PLEASE HELP ....PANDAS

[madhu]

Hi all,

I am still new to this PANDAS thing. Will someone please help me....

My son had strep 2 months back and started having TICS and frquent urination 3 weeks after strep. Even though his current cultures are negative,

after reading this forum, I started my son on zithromax 250mg once daily. After 5-6 days his tics and ocd reduced. After 10 days I stopped. His tics are coming back.

What does this mean?

 

How did it help reduce the tics ...I thought it was only for preventing future strep infections? Will it help reduce the autoantibodies... or

Is it helping with the strep still hiding in his body?

How long are you all doing the antibiotics....it is scary because he also has high yeast markers as per his OAT test.

how long should I do it daily before doing it weekly?

Has anyone done tonsillectomy and seen improvements in TICS/OCD?

 

I have read a lot about DIANA POHLMAN...does anyone have her phone # to contact.

IS doing the IVIG locally the same as doing it with Dr K. IS there anything specific the Dr K uses that maynot be known to local DAN doctors?

 

Thanks for this wonderful forum and the members,

madhu.

[thereishope]

The only thing I can give insight too is the tonsillectomy part. My son had t and a surgey after his first two strep and PANDAS cases to try to prevent strep. Well, one month after after the surgery, he caught strep again. The ENT said it was just bad luck. I just love that medical diagnosis...bad luck. Anyway, he was recovered from his PANDAS symptoms at the time of surgery w/ no OCD. However, when he caught strep for the third time after surgery, OCD resurfaced and this time it seems to want to stay. I think the OCD is staying because he had strep and OCD symptoms related to PANDAS for so long because of strep 3 times in 6 months.

 

Anyway...I know that NIMH does not recommend having tonsils out just because of PANDAS diagnosis. But I do not regret our decison. The ENT had seen PANDAS patients before and he stood behind having them removed. I see it this way. We will never know how many times the t and a surgery will prevent him from strep. There's no way of knowing that. The nurses in the recovery room did tell me that the younger the child is at time of surgery, the eaiser the recovery. My son is 5. His surgery went great and he was eating regular foods the same day as surgery.

 

Long story short, in my opinion, having tonsils out would not help w/ the tics and OCD, but it may prevent some future strep infections. I would also suggest waiting until the child is more "stable" before having surgery. I wouldn't consider in an emergency procedure.

[peglem]

Here's another who saw no improvement with T&A. My daughter was 11 when she had her surgery, her chronic strep came back with a vengence.

[Lisa1971]

I'm sorry you are having to go through this...hopefully your case will be like mine and there will be light at the end of your tunnel...

 

My Dr told me the point of the antibiotics is to clear out any present strep infection and prevent any regrowth...since they believe the infection triggers the auto-immune reaction.... The tics are a symptom of the inflamed Basal Ganglia, caused by the auto-immune response to the strep bacteria...so in a perfect world...antiboitics prevent the bacteria, which prevent the auto-immune response, the brain does not become inflamed which in turn prevents the tics...but from what I understand (and please someone correct me if I am wrong) Only IVIG or Plasma Exchage treatment actually addresses the auto-immune component of PANDAS...basically resetting the system so a strep infection will ultimately not cause the antbodies to attack the brain in the first place...the antibiotics do not make PANDAS go away...they merely keeps it at bay...my son is responding to the antibiotics, some other children are not as lucky...

 

My son's tics decreased drastically after his first 10 day round of antibiotics, then came back with a vengeance when he got a bad cold which turned into a sinus infection, then decreased again after second 10 day round....but they did not go away completely until he was on Omnicef for 6 weeks prophalactically. (and it was an up and down recovery...one day good, the next not so much...during this time)

 

I still do not know exactly why they went away...could be ten days at a clip was not enough to really clear the bacteria and the longer round really got in there and took care of it...could be it just took that long for the tics to dissipate and the antibiotics had nothing to do with it...but....since being on the antibiotics he has been exposed to strep and had a viral sore throat/low grade fever without one tic...he is completely back to the kid he was before this began in February...so I will keep him on the antibiotics as long as the dr wants...we re-evaluate in August and may pull him off in November as a test...at present time The Dr, nor I feel a need for more aggressive treatment...but that could change...we are lucky and Alex is on the low end of the spectrum...

 

Has your son had comprehensive bloodwork done? This is a good place to start...to rule out other causes...I allowed Alex to have an MRI also, only because we have good insurance which would cover it...but, the Dr even said it was just another "rule out" test...it wouldn't confirm or deny PANDAS, just rule out a larger tumor or something along those lines...also his tonsils were never an issue so we did not need to address them...

 

Good luck.

--Lisa

[Alex]

My Dr told me the point of the antibiotics is to clear out any present strep infection and prevent any regrowth...since they believe the infection triggers the auto-immune reaction.... The tics are a symptom of the inflamed Basal Ganglia, caused by the auto-immune response to the strep bacteria...so in a perfect world...antiboitics prevent the bacteria, which prevent the auto-immune response, the brain does not become inflamed which in turn prevents the tics...but from what I understand (and please someone correct me if I am wrong) Only IVIG or Plasma Exchage treatment actually addresses the auto-immune component of PANDAS...basically resetting the system so a strep infection will ultimately not cause the antbodies to attack the brain in the first place...the antibiotics do not make PANDAS go away...they merely keeps it at bay...my son is responding to the antibiotics, some other children are not as lucky...

 

My 9 year old son has PANDAS and we are pursuing several different treatment approaches. As one approach, we met with a psychiatrist out of Mass General named Dr. Daniel Geller. We learned of him through the website www.savingsammy.net which is promoting a book, Saving Sammy, about a boy/teen who Dr. Geller treated for PANDAS and is now fully recoverd. The author of the book is the Mom, Beth Maloney. In correspondence with her, we learned that her son's only treatment was a high dose of Augmentin for a year and a lesser dose for the following 3 years. He is 100% recoverd from extremely severe PANDAS that went undiagnosed/ untreated for several years.

 

In our meeting with Dr. Geller, he prescribed the same thing, a 'robust' dose of Augmentin for a long time. I am going to make a unique post about the consultation, but to make a long story short, Dr. Geller stated that anti-bioitcs have anti-inflammatory and immune modulating effects, not just anti-bacterial effectiveness. This confirmed to me what I have noticed on here a great deal, kids with PANDAS improve on anti-biotics even when they aren't fighting an active case of strep. Anit-biotic therapy is an emerging field in the treatment of many auto-immunde disorders even though they are not sure exactly why it works. We have a friend who has lupus that goes into remission when on antiibiotics, and reemerges when she goes off. So, anti-biotics are most certainly a treatment for PANDAS, not just for strep.

[P_Mom]

Alex,

 

So, is that the course of treatment you are taking...the Augmentin? How long and what does this doc say about the future for these kids when off antibiotics?

 

Thanks for any info.

 

Kelly

[Kayanne]

Alex,

 

Thanks for thet information that Dr. Geller has told you...I can't wait to read your separate post about your visit...very intriguing to me because I am struggling with the idea of having my daughter on long-term antibiotics.

[T_Mom]

Yes, antibiotics are worth a try--and if, as in our case, they are actually appearing to drive away (and keep away) PANDAS symptoms of SEVERE OCD and/or tics it is well worth it in my opinion!

 

Our daughter is doing well--full strength amoxicillan still...

 

Hopkins had suggested inpatient psych. ward, I am rather glad we tried antibiotics, to say the least.

[madhu]

Thank you all,

I'm still continuing the zithromax for my kid ...week 3 and his tics/urinary frequency have reduced but not completely gone.

So should we change to another antibiotic and see? Alex, Keep us posted about your visit with dr Geller.

Thanks,

madhu.

[T_Mom]

Hi Madhu,

 

I can say that in our daughter's case we saw weekly improvements, but it took 3 months for the antibiotics to really clear her. Nevertheless, we could see improvements week to week as (what I believe) her brain was healing after the last moderate exacerbation.

We also do immune boosting vitamins, D, Omegas, C, and probiotics drinks --to hopefully aid in healing. Rest, rest, rest, and healthy natural fruits, veggies, and I pushed eggs/chicken/real foods.

 

The severity of the exacerbation is an indicator of the effects on the brain, we believe, and it takes time to come back.

I will add, her report card at the end of the year, compared to the fall was dramatically different.

[EAMom]

Hi Madhu/Alex etc,

 

Madhu...

you might add Ibuprofen onto the Aizth. Lots of PANDAS parents find it helps. Our immunlogist has our dd (55pounds) on 200mg daily long term. He felt this was a safe long term dose for her. You could do it more frequently short term (2-3 x daily).

 

 

Alex...

it is interesting that dr. Geller believes that Augmentin (and other abs) are anti-inflammatory. Our (stanford univ.) immunlogist felt that Azith. was the only ab with anti-inflammatory (and immune-modulating) properties....that is what makes it unique vs. the other abs. He feels our dd is mostly benefiting from Azith's anti-inflammatory properties at this point (vs. it's anti-biotic properties). Certainly the prevention of strep is critical, but Azith. helps our dd even in the apparent absence of strep. Azith. is the only ab (the 4th one we tried) that has helped significantly with dd's symptoms (OCD, mood, anorexia nervosa, tics).

 

That said, our dd's symptoms are not completely controlled even on 250mg/day azith (esp. when ill, stressed, or exposed to strep). Her anti-neural anti-bodies (tested via Dr. Cunningham) and Cam kinase ll levels were also quite high...despite being on abs for over a year. So...we are heading towards IVIG this summer.

[T_Mom]

Hi All,

 

Just a note re: Amoxicillan. Last year we saw one of the NIH researchers (former) who prescribed Amoxicillan prophylactically for our daughter.

 

This person told us that Amoxicillan had anti-inflammatory properties which they had found at NIH, but never published. Just fyi--to add to the mix. If the lessor antibiotics work than as noted earlier you can move to the more powerful ones if necessary.

[EAMom]

Very interesting. Also interesting about NIH not publishing the info.

[T_Mom]

Very interesting. Also interesting about NIH not publishing the info.

 

The person who mentioned it to us said that they had learned this as a side issue essentially--so it was not on the research radar. What I really want to know is if anyone is doing research using full strength antibiotics to treat OCD/tics that stem from illness-related inflammation...

 

THAT has the potential to apparently be very helpful to have some information on--*( Any medical interns reading this forum might wish to pursue that avenue!) Please!

TMom:)