pandas episodes

[michele]

Dr. Tanya Murphy has done a ton of research on PANDAS and treats PANDAS/tourettes patients. If you can get into see her I'd recommend her. Has anyone here seen Dr. K? His website seems a little commercialized to me. Dr. Murphy is a very professional Dr. psychiatrist at a Florida University Hospital. If you read PANDAS articles she is often sited for her research.

 

Michele

Thanks Sarah. I am not sure that your post was for me, but if it was, I have spoken with him before and Dr. K seems very knowledgeable on PANDAS and we are considering making the trip to Chicago. The problem is that my son seems to fit PANDAS- I think yet not sure. The titers are never elevated, he never tests positive or has signs of strep. He follows the course of no tics then extreme onset though. The cultures are also negative. I am just not sure he is PANDAS. Dr. K does not believe titers have to be elevated. He will probably be the next doctor we go to if my son keeps following the pattern.

[P_Mom]

We have been working with Dr. K for almost a year now. I have dealt with/spoken to many doctors (NIMH, Dr. Murphy, etc.) he has been the most helpful and is the best Dr. to see regarding PANDAS IMHO. I have also been in touch with several Moms who have taken her kids to him...their kids are doing phenominal. We have started to follow his recommendation for treatment this past month and my son is doing the best he has been doing in a year.

 

Kelly

[Megs_Mom]

Michele, How has everything gone for you with the Abilify? I am confused with the supplements, especially the doses as I am giving to a teen. I would love to stay natural, but every time I think I've got it right, and everything is great, the boat tips! Our doctor is actually recommending Paxil for the OCD. Did anyone recommend that for you (or did they ever recommend another SRRI) -- or do they not do that with little ones.

 

We have been pretty successful with Cognative Behavioral Therapy - here is a good link re this: http://brief-treatment.oxfordjournals.org/...amp;keytype=ref

 

Will not be solution for everyone - and very tough to do at first - but really helps keep emotions under control, and gives her some power over her symptoms. Her OCD usually lasts about 6 weeks, and is always very frightening at first, until we get the techniques back down. Would love additional advice. WE have not tried any meds yet -

[Pudgeo]

My sons titers were never very elevated so that's why he went undiagnosed for so long...If you read on Dr. K's website you do not always have to have elevated titers..Let me know if you make the trip to Chicago and what he says! What kind of treatment are you looking to do?

Sarah

[michele]

Kelly,

What does he recommend and what have you tried? Do you do phone consults or computer emails to him? Have you seen him in person? Is his services covered by your insurance? What improvements have you seen? Sorry for so many questions but I am really intrigued. I am so happy he has helped your boys!

 

Micele

We have been working with Dr. K for almost a year now. I have dealt with/spoken to many doctors (NIMH, Dr. Murphy, etc.) he has been the most helpful and is the best Dr. to see regarding PANDAS IMHO. I have also been in touch with several Moms who have taken her kids to him...their kids are doing phenominal. We have started to follow his recommendation for treatment this past month and my son is doing the best he has been doing in a year.

 

Kelly

[Indigo]

I see a decrease in her throat clearing too.

 

Is this considered a tic or part of PANDAS? I have noticed my dd does this a lot and wondered why.

[EAMom]

My daughter's PANDAS episode lasted 6 mo.

 

She had the FEVER the 3rd week of January (that was day her behavior changed). OCD/eating disorder finally went away mid. June, the tics were gone by the 3rd week in July (tics took longest to go away but they were a pretty minor part of her PANDAS.)

 

There was waxing and waning *within* her 6mo. episode. She had waxing/increase in symptoms (after tooth extractions in Feb. and early March and possible reinfection from her strep carrier sister in April) and waning/improvement (after hosp. in March for re-feeding/malnutrition and 10day course of Augmentin).

 

Azithromycin was started in early June...we believe that is what really cured her. She is still on Azithromycin 250mg/day and 10mg prozac (a little buffer in case she gets strep again...we don't want her to get the anorexia nervosa like that again.)

 

SSRI's did help with OCD/depression but did not really bring her back to normal...just helped with symptoms. SSRI did not help tics.

 

By the 3rd week of July her tics were gone...she has no signs of her PANDAS now. She has mild social anxiety (shyness) which she had before PANDAS. We have our daughter back now.

[EAMom]

My daughter's titers were also never elevated.

 

It's possible we missed "the peak" (titers were drawn at 2 mo. and 3mo. after January FEVER). It's also possible she is one of those kids who just has a low baseline (so perhaps they were elevated for her, but still in the "normal range"). They went down between the 1st (March) and 2nd (April) blood draw. Her throat culture was positve (as was her sisters) in March.

 

In other words, her titers were in the normal range despite a having had strep in her throat for what we think was 2mo.

 

Her titers in April (2nd set) were even lower ...her PANDAS was still going strong.

 

Some people mount a big antibody response to strep, some people don't. Some people keep there titers high for a long time, others have titers that drop off faster.

 

Also, I have heard you can't compare titers done at different labs...so if you are getting lots of titers make sure they are all getting sent to the same place.

[michele]

Which Dr. did you get to prescribe the azith? If you don't mind me asking, how did you convince them to try it? Had they tried other antibiotics first. Because none of the PANDAS researchers have documented its use for PANDAS I have not been able to ever find a Dr. willing to prescribe it. Just curious if you had any issues finding a Dr. to try it?

 

 

Michele

My daughter's PANDAS episode lasted 6 mo.

 

She had the FEVER the 3rd week of January (that was day her behavior changed). OCD/eating disorder finally went away mid. June, the tics were gone by the 3rd week in July (tics took longest to go away but they were a pretty minor part of her PANDAS.)

 

There was waxing and waning *within* her 6mo. episode. She had waxing/increase in symptoms (after tooth extractions in Feb. and early March and possible reinfection from her strep carrier sister in April) and waning/improvement (after hosp. in March for re-feeding/malnutrition and 10day course of Augmentin).

 

Azithromycin was started in early June...we believe that is what really cured her. She is still on Azithromycin 250mg/day and 10mg prozac (a little buffer in case she gets strep again...we don't want her to get the anorexia nervosa like that again.)

 

SSRI's did help with OCD/depression but did not really bring her back to normal...just helped with symptoms. SSRI did not help tics.

 

By the 3rd week of July her tics were gone...she has no signs of her PANDAS now. She has mild social anxiety (shyness) which she had before PANDAS. We have our daughter back now.

[EAMom]

We had been on:

 

1) Augmentin (in hosp/inpatient eating disorder clinic in March, x 10d, rx'd by pediatrician in hosp. at "parental insistance" (meaning my husband put his foot down) a couple of days before positive culture came back). The antibiotics were recommended by our psychiatrist (who wasn't techinically our psychiatrist at that point although my husband had talked to her on the phone). Psychiatrist wasn't part of the hospital staff (is in private practice) although she used to be associated with this hospital, so they at least knew who she was.

 

Younger sister was also put on Augmentin as she also tested positive (culture) for strep...we assume she is a carrier.

 

I actually think Augmentin helped somewhat...maybe she needed to be on it longer term? She was also re-fed (in hospital for Anorexia Nervosa/malnutrition) when she got the Augmentin and she was started on Lexapro (a SSRI) so it's a little unclear how much of the benefit was from the Augmentin vs. the Lexapro vs. getting calories into her.

 

2) after 10 days of Augmentin she was put on Amoxicillin (rx'd by psychiatrist as our reg. pediatrician stated didn't believe in ab prophalaxis for PANDAS which is completely ridiculous esp. since younger sister was a strep carrier and still postive at the time). She seemed to be doing okay for about 1 mo. (but definitely not "herself", still lots of OCD, eating issues, but much better than March). By the end of April symptoms were worsening but we also think she was having some "seratonin syndrome"/bad side effects from the Lexapro.

 

In April, Azithromycin finally cleared sister (who was still postive after Augmentin). We wonder if dd got re-infected in April (while on Amoxicillin) before sister's carrier state was cleared or if she was never cleared by Augmentin in the first place.

 

3) all heck broke lose in May...we took dd off of Lexapro due to concerns of side effects/akathesia/seratonin syndrome. Anorexia Nervosa came back in full force as SSRI levels dropped...so we started Prozac hoping she would handle that better (she did). In May she was barely eating (losing 1 pound a week...in low 40's) we decided to try Cefuroxime (a cephalosporin) x10 days... no improvement in symptoms...this was rx'd by ped. at outpatient eating disorder clinic (reluctantly), but was rec. by our psychiatrist who had talked to ENT (ear nose throat) doc who liked this med. for strep.

 

4) back to Amoxicillin...daughter still not doing well by end of May, eating disorder ped. wanted to re-hosp. due to problems with pulse rate.

 

4) early June my husband asked our reg ped. for Azithromycin (at that point we knew that it had cleared sister) rx. Husband said ped. would have rx'd 30 days but she didn't seem happy about it so he took rx for 5 days. When we thought we saw a bit of an improvement and decided to try a whole month we called psychiatrist (pediatrician was on vacation at that point) who happily complied.

 

I think our psychiatrist (even though she's an MD and legally is able to) was used to having pediatricians write the ab rx's for PANDAS kids. When she figured out the "battle of the reluctant pediatricians" was an issue she started writing them for us. (Maybe a bit of a turf thing...psychiatrist is in pediatrician's turf if she writes ab rx.?)...

 

It's bad enough having a kid sick with PANDAS without having to beg the pediatricians for antibiotics!

[bmom]

Thanks for the details. Did your daughter improve on the Amox. at all? My son has been on it for 6 weeks and although his symptoms have improved, he still has anxiety, separation anxiety, and tics. I am thinking of switching. I am not sure if I should wait it out and see if it resolves or go stronger.

[EAMom]

Re. why Azithormycin might work better than other antibiotics (eg amoxicillin, pennicillin). I recently learned that while strep is not techinically "resistant" to Penicillin, the strep can hide out intracellularly (inside cells) where most anbitiotics cannot reach it. Azithromycin can "get at" the strep if it is intracellular.

 

Azithromycin is also anti-inflamatory...so it may decrease some of the inflamation in PANDAS kid's brains (basal ganglia).

[EAMom]

Hi,

 

I just edited my 8:09 am post from today...check it out as well as my next post (10:02am) as to why Az. is better.

 

I would say that Amoxicillin didn't help us.

 

6 weeks is a long time....I would switch to Azithromycin.

 

I would also add on Advil for a few days while on Az...let me know if it helps. It seemed to help dd...maybe 20%?

 

I would give Azithromycin at least 1 mo. to see if it helps OCD. In my personal experience tics took longer to go away...more like 6-8 weeks.

 

My daughter had improved mood by day 3 of Azithromycin. By 10-14 days she decided she "wanted to get better" and started eating 3 meals a day plus snacks (in May there were days when she only ate 1 meal/day). By day 30 of Azithromycin she was very cheerful, 98% her old self but still had an "edginess" to her. I would say she was 100% after 60 days of Azithromycin...

 

We kept dd on Advil for about 2mo. straight (while on Azithromycin). Now she is just on Azithromycin 250mg and 10mg Prozac daily, plus multivit, and probiotic.

 

Have you checked other family members to make sure they are neg for strep (not carriers)?

[EAMom]

I would also have family members checked (throat cultures) periodically to make sure they aren't acting as strep carriers, infecting your PANDAS daughter.