EmilyK

I came across a great blog and book describing what it's like to suffer with OCD. As painful as it is to read, it may help parents and other family members understand what our Pans kids are feelings but can't explain...
 
The Danger of Doubt: The Ruthless and Frequently Misunderstood Logic of OCD 4 Comments | Posted June 27, 2013 Guest blog post by Fletcher Wortmann –
OCD is called the “doubting disorder,” at least among people inclined to give cutesy alliterative nicknames to mental illness. OCD is the pathological intolerance of risk, however minute, and the surrender to protective ritual, however unbearable. I know this because I suffered from severe OCD symptoms for twenty years without my family, or teachers, or even therapists correctly identifying my symptoms. Despite frequent portrayals of OCD in books, television and film, I’ve found many people’s understanding of the disorder is tragically limited.
 
Now, “intolerance of risk” may not sound atypical or extreme. After all, each of us has moments when, against probability and common sense, we attempt to eradicate ordinary uncertainty using our minds.
 
Think about it: You get halfway around the block and realize that you might have forgotten to lock the front door, so you drive back around to check it. It’s near the end of the seventh inning and things aren’t looking good, so you pull out your favorite baseball cap because sometimes it seems to help. You call your child’s phone twice to make sure that she got to the party okay. You cross your fingers, you knock on wood, you wish on a coin or a star or a stray eyelash.
 
Everyone does this. It’s not a problem for most people.
 
But it’s a big problem for people with OCD.
 
Obsession comes from a simple glitch in cognition. Ordinarily, you have a built-in time clock in your mind. After turning over a certain problem for a while, a committee of highly efficient business-people in your brain decides, “okay, that’s probably the best solution we can come up with for now – enough,” and they table the issue and move on. That’s healthy and normal.
 
When you obsess, however, your mind refuses to admit defeat, to accept that you just can’t come up with a better answer. After all, what’s the harm in thinking about it just a little more? And more again? When you suffer from OCD, a sliver of doubt always persists that you haven’t examined the issue from every angle; and so you wrestle with your problem a little longer, trying to find a new solution that reduces your uncertainty and leaves you satisfied.
 
Obsessive-compulsives are taken in, every time, by the promise of one more look at the problem, even if we’ve already worked on it for hours, for days, for months. OCD demands safety and certainty, and the fact that nothing can ever be totally certain is regrettable but irrelevant to its purposes.
 
Sometimes this leads to the physical compulsions so many identify with the disorder. If we have scrupulosity and we’re afraid of God, we may run a rosary until the chain snaps. If we’re obsessed with catching a disease, we may wash our hands over and over again. Eventually the behavior of the sufferer is entirely divorced from reality. Hand-washing is no longer a basic hygienic practice but a magic charm, a banishment cast against the ambiguous, malevolent threat of all “germs.”
 
But these physical compulsions, which so many assume are the greatest burden of OCD, may be only modest indicators of a terrible internal struggle.
 
And, some of the most distressing forms of OCD have no visible signs, no tangible compulsions. I have a variant of the disorder referred to as “Pure O,” or purely obsessional OCD, characterized by runaway intrusive thoughts. With Pure O, the mind is held captive by its worst nightmares: fears that the world is about to end, for instance, or that the sufferer is a murderer or a sexual deviant who could succumb to uncontrollable violent urges at any moment. Whatever the single most inappropriate or offensive thing you can imagine, at any particular moment - Pure O knows what it is, and it exploits it.
 
With Pure O, these problems can not be put to rest through physical rituals like hand-washing or counting. Instead, the sufferer is left obsessing, silently and almost continuously, incapable of finding conclusive proof that these hideous scenarios will not occur. We can not tell anyone, for fear of being labeled paranoid or psychotic, and because our symptoms are internal, people don’t notice, and we’re rarely offered help. As an OCD sufferer, I did any number of asinine, irrational things not because they would protect me, but because I thought they might, and I’d be darned if the one night I failed to properly pray the lord my soul to keep was the night I died before I woke.
 
If a sadistic billionaire decided to gather every Pure O sufferer into an Arkham City of twitching misery, then (according to Lee Baer’s The Imp of the Mind) it would be the fourth-largest metropolis in the United States. Yet the disorder continues to be under-diagnosed. It is the invisibility of the disease that gives it power: because so few can recognize our symptoms and because so many do not understand them, many of us struggle for decades before successful diagnosis.
 
OCD sufferers aren’t straight-jacketed neurotics or treacherous psychopaths or lovable buffoon detectives. We are people who suffer, in a way that is familiar to almost everyone, but to a degree that no one should have to endure. I lost the first twenty years of my life to OCD but I hope that, by continuing to spread awareness of the nature of the disorder, we can bring it out of the shadows and work to alleviate the suffering of so many.
 
Copyright, Fletcher Wortmann, 2013. Author of Triggered: A Memoir of Obsessive-Compulsive Disorder (St. Martin’s Press), named one of Booklist’s “Top 10 Science & Health Books of 2012”.
http://www.fletcherwortmann.com
http://www.psychologytoday.com/blog/triggered

My son has a rapid response as well. Enjoy the prednisone vacation!

Came home yesterday. Has had a few flares...not looking forward to that part, but he's definitely doing better. Have a busy day of getting tested for h-pylori (suspected prior to surgery), home care, and detox at the chiro.

We use Source Naturals methocobalamin (B12) sublingual. I like the sublingual form because it still gets absorbed even if the gut is messed up and the methyl form is more readily used by the cells. Then we used the P5P form of B6, either on its own or from Kirkman's SuperNuThera w/ P5P. I like that product because it has folinic acid instead of folic acid, but it does not have the methylated form of B12.

Originally b12 injections and Klaire Labs P5P. Now we are using Neurobiologix Neuro-immune stabilizer cream. You rub it into the skin once or twice a day. Has 5MTHF(5-methyl tetrahydrofolate), hydroxycobalomin, methlycobalomin, P5P and vit D in it. DS has been using this for about three months. We recently tested his folinic acid and B12 levels and they are still up there (B12 is actually still above range but falling) even though we are not doing the injections or oral pills. Dr Stewart Kendall developed the Neuroimmune cream. DS doc has been seeing good results with it and it bypasses the gut.

I had a bad night last night, riddled with doubt and self-blame, and post traumatic stress. I don't want to rant about it, because we all have those nights, and just knowing that all of you out there have had them and know what I'm going through is comfort enough. Its the stuff that seems to never end that gets to me. The progress is so slow, and it seems so easy to slip backwards.
 
I woke to find this in my inbox- and I know everyone on this board will appreciate the message. We all need to give ourselves permission to put the glass down every now and then.
 
 
 
 
Subject: A Great Lesson on Stress A young lady confidently walked around the room while leading and explaining stress management to an audience with a raised glass of water. Everyone knew she was going to ask the ultimate question, 'half empty or half full?'... She fooled them all .... "How heavy is this glass of water?" she inquired with a smile.
Answers called out ranged from 8 oz. To 20 oz.
She replied , "The absolute weight doesn't matter. It depends on how long I hold it.
If I hold it for a minute, that's not a problem. If I hold it for an hour, I'll have an ache in my right arm.
If I hold it for a day, you'll have to call an
Ambulance. In each case it's the same weight, but the longer I hold it, the heavier it becomes." She continued, "and that's the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won't be able to carry on."
"As with the glass of water, you have to put it down for a while and rest before holding it again. When we're refreshed, we can carry on with the burden - holding stress longer and better each time practiced.
So, as early in the evening as you can, put all your burdens down. Don't carry them through the evening and into the night... Pick them up tomorrow. 1 * Accept the fact that some days you're the pigeon, and some days you're the statue!
2 * Always keep your words soft and sweet, just in case you have to eat them.
3 * Always read stuff that will make you look good if you die in the middle of it.
4 * Drive carefully... It's not only cars that can be recalled by their Maker.
5 * If you can't be kind, at least have the decency to be vague.
6 * If you lend someone $20 and never see that person again, it was probably worth it.
7 * It may be that your sole purpose in life is simply to serve as a warning to others.
8 * Never buy a car you can't push.
9 * Never put both feet in your mouth at the same time, because then you won't have a leg to stand on.
10 * Nobody cares if you can't dance well. Just get up and dance.
11 * Since it's the early worm that gets eaten by the bird, sleep late.
12 * The second mouse gets the cheese.
13 * When everything's coming your way, you're in the wrong lane.
14 * Birthdays are good for you. The more you have, the longer you live.
16 * Some mistakes are too much fun to make only once.
17 * We could learn a lot from crayons. Some are sharp, some are pretty and some are dull. Some have weird names and all are different colors, but they all have to live in the same box.
18 * A truly happy person is one who can enjoy the scenery on a detour.
19 * Have an awesome day and know that someone has thought about you today.
AND MOST IMPORTANTLY
20 *Save the earth..... It's the only planet with chocolate!* I THINK !!!!
Today someone asked me if I liked you. I laughed, and I said, "Ha! That's funny!! I absolutely LOVE that woman!! She's funny, caring, crazy as heck, sweet, beautiful, she's reading this email right now & I love her!!"
Be the kind of woman that when your feet hit the floor each morning the devil says~~ "Oh Crap, She's up!"

My son (10), who has been the sicker of the two kids, used to complain about all the pills. Twice, we've had to stop all supps for a week each time to do urine tests. He felt so bad at the end of the week that he now considers the supps as important as air. He now gets that he needs them. So when he complains (and I totally understand how it sucks for a kid to have to take so many pills), I tell him what each one is for, tell him which ones aren't negotiable and then let him decide if he wants so skip any of the remaining ones. Usually, he'll decide to skip one or two and then after all the others are taken, he'll shrug and say "what's two more" and pop those two in as well. For him, he just needs to feel like he has a small vote.
 
My daughter, (8) maybe because she feels less sick and because the pills don't have a dramatic impact (she has a thyroid issue causing fatigue but no supps have resolved it thus far and labs don't justify thyroid meds at this point) - she balks more. If I give her a choice, she won't take any of them. So the approach I use with my son won;t work for her. Instead, I tell her that her health doesn't only effect her. It effects everyone else in the house too. That it may be her body, but it's our family and we get a vote too. When she moves out, she can make different choices. But as long as she's in "my house" (yes, I sense my mother laughing at that) she needs to play her part in making the family function. Sometimes, I'll let her negotiate away a pill - like a vitamin D where missing one dose won't make a huge difference. That at least gives her small comfort. Sometimes, I'll give her a window - ok, you don't have to take them right now, but they need to be in your body before lunch.
 
It is far easier with younger ones. A 16 yo with a large weight gain and an even larger chip on her shoulder has got to be maddening. But if she doesn't take her meds, the family suffers the consequences, not just her alone. So that can't be an option. Instead, can you set up a set of consequences that impact her alone? Like, no meds = no internet/phone/ or some other thing she holds dear? Frame it not as a punishment but as a choice. She has a choice to not take abx but there's a natural consequence to that decision - a consequence that hurts. Then let her suffer that consequence. She's bound to test you to see if you mean it. Follow through. It can't be you pushing. It has to be her choosing.
 
In the movie Silver Linings Playbook, Bradley Cooper refuses to take his meds for bipolar because he hates the way they make him feel. His parents plead but he won't do it. At one point, he goes into a manic episode that threatens to put him back in the psych hospital. The imminent punishment makes him compliant. Later, he falls in love with Jennifer Lawrence and doesn't want to screw it up. He realizes that he needs the meds if he's going to have the life he wants. I don't think he ever comes to love the fact that he needs them but he accepts them as a necessary evil. Somehow, your daughter has to be brought around to understanding that.
 
There's a really good book about OCD called Talking Back to OCD by John March. He makes the point that the parent can't fight the OCD. Only the teen can do that. The parent's job is to be the coach. But the teen has to own the problem and the treatment. You may want to get the book and use it's message to help you find a similar approach to the med problem. It really helped me shift my perspective.

A few of us are looking at setting up a RI chapter of PANDAS Resource Network. And I'm grateful that my work and boss continue to ask me for help raising awareness for the schools.

Hi- don't know if any of you got the chance to read through Buhner's new book on Mycoplasma and Bartonella, but I've spent the last few days in it and found it extremely interesting,
as he details how the infections affect all the different cells and systems in the body.
 
Myco is not our issue, I spent most of the time on the Bartonella part, researching some of his recommendations,
but 1 bit about Myco he emphasized:
Mycoplasma infections, especially of long duration, are first and foremost nutrient deficiency diseases.
The bacteria utilizes so many nutrients from the body, replacing the nutrients is really, really important.
In bold he wrote: Meat proteins are essential.
 
There is more, but for Myco, I thought this book offered valuable information.

Byron White makes an A-Myco formula,
and Stephen Buhner just released a new book
Healing Lyme Disease Co-infections: Complementary and Holistic Treatments for Bartonella and Mycoplasma.
Also, Researched Nutritionals had a supplement Transfer Factor PlasMYC.
I did herb tinctures and some Researched Nutritionals supplements while on antibiotics for infections.

IgG titers are also of concern and their directional movement is important. A highly elevated IgG in absence of IgM can just mean its a very chronic mycoplasma infection. I've been treated for mycoplasma almost 3 years and still positive. General combo'd antibiotics for Lyme treatment should provide enough coverage to deal with the mycoplasma infection. However, you can add some herbal remedies to help address like A-Mcyo by Bryon White, Olive Leaf Extract (also good anti-viral).

We are Myco P warriors also. Been fighting it for 2 years. I think we may be about to win this battle. What are the IgM titers? It will take a very long time to see IgG titers drop. We saw nothing on IgG for over a year either. What we saw first was a VERY gradual decline in IgM. The first year my daughter took Zith, then she took Biaxin. When we started seeing an LLMD, they put her on Minocycline and Cefdiner. She had a huge herx from that but her IgM titers really started to decline after that. We did that combo for about six months and then they wanted to switch her over to Septra & Amoxicillin. Ended up she couldn't tolerate Septra and we were never able to get her up to the optimal dose. We later found out she has a SNP that prevents her from metabolizing sulfa drugs. So currently dd is on Zith, Rifampin, amoxicillin. In January, her IgM titers were in the high normal range for the first time, but her IgG levels were still high. This was the first time though that her IgG levels ever read anything other than >5, so obviously we are headed in the right direction.
 
So what you need to look for is trending in the IgM titers because that indicates the status of the current infection. You may need to consider a different antibiotic combo. How are her symptoms? Is she doing better? If you aren't seeing any difference in symptoms then I think you absolutely should think about different antibiotics. Best of luck.
 
Dedee

Thanks so much for the response. I made an appointment with Dr Latimer for September. If anyone has any suggestions in the Southeast of who we could see in the meantime, I would appreciate it.

I've chosen not to respond to the recent thread about what Pandas is or isn't, can or can't provoke in terms of behaviors. But one thing became very clear from that thread - the intense frustration and pain that every family feels as a result of this illness and the controversy/stigma/lack of progress over the past 2 decades.
 
No matter how much time goes by since joining this community, there has always been unanimous agreement on the need for More...
More awareness
More research
More compassion/courage/acceptance/support from local practitioners
More consensus on treatment protocols
More insurance coverage
More ERP therapists
More answers
 
In the past few years, some very brave families have shared their stories with various media outlets, some have worked behind the scenes with researchers or existing non-profits, some have created/joined non-profits specifically for Pandas. It seems we each have things we're good at, things we're able to contribute. Whether it's sending a PM of support to someone who's really struggling, sharing a personal story with the media or organizing a national march on Washington, we all have a responsibility to help our kids and those who come after ours to make the path easier. We can - and should - all play a part, regardless of our financial situations. We all have gifts to share.
 
I just came across this organization that seems to have the right idea about cutting to the chase:
http://fastercures.org/
 
If your frustrations have been stirred up, please consider supporting one of the Pandas non-profits, the IOCDF or ACN (which is also a non-profit) with either a financial donation or some volunteer time or some constructive ideas on how you'd like to see things evolve, or just your continued support for this forum. Pay it forward. We all need to act.

You may want to contact Pandas Network for literature. They are a NIMH Outreach Partner and may have literature from the NIMH that would be applicable.
 
I used to spend a lot of energy trying to educate teachers about the disease. Lately, I've had much better success glossing over the details and just focusing on what symptoms to look for and what tools they can use in the classroom. I now tell teachers "You won't see the OCD - he'll hide it or make it look like a fidget. You may or may not see the dysgraphia, you may chalk up small signs of adhd to being a boy. But you'll know he's in a flare when it dawns on you that you've uttered his name 50 times today. As in "D, sit down. D, pay attention. D, worry about yourself. D, stop talking, D, pencils are not swords..." It will suddenly hit you that you don't normally say his name as much as you have this week. You won't see a flare, you'll hear your response to it."
 
So my point is to highlight that changes can be subtle and not out of the bell curve of normal for any group of kids. What will be notable is that you'll see a conglomeration of changes all at once that are abnormally intense/different for my particular child. He will be outside his own bell curve of normal.
 
I would include dysgraphia and the suggestion to use graph paper in math or to add a lightly printed grid onto worksheets
allow frequent bathroom trips, regardless of whether you feel they're necessary. They often are.
highlight that adhd appears or intensifies in a flare
Suggest that if they find themselves scratching their heads over a child who started the year on track but now seems to need meds for adhd, or is suddenly not the same student, consider Pans.
 
I would print out the article on the IOCDF site http://ocfoundation.org/PANDAS/ and the article by Tom Insel http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-and-pans.shtml and http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml
 
This one is old but one of my favorites http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2413218/ What every psychiatrist should know about Pandas - great overview.

I'm making my PANDAS awareness to do list as it pertains to my work at the RI dept of ed and here are some of my initial thoughts for a to-do list:
 
info packet on math and writing learning disabilities and connections to PANDAS/PANS for special ed directors and school psychologists (I'm point in our office on developing guidance to school districts on learning disabilities, other health impairments, and emotional disturbance in the state)
 
awareness brochures and or table display or something at an upcoming statewide summit on social emotional health being co-host by Bradley hospital and RIDE August 2nd (we're inviting school district leaders, reps from school guidance programs, social workers, psychologists, school resource officers, and more and working with CASEL on putting together the day with the goal of developing a statewide action plan to support social emotional education in our schools in RI)
 
continue the stream of info we've started to school nurses and special ed directors and to heads of school psychology programs at URI and RIC
 
build parent resources related to PANDAS at both the RI Parent Information Network and Parent Support Network
 
bring awareness to the RI Special Education Advisory Council facilitated by my co-worker
 
get in front of legislators with educational and mental health interest - this needs more thought of course, but it won't be hard for me to connect
 
I'd welcome any suggestions, angles, critical pieces to include, things left out in my thinking.
best,
Emily

I so agree! And thank you for sharing what is still probably a painful memory for you. Who diagnosed Grant as a sociopath? He did not blow anybody up. I haven't even seen anything that says he's assaulted anybody. He had an obsession w/ columbine and bombs, even built some bombs. But everybody is treating him as though he carried out an attack.

I know I've not been posting much lately, but I feel a need to chime in here. My son is 16. Grant is 17. My son had a major exacerbation in 2011. So did Grant. My son had severe OCD that made it difficult for him to get to school. So did Grant. I struggled to find help for my son. So did Grant's Mom.
 
My son's exacerbation was so bad that he had to be hospitalized in a psychiatric ward. We had a file at the local police department so they would know what they were dealing with when I called them in the middle of the night to come and help me put my son to bed. My son never hurt another individual, but he posted horrible things on facebook that he SAID he did - though he never ACTUALLY did any of them. I don't know if it was hallucination, fantasy, or OCD. He listened to depressing, gruesome music and fought with me constantly to wear his hair and clothing in anti-social ways. It is hard for me to sort it out. I just know it was horrible ... fast. One police officer told me my son needed to go on PINS and that I needed to get the justice system involved. Thankfully, it never came to that.
 
I changed insurance so my son could get IVIG and be treated by experts all around the country. I was very fortunate to have that option. Slowly, with each doctor, we made modifications in his treatment. Slowly, slowly, slowly, he came back.
 
Today my son is a loving, kind, even-tempered and humerous young man. He still struggles with fatigue and brain fog, but overall he is a very likable kid with a big heart. When people hear who my son is the first thing they say is "what a nice kid". My son received treatment. Grant did not.
 
I do not know what would have happened to him if we could not get treatment. I have no doubt he would be in trouble with the law.
 
Can untreated PANDAS become antisocial behavior? I don't know.
 
I do find it interesting, though, that many people in the PANDAS community have gone to great lengths to support the families from LeRoy and the families at Boston Children's when the doctors have said "this is not PANDAS"... but we are so quick to turn away from a controversial case when it is not pretty. No, we do not want our children associated with antisocial behavior... but if this IS the result of untreated PANDAS then it is best that we find out soon!!
 
I am wondering why we are not screaming at the top of our lungs to find out if Grant has PANDAS and if immune treatments remove the antisocial behavior. Is it possible that a portion of the children in juvenile detention centers could be helped with antibiotics, steroids, and IVIG? Wouldn't that be amazing.

Have any of you ever tried Clonidine for yourself or your child? Clonidine is a BP medication. My doctor wanted me to try it bc I am such a basket case and am beyond anxious. Her theory was that if your BP is automatically lowered, then your anxiety will follow. I've been taking it on an as needed basis for a few months. I think that I (Like all of you prob) am SO stressed out, that this will never touch my anxiety. But what it does do, is at it's highest dose, is knock me right out for sleep. And I never sleep anymore, so I love this drug. And I now have high BP from all this stress anyway.
 
Onto the children. I told our ped the GPs thinking on Clonidine and anxiety and said I wanted to try it on my PANDAS daughter and she prescribed the lowest dose for her. I saw no improvement and stopped using it. Last night I told DD she had to sleep in this morning (yeah, right!!!) She asked me to giver melatonin, but it was way past an appropriate time for that. SO I pulled the Clonidine out and gave her a whole pill (the dosage is for 1/2 pill). Next DD comes out and can't sleep either. I gave her a half of the pill. My entire house, including DH is asleep right now. Exciting, yes!!!!! Coffee by myself. However, when will they wake up? 7 pm?
 
So, I looked up user reviews on Web MD and this drug is used for Autism and ADHD. I had no idea!!! And this drug calms down rages and helps the non sleepers sleep.
 
I only get on here now and then, so if this is old news, sorry. But when I have a house full of sleepers, I want you to have it too.
 
Love,
FA

I totally agree with DCMom - you were right to be upset about his doing something he clearly knows is not ok - he doesn't get a free pass just because of an illness. And tho we've not done it, I've never heard anything but amazing raves about the USF program. It sounds like your son could really use some tools taught by some top notch experts.
 
The other thing is this - your son needs to learn that people are not saints, his mother is not super-human and he has a responsibility to consider other people's needs, regardless of illness. The world does not revolve around him and his disease (which by its nature is a selfish and demanding beast). Flipping out teaches a lesson - yo, dude - I am not Mother Teresa. You are not free to do whatever you want. There are consequences. I have needs and feelings and buttons that get pushed and there are boundaries you cannot cross. Get over yourself and start taking responsibility for your actions. The rest of the world expects better from you and so do I.
 
So don't beat yourself up. I think you did the appropriate thing.

Thanks everyone. I spoke with his psychologist and she agrees we should seek medical treatment (i.e. IVIG) first before going down the path of partial hospitalization(especially if symptoms are PANDAS related, she agreed psych meds wouldn't help). i think she was just getting exasperated with her lack of progress with him. I think perhaps she is not the best fit at this time...he's very good at diverting and getting off topic and he needs someone a little stronger to keep him on topic and recognizing his behavioral issues and working toward correcting them. Although he's always had some level of anxiety, the odd outbursts and behavioral issues are new this year, and he doesn't like to talk about what he doesn't want to talk about. Since she's also out-of-network, if she's not making progress, it's best for us to save our $$ toward what may be out-of-pocket for IVIG and find an in-network therapist (and I did get a recommendation, so we'll see how that goes)
 
Regarding the pencil incident-that was pre-Clarithromycin. I actually think he's been better since he changed to that antibiotic. We've had a really good week. He's been cooperative. He's gotten off the XBox when I've asked him to, been ready for his various activities (piano, swimming, tutoring) and generally been in good spirits.

I read the book months ago. Like PANS kids, if it weren't for her parents, she would not have been properly diagnosed.
 
Pandasphilly- when I was reading the book I kept wondering why our kids cannot get the treatments that Susannah Cahalan received. That treatment is now recognized as standard treatment. It's a "new " disorder. Here our kids still are struggling for treatment and insurance coverage and acceptance. Doesn't seem quite right.

Starting age 6, I got strep throat for the first time. Started off being nothing out of the ordinary, but by age 8 I would have strep throat 80% of the time. Doctors would just give me antibiotics send me my way and within 3 weeks I'd be back in there office with strep again. Aggravating, but nothing too terrible until one day I woke up screaming in my bed. My mom said I looked possessed and was saying words and sentences that just did not make sense. She took my temperature and it was 106.9 degrees. I remember hallucinating seeing demons and the world did not look like the world. My mom managed to cool me down with wet wash clothes and returned me back to normal. So now every time I would get strep, I would also get high fevers and become delirious. This happened for about 2 months when one night I was spending the night at one of my friends house and I thought I was going to become delirious. Turns out this time, I did not have a fever, but I knew something was not right. Walking back into my friend's bedroom, I collapsed on the floor and had my first seizure.

Overnight after the seizure, I started having eye twitching and neck cracking tics. Things kept getting worse and worse until I was diagnosed with Tourettes Syndrome and OCD about 4 moths after the seizure. I had loud vocal tics which sounded like a fire alarm and dolphin noises (you know the teachers loved me haha). My OCD symptoms were liking to touch my joints such has the inside of my knuckles, elbows, and knees. Also my smell became much more sensitive. If I didn't like a certain smell, I could not get near it without gagging. So around age 9 all the doctors were wanting me to try medication that could or could not have helped. My mom and I decided we weren't going to mess with medicine since none of it was actually proven to be effective at the time (I think this was in 2003). My mom was doing research on the internet when she stumbled upon an article explaining how there was a theory that streptococcus could cause Tourettes and all sorts of other stuff. We went to the doctors with this information and none of them took it seriously. To them PANDAS was just nonsense.
 
So instead of medication, I started seeing this great Psychologist who helped me find ways to ease my tics and compulsions. She helped me find ways to relax when tics were flaring up or in situations where I could receive public scorn. Meanwhile, I was still attending public school and my grades were dropping. Before PANDAS I was incredibly good at math and then it was like my brain just turned off the ability for me to do it. Everything that was happening, I could notice. I had extreme self awareness which really helped out when I explained my situation to others. Peoples jaws would drop when a 9 year old would explain to them that I had Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. Because of good friends who would back me up, no one ever bothered me about my tics or compulsions at school except for substitute teachers.
 
My mom and I eventually decided to visit an Ear, Nose, and Throat specialist who wanted to get rid my chronic strep throat. He could see that my tonsils were full of bacteria and said we should remove them and my adenoids. I got them removed and all of my Tourettes and OCD started to decrease. When a year you couldn't even tell l had Tourettes or OCD and it remains the same way to this day. Everything took time, but everything I lost to the PANDAS came back including my math abilities. To this day I have not had a single case of strep throat again and I have only one or two tics that come only during stressful times such as exams and even then only last for literally minutes. Certain sicknesses can trigger tics also. For example if I have a runny nose, I will develop a small nose twitch tic.
 
I never took any medications, supplements, IVIG, or anything. Just had my tonsillectomy and found ways to relax my tics/compulsions.

Her daddy and I were outside working on a downed tree for a few hours today. Kiddo was able to be inside (cold and rainy here) playing her Nintendo or reading books by herself for the whole 3ish hours. I checked on her frequently, but she never got upset, never melted down, never ran outside screaming bloody murder, and seemed to be having a good time on the whole.
 
Like everyone here, I am all for almost anything that allows her to feel comfortable, relaxed and reasonably happy. I would recommend any one dealing with moderate to severe anxiety to give it a try. I am sure it will not work for everyone, and it may not work for us forever, but it is working for now and for that I am unbelievably grateful.

I posted this first on October 5th 2008 in response to a number of papers being released. http://www.latitudes.org/forums/index.php?...st=0#entry26571
 
Our pediatrician forwarded a set of papers to me from the June issue and October issue of Pediatrics saying "these say PANDAS doesn't exist". That is not what the papers say but it looks like people read abstracts or titles and not papers.
 
I thought I'd spend a moment here about the papers, the methodological flaws and the actual conclusions of the papers in case someone brings any of these up to you:
 
The papers are:
Kurlan and Kaplan's June 2008 Pediatrics paper entitled "Streptococcal Infection and Exacerbations of Childhood Tics and Obsessive-Compulsive Symptoms: A Prospective Blinded Cohort Study"

http://pediatrics.aappublications.org/content/121/6/1188.long
Singer's article in the same journal titled "Serial immune markers do not correlate with clinical exacerbations in pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections." http://www.ncbi.nlm.nih.gov/pubmed/18519490
Lin, Kaplan and Leckman's October 2008 paper "Streptococcal upper respiratory tract infections and psychosocial stress predict future tic and obsessive-compulsive symptom severity in children and adolescents with Tourette syndrome and obsessive-compulsive disorder." http://www.ncbi.nlm.nih.gov/pubmed/19833320
The first thing to know is that all of these papers are studying the same set of subjects. There are basic recruitment flaws to all three papers.
 
Problems with the papers
 
The papers have 7 major methodological flaws:
The studies are about long-term tic disorders in older kids (11-12) and not about sudden onset PANDAS or symptoms in younger kids (mean age 7.5).
This is study about children with long term chronic tics who had onset over 3 years prior. 75% of the subjects in the proported PANDAS group were diagnosed with TS (i.e., had symptoms for > 1 year and no remission for > 3 months). The sample is pulled from the longitudinal study by Kurlan reported in the same issue of Pediatrics.
 

The study did not indicate how many of the children had already hit puberty with the massive hormonal and immune changes that occur.

Multiple studies indicate that progestrone and other hormones affect the T helper cell regulatory response. Kirvan and Swedo looked at sudden onset in pre-pubescent children and thus if this was not controlled, this brings even more question into whether the sample is valid.
 

The diagnostic criteria used by Kurlan for his proported PANDAS group is not the same as used by Swedo or Snider.

Kurlan used a "clinical course characterized by the abrupt onset of symptoms or by a pattern of dramatic recurrent symptom exacerbations and remission". Swedo used an "Episodic course characterized by acute, severe onset and dramatic symptom exacerbations." (emphasis added) While these sound similar, they are not. Indeed the episodic nature is the key distinguishing element in Swedo's studies as is the severity of the symptoms. Swedo wrote in her May 2003 response to Kurlan, "The episodic, relapasing-remitting course of the PANDAS subgroup is distinctly different from the undulating, waxing-waning course seen in other patients with OCD or tic disorders." In addition, Singer discloses that the average onset was over 4 years prior to his study. Kurlan discloses that the onset was not from documentation, but rather obtained through interviews thus being very prone to recall bias. So it is unclear whether the proported PANDAS subjects met the Episodic course, the severe onset, and the dramatic symptom exacerbations of the Swedo critieria.

The subjects exhibited no OCD behavioral changes and are different from Swedo's/Snider's subjects

The subjects attributed to be PANDAS subgroup in the Kurlan and Singer studies had a CY-BOCS score that changed only 1.6 [-0.4 to 3.6] (i.e., no change) with controls changing 1.0 [-1.1 to 3.1] (i.e., no change). This is hardly episodic given the baseline CY-BOCS scores and certainly does not indicate remission within the 2 year period but rather the small waxing and waning of OCD symptoms and the limited objective accuracy of the CY-BOCS measure. Swedo subjects often exhibited > 15 points of change in CY-BOCS score. Granted, I have some issues with these studies as well, but this 10 fold difference in CY-BOCS measured exacerbations definitely makes one wonder if these are the same subgroups.

The subjects have high tic exacerbations but not OCD exacerbations.

It is true that the subjects in the Kurlan/Singer studies had YGTSS-tic exacerbations of 11 pts [4.2-17.9] and certainly this is significant, but most of the other papers on PANDAS focus on the OCD element and less on the tics. So this begs the question about whether the study was more about Tourette's and association with streptococcal pyogenes rather than PANDAS. It also begs the question whether Swedo's criteria should include tic-only exacerbations. It also begs the question whether chronic tics are fundamentally different than onset.
 

The subjects were all on numerous anti-psychotic, alpha-agonists, and mood stabilizers.

It is totally unclear what these effects had on the subjects and how these variables were controlled. Did this suppress the OCD response?
 

The blind was broken by informing pediatricians if the children cultured positive for GABHS

While this is understandable, it defeats the actual study. PANDAS is thought to be similar in pathogenesis (cause) to Sydenham Chorea where symptoms emerge after untreated streptococcal infection. Multiple studies show that treated GABHS infections lower the incidence of ARF and SC. Given the similar pathogenesis, is it a wonder that treated GABHS would not yield increased exacerbations?

This is a long way of saying that I don't see how they can reach any conclusion regarding PANDAS given that their kids don't seem to be PANDAS subjects but rather Tourette's subjects.
 
I have numerous other issues including sampling theory problems, but the key question is how many of the kids in Kurlan's and Singer's studies actually had PANDAS as opposed to being kids with severe Tourettes with the unfortunate waxing/waning of tics associated with Tourette symptoms.
 
Best regards,
 
Buster