Sudden onset of TICs/OCD behavior

[jferinga]

Hi our daughter recently had a sudden onset of TIC and OCD behavior. The neurologist would only acknowledge PANDAS/PANS as "theory". All tests for strep at this point are negative. She previously has had strep and her private school routinely had a strep outbreak every few months to the extent school notices went out to alert parents of the symptoms.

 

In researching this, I did find reference to other viruses that have been connected as a trigger for PANDAS however that was only one research institution studying PANDAS.

 

Has anyone familiar with PANDAS found any other triggers, infetions or viruses, besides strep?

[jferinga]

Our daughter recently developed a tic disorder and OCD behaviors. The neuologist would only acknowledge PANDAS, PANS, CANS, PITAND as "a theory". It has been a week since the initial onset and symptoms appear to be leveling off. There seems to be conflicting reports from parents about treatments being successful and or unsuccessful.

 

My reading has indicated that there needs to be a treatment for any active infections until eliminated with antibiotics, then followed by prophylaxis antibiotic treatments to prevent reinfection. Prophylaxis antibiotic treatment are for prevention of new infections not treatment of an active infection. After this there seems to be deviation in the literature. I have read there are vitimin supplements prescribed, natural antivirals/antibacterials used, IVIG treatments, cognitive behavioral therapy (CBT), and medication.

 

So now for my five questions. How long from the initial acute onset of the symptoms of PANDAS, PANS, PITAND, or CANS did you start treatment? Did the treatment include antibiotics? How was your success in eliminating the symptoms? To what extent did your child return to normal? What time frame did this take?

[Chemar]

Hi and welcome

 

I have merged your two threads as it is much easier for members to reply to a new member's thread when all is in one place.

[nicklemama]

Yes. It's called PANS when there is a nonstrep trigger. My son was triggered by a flumist vaccine. We have found tick borne infections of ehrlichia and anaplasma that he is currently being treated for.

 

Caught and treated early, I believe you can lessen the symptoms, shorten the duration and possibly avoid future flares. My son went more than a yr without diagnosis and treatment. Four yrs later and three yrs of treatment and he is doing extremely well but not 100%. He has been on abx for three yrs plus other things we've added like methylation and supplements to decrease inflammation and IVIG twice.

[Mommy2MCL]

We are still waiting on blood work but we have seen triggers other than strep. Here is a bit of our timeline:

 

Strep last February

Sudden Eye Rolling tic end of April

Sinus infection triggered very rapid eye rolling in August

Dentist appointment to put on a crown (release of bacteria) triggered emotional liability, separation anxiety

Strep @ end of October triggered emotional liability and separation anxiety

 

Antibiotics that were given for sinus infection and 2nd strep show improvement. Right now we are on Augmentin. Her mood has stabilized. No separation anxiety. Tics have decreased but are still there but nothing like they have been in the past and much better than they were.

 

It took me 6 months to realize what we were dealing with because we only had the onset of tics for so long.

Edited November 16, 2013 by Mommy2MCL

[pr40]

I try to answer you questions.

How long from the initial acute onset of the symptoms of PANDAS, PANS, PITAND, or CANS did you start treatment? Did the treatment include antibiotics? How was your success in eliminating the symptoms? To what extent did your child return to normal? What time frame did this take?

1. sooner the better. with dd 12 months later, with ds right away. guess which one is doing better?

2. yes. dd and ds were bad but not sever cases. so abx was the treatment of choice. ds also had steroid burst. both are on 2 diff abx

3. gradual, very gradual. exacerbations are milder and shorter. more and more normal days, after 1 year on abx

4. we changed our idea of normal. these are auto-immune conditions. with them you are never normal. sometimes, when one symptom stops, another begins and you may not really know

5. maintaining good quality of life is our goal. it requires work, special diet, supplements. etc. i'd be surprised if all that can go away and we can just be "normal".

[rowingmom]

DD12's PANS symptoms were caused by bartonella. Whether or not this was tic-borne, we aren't sure. Approx. 1 month after a nonEM rash, and also an MMR booster, she developed motor ticcing which gradually developed a vocal component.

 

She didn't develop the pain symptoms and IBS associated with bartonella for another 2 years, and it wasn't until then that I twigged that her problems might be infection based and started looking for the reason.

 

She didn't begin treatment for approx. 2.5 years after ticcing started (she doesn't have much in the way of OCD, but lots of ADD). Treatment included multiple, combination abx protocols prescribed by our LLMD (lyme literate medical doctor), and included biaxin, rifampin, plaquinel, minocycline, azithromycin, tindamax and malarone.

 

Antibiotic treatment often caused flares of her Tourette's symptoms, which I now realize (that for DD anyway) were caused by toxins released by bacterial die-off. Gram negative bacteria like syphilis (bartonella and lyme are both gram negative) can produce herxheimer reactions. As the toxins were allowed to leave her body through detoxing, the ticcing would resolve.

 

After 2 years of fairly heavy antibiotic treatment, addressing MTHFR deletions with methylated B vitamins and making sure detoxing was helped along with epsom salt baths, magnesium supplementation, lemon juice sweetened with stivia daily, and psyllium husk to help daily bowel evacuation, her Tourette's symptoms are at an all-time low.

 

Our LLMD suggested stopping treatment but I wasn't comfortable with that option, so we continue on Stephen Buhner's full bartonella herbal protocol, and DD continues to improve.

 

Please see my signature for more specific information.

 

Welcome to the forum!

Edited November 17, 2013 by rowingmom

[jferinga]

What does ABX stand for?

[Chemar]

ABX is the abbreviation for antibiotics

 

We have a list of commonly used abbreviations pinned to the top of the forum

http://www.latitudes.org/forums/index.php?showtopic=7841

[theolis]

Our sweet, amazing, loving, carefree little girl is no longer. She was diagnosed with PANS. The pediatrician ran many blood tests to prove that it wasn't lyme's or strep that caused the reaction.

 

She had the DTaP vaccine 2 weeks prior to the switch flipping. She was her normal, bubbly amazing little self then BAM, like I walked over to the light switch & flipped it off. This was over a year and a half ago. She will never be the same.

 

Does ANYONE have ANY suggestions on how to help this sweet child. Her brain is tormenting her. She just cries that she wants to be "normal again." She can't stop the obsessive thoughts. I'm her "person" and if I'm feeling even a fraction of what she's feeling, if I were her, I'd want to die. HOW can I help my sweet 6 year old baby girl???

[sriramcs]

My 7 year old daughter got a mutated version of the flu at the beginning of December 2014. We got her the flu mist in October but because this was a mutated version, she still got the flu.

The pediatrician office did a swab test for STREP from the back of the throat, it came out negative. Then, they tested for the flu inside her nostrils, it came out positive. Never had any issues with motor tics whatsoever.

First time I noticed it was 3 days after she got off Tamiflu at a Christmas event. It has progressed to facial grimacing as well along with the neck jerking. My wife and I are devastated. I have a video of her from November showing no symptoms or signs, she was a perfectly normal high ability child. It is too co-incidental that she gets the flu, then the Tamiflu, and has these motor tics afterwards.

All her abilities as far as reading, math, social skills are still TOP NOTCH but she has these twitches that she can't help or control. Please help. Will this eventually go away? I am changing diet to avoid dairy, sugary foods etc. but she has NEVER had food allergies, makes this grown man want to kneel down and cry. How do I get the Tamiflu out of her system? How can I help my little girl?

I have been losing sleep for a few days trying to see what I could have done different (stop Tamiflu after a few doses, watched less football and spent more time with her etc.) beating myself up. I know I have to stop but I just need to hear from those who have been in my shoes. Anything would help.

[WorriedDADNMOM]

theolis and sriramcs---------------I REALLY WANT TO ENCOURAGE YOU.....Your kiddos can and will get better. You just need the right approach for your kiddos individual needs. You really need to get to an Integrative Pedi from this website below. I found our doc from Gahanna,OH that is now a "Leading Physician." I cannot say enough good thinks about him. I am glad we found him back then....3-4 years ago before he was considered well known.

 

http://pandasnetwork.org/researchandresources/find-help/usproviders/

 

It is a very comprehensive approach. Summation follows:

 

1) Debulk any infections(viral, bacterial, fungal and parasitic) It could be a combo of more than one. Many times it is multifactoral from infection(s) or cascade of multiple infections.

2) Cool or chill the immune response and control inflammation caused by above issues in #1.

3) Targeted nutrient therapy to give the body the high octane fuel it needs to balance what is going on, heal and function properly and efficiently.

4) Eliminate allergy triggers (foods,pets, etc) to again give the immune response a chance to chill out.

5) Finally implement a plan for dealing with future bacterial and viral infections to prevent the infection cascade that many times happens as a part of #1 that started the whole thing. I cannot say enough about Zinc, vit c and vit a as a sick protocol.

 

I, again want to say....Stay encouraged, get information, research and advocate for your kiddos. I will say don't waste time trying to chase or convice main stream medicine about Pandas or Pans. They just can't or won't deal with it. Still trying to figure out why.

 

Here are some other links that really helped us on our journey. Good luck and God Bless. Any thing you need just PM me. I hope this info helps.

 

http://www.bing.com/videos/search?q=dr+nancy+ohara&FORM=HDRSC3#view=detail&mid=B8315FFF5F842E135A81B8315FFF5F842E135A81

 

 

5-6 part series worth watching....Think about your family history when watching it. It kinda comes down to methylation as a possible link to many disease process as they relate to Neuro-Immune Syndromes.

 

http://www.bing.com/videos/search?q=dr%20kendall%20stewart&qs=ds&form=QBVR#view=detail&mid=2B4C4D2EB859CA78F0912B4C4D2EB859CA78F091

[BeeRae22]

Our daughter recently developed a tic disorder and OCD behaviors. The neuologist would only acknowledge PANDAS, PANS, CANS, PITAND as "a theory". It has been a week since the initial onset and symptoms appear to be leveling off. There seems to be conflicting reports from parents about treatments being successful and or unsuccessful.

 

My reading has indicated that there needs to be a treatment for any active infections until eliminated with antibiotics, then followed by prophylaxis antibiotic treatments to prevent reinfection. Prophylaxis antibiotic treatment are for prevention of new infections not treatment of an active infection. After this there seems to be deviation in the literature. I have read there are vitimin supplements prescribed, natural antivirals/antibacterials used, IVIG treatments, cognitive behavioral therapy (CBT), and medication.

 

So now for my five questions. How long from the initial acute onset of the symptoms of PANDAS, PANS, PITAND, or CANS did you start treatment? Did the treatment include antibiotics? How was your success in eliminating the symptoms? To what extent did your child return to normal? What time frame did this take?

First, If your neurologist will only acknowledge Pandas/Pans as "theory", I would recommend moving on immediately. You've probably already reached the end point with them.

 

The "deviation in literature" you're finding regarding treatment is easily explained by the nature of this disease itself. There are different triggers and varied immune responses so it is all very individual. No one responds the same to treatments. What works for one person doesn't work for another. However, depending on the trigger infection, there are favored treatment protocols.

 

IVIG seems to work for some and not so much for others. I would've tried it with my daughter when her condition nearly hospitalized her last year if I could've gotten insurance to cover it, but without a positive strep minimum, that wasn't going to happen. Even with a positive strep it would've been difficult.

 

Mixed reviews on CBT. Some rave about it, but most seem to feel that it's not very effective for Pandas/Pans kids, especially during exacerbations. My daughter has done CBT for 8+ months straight. Did it help? Hard to say really. Not when she was in the thick of it. Maybe a little as she's been improving anyway.... I actually wrote a whole research paper on it for a college course I'm taking, trying to answer the "effectiveness" question, and I had a "live" subject! I still can't answer that one!

 

To answer your questions....

We started treatment for dd about 2 1/2 months from onset. She's never had strep that we're aware of. The only thing we've "found" is mycoplasma pneumonia, although we suspect Bartonella as well. Her C4A level is 6,000+ after almost a year of abx, (should be < 2,800) so we know she is fighting something-- assumably chronic Lyme. Her myco p IGM is finally within range but her IGG is still really high.

 

Still on intracellular abx combo- Azithromiacin, Bactrim and minocycline. Also herbals for detox, and supplementing S-Acetal Glutathione (based on Spectracell results), and of course probiotics.

 

"How was your success in eliminating symptoms?" "To what extent did your child return to normal?" -- these are huge questions for parents of Pandas/Pans kids. I don't really like to think about them honestly but I'll try my best to answer.... After about 8 months of emotional , my dd started eating again (a little) and became less aggressive, most of the raging stopped, and we finally saw an overall improvement. Now at 14 months of this, dd is doing much, much better. However, she is currently in an flair, and is having some ODD behaviors, her ocd has kicked up again (with a whole new "germ/sickness" focus that she's never had before), and she's fatigued and scared and angry a lot of the time I would say that prior to this flair though, she was probably 90% back to baseline? (I can't use the word "normal" anymore-- we've passed that point of return I think, as hard as that is to accept).

 

Even if your child's symptoms have "leveled off", I would urge you to find a competent Pandas/Pans doctor and start treatment right away. Most victims of this disease experience waves of symptoms in waxing and waning patterns. I hope for your sake that you're one of the lucky ones and this doesn't happen for you. My dd's exacerbation took about 2-3 weeks to really rev up, and then it roller coasted severly for the next 8 months. I definitely would've started treatment earlier if I'd known what was happening.

 

This board is a really great resource. Keep asking questions. Do your research. Only your can decide the best course for your child. It can be difficult to assume that responsibility when it comes to medical issues, but most here have found that they have to "create" their own team of doctors, therapists, specialists, etc. to help their child.

 

Best wishes to you and your family.... And Happy New Year!

[stacestar]

just want to chime in and offer encouragement too. Stay connected with forums like this for support and information. I've learned (am learning) so much her myself. My son is dealing with lyme, and so his stuff has been a lyme triggered PANS situation.

I remember when my son first had a sudden onset blinking motor tic last year. I can relate to sriramcs post about feeling so upset and loosing sleep. I remember last year when the tic started I just wanted to back time up. It was so sudden, like the name says "sudden onset". There were no other signs or warnings (well, that I recognized then). It started on a Wed. and I remember thinking for days, I just wanted to go back to that Tuesday. And wondering what had happened, what in the world was going on. Then you dig and dig and research and find a good dr. and support and learn, and realize that it can get better.

My little guy is just about 99% symptom free and doing really well overall, feeling good. He stopped ticcing last year after 6 weeks;

he did unfortunately start again this past fall and it still hasn't resolved 100%, but it is usually minor and I believe full heartedly that it will go away as we work through the triggers (we're detoxing, combating yeast, and infections). This isn't easy to see the ones you love the most go through these things, but hang in there! There are answers and there is another side to this; I believe it!

[BeeRae22]

Also wanted to add, for those of you beginning this journey- take notes and chart everything- behaviors, sleep patterns, diet, etc. This information will be very useful down the road.