beeskneesmommy

Thanks - I know I cannot protect him from other kids being vaccinated (sounds strange when I put it that way). However, he is the oldest in our play group - just missed the birthday cut-off for kindergarten by 5 days. I had understood by our Peds that 5 years old is the vaccine age. What I can assume, I think, is that no 4 year old would be getting live flu vaccine as it is not recommended for littler guys. I appreciate your response. I find myself worrying about the other shoe dropping all of the time because we have had such good fortune in Dr. B's protocol and our lives have drastically changed for the better over the last few weeks. I can honestly say that I have not had this level of reprieve for 2 years. I find myself letting go and laughing, like really laughing occasionally, and it feels alien to me - had not realized how deep into the abyss I had fallen until things got brighter. I cannot bear the thought of losing him again and I am hypervigilant right now as a result! Best to you, Kath

The average age of onset for OCD is between 9-13. 6 is too young, IMO, for a diagnosis of OCD without first exploring an infectious trigger. And it sounds like you have anecdotal evidence to support a Pans diagnosis. But I doubt any doctor will make a diagnosis via an email (and I'd run from anyone who did).
 
At the top of the forum, you'll find an assessment questionnaire prepared by Yale, which authorized ACN to post it. It's similar to the YBOCS scale Yale developed for OCD and it's used by Dr L and maybe others to support a Pandas dx. You can start there and also do regular dosing of motrin (2-3 times/day) while you wait for testing. Or perhaps ask your DH to take some time off work to get it done sooner? The thing with motrin is you need to dose at regular intervals in order to keep inflammation regulated. Sporadic dosing isn't nearly as effective.
 
When you say "basic lyme test but not WB" - what do you mean? All commercial labs other than Igenex or StonyBrook rely on standard WB. Curious what test you're doing. If it's an ELISA test, please realize that ELISA is even less reliable than a WB and is basically meaningless. You can read about the tests and what they look for, how reliable they are etc under the pinned threads for lyme. Very helpful.
 
It sounds like you're thinking it could be Pandas but want 'evidence" rather than just jumping in with both feet. Review all the info on Pandas on the OCFoundation website. This article is also very helpful http://thewalrus.ca/a-feverish-debate/ Then trust your gut and if you feel it could be Pandas, make an appt with one of these doctors to explore it further. I suspect you'll be glad you did.

hi said that the brain damage is allreday to big to be fixed;it's permanent, and that there is nothing else to help..
 
please, if you are not familiar with it, look up the concept of the neuroplasticity of the brain. I do believe it is the overriding theory of the function of the brain, in today's world.
and I think there is only more to come in the future -- NIH is likely getting ready to spend lots of $$ on the BRAIN initiative (hopefully) and I think they will only find more to support this concept.
 
there are a couple of good books not related to pandas, but about the brain -- one is the Evolve Your Brain, that discusses this. The other is a little different, called My Stroke of Insight -- a neurologist who had a stroke and although she did have some permanent changes to her brain, how she embraced them and found them very valuable even though different from her previous functioning.
 
furthermore, I believe there is simply not enough research, studies following cases, etc done on pandas to make such a statement.
 
our personal story -- ds was diagnosed early but persisted with with symptoms after initial 100% remission on abx. I say he was sick from ages 4.5 to about 7 or 7.5. so, fairly 'early' treatment but still a number of years that his brain was under attack. he is very healthy now without ivig, pex nor long term abx. we have treated with an integrative MD using homeopathic remedies.

I'd be really turned off by and skeptical of a doctor who robbed you of your hope based on his experience of treating one older child who didn't respond.
 
Like some of my other "old timer" friends who've posted, my son took a long time to get well. We did Pex and 1 IVIG that made him worse, not better. He was sick for a year before we found a Pandas doctor who started treatment. But even then, we didn't get to the root of his problem (lyme) until he'd been sick for 2.5 yrs. We then did lyme treatment for 2.5 yrs (plus integrative treatments for nutritional/methylation/yeast problems). He's now a different kid - in all sorts of good ways.
 
In 3rd grade, he took an assessment test and scored very low normal range (93). in 5th grade (6 months ago) he took the same test and scored very high normal range (110) - a nearly 20 point swing on a test that's supposed to measure aptitude. His brain got well and now he's gone from a C- student to a B+ student. He was sick for 5 yrs but has no permanent "brain damage". He's healing and growing into the kid I always knew was trapped inside. is he still at risk for a Pandas episode? I'm sure the answer is yes. I don't think I'll breathe again until he's into adulthood. But he's making great strides forward and I just can't believe that any kid is a lost cause or that a parent should be told to just "accept" the "as is".
 
If in your heart you feel your son is more than what the outside world sees, then keep fighting. You've hardly explored all options. Don't let someone rob you of hope - ever.

I can understand what the immunologist is saying, and I can appreciate his experience with another child, but I really do not think we are at a point where we can say definitively who will and who will not benefit from treatment. The only studies that have been done with PANS have been kids with clear-cut, first-time PANDAS (no co infections) or a few kids with first-time exacerbations from a virus or another type of infection (back in 1995). I do not believe anyone has studied older children who have had years of untreated exacerbations.
 
I am telling you this as my son is 16 and did not start treatment for PANS until age 13, despite a lifetime of chronic infection and repeated symptoms with each infection. He had many, many small exacerbations with sinus infections throughout his life, and has had two very large exacerbations - one was due to a severe hidden tonsil infection and one was due to a hidden infected sinus cyst. The first one took about 4 years before he was functioning at a "typical" level. The second one happened 4 years ago and he is just returning to school and starting to function this year. Each exacerbation takes a toll and, yes, leaves him with some residual problems such as handwriting or intrusive thoughts. I do believe that with early treatment he would have no symptoms at this point - and that is my prayer for future children.
 
I recognize that this is a chronic condition for my son and he will be managing his illness and his symptoms for the rest of his life. That does not mean that he cannot have a very functional and fulfilling life. Without treatment he would need to be institutionalized, I am sure.
 
So... is there hope for children with long-standing PANS? yes - I think so. Will they be cured? Perhaps not. Can they learn to manage their illness and function? I suspect the majority can and will - but we need more research to understand this disorder to have the best management possible. Should we stop treating them because they are well past their first exacerbation? Absolutely not. Whatever the cost of treatment in terms of time and money and frustration and quality of life... in the long run it will be nothing compared to the cost of NOT treating our kids in terms of time and money and frustration and quality of life.

Good luck and prayers! Can you give me the name of the CO LLMD please?

It can depend on what part of the country you live in as well. Some abx are more effective in certain geographical regions. Amazing stuff. I wonder how many docs know that. Our PANDAS specialist told us.

I'm not sure why you're asking this- I mean are you wanting to know if you need a neurologist or what you should demand of one? PANS causes neurological symptoms, but those symptoms are not neccesarily specific to PANS. So, for starters, I think a neurologist should rule out/in other things that might be causing those symptoms. Then there's the whole treating symptoms (live w/ it) vs finding and eliminating the root cause. Ideally, the doctor would do both-improve patient comfort, while seeking a cure.
 
PANS involves so many medical specialties- immunology, neurology, psychiatry, infectious disease, and possibly lyme literacy-
Most of us look for somebody who is willing and able to treat, regardless of the specialty. I think, however, regardless of who you find to treat, it is important to rule out other causes for the neuro symptoms-

A balanced reminder, DCMom!

Beesknees-
 
Sorry things have been rough.
 
My only suggestion is to figure out what you are treating, before throwing all the meds at it. I know this is the million dollar question, but I think it is important. If you are treating autoimmunity (perhaps the ivig stirred up his immune system this time?), all the antibiotics are not really going to help. You would need steroids or the like.
 
If you feel you have some chronic infection- that may be the reason for the flare with ivig, and you should work to figure out the infection to target it more specifically with meds.
 
I don't mean to sound cold at all- just that for us, we have found that what our kids have is definitely autoimmune, and all the antibiotics in the world don't touch it. Yes I know some have mild immune modulating features- but there are MUCH better options if that is what needs to be done. We are able, thankfully, to see results with steroids, solumedral, pex, etc. And yes, apparently minocyclene is the best antibiotic for immune modulation and crossing bbb- so might be worth a shot.
 
There are other families on here who have found chronic infection to be the culprit- and therefore needed to go a different route.
 
My personal opinion is you need to go with your gut on this, what do symptoms, onset, and test results all point to. What treatments have worked. I know you have been at this a while, and you are really smart, you are going to get your little boy well- hang in there!

I have not given Ashwaganda to DS, but I have been using it myself, nightly, for a long time! It helps take the edge off for sleep. I have also tried GABA, at hlaf a dose in the morning, which made me uncomfortable and clammy to start, then mellowed me out, then cause extreme thirst and fatigue by the afternoon.

So sorry. I am having one of those crumby days myself. More just plain sick and tired of dealing w/PANDAS at all. I am always the bad guy, always the disciplinarian, always the medecine-giver, the one who keeps track of docs, insuarnce, finances and does the OOT traveling with our son. I need a break longer than an hour to clean and do laundry. I wish my family members would step up and offer me a day off...or that my husband would show a little more appreciatiation for the incredibly hard work that I do 24/7 for our son. Sorry. Cranky. Hope your friend sees reality and so sorry that she disappointed you!

IVig 5/20, 5/21. Hard decision because DS6 was looking very well at the time. Convinced to go ahead because he was still having intermittent MINOR symptoms and the plan was to boost the immune system prior to getting him off high abx over the summer. He has been on Azith and Augmentin daily for 2 years and was doing better than ever before with the continued meds and a previous IVig last Sept.

So, after the IVig, he was holding his own, although not great, but no cause for alarm as he does respond with flare post IVig. 30 days ago as per doc's orders, I stopped the Augmentin and put on board 14 days of Rifampin and 30 days of Clindomycin, daily. I also continued the Azith, daily. During the time that the Rifampin was on board, he leveled out and lookd great! After the Rifampin went off, and he has been on just the Azith and Clindo for the last 2 weeks, he has gone down hill. Primary symptoms are pretty severe OCD (causing irritation, arguments, mild tantrums several times/day) and the return of tics. Today is the last day of Clindo and I am dutifully finishing it out.

I have Augmentin and can start it again if I choose, but I am wondering if I should just chill and hold my breath and see what he looks like over the next week. I fear him going down hill further, but there is a part of me that blames the Clindo for it (crazy??). I started him on Diflucan 1 week ago because I was concerned about yeast. This has historically made him look stellar with the combo of Azith and Augmentin after a short herx, however, does not seem to be touching him now. I suppose he could be having a major herx from the Diflucan, but my gut tells me there is more to it.

So questions: 1. anyone seen negative response from Clindomycin? 2. chill and see if he gets worse or starts to get better when it is finished at the end of today, while keeping the Azith and Diflucan on board? 3. replace the Clindo immediately with Augmenin, abandoning the plan to try to taper him off of most abx at this point (he would indef. stay on the Azith, alone).

We have been at this for 4 years and I would appreciate a seasoned member's input, please!

Warm wishes for the recovery of your own, Kath

My son used to feel rapid relief from prednisone within 2-3 days. It was like a sign of relief flooded over him. While prednisone is an immuno-suppressant, I've always been told that it take extended use before it will compromise your immune response. 10 days is a normal course for poison ivy and my pedi has always said there's no suppression for many weeks. So I'd guess that what you're seeing is relief from inflammation. It makes me wonder if there isn't a chronic infection of some kind still lurking. I'm glad it's bringing such great results! Not sure why you were trying to lower the zith dose but perhaps this suggests she needs to remain on abx or maybe even a combo abx to continue to treat some source of infection.

Tanna-
 
First exacerbation + antibiotics= all better is not the typical experience of those on this board- so you are not alone.
 
My girls were diagnosed 4 years ago, and are doing great- but are not cured. They live 99% ocd free until an exacerbation, and those can vary in intensity and length, however since the first episode, none have been as bad- I guess since we treat more aggressively.
 
I will say, from our experience, antibiotics alone have not done the trick, my kids have needed immune suppression in the form of pex or steroids.
 
We also did the intensive therapy program at the Rothman Center in FL- which was invaluable in their "recovery". If your son is stuck home due to ocd- he most likely will need excellent therapy in addition medical treatment. When I say "excellent", I am referring to a program like USF, not to a local psych.
 
Hang in there! They do get better!

Mom kept the tick so we're good there. And found a place to test the tick, so we're starting that process. Local Urgent Care will prescribe preventative abx with 72 hours so we're good there. We're touching base the pediatrician, would prefer to have them on board for the process preferably.
 
Need to look into possible interactions between his current Meds (Intuniv 2mg) and the possible abxs he may soon be on.
 
Much thanks everyone.

My kid was on that combo along with Bactrim to fight strep and Bartonella and he did fine. When his strep titers began to fall, his doctor took him off the Augmentin and substituted Cefdinir to act as a prophylactic because it's easier on the stomach. This treatment has been very successful. He is currently virtually symptom free. Strep titers are descending and his bart rash is fading.

I am deeply concerned about the Bipolar dx for a 3 year old. What testing has been done? Has he received all pertinent tests for PANDAS/PANS only excluding the Myco and genetic testing? Myco is a pretty big one - I would get him in to the lab asap for it if you can. Has he been tested for tick borne infection? Is the neurologist a PANDAS specialist? My son was dx at age 2.5 and at no time would I have ever considered a Bipolar dx, although I could see why some of the symptoms might have caused a less experienced eye to try to do so. If you are not seeing one of the 'big gun' PANDAS speciailsts, I suggest you get an appt. and do the traveling if necessary. It sounds like your child's future may depend upon it. He needs further testing for infection and if that stone leaves nothing unturned, then further genetic testing. I suggest that you add an immunologist/PANDAS specialist to the treatment team.

Do NOT accept a bipolar diagnosis in a 3 yr old. I have very strong feelings on this based on my experience with my son. There is an infectious trigger underlying and you will need to get to a doctor able to figure it out or more than one doctor. My son was 5 when he had an overnight change. A neuropsychologist that did extensive testing on him told us he was bipolar 2 secondary to aspergers. I almost believed it. If it hadn't been for the sudden onset after a flumist vax, I might have bought it.
 
Today, at age 9, my son does not have behaviors/symptoms of either bipolar or aspergers.
 
His labs looked completely normal when tested by one of the PANDAS experts. On a hunch, my son was placed on biaxin. Low and behold, he started getting better.
 
Fast forward nearly 3 yrs, he's doing well after a lot of ups and downs and various treatments. I would take you son to see a doctor who knows what he's doing and how to treat PANS in a seronegative child. I also urge you to see an LLMD. One piece of my seronegative child is the discovery of tick born infections never tested for previously and now being treated, so he wasn't truly seronegative after all. It's a matter of testing for everything.

I am deeply concerned about the Bipolar dx for a 3 year old. What testing has been done? Has he received all pertinent tests for PANDAS/PANS only excluding the Myco and genetic testing? Myco is a pretty big one - I would get him in to the lab asap for it if you can. Has he been tested for tick borne infection? Is the neurologist a PANDAS specialist? My son was dx at age 2.5 and at no time would I have ever considered a Bipolar dx, although I could see why some of the symptoms might have caused a less experienced eye to try to do so. If you are not seeing one of the 'big gun' PANDAS speciailsts, I suggest you get an appt. and do the traveling if necessary. It sounds like your child's future may depend upon it. He needs further testing for infection and if that stone leaves nothing unturned, then further genetic testing. I suggest that you add an immunologist/PANDAS specialist to the treatment team.

The editor who writes this weekly newsletter, Caroline Miller, has been very supportive of Pandas. Last month, she removed outdated/skeptical info about Pandas from their website and interviewed a few families from the Pandas community. She then published a nice intro story. I believe she plans to do a follow-up story soon.
I contacted her about an hour ago to thank her for this article and for her support. The best thing we can do is to post comments at the end of the article to show our thanks and to let her know that Pandas families are following/support Child Mind. It would be great to have a second (in addition to IOCDF) large non-profit supporting Pandas awareness/advocacy as well as research (they do/fund a significant amt of research).
 
Please post supportive comments to the article and let Child Mind know we're out here.

With all due respect, I would prefer not to link some of these people to PANDAS. Given my disgust over the way the media, the mother, and others flagrantly identified PANDAS as the primary factor in the Oregon boy's deviance, I would not call so much attention to it at this time. I prefer to move on and continue to call attention to the disorder in other ways that will elicit a more appropriate, thoughtful response from the media and therefor from the community.

With all due respect, I would prefer not to link some of these people to PANDAS. Given my disgust over the way the media, the mother, and others flagrantly identified PANDAS as the primary factor in the Oregon boy's deviance, I would not call so much attention to it at this time. I prefer to move on and continue to call attention to the disorder in other ways that will elicit a more appropriate, thoughtful response from the media and therefor from the community.

BKM I complete agree, my opinion is that it seems that the family/lawyer is trying to excuse sociopathic homicidal behavior with a medical diagnosis that will only cause harm to people legitimately trying to get treatment. It is the worst kind of publicity. There were some mumblings that the Newtown murderer had Lyme, not exactly the kind of publicity the Lyme community needs, and in any case again did not create the sociopath. I would not in any way personally want to be associated with these cases. Not every case of OCD is PANDAS, my husband has horrendous OCD, was tested disappointingly for me, has no infections. just his unbearable psychological makeup/personality. I am hopeful that the scientific community will publish the only thing that really can help swing physicians which is peer reviewed research.

Wow, that's exciting to see a story about progress right away! Also hear you on the fear abu things getting worse before they get better. Things are *improving* with our son through abx but he's still not where he should be. It's easy to say well we can manage like this, who wants to deal with something worse. Of course then we have a flairup and not doing it doesn't feel like an option.