get me going again! Thanks to all!

 

 

Peg, my daughter was 6yrs old and about 42 lbs, and she was prescribed 300mg 3x/day for 10 days--that is a high end dose for adults with serious infections. I have googled in the past, and found that Clindamycin is anti-inflammatory...and one site I read said that it acts like a macrolide at higher doses -- but I have not been able to find it again. I'll try to look for it.

 

Also, when I found J. Zulli's website (e-pandas.com)last year -- she had posted that when her daughter got PANDAS, she needed 1 month of clindamycin. But I have been back since then, and it is no longer there (she last revised it Aug '09 -- I found it in May '09).

She's on a macrolide- zith, and has been for a long time. We took her off, only for the course of the rifampin and then continued it. Clindamycin is biaxin, right?

No, Biaxin is Clarithromycin -- that is a macrolide. Clindamycin is Cleocin...some places I have read that it is a macrolide, and others I have read that it is a lincosamide. Perhaps lincosamides are a subset of macrolides? I don't know. Here is a wiki link to lincosamides:

 

http://en.wikipedia.org/wiki/Lincosamides

[peglem]

Thanks, Karen- I got them mixed up because they both start with "C".

 

From that Wikipedia site:

They are used in the treatment of Toxic Shock Syndrome and thought to directly block the M protein production that leads to the severe inflammatory response.

Isn't the M protein involved in PANDAS antibodies production? Hmmm.

[Kayanne]

Thanks, Karen- I got them mixed up because they both start with "C".

 

From that Wikipedia site:

They are used in the treatment of Toxic Shock Syndrome and thought to directly block the M protein production that leads to the severe inflammatory response.

Isn't the M protein involved in PANDAS antibodies production? Hmmm.

I know the M proteins from some strep strains are involved in RF...but have they gotten that far with PANDAS and M-typing? Honestly, I do hear "M-protein" and the bells ring in my head, but I don't understand it much.

[peglem]

Thanks, Karen- I got them mixed up because they both start with "C".

 

From that Wikipedia site:

They are used in the treatment of Toxic Shock Syndrome and thought to directly block the M protein production that leads to the severe inflammatory response.

Isn't the M protein involved in PANDAS antibodies production? Hmmm.

I know the M proteins from some strep strains are involved in RF...but have they gotten that far with PANDAS and M-typing? Honestly, I do hear "M-protein" and the bells ring in my head, but I don't understand it much.

Yeah, guess I need to go back and look at the Cunningham studies again. I seem to remember that it was antigens to the M proteins involved in molecular mimicry. I kinda glossed over that point because I don't understand it either.

[peglem]

Thanks, Karen- I got them mixed up because they both start with "C".

 

From that Wikipedia site:

They are used in the treatment of Toxic Shock Syndrome and thought to directly block the M protein production that leads to the severe inflammatory response.

Isn't the M protein involved in PANDAS antibodies production? Hmmm.

Okay, from the Mouse Model paper: Bolding mine.

http://www.nature.com/mp/journal/v15/n7/abs/mp200977a.html

Abstract

 

Streptococcal infections can induce obsessive-compulsive and tic disorders. In children, this syndrome, frequently associated with disturbances in attention, learning and mood, has been designated pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS). Autoantibodies recognizing central nervous system (CNS) epitopes are found in sera of most PANDAS subjects, but may not be unique to this neuropsychiatric subset. In support of a humoral immune mechanism, clinical improvement often follows plasmapheresis or intravenous immunoglobulin. We recently described a PANDAS mouse model wherein repetitive behaviors correlate with peripheral anti-CNS antibodies and immune deposits in brain following streptococcal immunization. These antibodies are directed against group A β-hemolytic streptococcus matrix (M) protein and cross-react with molecular targets complement C4 protein and α-2-macroglobulin in brain.

[peglem]

So, last night Allie was sticking her fingers in her mouth and acting like her teeth/jaw hurt. So got her in to the dentist this morning who took a quick looksee- on the floor in the hallway, where she dropped, refusing to enter the exam room. Apparently there is some swelling (he thinks not a cavity) from at least one of her 12yo molars that hasn't come in yet. ???? Last October at the outset of a big exacerbation, she was having dental problems because, the dentist said, all 4 of her 12yo molars were coming in at the same time. Still not out, a YEAR later? Now wondering if this is causing all the recent problems and I owe her pediatrician a big apology!

[tired mom]

So, last night Allie was sticking her fingers in her mouth and acting like her teeth/jaw hurt. So got her in to the dentist this morning who took a quick looksee- on the floor in the hallway, where she dropped, refusing to enter the exam room. Apparently there is some swelling (he thinks not a cavity) from at least one of her 12yo molars that hasn't come in yet. ???? Last October at the outset of a big exacerbation, she was having dental problems because, the dentist said, all 4 of her 12yo molars were coming in at the same time. Still not out, a YEAR later? Now wondering if this is causing all the recent problems and I owe her pediatrician a big apology!

I had the same problem when my daughter was 15. In her case we learned that she did not have a second set of molars(all 4). Her baby molars are in perfect condition with a strong root and she will not lose them because there is nothing above them to lossen them. This is the reason her 12 year molars were painful when they came in. The baby molars are actually bigger then the permanent ones, leaving less room for the 12 year molars and no room at all for wisdom teeth. Just a thought as to why they are taking so long to come in.

Edited September 29, 2010 by tired mom

[peglem]

Yes, particularly given what you describe, I would insist on getting at the question of why the rifampin works so well. Given that she doesn't do great while on it, but does really well afterwards, it suggests to me that it's not some sort of side effect of the drug (like an anti-inflammatory efffect); it's actually the impact that it's having on an infection. As I mentioned, rifampin works on a different category of infection than most of the drugs people take for PANDAS, but evidently that's the one that Allie needs help with (as was the case for me). So it makes sense to ask what else would work similarly that she might be able to take more consistently, or perhaps alternate with rifampin.

 

Some day I'll have to look more into the TB issue. I don't know if it's TB that was causing my problems, or if by treating the TB, I incidentally was treated for whatever else it was that was causing the problems (either directly via the antibiotics or because my broken-down immune system finally got a break). I never had obvious severe TB symptoms. I was really skinny (but of course I was anorexic), and I was tired a lot, unwell, sick...but nothing that screamed TB. Then once I had the positive prick test, they took a chest X-ray, and what do you know, I had TB. If I hadn't had that routine prick test, I don't know how long it would have been before someone had done a CXR and figured out that I was actually physically ill, not just mentally.

Discussed this with the pediatrician today. He did a TB test (will check on Wednesday afternoon) and ordered a chest x-ray. That should be fun- x-ray machines scare her.