reactive

This was sent to me in a link from Medscape at my work email last week. When I looked at it closer I noticed Susan Swedo is on the task force. Did you see that? I'll bet she is working on it; but the more noise from friends and families affected by PANDAS the better I say!!

Did anyone already find out: if one cannot tune in tomorrow evening is there a place to retrieve it later?

Not sure how old your dd is. I have 2 sons, but work in OBGYN. If you are sure it is yeast, and she won't allow you to use a topical, I think oral is the best. I don't like forcing grown women let alone little ones to have things done down there unless you HAVE to. Just putting the med on the outside may not be enough.

I posted on another part in this thread also, and that is what is hard for us as our DS9 is so mild compared to some of these other kids...if we did IVIG once and that would be it, I would do it no problem...but if our son reacts to some viruses too and we think he might, antibiotics after IVIG won't help that...so I am afraid of doing IVIG; which we would have to pay for ourselves, and he would do better but have a relapse from virsuses. I'm getting ahead of myself here as ds had immuno workup drawn last Thurs and I don't even have those results yet. But immuno doc does not think we will find anything in the labs...

I thank you as well, I am paranoid about chemicals in soap.

DS9 PANDAS born at 40 weeks 5 days. No preterm labor. + respiratory distress at delivery and "bagged" for 90 seconds, low one minute apgar and normal 5 minute apgar. DS5 nonpandas born at 37 weeks (just term!) and I did have terb. shot once at 34 weeks with him, but contractions stopped. No steroids.

Since we are on this topic; does anyone know...I know legnth of illness can impact success of IVIG and that worries me as my son has had symptoms for five years, possibly longer. But, my real question is, do kids with more "mild" symptoms get better sooner with IVIG vs those who are severe? I'm hoping that may be the case as my ds9 is mild currently, we could probably swing one IVIG but could not afford more. Is there any info on that?

My dh had his tonsils out at age 8 after recurrent tonsillitis. I had recurrent tonsillitis as a kid and even in high school and college. We are both in our early 40's now...when we were kids they never did strep tests on us, treated us clinically with antibioitics. My dh side of family: all his sibs (5) had tonsils out too. My two sibs did not...our ped did not believe in it...my mom tried to get him to OK taking mine out but I never got them out. After ds9 PANDAS occured five years ago, I had strep three years in a row from he and my other ds5. One year, my mom was + first, then me, then we took both our ds to the ped and they were + with no symptoms. Three years ago my ds had tonsils out after very recurrent strep and I do think it improved the PANDAS. But he still gets strep sometimes. Two years ago I had a fever with no sore throat for 5 days, on day five I got a rash, looked like scarlet fever...did not go to the doc...the following week ds9 PANDAS +strep throat so I got ASO done on me and was + so I probably had scarlet fever. My mom also thinks I had rheumatic fever in college, but I went to the college clinic when acute, think it was missed and was feeling better by the time I saw reg. doc so they could not do anything. My mom read Dr. K's website, and she called me and told me she thinks I have the adult onset PANDAS he describes.

ectomorph kids are very nervous types, very thin, bad eaters, not athletic, thinkers, intellectual mesomorph kids are average weight, easy going, athletic, average in school endomorph kids are more "rotund" if you will...forget the other qualities as I got stuck on endomorph since that described my ds9 I think I read this in a child development book one time....forget for sure where or when...

After watching my ds symptoms for 5 years now, I can say for certain: sometimes ds first symptom of strep is vocal tic, followed by sore throat and fever followed by + strep test followed by start of antibiotic followed by what I call ADHD behavior. He does not ALWAYS get ADHD symptoms but always has tics. My ds is extremely well behaved, "boy scout" if you will. Our ped has seen him explode with ADHD in her office...he would literally crawl under the exam table... he could roll on the floor in circles at the grocery store....I had to take eval forms for ADHD to the teachers and the teachers looked at me like I had 3 heads...he never did that at school, but the symptoms of ADHD were with strep, and I had kept him home, so they were gone by the time he went back. Interestingly, my ds has flares with some viruses, but not all....I have never seen the ADHD component in my ds with a virus, only strep.

"Sensitive ones"....have you ever heard of "ectomorph" "mesomorph" and "endomorph" ? DS9 PANDAS is ectomorph, DS5 nonPANDAS mesomorph...

I agree with you...we really don't know the true numbers of children afflicted with this...Another thing that Dr. K said in his radio interview on Autism One was that the mothers of PANDAS children have non-interfering obsessive tendencies...describes me to a T--although my DH doesn't think my obsessions are non-interfering...LOL...however, I think Dr K. has observerd this because it is this type of personality trait that is not going to let up until we find out what is wrong with our children! Describes me to a T also...LOL

I live near Akron, OH and five years ago we drove our son for a consult with a Dr. Gilbert in Pittsburgh as he had done a lot of research in OCD and young kids. He did not charge us. At the time, I was desperate, ds was acute, and we could not get in with a psychiatrist for 8 months (think Beth Maloney looking for help in the beginning). He did not treat our son as he could only offer standard therapies. My son still at age 9 has never been given anything other than standard therapies. But, Dr. Gilbert did say that our ds presentation was classic PANDAS. It was just that we did not have proof of strep at the time (an other story). He said " it doesn't matter if it is strep that caused it or not, you treat it the same anyway". That was five years ago. I am only on this current journey now due to the birth of pandasnetwork.org. We are lucky, in that although we have issues, my ds9 is very mild compared to many of the families on this forum. But I still want him to have any and all help he can get. My dh and I get so terrified still that he may get severe again like he was at age four, and be gone for months. I think we all should realize and be grateful for Diana and pandasnetork... just look at how many postings are on this forum alone in the short time it has existed...in the defense of physicians everywhere who are unsure of PANDAS...they have not seen what we have all seen. And I about "dropped a load" (sorry ) when I found these sites...and I found them by accident. I truly believe all of these stories and internet connections may help in the validity of this disease.

Five years ago when my son was four and very very acute, our neurologist ordered a CT scan of the head. He also had a "big head" (still does and always did) and I think that is really why he ordered it...the test was normal.

Hi not that we are aware of, tho I have always suspected a PITAND aspect to his Tourette Syndrome He does also have Crohn's Disease, which some docs think is related to mycoplasma. We know he once had Epstein Barr tho never mono. he is now a 20yo and doing just great. some mild tics, rare OCD and when it shows, not intrusive or scary like it used to be when it could "morph" with the tics and result in either psychotic behavior or unintentional self injury. Now it is more mild precision/organizing OCD, which he releases via his music and artistic stuff. He still has diet/supplements(nutritional, herbal and natural antimicrobials & probiotics) and things like acupuncture as his primary healthcare. I did have him under the care of Dr Murphy and one of her associates for many months, but they did not feel he was PANDAS based on the testing they did then, and him having absolutely no history of strep. I took him because of his sudden onset of the severe TS/OCD when I first learned of PANDAS in 2000/2001 while frantically researching what may be happening to him. In our journey, we realized that my husband and his own dad, and possibly in retrospect memory of some of my cousin's and uncles, had symptoms of Tourette Syndrome. We are pretty certain we are dealing with genetic TS, but as I mentioned above, there is also the PITAND component. We feel possibly the natural antimicrobials he has been on for many years keep that aspect under control Interesting...my son has mostly tics presently so your case is interesting to me...but at age four he was symptoms of classic PANDAS even with joint and leg pain...a psych in Pittsburgh called it PANDAS without the strep component as we could not find the strep at that time; fastforward to age 5 and 6 and recurrent strep...tonsils out age 6...now age 9 doing really good but increase in tics/OCD when sick. He looked at me yesterday at lunch and said "I can feel the PANDAS getting better" and he is on day 3 of a z-pack....he can tell when it gets worse and better.

My DS9 had hives with Amoxil at age 3, so he has not had it since. We just had a bunch of blood drawn, ordered by immunologist, and he ordered 3 tests to check for pencillin ect allergy...I'll keep you posted results are pending.

This may not be related at all but for what it is worth: my DS9 had his "explosion" at age four, and during that time he was constantly spitting...I'm not sure if the spitting is a compulsion or a tic. But this was debilitating...he would have saliva all down the front of him, he would cry that he couldn't stop. Since that time, whenever he has a flare of PANDAS symtoms, he must be spitting a little and the wiping it on his hands so no one at school sees. He will come home and the tops of his hands, down the the fingers, are raw from wiping...the line will be where it long sleeve is, and if he has short sleeves on it will go a little above that. Not sure how old your kid is, but could yours be doing anything OCD or tic like to irritate the fingers?

I think many of the kids from lower socio-economic groups get "mental illness" diagnoses rather than further investigation. I think numerous "quasi psychotic" PANDAS cases are missed because they are simply lumped into the MI group I was watching a documentary the other day about adopted kids with "mental illness". Many of them are not Caucasian. From the little I know of PANDAS and the lot I know of TS/OCD, it struck me that a number of those kids could be undx PANDAS/PITAND or Tourettic OCD. Breaks my heart to see kids drugged up on anti-psychotics and other strong meds, sent to rehab and psych wards simply because their well meaning parents have no idea of these other conditions, and as we all know, many doctors dont either when my son first manifest some of the more troubling tourettic OCD symptoms, a psychiatrist told me he would likely have to be institutionalized Thankfully I refused to accept that evaluation, and seeing my son now at 20yo doing so well, I have an even stronger concern for the many kids who are being misdx Chemar: Did/does your son have PANDAS?

I agree that most of the parents on this forum are of higher than average IQ, whatever their ethnicity. However, we also know that in general untreated streptococcal infections generally follows poverty. While I could see how milder cases of tics/ocd/behavioral changes could be under-reported, it's hard to believe that the severe quasi-psychotic cases could be missed. I think this may be the case as the few African-Americans I have seen with this have been very severe cases. The passing off of milder tics/ocd/behavioral changes as just things that "kids normally do" could have as much to do with cultural as with socio-economic factors. This means that an important place to focus initial efforts of a "Got Strep" campaign could well be the inner city. I am by no means a sociologist, I just raised this issue as it may be an important scientific clue in the etiology of PANDAS-like illness. Definitely something to consider discussing at the Autism One "think tank" session in May. Dr. T I agree with you completely. The clinic I work in is urban with mostly medicaid nonwhite patients. They live in the here and now. They will make an appointment for the same day for postpartum depression or infection or some other urgent need and not show up. Their ride will fall through. Their car will break down. They will get a lead on where to get food so they will delay their appointment in clinic to go to that. They also have poor problem solving skills and will be in the exam room with me and be upset they have to leave as the child they have with them has an appoinment in 10 minutes on the other side of the city. I know they will never make it and may get turned away...so they will leave and neither one of them may get seen. When their kid does have a sore throat, many will go to the ER for most of their visits. This leads to poor follow up as if any OCD or tics that are mild are happening, it has the increased chance of getting missed due to different providers seeing the pt. There is not that consistent follow up in a chart like in a primary care setting.

My initial review of the literature suggests this is largely unknown. What a great PhD thesis project (projects) for the interested individual ...I would also think there is ready funding for this type of research. An even bigger question: how big is this PANDAS problem, in general? Since this appears to be a common, and in some cases chronically disabling condition in many cases, the health/cost burden must be substantial. Just think of all the lost work hours and additional expenses parents incur in taking care of these children. Dr. T Understatement, Dr. T. My ds9 PANDAS has dealt with this for five years now. Our family has incurred several hardships and some of these are due to this disease...and my son is MILD (now) compared to others on this forum. He gets all A's except in math © and even played little league flag football and basketball this year...but he is constantly sick...misses school, always at the doctors, I've had him to the neurologist once, ENT once, allergist once and his family doc 3 times in the last month alone. All this while I try to accomodate 30 patients a day, and my husband is interviewing for a new position. I always wonder why my son, while completely incapacitated for several weeks at age four, with a gradual improvement over the next few months, got back to functional level and other kids did not. He still deals with this when sick with strep, ect. but never to the severe nature as age four. My side of the family: Welsh, Irish....my husband's side...German and French.

And on the same note, we all should be mindful that all medications and many other treatment modalities have inherent risk. There is nothing without risk. Daily antibiotic regimens have risk. IVIG has risk...those who have done this would be well aware. But most kids do well with these treatments; and most kids do well with vaccines. Remember Vioxx? Ortho Evra? Everything we take; something could happen. There are other areas of medicine and health care in which "a few pay the price" believe me. What is standard in medicine is risk vs. benefit. As a parent, you decide what that risk benefit phrase means for your child. When I take my kids for vaccines, every single one, they have me sign my initial for consent. If you knew then what you know now, you may not have consented to the vaccine that your child reacted to. But it doesn't work that way...you didn't know she would react badly...risk vs benefit

As some of you may have read before, I work in OBGYN. Pregnant women were/are in the high risk group. Disclaimer: I am pro vaccine, by nature. I have read all the science supportive and not supportive of vaccines. My personal and professional opinion: I think vaccines do more good than harm. It is easy for us to be critics now, of vaccines, living in this day and age of not really having to worry about those old childhood diseases. But they took lives. My younger brother, now 30, almost died of HIB; the vaccine was not available then. As for H1N1, the big spike in cases has died down from last fall. But I will tell you, just in my OBGYN clinic, in Akron (not a large city), we had three of our clinic patients on ventilators and one death in our pregnant patients. It happened in October, before the vaccine was available. Many of the cases of H1N1 occurred before people had access to the vaccine. My ds9, PANDAS, got his first symptoms of H1N1 during our 40 minute wait in line to get the vaccine, so he could not get vaccinated (irony).

I am on my way now to the family doctor to take ds9 who has strep smell again, and I think it is in his nose or sinuses...his symptoms have been much worse this week...and my mom got impetigo on her hips and legs after babysitting him the other week...???

AND, to send a note to the STATE MEDICAL BOARD in the form of a formal complaint in regard to that physician and what happened.