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Success Stories? Survivors of Severe OCD?


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Having a stressful day and could use some inspiring stories.

 

Any teens that survived Severe OCD after probably suffering from PANDAS for years and years?

 

DS is 15 and stuck at home since January 24, 2013. He is doing microscopicly better and we are now focusing with some success (at least as far as titers go) on Coxsackie, Strep and MycoP. We are awaiting results of Dr. Cunnigham's test, an appointment with NYU's neurological team, etc.

 

But in the meantime....

 

Anyone have a link to some inspiring stories?

 

Only finding the typical stories of first exacerbation+antibiotics=all OK.

 

Sorry if I sound bitter.

 

Thanks in advance,

T.Anna

DS15

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I am so sorry you are feeling down and bitter. It's ok to feel that way though. We all do at times. I am feeling it a bit too. My oldest son is now 17. He was 6 when he first started with severe OCD and he suffered for years. Back then there wasn't much known about PANDAS. My pediatrician did at least realize it was related to the strep but didn't know what to do other than send us to a psychiatrist. So for years we just treated the strep when it came up (with usual 10day course of antibiotics) and we used SSRI's for the OCD. When he was 11, he had strep 4 times in a 2 month period and things escalated and his tics started and were horrible. That was when I took matters into my own hands and insisted he have his tonsils removed and we finally found a PANDAS specialist 12 hours away to see. It took some work, but now at age 17 he is pretty much OCD free except for a few issues with sensory eating. He is a straight A student and looking forward to his senior year of high school. He still has some moodiness and a tendency to get down sometime but his genetic profile shows defects in that direction. Compared to the 6 year old kid who couldn't go outside because of germs, or eat off of plates or use forks, or touch certain objects, and had to wash his hands excessively, etc... he is doing very well. Also, we took him off of antibiotics last year after being on them for 5 years straight and could not tell any difference.

 

Not sure if that is helpful or not. Can't say there was any one thing we did that helped. Having his tonsils out and starting antibiotics regularly was certainly the starting point. After that was simply supplements and time. Antinflammatories help during flares. I sincerely hope that you start seeing some improvement soon. I know how stressful this can be on a family. Best of luck.

 

Dedee

Edited by Dedee
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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!

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T.Anna --

 

My 16yo DS was far, far from PANDAS+OCD+abx = fat, dumb & happy! <_< But we have come out of the tunnel, and you will, too!

 

My DS took abx for 2 full years, had one steroid burst, continues with some supplements and meds, and has never, ever -- at least not in the last 4 years -- stepped entirely away from ERP therapy. We're now down to once per month with the therapist, mostly to brush up DS's skills and catch the therapist up on developmental changes, school issues (if any), etc.

 

But the exposures continue at home . . . not every day, but when the need arises. Still, he's subclinical with his OCD now, enjoys his life, has a summer job for the first time ever, helps around the house, etc. This is a far cry from when he was at his worst: screamed like a banshee in the shower, paced the floor all night, couldn't speak in full sentences, etc.

 

The right medical intervention is absolutely essential, but even when you find the right medicines or even the right combination of medicines, therapy is also critical, IMHO. All these avoidance behaviors, compulsions, etc. . . . they are unlikely to simply melt away with returning health. He will need to learn how to replace that avoidance and those compulsions with healthy, constructive behaviors, and therapy will teach him how to do that, and also train you in supporting him.

 

Hang in there! Unfortunately, it is not a sprint; it's a marathon. But once you're properly "geared up" and have your support team in place, you can and WILL finish! ;)

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Thanks as always. I read your responses to DH and it made us feel much better. Our stress (in addition to having a sick child) is that we want to make sure we have a plan wit hthe school that if DS gets more functional in the summer, we have a way to get him back with his peers and not left back (with a rather unsavory grade).

 

According to his most recent blood work, the majority of numbers are going in the right direction:

Strep is down ADNAB from 523 to 300 and ASO 229 to 157

MycoP from 194 to 132

Coxsackie went down but now went back up (we stopped valtrex for a two weeks, becuase we had a few negatives)

 

I spoke with Dr. Storch who strtresed that ERP will only work if DS is very involved. I think we may need something like PEX to help that happen, but feel more optimistic.

 

We will have our Cunnigham results on Tuesday and I hope that will also help with a plan. If not, July 3, we have a full work up appt with NYU.

 

I think some of the backsliding was that we stopped the Luvox and perhaps it was helping a tiny bit with the OCD. Overall, he is so much nicer and relaxed and no self harming, that I'm glad we came off it, but still wish we could find something else that works.

 

Thanks again!!!

T.Anna

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I can't comment on success stories for teenagers, because mine are only 5 and 7. But I can share my personal story.

 

Both Dr. B and Dr. M have told me I likely had PANDAS as a kid. My clinical history included multiple strep infections each year (usually 6 or more) through college, hospitalized more than once for IV abx b/c they were worried about it progressing to RF when they couldn't get rid of it, etc... My freshman year of college I was hospitalized for blackouts (losing time - think Susannah Callahan in "brain on fire") but after a week in the hospital, they found nothing and I wasn't having episodes anymore. Ironically, after that, I can't remember getting strep anymore.

 

I was also what my mother called at the time a very "emotional, challenging, and quirky" kid. They always attributed it to the fact that I was very smart, always several grades ahead of my peers in school. In hindsight - the OCD was obvious (for example as a child, having to sleep with EVERY doll/stuffed toy in the bed with me and have my parents say goodnight and tuck each one in - by name, and having to start over if they messed up, or heaven forbid one fell out of the bed during the night). I remember going into my parents bed at night well into my jr. high years, progressing to not sleeping at all and staying up all night watching TV. As a teenager I would "hide" in my closet - it soothed me. I won't even go into the strange things I actually did AT school (like carrying around a small Elmo stuffed toy to "consult" on answers with in class - yes, I seriously did this. It is forever memorialized in my 11th grade yearbook). I was very much at odds with my parents, lots of fighting and running away - but I had a very happy, stable, healthy home life - nothing that would prompt a "normal" teenager to that type of behavior. Outside of these "episodes", I was always described as a good kid, a favorite of the teachers and other kids parents, etc... so looking back, it's amazing to me how out of character some of these things were. As for some of the weird things I did - my friends just thought I was being "funny". I had lots of eating issues, revolving mostly around texture, and getting me to wash my face daily was a nightmare because I hated the way water felt on my face (or any moisturizers either...paying for that now!!!)

 

I am now pushing 40, with 2 PANDAS kids of my own. I have been diagnosed and treated for clinical OCD (extensive cleaning and ritualistic cleaning of my house being my primary issue). After realizing I likely had undx (and therefore untreated) PANDAS as a kid - I started looking back at my childhood and teen years more circumspectly. I honestly can't say I had a bad childhood, or even high school experience. Sure, I was picked on occasionally, and had MAJOR drama with my parents especially in HS - but looking back it never seemed to me to be no more or less than a typical kid. Knowing what I know now, of course, I can't really say that anymore, I'm sure that there were many things that weren't "normal" - but I never really noticed them - either at the time or looking back.

 

If I had to point to one thing I look back on and wonder if it's PANDAS related or not, it's that I never really had many "close" friends. I was well liked at school, and had a very active social life, but I sort of floated around among all of the different social "groups" - welcomed in all of them, but never really hanging around one group long enough to get too close. As a result, I only have one friend that I have remained in regular contact with from my ENTIRE childhood - a HS friend, and we didn't even become close until after HS graduation before we started college.

 

The only long lasting effects I can see from years of untreated PANDAS are my clinical OCD dx and I still have sensory issues (still can't stand water/moisturizer on my face, although as an adult I am more able to suck it up on the face washing part anyway), and food textures are still bothersome. But I feel that had I had treatment, I likely wouldn't have these issues today. And let me point out - none of these lingering after effects have prevented me from leading a full, happy, normal life. They are not debilitating in any way. Heck - the house cleaning thing would appear to be a blessing with 2 kids who react so badly to getting sick!!

 

Thinking about this always gives me hope - because if I could grow up to be a happy, functional, contributing member of society after growing up with this disease - than there is hope for my kids, who have gotten early intervention and early treatment - as well as all of the kids who haven't been so lucky to get early intervention like my kids did.

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I was inspired today... took my dd8 to a 'pop star' birthday party, where she allowed a hairdresser to color and up- do her hair, put on a fancy, sparkly dress, and danced freely with her friends to loud music and strobe lights for 2 hours.

I nearly burst out sobbing.

This is the child who sat in preschool with selective mutism, a blank, scared face, unable to speak above a whisper.

Had 1 shirt, literally, she was willing to wear for 6 months straight.

Who used to run terrified of the vacuum cleaner, hair dryer, any loud noise.

Who, at the beginning of kindergarten, wore the EXACT SAME outfit, every single day, for the first 21 days in a row.

It was the only way I could get her to attend/out the door, without a complete and utter nervous breakdown.

I washed that outfit every night, and tried not to trip on what the other moms must be thinking about me.

Who would not let ANYONE touch or cut her hair, for years.

 

So, there is hope. Keep plugging. There will be good days, there will be some success. It may not always be what you think it should look like, but keep working, and it will come. Fits and starts sometimes, too...

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T Anna - My son is also NOT the simple "strep throat, lots of handwashing, 1 month of antibiotics, all is well" PANDAS case that many people think of when they think of PANDAS.

 

My son had chronic sinusitis since birth. I believe he had his first PANDAS exacerbation at 18 months after adenoid surgery. It is hard to say for sure since he did not have any language at the time, but I remember that his personality changed SHARPLY after the surgery - I remember the wide, dilated eyes, the need for me to be in his bedroom when he went to sleep at night, excessive hyperactivity, and excessive biting after that. From that point until 7 years old we lived an emotional roller coaster whereby his behavior was only manageable when he was on very strong antibiotics. (usually 20 days at a time). At age 7 he had his tonsils out, and the chronic sinusitis lessened as did the PANDAS symptoms - only to return at age 12 after swine flu. It seems the swine flu came when was also harboring a cyst in his sinuses and (we now believe) a bartonella infection with immune deficiencies developing... and that exacerbation culminated in a few weeks of inpatient psychiatric hospitalization at age 14.

 

He is now 16 and is actively treated for his immune deficiencies and bartonella. He is a kind, mellow kid - but is fatigued much of the time and is not very physically fit. His OCD is manageable and he has a great counselor he works with twice per month. He went to school part time this year and we are hoping for full time in the fall.

 

We continue to explore illnesses with him, and recently started working with a new neurologist who is doing an MRI and treating his chronic headaches.

 

Our road has been long and there have been many painful, lonely nights when I have agonized over his future. Right now, though, I am hopeful. His symptoms are manageable and if we can continue down this path he will be a functional adult. He is kind, funny, friendly, and generally happy. He has interests that he enjoys. I consider him a "success" story, though my definition of success has changed through the years. He is not in sports, not in clubs, not in the orchestra, and not on student counsel.

 

I hope you will soon feel relief from your own pain and agony. It is not a simple course but there are many of us here to help, though each child is unique. Please keep us posted on your progress.

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There are success stories; although ours is still being written. DS, was terrified of storms, birds, even clouds (that could become storms). He was always wanting to get even for a perceived wrong. He also was very defiant and did not understand why he had to do chores as part of the family unit. Today, he is taking IV medication for Lyme, oral medications for Bartonella and yeast, and an antidepressant. While his grades do not match up to his potential; he no longer qualifies for an Autism diagnosis, he will play outside with his dog, walk the 1/4 mile to his grandmother's house alone and does not have horrible separation anxiety. He plays in the school band and wants to take up wrestling. He still has challenges and some fatigue, but I know that we are in a far better place than we were four years ago. Sheer determination and a lot of money have brought some healing for our son. We are far happier and wiser than we were four years ago. Keep the faith that you will make the difference for your child.

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T. Anna he will get there. We are still on our road to recovery, but have come miles in just 6 months. In January of this year my DD10 was flipping mattresses, punching the shower door hiding in the closet and would walk through the house screaming, throwing everything in site against the wall. She has PANS and is being treated for multiple infections, Lyme and co-infections. She has missed the school year.

 

This past weekend she was a flower girl in a wedding. I stressed about the day for weeks prior, wondering if she could do it (thinking there's no way). I'm so proud to say that she was able to have her hair done and wear a uncomfortable dress all day, with minimal complaining. This is a girl who wouldn't wear certain materials or let me come near her with a brush. She danced and played with her cousins until 10:30pm. We paid the price the next day (actually still are paying it), but it was worth every minute.

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My ds17 has a story similar to those posted above. Diagnosed at age 6 after several chronic strep infections - complex vocal tics, separation anxiety, enuresis, sensory problems, food restriction and confession ocd to name just a few restrictions. T&A at 7 along with SSRIs and ERP therapy provided some significant recovery for several years, albeit definite flares with illness (usually bacterial). 2nd exacerbation at age 12 brought on panic attacks, rages, severe school phobia. Despite having a diagnosis, there was no evidence of strep and therefor no medical treatment. Instead, psychiatric hospitalization, lots of psych meds, lots of therapy and the start of special education at school. Age 14 brought 3rd exacerbation with sinus infections and the lovely H1N1. At that point I had high speed internet, and this awesome forum, and the support to reach out of the box on my own and seek serious PANDAS knowledge and help. Testing found mycoP, raised CamKinase and PETscan showed brain inflammation. High dose antibotics for 2 years and 1 ivig (had to pay OOP so more than one was not an option). Our story was one of a long path to healing. 3 months after the IVIG he started highschool, and only made it 1 1/2 weeks before his anxiety shut him completely down. We had to pull him to half days and added xanax to the mix of risperdal and luvox and biaxin and supplements and bi-weekly therapy sessions. But inch by inch and day by day he healed. At it's worst as a teen, he was regressed, had urinary incontinence, was overweight and lethargic, had 3-4 terror attacks a day, could not sleep, had separation anxiety and school phobia, could not form a complete sentence, couldn't read, feared he'd end up homeless on the street or institutionalized and had severe depression. Today, he is in school full time with As and Bs, and where he once couldn't get out the door. He drives, has made a few friends, and holds a part time job at McDonalds. He is off all meds except Luvox and supplements. He laughs, he is calm when facing adversity, advocates for himself, looks forward to attending college, and is a strong kid with a good head on his shoulders. He can see where he was and how hard it was to get where he is, and he is really proud of himself. He acknowledges that PANDAS may always be a part of him, but deals with small flares in stride, knowing they are temporary (usually last less than a week and are brought on by stress or a cold). He understands himself more than the average teen (or even adult), and says things like "I'm magnifying this problem, aren't I?". In short - his childhood and teen years may not be what they would/could have been and sometimes that's still hard. But he focuses now on the lessons he has learned from the journey and moves on with hope. So none of it was easy, and none of it was quick, but don't give up. If your child has been sick for a long time, it may take a long time for them to heal - but they WILL heal!!!

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T.Anna, keep fighting the good fight! We are fingers crossed and waiting longer (this time) to shout from the roof tops. I can offer another perspective, since our DD 12's healing has been all or nothing throughout this 3 years of (mostly) pure .

 

First PANDAS diagnosis, she came almost all the way back with abx combo to 90-95% which lasted 6 weeks. Then lyme diagnosis caused doc to add tindamax, which she was not ready for, and set her back again to zero function. Second lyme doc treated for babesia and again she came all the way back to 90-95% this time for 5 months, then again when tindamax was added fell into a deep dark hole even farther than before. Now, after 8 months of IV abx and really intense babesia treatment, along with heavy metal chelation and west nile virus treatment (who knew?!), and even daily tindamax this time, she suddenly, miraculously bounced back to near 100% in a matter of days. During this time we did go to USF Rothman center for treatment, and as professional as those docs are, (and they were excellent), they could not help her because she would not cooperate, and they recommended sending her to a residential facility. We learned a lot there, but I don't know if she got much out of it other than a lot of tears. So our take-away lesson was that, for my daughter, the right medication at the right time in the right order has been everything - the difference between non-functional and 100%. And she would flip the switch in a matter of hours/days.

I can relate to so many of the stories on here about hour-long showers involving 10 (not 9) bottles of body wash each shower, hair that wasn't brushed in weeks, the same outfit every day, unwashed, even issues with eating food if it touched the outside of her mouth or if I prepared it. We really lost her for awhile, she wasted away physically, stopped going to school, couldn't play with friends, and we watched helplessly. I could not hug her for almost the entire 3 years.

In November '12 she was sitting on a couch in pajamas all day and could not move from that spot other than to go to the bathroom or bed. Last week she went on a 3 day school field trip to Boston, is a top student, and has playdates every day after school, and plays every and all sports. She is physically affectionate, helps around the house, eats everything in sight, and is no longer oppositional other than normal pre-teen youngest child stuff. We did not see the light at the end of the tunnel, literally until we were there. And I am reasonably sure we still have a few bumps left, but hopefully minor ones. We have 2 very different and excellent doctors, and follow both regimes. Folks on the lyme forum provided amazing support and intelligence.

Hang in there, it is possible to cure this!

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