kimballot

Oh my gosh - Thera had tics after mono in the past... HELLO!! Can you say PITAND??

Thanks!

Kurlan left Rochester a few years ago... and Singer was not there (I don't think). Unfortunately Kurlan left behind an ample supply of folks who believe PANDAS is just a result of some stress to the body increasing tics in kids who already have a tic disorder... no reason to test for infection or treat other than standard OCD or tic treatments. This is very sad, since Kurlan is now apparently embracing (? saving face by pretending he discovered?) the idea that infection can trigger these symptoms and saying "well... I didn't question if infection could trigger it.. .i just said it couldn't be only strep that did it". I suspect the expert will be Michael E. Pichichero, from the Elmwood group in Rochester. He has written on both sides of the PANDAS controversy, but of late has leaned toward the "infection is just another form of stress" idea.

I cannot believe the kids in Albany ate at a restaurant in Leroy over the summer... Leroy and Albany are like 4 hours apart. This cannot be coincidence- could it? Also -what would they be exposed to in the restaurant that long ago?

I have no idea what color the national terror alert is... but I do know that when my son is having an allergy attack we go from green to yellow and when he has mycoplasma we go to orange, and when he has sinusitis we go to red.... and when he is on two antibitoics and gets IVIG we drop down to green and when we discontinue one of the antibiotics he goes back to orange... So why hasn't the rest of my family developed conversion disorders??

Latest news - Another teen is affected... now at 13 teens with tics http://www.wgrz.com/news/article/152174/37/New-LeRoy-Student-With-Strange-Illness-Emerges

.... and I thought WE had a long haul.... this knocked my socks off.

However, when we put him on a "lyme challenge" protocol prior to a round of testing (flagyl & Doxicycline), we saw an improvement in his OCD symptoms and more energy, and his CD57 was low, which can be indicative of lyme (CD 57 is not reliable in kids, but he is 14 and adult sized- so we took this into consideration). Yes, it is so hard to say, esp. since flagyl and doxycycline are both anti-inflammatory so in theory, would have helped PANDAS. Yes.... I can't say for sure WHY he is doing better I am just grateful that he IS doing better. We had several PANDAS docs, a lyme doc and the pediatrician all agree that he needed to stay on antibiotics for an extended period of time - as long as we are doing that why not play around and find the combination that seems to work best? Is it because we are killing lyme? Perhaps - that may be why he herxes with tindamax.... is it due to antiinflammatory properties? Perhaps - if so I am glad we found the right combination... is it because it is killing off some other infection yet to be named? That is also possible.... 12 years ago when I told the ENT that my son's behavior was out of control whenever he went off antibiotics we had no name for the condition... but it was real and the antibiotics helped. Now- a decade plus later we are beginning to understand the disorder.

Egads! So sorry to hear this. Did he have a particular adult doctor in mind - or was he just dumping him.... and did he offer to continue seeing him until you get someone at least? It's not like you can just pick up with someone new with all the history you have with this doc. I am truly sorry.

I don't know if Dr. Gupta is bound by HIPAA since he is not the girls' physician. If one girl told him publicly that she had never had guardasil, then I would think (as a reporter) he could share the information that "not everyone had guardasil". I am not sure how he discovered that not all girls had guardasil. Also - I believe you are able to report grouped numbers according to HIPAA as long as no one can identify whom did or did not have the treatment. For example, a nursing home could say "90% of our patients had the flu shot" or "not all of our patients had the flu shot".... and we would never know if an individual did or did not have the flu shot. If they said "everyone had the flu shot" or "no one had the flu shot", though - then we would know if an individual had the shot, so they would likely say "we cannot comment on this".

triple post - sorry

triple post - sorry.... but as long as I am here... there was a question about the connection to Kurlan / Singer. Kurlan was working in Rochester at the time of his longitudinal study. The Dent is in Buffalo. Rochester is about 1 1/2 hours from Buffalo and doctors often collaborate on research. Leroy is between Rochester and Buffalo. I believe Kurlan's work is well-respected in the Buffalo and Rochester region among most physicians.

There is a doctor at the Dent named Sanjay Gupta, but I do not think it is the same person. I don't think the emmy-award winning Dr. Sanjay Gupta left Atlanta to move to buffalo to see run of the mill psychiatric problems. Here is Dr. Sanjay Gupta (neurosurgeon) of CNN http://www.cnn.com/CNN/anchors_reporters/gupta.sanjay.html Here is Dr. Sanjay Gupta (psychiatrist) of the Dent http://www.linkedin.com/pub/sanjay-gupta/20/521/366

Jen - I am so very sorry you are going through this. I think one of the problems with not having a solid, generally accepted protocol for our kids is that they are at risk of not being diagnosed with some other neurological problem because their problems are often dismissed and they are not routinely given MRIs. It is so good that you are getting one now. I truly do not know if your son has something going on in his brain beyond PANDAS and I truly hope he does not. Everything you described except the hearing loss could be PANDAS related. I wonder if the hearing loss could be due to an infection or inflammation of the auditory nerve- which could be triggering his PANDAS symptoms. Please keep us posted and let us know how he does. He will be in my prayers.

Sounds like you were very prepared and proactive. Nice job! I hope all goes well for you and your family!

It is my understanding that there are two sphincters involved in urinating - one close to the bladder called the internal sphincter, and one close to the urethra (near the opening) called the external sphincter. The internal sphincter is controlled by the basal ganglia and we do not have conscious control of it. The external is under voluntary control and keeps us from having accidents. The internal sphincter normally opens as the bladder fills with urine - making us "feel" like we have to go the bathroom. In our kids, the basal ganglia goes haywire and does not regulate the internal sphincter, so they often "feel" like they have to go to the bathroom. Here is an explanation of it - if you page down to the part about The Lower Urinary Tract http://www.seekwellness.com/incontinence/how_bladder_works.htm As far as what to do about it... really just anything you would do to reduce any other PANS symptom... ibuprofen if your child can take it and it is not too frequent, antibiotics if prescribed, steroids if nothing else works, IVIG or PEX if severe and needed.

I am not so sure it is PANDAS either - but I am fairly certain that no one who is truly knowledgable about PANS has evaluated these girls - and if they have they have not shared any information with the parents (I do not think there is a PANS doctor that does not share information with parents). They certainly deserve a thorough evaluation.

I'm not seeing much in the way of expertise in movement disorders in her online bio... http://www.drgailsaltz.com/about.html http://www.drgailsaltz.com/bio.asp

First off - my son has never had a strong positive test for lyme - despite lots of looking. However, when we put him on a "lyme challenge" protocol prior to a round of testing (flagyl & Doxicycline), we saw an improvement in his OCD symptoms and more energy, and his CD57 was low, which can be indicative of lyme (CD 57 is not reliable in kids, but he is 14 and adult sized- so we took this into consideration). The lyme doctor believes he has an underlying lyme or coinfection as does the immunologist. I believe he has some sort of underlying infection, and I can't say exactly what it is. All docs we have seen have recommended he remain on antibiotics for several years, so I decided to do the antibiotics that also work on lyme. He is currently on doxycyline and azithromycin. He has also been on tindamax in the past, but had much fatigue with tindamax. I would like him to go on tindamax again as it is a cyst buster, but we had to suspend it for a while so he could get up and get to school everyday. He is also on several supplements to help his immune system, decrease OCD and increase energy including inositol (recently added and saw HUGE improvement in OCD symptoms), CoQ10 (given at night - time released - really seems to help him get out of bed in the morning), fish oil, calcium-magnesium, vitamin B, vitamin C, multi vitamin, D3 (these levels were low in his blood), acidophilus and saccharomyces boulardii. He also takes a small dose of ritalin on school days. We were told it would take 9-12 months on average to see improvements with the lyme treatments. I believe the doctor said she looks for a 2 month window of good functioning before she starts to taper down the antibiotics...(which could take more than 12 months to accomplish) but I could be mistaken on that. At the time we had the conversation my only thought was "please let me see some improvement"... so I don't recall exactly what the criteria was for ending treatment. We started the doxy / azith combination in September and I would say that we've seen slow improvement each week since. I also need to add that he gets IVIG every 8 weeks and has not had any infections in the past 11 months - as opposed to chronic severe sinusitis prior to that.. so I am sure that the IVIG coupled with the antibiotics warding off new infections is also a very huge part of his recovery.

thank you so much for posting the phone numbers. I just talked to Beth Miller - she is going to be on the today show tomorrow morning. I am sending her the link to the forum. I don't know if this is PANDAS but hopefully they will get a good evaluation. Once she comes on the forum you all can welcome her and offer your suggestions.

My son was very sick before IVIG and had been harboring a major infection for several years. When we did IVIG he had a major exacerbation - very similar to one he'd had 6 years prior just before we removed his tonsils. The exacerbation was horrible and scary and he is 14 so we had difficulty controlling him. It lasted for several months. We continued IVIG every 8 weeks, consulted with a lyme doctor and with Dr. M in Florida. Each doctor offered something else to help us. Much of the improvement was probably time alone. I don't know if he had gains with each IVIG or if it was just the time away from the first IVIG that helped. Either way - he continued to improve VERY slowly. Problems were both physical (fatigue, joint pain, etc) and mental (OCD rituals, anger, rages, depression). If I had to do it all over again the only thing I would do different is start IVIG sooner. This is the first year in his entire life that he has not had any sinus infections (his usual trigger). He is now a very calm, fun, and generally likable kid. It has been 11 months since his first IVIG (and he has had a total of 6 IVIGs so far). Last week he went to school for 5 days in a row for the first time in over a year. We celebrated. His grades are pretty poor - but he did a ton of work last week to catch up and I am hopeful he will start to keep up with the next marking period. I think our experience is more severe and took much longer to resolve than most that I have read about on the forum... so please recognize that this is an extreme case. Also, please recognize that my son had the SAME type of exacerbation 6 years ago due to a chronic tonsil infection - and that was well before IVIG. You can PM me if you have more questions - good luck with your decision.

Hi - yes - we have used the oral form in the past with very good success. Prior to PANDAS treatments DS had many food sensitivities and was very reactive. Cromolyn really seemed to help reduce behavioral issues after certain foods. I believe we did it 3 times a day for a while - then just as needed. We started with DS actually swallowing the liquid in the little nebulizer pack, but they stopped making this and then we startes using gastrocrom. The problem with this was that it really needed to be dissolved in water and DS could not drink a whole cupful as he did not like the taste.

Does anyone know if Swedo et all are planning to respond to this - similar to the response to the "horse and Zebra" article? I am sure there are many politics involved and the folks need to plan to strategically respond in the best manner possible to not interfere with the white paper.

It seems to me that Kurlan and Singer have spent an awful lot of time and energy trying to prove that strep alone does not trigger OCD and Tics. I could not agree with them more. I don't think that if you look at ALL of our kids - as a whole- strep is any more dangerous than mycoplasma, lyme, the flu, sinusitis, or a whole host of other things that trigger our kids. Some kids react more to strep, some to mycoplasma, or sinusitis, etc. I believe the greatest flaw in their work is that they NEVER acknowledged the role of other pathogens in their paper - even though Swedo (as early as 1995 and 1998) noted that it was not ONLY strep that triggered exacerbations. I know I read the papers through the lens of the parent of a child with PITAND - due mainly to sinusitis but also to viruses and a host of other infections ..... but when I read the 2008 longitudinal study I saw: 1. The kids in the "PANDAS" group (I recognize many of these kids probably did not have PANDAS) had more strep infections 2. The kids in the PANDAS group had more exacerbations 3. The kids in the PANDAs group were tested monthly for strep and if they had it their pediatrician got the results and was able to treat them with antibiotics if s/he desired (but no one kept track of which kids got antibiotics and which did not) 4. The researchers could not link the exacerbations to strep temporally as sometimes the kids with PANDAS tested positive for strep but did not have exacerbations (could this be from the quick treatment with antibiotics?), and sometimes they had exacerbations without testing positive for strep. (Note: they did not test for other illnesses - just strep) UMM... so in my mind, that begs some new research questions that should be answered in future studies, such as: 1. Do kids with PANDAS have immune systems that make it harder to fight off infections like strep, and what makes their immune systems different? 2. Does monthly testing for strep and rapid treatment with antibiotics reduce the frequency of exacerbations? (surely, a monthly strep test and ASO/DNASE B would be far less expensive than the $$ poured into keeping our kids safe during exacerbation and returning them to function) 3. Do illness other than strep also lead to exacerbations? As for the CANS article.... they DO talk about testing for strep, but the DO NOT have it in the table - a gross oversight (or purposeful omission?).

First off, let me say that we have worked with 3 of the doctors on your list over the past 2 years, so I am not pushing for one particular doctor - If I were looking for my first appointment with a PANDAS doc today, I would take the following into consideration( not necessarily in this order!): 1. Specialty of the physician - and how does that fit with my child? For example, if my child tended to have OCD as a primary concern I might lean toward a psychiatrist... Tics- a neurologist, and chronic infection/ illness - an immunologist. 2. Treatment breadth - does the doctor tend to start out conservative (antibiotics), but move to more aggressive treatments (steroids, PEX, IVIG) if needed. 3. Availability - does the doctor see patients full time and have a good reputation for returning phone calls when there are problems and such. Does the doctor have office staff to help with billing and such. 4. Insurance - Does that doctor take my insurance? Regarding blood work - Some doctors will send a list of suggested labs, which your pediatrician or other local doctor could then order. Some docs are hesitant to order or suggest labs until your child is an established patient - and that means a face-to-face visit. If you have narrowed the list down to one or two doctors, you could post which one's you are considering and ask folks to send you a PM with their experience. That should help too. Good luck!