kimballot

Welcome to the forum... It sounds like you have been going at this for a while, and I hope you find some answers and a new perspective here. My DS is 14 and has had PANDAS nearly all of his life. Had a really really bad exacerbation last year with many of the symptoms your son has. It has been a VERY LONG haul, but he is so much better and is really feeling mentally healthy. Still has a way to go to get physically fit and to get his cognitive skills and attention up to the task of being a high school student... but it is no longer dark and scary for us and I am feeling optimistic. He sleeps at night, gets up in the morning, goes to school, and does something most days after school. ""boring" and "routine" are wonderful things! I think the biggest step for us was finding a doctor who really understands PANDAS (PANS) and was willing to look closely at my son's immune system, see what infections and deficiencies were there, and treat those. Remember - it is not just strep that is the culprit. Best wishes as you navigate the system! The "pinned threads" at the top of this page are very helpful - and there is a private messaging option next to your name in the upper right corner if you want to message with anyone on the forum. Good luck!

Maybe the girls that are getting better (if that is the case) are getting better b/c of SPONTANEOUS remission. Maybe they have SC, not PANDAS. And anyone notice that NOBODY is talking about SC??? How was that ruled out? I agree it could be SC give the hemiballistic movements, but Dr. T reports that not everyone had elevated ASO or DNASE B - some had mycoplasma. (at least that is how I interpreted his statements). Can you get SC with other infections? my son has had PANDAS for most of his life. There was a period of about 4 years when he was off antibiotics except for a once or twice a year sinus infection. However, he still had PANDAS symptoms with allergies, respiratory infections, and viruses. All of these subsided spontaneously shortly after the infection ended. Once, he had very bad OCD after a respiratory infection - coupled with urinary frequency, separation anxiety, and some mild tics. All of these subsided after about 3 months. At the time we did not know it was PANDAS. So... I am not sure that this is not PANDAS if it spontaneously subsides. Unfortunately, the only way to know is with the next infection.

Has anyone seen reports of OCD in the paper? urinary frequency? separation anxiety? I don't recall seeing any.

He even failed to wear a bow tie tonight! .... AND they did not show his umbrella book!! Wow - he actually mentioned that CBT is good for PANDAS ... Very true... but NOT really for the tics!! It is for the OCD piece that no one has even looked for or talked about in these girls. Do they have it??

Looks like he might be on Dr. drew tonight.... http://drdrew.blogs.cnn.com/2012/02/06/exclusive-doctor-reveals-findings-in-le-roy-medical-mystery/ 04:08 PM ET Share Comments (Add comment) Permalink EXCLUSIVE: Doctor reveals findings in Le Roy 'Medical Mystery' We've just received big breaking news about the people in Le Roy, NY affected by tics and twitches. A doctor who has tested the girls says early results for six out of nine teens show something in common. He’s informing the families of what he’s learned right now. It’s not conversion disorder or the environment. So what is it? We can only reveal the exclusive details tonight at 9 p.m. ET/6 p.m. PT on HLN. Please join us for this huge development coming out of Le Roy.

I truly wonder if some girls have PANS or Sydenham's chorea or neurotoxin - induced tics and if some others are not having something similar to a conversion reaction. Dr. Bowtie on the Dr. Drew show has said that exposure to a chemical SIMILAR to TCE has been noted to result in a wide variety of neurological and psychiatric conditions. Could it set the girls up for increased risk of "conversion disorder" (whatever that is)?

One of the girls noted on TV that her stressor was a grandparent dying last year. I think by the time a child is 18 he/she has experienced the death of a loved one. Yes... it is difficult... but if that qualifies as a "significant" stressor, then there are NO daily life events that would seem off limits, so really anyone would meet criteria for this diagnosis.

Hawks - I've been told to proceed with much caution if your child is on SSRIs when starting inositol. I'd check with a doctor. My son is not on ssris. yes - we still do IVIG every 6-8 weeks.

Wow! Yes! It does say that... but if she consulted - why the secrecy and why have Trifiletti go up and evaluate the girls?.... and why would the NYS health department now offer to send girls to Maryland to see Swedo? Perhaps Dr. Drew will have answers on Monday!

You are SOO right - if something looks official and has some references at the bottom the general public assumes it must have been done correctly.

LIKE

Nancy - I fully agree with you... but I don't think this was ever thought of as a research study. I think it started out with the girls seeking help from a local neurologist and then ballooned out. Mechler got involved, but clearly had not real idea how to test for PANS and seemed to base his testing on the abstract of the 1998 "first 50 cases" report. Mechler has previously stated that he did not diagnose PANDAS because: A. It is very rare (Ok... I don't think I need to go further with this one. Just because it is rarely diagnosed does not mean that these girls do not have it!) B. Only one girl had a sore throat and none had elevated titers (we now know that some did have elevated titers- but apparently not elevated enough for his liking) C. PANDAS has a prepubescent onset. Now... let's look at the PANDAS to CANS paper they are citing... it says: 1. . Strep throat is difficult to diagnose, and single point ASO/DNASE B titers are NOT reliable indicators... You need to look to see if the titers are rising or falling - they say: For example, serial increases in a patient’s antibody titers more accurately define infection than does a single absolute elevated antibody titer; measurement of both ASO and antiDNAse-B are more accurate than either alone; and The use of single-point-in-time assessments of anti- streptococcal antibodies is considered unacceptable by most investigators.2,19 2. The prepubescent onset should not be used as diagnostic criteria - they say: this age limit may arbitrarily exclude some late-onset cases, including adults with the sudden onset of OCD after an infectious disorder.42,43 So... I don't understand why they are citing this paper. I may not like the PANDAS to CANS paper for several reasons... but even this paper seems to contradict what they did.

EA Mom - Are the results of Buster's study posted somewhere? Could you post the link or PM info to me? I can also do email if you send me a PM I'll give you my email address.

yes - DS14 is using 500mg (.5g) per day. He takes it at dinner time. We tried adding in a second on with breakfast, but had much stomach upset as that is also antibiotic time. Either way - the 500mg seems to be working well. It has taken the "edge" off of the OCD and cognitive inflexibility, which means fewer fights, meltdowns, and rages. He had ONE rage episode since we started inositol in December and is going to school everyday now (though we also changed a few other things that could be contributing to that). Overall, just more cooperative. We tried 5 htp in the past and I thought I saw some "withdrawal" when it seemed to wear off... not sure though as he was in an extreme exacerbation at the time. The inositol is working well, so we will stick with that for a while.

Thanks for the inspiring information!

According to Dr. Mechtler we are now seeing the aftermath of 9/11. That's right - when these girls were IN PRESCHOOL THROUGH THIRD GRADE they experienced such trauma with 9/11 that all they've been able to do is get up every morning to check the news and see what color the code is today. This, of course, coupled with the trauma and stress of daily life in a quaint small town with supportive families that really go to bat for them - has made them convert their stress into physical symptoms. Why did we not see this after 9/11 in NYC? Well.. living in LeRoy must be much more stressful.

How is it NOT breaking HIPAA to reveal that someone has made and broken appointments or that they have not accompanied their daughter to an appointment?? I mean.. really.. Isn't that slander? These people are the patients - they are supposed to be protected... they are NOT the professionals who are getting paid.

Dr. Drew tonight .... 9 pm eastern... HLN http://drdrew.blogs.cnn.com/2012/01/31/ny-medical-mystery-entire-town-remains-on-edge/?hpt=dr_mid

Here is another version of the same story - http://thebatavian.com/leroy

I do think activated charcoal helped a bit when DS was at his worst post-IVIG. I also believe that lots of water is key for him, and we alternate ibuprofen and tylenol so he can get meds a bit more quickly- The nurses can give you the schedule for that.

Perhaps they heard the terror alert code when they were in Leroy last summer and it has been stressing them out ever since!

I did not catch the whole show. Thanks for letting us know this! From the videoclip it looks like toxins are a huge possibility. I wonder how toxins affect our nervous systems and immune systems and if they increase the risk of autoimmune disorders?? Just a thought

yes - I believe the girls were originally evaluated by McVige (a neurologist), who says she ruled out PANDAS but she does not say what she tested for, exactly, due to HIPAA. Mechtler said PANDAS was ruled out because only one girl had a sore throat and because PANDAS is rare and is not seen in children after puberty (Obviously, he has not read a single article on PANDAS completely, since even the 1998 landmark first 50 cases talks about non-strep exacerbations. He must stop after the abstract). So... YES PANDAS has been ruled out... by people who don't know how to test for it and PANS has not been ruled out... since they only looked for strep throat.

Oh MY! I hadn't even thought of that! I suspect the offending infection happened a while ago, but it is certainly something to consider! Good thinking!

I have been thinking about this also. Personally, I am leaning toward waiting until we see what happens with the Leroy case(s). If it does turn out to be PANS, I suggest a concerted, unified effort on the part of PANS parents to come forward in every city... and maybe even have a "meeting" in Leroy, NY... If it turns out that this is not PANS (It really could be a pure environmental issue or something we are not even thinking of).... then it would probably be better to not have made made a big deal out of this.