Returning to this forum after a long while

[LisaM]

Well hello everyone,

 

I see now there is a dedicated PANDAS section here. And much more information being shared than ever before! I am returning to seek advice and opinions.

 

My not so brief history is two years ago my dd at age 4 began eye blinking and shoulder shrugging during a time her brother had strep. We didn't have her tested at his onset of strep as she did not have classic symptoms. When her tics began we had her cultured and the ped ran an ASO and told us everything was negative and thought I was nuts when presenting PANDAS NIMH info. One month later she tested positive for strep w/o classic symptoms, was put on Augmentin. Was still blinking and shrugging. Next month she tested positive again with only a tickle in throat and screaming at night. Was put on Zithromax for 5 days and about a week later all the tics went away. I also had started the Bontech vitamins about the same time. At the time I attributed it to the vitamins as the idea of PANDAS was negated by doctors I trusted at the time.

 

Fast forward to the fall and she started kindergarten and had a sore throat, was tested (for strep group A only as that group doesn't believe in treating any others) was negative and 10 days later she was hit with major separation anxiety to the point that we withdrew her from school. We weren't really thinking PANDAS at the time again because of the negative strep. It lasted about 5 months and in the meantime we put all the pieces of the puzzle together realizing the strep we must have missed in the past, episodes of frequent urination, anger, defiance, restless nights, very difficult days. She stayed home until the next year (this current school year) and has done very well. She had strep twice in the fall, one time doc talked me into Amox, and it failed so we did Omnicef which seemed to work. While on the Amox though she was confessing a bunch of innocent child things she had done through the years. It didn't dawn on us at first that this was OCD. not until she was on the Omnicef and it stopped. We realized then that PANDAS was rearing its ugly head again. Second strep was treated with Zithro strep dose given by our ENT and there were no PANDAS symptoms.

 

To the present, the past 7 weeks or so she had what seemed like two bad viruses back to back. We tested her for strep a couple of times but there was one week where we think we could have missed it. She did have pink eye in the middle of it and began blinking again. We thought it was a viral pink eye as it was in the middle of what seemed like a virus. We did start her on an antibiotic drop a week or two later. After 3 weeks of coughing, she had a fever and was treated with Zithromax for the cough. Was negative for mycoplasma pneu. Her ASO was 200 and DNASE was less than 70. Took both of those again 4 weeks later (after the Zithro) and they were exactly the same. Her ASO was also 200 back at her onset two years ago. She has had an ASO of 100 during a well/no symptom/long time since strep period.

 

Anyway, she is still blinking and it is definitely a tic again. She also has a bit of hand shaking at times when excited. I have tried children's motrin and that does seem to help some at times and it has lessened overall. I do happen to have a prescription for Zithromax that I am thinking about giving her to see if it helps. It is only a 5 day prescription. I did take her to see a pediatric rheumatologist for the first time this week and she seemed to see the history as PANDAS but feels she is a child who reacts to viruses as well. Like once the tic is triggered, she is predisposed to it, even if the original onset was triggered by strep. As long as it is not interfering with school she thinks I should not worry about it. She did say that if she has continued strep triggered PANDAS symptoms that we could consider prof. abs.

 

We find ourselves at a crossroads, we want to protect our daughter in whatever way we can, but the thought of long term antibiotics is not appealing either. We realize that our dd's symptoms, although very serious to us, are not as extreme as many others we have read about. We want to protect her from any progression of this disease and the damage it causes.

 

Just wondering what your thoughts are about me giving her the Zithro. It would be enough for almost a full strep dose for 5 days. I'm not so sure this is a strep thing. I know that one of the bacteria that causes pink eye is strep but that should have been covered by the drops and the zithro for the respiratory infection. AND, what if it does work? Is 5 days enough? I'm not sure how I would get more.

 

Thanks so much.

[EAMom]

Hi LisaM,

 

welcome back...here is my opinion:

 

yes, I would try the Azith. It is likely that 5 days won't be enough...do the first 5 days, and then ask your doc for more. I would also keep up the Ibuprofen (motrin).

 

Azith. is also anti-inflammatory/immune-modulating so it may help even if it is not a bacteria that is triggering her current episode. However, it is also possible she has strep hiding out somewhere that is not easily cultureable (sinues or skin).

 

ASO/dnase titers are not (likely) the actual problem in PANDAS. Read Buster's Jan 12 post: http://www.latitudes.org/forums/index.php?...art=#entry29305

 

Yes, it is pretty common for viruses/other illnesses to cause PANDAS symptoms. My dd reacted to having Fifth's dz in Feb.

 

I would say if your dd's PANDAS is interefering with her ability to attend school (how long did she stay home, several months?), then it is fairly severe and prophylactic abs (or IVIG) should be considered. It is unlikely that her PANDAS will be controlled (or get better) without the prophy. abs and/or IVIG.

 

What part of the country do you live in?

[LisaM]

Thanks for your reply EAMom,

 

We live in Illinois. I did start the Zithro and the blinking has stopped. I'm not sure any of our doctors would give us more, and honestly, I'm not sure she needs more. With no protocol and so many children needing such different doses and types of antibiotics, we may watch and see how she is after the 10 days. It all went away for her two years ago after 5 days of Zithro then (for a proven strep) Our ENT told us once that if we wanted to do a double dose of Zithro to make sure the strep was eradicated, that we should do 5 days on 5 days off and then 5 days on again. We are not even sure we missed a strep this time. It could have been the pink eye (viral or bacterial) that triggered it.

 

Her separation anxiety in the past was severe and did go untreated because we were not considering PANDAS at the time and the strep was negative. The separation anxiety finally went away about four months later. Her birthday is right by the cutoff so we waited a year to start kindergarten and let her be older.

 

I did see Dr. K a long time ago for a consult and he seemed to want to treat her only when she had more serious symptoms. He struck me as wanting to go right to steroid and IVIG if she got worse some day. He did not seem to want to be our regular pediatrician for meds, testing etc.

 

Is there any medical literature on long term antibiotics for PANDAS yet?

 

Is there anyone else out there who has not needed long term antibiotics yet? Anyone who only treats strep aggressively at the time of outbreak? Anyone with a great Chicagoland doctor?

[EAMom]

There probably are PANDAS parents that treat strep after they get an infection although most on this forum seem to be on prophylactic abs. My dd's severe PANDAS exacerbation (spring 08) landed her in the hospital for 6 days (acute food refusal/malnutrition/anorexia nervosa at age 7.5, she was also psychotic), lasted 5mo, and took 4 different antibiotics to get under control...so we weren't personally willing risk going off the the Azith.

 

In retrospect, we realized she likely had milder PANDAS episodes when younger that went undiagnosed (mild ocd/urinary issues/anxiety)....

 

(From what I understand) Dr. K's experience is that antibiotics become less and less effective with time and future exacerbations...this is one reason he is a believer/proponent of IVIG. Certainly that has been the experience of many on this forum. I would also bear in mind that if you dd is only 5-6 she has a lot of years ahead of strep exposure (school exposure is a big problem). There are also some on this forum that are concerned about a baseline change (chronic tics, or anxiety, or adhd) with continued exacerbations. It is good that at least you know about PANDAS at this point and know to watch for strep.

 

I don't believe there is a more recent study than Swedo's Azith/Pen study on PANDAS kids and abs. Nimh (and the drug companies) prefer to put their money into studying autism. Unfortunately, the drug companies don't have a lot to gain by funding a PANDAS antibiotic study (the abs are too cheap and their isn't a huge number of known PANDAS kids.)

 

Maybe some others will be able to recommend a chicago doc. I understand that PANDAS is more accepted in chicago than in other parts of the country.

[pmoreno]

Thanks for your reply EAMom,

 

We live in Illinois. I did start the Zithro and the blinking has stopped. I'm not sure any of our doctors would give us more, and honestly, I'm not sure she needs more. With no protocol and so many children needing such different doses and types of antibiotics, we may watch and see how she is after the 10 days. It all went away for her two years ago after 5 days of Zithro then (for a proven strep) Our ENT told us once that if we wanted to do a double dose of Zithro to make sure the strep was eradicated, that we should do 5 days on 5 days off and then 5 days on again. We are not even sure we missed a strep this time. It could have been the pink eye (viral or bacterial) that triggered it.

 

Her separation anxiety in the past was severe and did go untreated because we were not considering PANDAS at the time and the strep was negative. The separation anxiety finally went away about four months later. Her birthday is right by the cutoff so we waited a year to start kindergarten and let her be older.

 

I did see Dr. K a long time ago for a consult and he seemed to want to treat her only when she had more serious symptoms. He struck me as wanting to go right to steroid and IVIG if she got worse some day. He did not seem to want to be our regular pediatrician for meds, testing etc.

 

Is there any medical literature on long term antibiotics for PANDAS yet?

 

Is there anyone else out there who has not needed long term antibiotics yet? Anyone who only treats strep aggressively at the time of outbreak? Anyone with a great Chicagoland doctor?

 

If your child is proven to get strep frequently, then you're kind of stuck with having to be on long-term abx. My daughter has had several positive strep cultures over this past 1 1/2 years since she started this, but it seems like her episodes are usually associated more with viruses. All kids are different in what antigen they react to. Therefore, after the IVIG in Oct, we did stay on abx for almost 4 months (first augmentin, then zith), she had a lot of yeast issues so I stopped the abx about 2 months ago and so far so good (as far as not getting strep anyway) but she still has yeast and that brings on behaviors in itself. They almost all have some kind of gut issues (and of course 70% of the immune sytem is in the gut) so there are so many factors to consider. Pat