Would this make sense?

[Tattoomom]

Clinically diagnosed 4 year old with PANDAS. On and off antibiotics since last strep infection in May. Longest duration of antibiotics has been 14 days straight of Zith. She'd get 10 days of Amoxicillin, stop, regress, get more, etc... Horrible, horrible anxiety, panic, some ocd and the worst temper tantrums/meltdowns you've ever seen in your entire life! Foggy/spacey all-the-time. Lost knowledge she once had, suddenly developmentally delayed. Language/processing disorder. You get the picture.

 

And then...... we started seeing a Psychiatrist who added Zoloft (1 month ago) and Tenex (2 weeks ago) and we have a new child. She's HAPPY! She's calm. She has a sense of humor (before she didn't "get" jokes), she's alert and spot on. Her overall aura has changed. It's like she woke up from a horrible nightmare. She's till anxious and bites her fingernails, but she's not freaking out over everything. She's actually a joy to be around!

 

Does it make sense that Zoloft and Tenex would help her so much? I mostly see that these drugs don't help PANDAS kids, so I'm a little confused. Would this make you re-think PANDAS? Why didn't the antibiotics help enough alone? Or do some kids just need the cocktail of drugs?

[MomWithOCDSon]

Everyone's experience is a little bit different, but ours has been similar to yours. The abx made a tremendous difference in our DS's physical and mental health but they didn't entirely "cure" everything. In our case, we tend to chalk it up to the fact that he was older by the time we got a PANDAS diagnosis, so he'd been contending with the anxiety and OCD for nearly 6 years prior to that and had developed some "coping behaviors" and learning patterns that the abx alone couldn't set aside.

 

In your case, though, as your DD is so young and likely hadn't had a chance to develop really set-in behaviors, I would think the turn of events suggests that the Zoloft and/or Tenex are doing something/supporting something in your DD that remained out of balance even after the medical treatments.

 

Now, maybe it's possible that with enough time, patience and trial and error, you could have arrived at the same happy place by addressing methylation issues or neurotransmitter imbalances with "natural" supplements rather than prescription meds, but it's hard to say, and you've achieved what you were after: a happy, functional child.

 

Does that mean you weren't/aren't dealing with PANDAS after all? No, I don't think that's what it means at all, though likely some docs would likely say that your DD's response to the meds proves their misguided theory that PANDAS isn't "real." Our 12-year-long odyssey with our DS has led me to believe that there may ultimately be a finding that there's no such thing as "regular" OCD or TS . . . that every case of it is some blend of genetic susceptability and infectious trigger.

 

Glad you found a "good place" for your DD, and may the good times continue to roll!

[Dedee]

We had that experience with our oldest son several years ago. That was when not much was known about PANDAS. They gave antibiotics for the initial infection then Zoloft for the anxiety and OCD symptoms. We were lucky that it was helpful for him for several years until he had a series of infections that triggered things again. I say if it is working for you, don't rock the boat. Best of luck.

 

Dedee

Edited September 21, 2012 by Dedee

[Tattoomom]

Everyone's experience is a little bit different, but ours has been similar to yours. The abx made a tremendous difference in our DS's physical and mental health but they didn't entirely "cure" everything. In our case, we tend to chalk it up to the fact that he was older by the time we got a PANDAS diagnosis, so he'd been contending with the anxiety and OCD for nearly 6 years prior to that and had developed some "coping behaviors" and learning patterns that the abx alone couldn't set aside.

 

In your case, though, as your DD is so young and likely hadn't had a chance to develop really set-in behaviors, I would think the turn of events suggests that the Zoloft and/or Tenex are doing something/supporting something in your DD that remained out of balance even after the medical treatments.

 

Now, maybe it's possible that with enough time, patience and trial and error, you could have arrived at the same happy place by addressing methylation issues or neurotransmitter imbalances with "natural" supplements rather than prescription meds, but it's hard to say, and you've achieved what you were after: a happy, functional child.

 

Does that mean you weren't/aren't dealing with PANDAS after all? No, I don't think that's what it means at all, though likely some docs would likely say that your DD's response to the meds proves their misguided theory that PANDAS isn't "real." Our 12-year-long odyssey with our DS has led me to believe that there may ultimately be a finding that there's no such thing as "regular" OCD or TS . . . that every case of it is some blend of genetic susceptability and infectious trigger.

 

Glad you found a "good place" for your DD, and may the good times continue to roll!

 

 

During this past year, we did try natural things... Calms Forte, GABA, Natural Calm, etc... but nothing helped. I am slightly worried that her response to the Zoloft and Tenex would leave the doctors to believe it's not PANDAS!

 

HOWEVER, I may have spoke too soon.... today has been a bad day and you can't tell she's on anything! What's up with that??? One day she's great, the next day is awful. It's like one step forward and then regression

[MomWithOCDSon]

During this past year, we did try natural things... Calms Forte, GABA, Natural Calm, etc... but nothing helped. I am slightly worried that her response to the Zoloft and Tenex would leave the doctors to believe it's not PANDAS!

 

HOWEVER, I may have spoke too soon.... today has been a bad day and you can't tell she's on anything! What's up with that??? One day she's great, the next day is awful. It's like one step forward and then regression

 

I share your concern re. the doctors deciding that a positive response to the more typical anxiety/TS meds could lead them to preclude PANDAS as a viable diagnosis, but most of the doctors actively practicing and researching PANDAS wouldn't be so short-sighted, I don't think. Dr. M regularly utilizes low-dose Zoloft in the full range of treatment options for the PANDAS kids she sees, and Tenex is now being used as a non-stimulant response to ADHD, only it's been repackaged under a different name: Intuniv. So doctors familiar with PANDAS and the myriad of comorbid behaviors, including anxiety and sometimes ADD/ADHD, would not be surprised to see that these meds may have some positive impact on our kids, at the right doses.

 

I would suggest you keep an eye on your DD, and journal daily in terms of her behavior, triggers, anything outside the norm that might account for a change in her behavior, either positive or negative. If you have a bad day here or a bad day there, that's likely just part of the process. But if you see the bad days adding up again, and if she seems to consistently become somehow "more" of the anxious things you'd thought the Zoloft had initially set aside, her dose might be too high for her, and you might consider cutting it back . . . not out, but back. If you abruptly cease the med, that might cause an even greater negative response, but cutting it back, if too high a dose is causing the increased agitation, should result in improved behavior on her part within 24-48 hours of having reduced the dose.

 

Otherwise, you might need to consider whether or not she might not need more medical interventions . . . that perhaps there's still an autoimmune response impacting her health and her behavior.

[Tattoomom]

During this past year, we did try natural things... Calms Forte, GABA, Natural Calm, etc... but nothing helped. I am slightly worried that her response to the Zoloft and Tenex would leave the doctors to believe it's not PANDAS!

 

HOWEVER, I may have spoke too soon.... today has been a bad day and you can't tell she's on anything! What's up with that??? One day she's great, the next day is awful. It's like one step forward and then regression

 

I share your concern re. the doctors deciding that a positive response to the more typical anxiety/TS meds could lead them to preclude PANDAS as a viable diagnosis, but most of the doctors actively practicing and researching PANDAS wouldn't be so short-sighted, I don't think. Dr. M regularly utilizes low-dose Zoloft in the full range of treatment options for the PANDAS kids she sees, and Tenex is now being used as a non-stimulant response to ADHD, only it's been repackaged under a different name: Intuniv. So doctors familiar with PANDAS and the myriad of comorbid behaviors, including anxiety and sometimes ADD/ADHD, would not be surprised to see that these meds may have some positive impact on our kids, at the right doses.

 

I would suggest you keep an eye on your DD, and journal daily in terms of her behavior, triggers, anything outside the norm that might account for a change in her behavior, either positive or negative. If you have a bad day here or a bad day there, that's likely just part of the process. But if you see the bad days adding up again, and if she seems to consistently become somehow "more" of the anxious things you'd thought the Zoloft had initially set aside, her dose might be too high for her, and you might consider cutting it back . . . not out, but back. If you abruptly cease the med, that might cause an even greater negative response, but cutting it back, if too high a dose is causing the increased agitation, should result in improved behavior on her part within 24-48 hours of having reduced the dose.

 

Otherwise, you might need to consider whether or not she might not need more medical interventions . . . that perhaps there's still an autoimmune response impacting her health and her behavior.

 

 

What type of autoimmune response comes to mind? Her anxiety is HORRIBLE. I can't tell the Zoloft or Tenex are doing anything at all. I called the Pediatrician (the one who prescribes the abx) and I'm still waiting on a call back. Maybe the Zith isn't the right antibiotic???

[MomWithOCDSon]

What type of autoimmune response comes to mind? Her anxiety is HORRIBLE. I can't tell the Zoloft or Tenex are doing anything at all. I called the Pediatrician (the one who prescribes the abx) and I'm still waiting on a call back. Maybe the Zith isn't the right antibiotic???

 

Well, if you can't see the Zoloft or the Tenex doing anything . . . positive or negative . . . and her anxiety is as high as it ever was or worse (?), it makes me think she's either 1) fighting an active infection of some sort or 2) still dealing with the autoimmune fall-out from an infection. I know that there are some forms of strep that are resistant to zith in certain parts of the country. Is it the only abx you've tried? And you did see it work at some point? Sorry, I have trouble following all the histories on the forum.

 

Have you tried anti-inflammatories, like ibuprofen? See if that makes any difference?

Edited September 27, 2012 by MomWithOCDSon

[Tattoomom]

What type of autoimmune response comes to mind? Her anxiety is HORRIBLE. I can't tell the Zoloft or Tenex are doing anything at all. I called the Pediatrician (the one who prescribes the abx) and I'm still waiting on a call back. Maybe the Zith isn't the right antibiotic???

 

Well, if you can't see the Zoloft or the Tenex doing anything . . . positive or negative . . . and her anxiety is as high as it ever was or worse (?), it makes me think she's either 1) fighting an active infection of some sort or 2) still dealing with the autoimmune fall-out from an infection. I know that there are some forms of strep that are resistant to zith in certain parts of the country. Is it the only abx you've tried? And you did see it work at some point? Sorry, I have trouble following all the histories on the forum.

 

Have you tried anti-inflammatories, like ibuprofen? See if that makes any difference?

 

Yeah, I get what you're saying and it makes perfect sense!

 

To answer your question... we started off on Amoxicillin and switched to Zith. Saw improvements on both, but the good results seem to "tap out." Haven't consistently tried Ibu.

[Tattoomom]

April 27th 2012-UTI- Prescribed Amoxicillin- NOTICED HUGE IMPROVEMENT IN BEHAVIOR!

 

May 9th 2012- Positive for strep, 2 days after stopping Amoxicillin for UTI (PANDAS sibling had flare of symptoms)

 

NOTICED EVEN MORE IMPROVEMENT WITH MORE AMOXICILLIN!!!!

 

June 6th & 7th 2012- Fever 103.6- Strep neg on Amoxicillin

June 25th 2012- Amoxicillin refill

 

July 9th 2012- Last day of Amoxicillin

July 12th 2012- HORRIBLE RAGES, Won't sleep

July 15th 2012- Amoxicillin Refill

 

August 3rd 2012-Fever 102- strep neg

August 9th 2012- Zithromax- EVEN MORE IMPROVEMENT!!!

August 23rd 2012- Developmental Pediatrician evaluation- Developmentally delayed by about a year. Anxiety and tantrums observed in office. No autism.

August 27th 2012- Zithromax refill- trying to take one dose every 2 days. Not going well.

 

MAJOR ANXIETY/PANIC/OCD. FEARS OF ELEVATORS, BATHTUBS, PEOPLE, PLACES. Literally agoraphobic at times. Biting fingernails and toenails until they bleed. Chews skin on fingers to open sores. Anxiety and panic attacks often.

 

August 14th 2012- Zoloft (1x daily) added by Psychiatrist

September 14th 2012- Tenex (2 x daily) added by Psychiatrist

 

So far, not seeing any improvement on Zoloft/Tenex.

[MomWithOCDSon]

Tattoomom --

 

I'm sure it doesn't seem like it to you, but given as this all started for your DD just this past April, you may truly still be dealing with the "root" issue, and if that's the case, the psych meds are not going to be able to do much until you get the infection/auto-immune fully under control. At least that's what the anecdotal evidence would tend to suggest.

 

Are you still giving the zith only every other day? I know it has a long half-life, but doing anything less than full dose daily seems to me to be more of a prophylactic response than a treatment response. And if she's still so highly anxious and once responded well to daily abx, why not try going back to daily and see how she responds?

 

Setbacks on reduced dosage or removal altogether of abx is very common in PANDAS, though no one seems to know exactly why. Some families wind up finding highly infected tonsils that likely perpetuated the illness despite multiple rounds of abx, some people have found sinus cysts harboring bacteria, etc. There's been discussion about "intracellular strep," a form of the microbe that can kind of "hide out" in various types of cells and/or biofilms in the body, making it extremely hard to eradicate effectively to the point where the body gets the message that it can really, truly lay off antibody production, etc.

 

My DS would regress every time we tried to reduce his dosage, let alone take him off it; it usually wasn't visible a day or two after, but by the 8th day of reduced dosage, it became very apparent. You could set your clock by it. In the end, we wound up keeping him on treatment dose Augmentin XR for nearly two years, and then when we weaned him off, we did it very, very slowly . . . trying to avoid the "shock" to his system that might spur his immune system to freak out again. In the end, that last, long, slow weaning seems to have worked (knock on wood), but who knows why he seemed to benefit from the abx for so long? He's always had respiratory issues, so maybe he had some strep lurking in his sinuses and it took that long, constant abx to finally reach all of it? Or maybe in his gut? We may never know.

 

Unfortunately, a lot of this is guesswork . . . you make as educated a guess as you can, and then you see what works. If your DD has had beneficial results from regular, daily abx before, I would go back to it and see if you see beneficial results again. Hopefully your doctor will roll with you on this. Just make sure to use probiotics, too, so that you don't wind up having to deal with yeast issues or anything like that due to the abx use.

 

Good luck!

[Tattoomom]

It's hard to say when this all started, but my mommy gut says it has something to do with a chronic sinus infection she had back in February 2011... I don't think it was treated properly and never fully cleared, even though her symptoms went away.

 

Summary of symptoms and antibiotic/drug usage: Neupogen being used for Autoimmune Neutropenia- confirmed by bone marrow biopsy 10/09.

 

January 1st 2011- Cold/cough. Temp 100.4-100.9 (Strep throat in the house, siblings PANDAS flare)

January 21st- 3rd DTaP

January 30th- vomiting

 

ANC on Neupogen was on average 4,000 in January

 

February 8th 2011- Sinus Infection- Prescribed Augmentin

February 10th- ANC was 736

 

March 2011- Saw ENT- ordered CT Scan of Sinuses- Prescribed Flonase

 

ANC on Neupogen was on average 3,000 in March

 

April 1st 2011- CT Scan- Mucosal thickening in both maxillary sinuses

 

ANC on Neupogen was on average 3,000 in April

 

May 2011- Developed a throat gulping tic

 

Stopped usuing Neupogen this month

 

From this point on, behavior worsened, language and speech regressed. Daily tantrums.

 

October 11th 2011-Sore throat, won't eat or swallow. Didn't eat the entire week. Strep neg

October 14th 2011- ANC 650

 

January 27th 2012- Fever 103.5 unknown cause

 

Months pass and behavior is still horrible. She lost knowledge that she one had, like colors/shapes. Seems very spacey and foggy brained. Daily meltdowns and tantrums.

 

March 20th 2012-Fever 101.6 unknown cause

[EmilyK]

It's hard to say when this all started, but my mommy gut says it has something to do with a chronic sinus infection she had back in February 2011... I don't think it was treated properly and never fully cleared, even though her symptoms went away.

 

Summary of symptoms and antibiotic/drug usage: Neupogen being used for Autoimmune Neutropenia- confirmed by bone marrow biopsy 10/09.

 

January 1st 2011- Cold/cough. Temp 100.4-100.9 (Strep throat in the house, siblings PANDAS flare)

January 21st- 3rd DTaP

January 30th- vomiting

 

ANC on Neupogen was on average 4,000 in January

 

February 8th 2011- Sinus Infection- Prescribed Augmentin

February 10th- ANC was 736

 

March 2011- Saw ENT- ordered CT Scan of Sinuses- Prescribed Flonase

 

ANC on Neupogen was on average 3,000 in March

 

April 1st 2011- CT Scan- Mucosal thickening in both maxillary sinuses

 

ANC on Neupogen was on average 3,000 in April

 

May 2011- Developed a throat gulping tic

 

Stopped usuing Neupogen this month

 

From this point on, behavior worsened, language and speech regressed. Daily tantrums.

 

October 11th 2011-Sore throat, won't eat or swallow. Didn't eat the entire week. Strep neg

October 14th 2011- ANC 650

 

January 27th 2012- Fever 103.5 unknown cause

 

Months pass and behavior is still horrible. She lost knowledge that she one had, like colors/shapes. Seems very spacey and foggy brained. Daily meltdowns and tantrums.

 

March 20th 2012-Fever 101.6 unknown cause

 

Watching that knowledge regression is absolutely painful. Just finished homework with my son followed by online academic games - it's so depressing to see things he used to know that he can't do anymore. No wonder they tantrum. It must be so frustrating for them.

[rowingmom]

DD11 has lyme/bart and PANS reactions (with ticcing but little OCD) to strep/viral infections. She has positive ANA - meaning autoimmune connective tissue disorder. ANA remains positive after 1 year of treatment for lyme/bart.

 

When she was first put on PenV for strep, all PANS symptoms cleared. When she was put on a second round for strep reoccurrance PANS symptoms cleared, but then started creeping back, even while on PenV. She was started on biaxin for lyme which helped her emotional/social behaviour, but her ticcing didn't stop until rifampin was added for bart. Both Abx are necessary for PANS/pain symptom resolution, when either is discontinued symptoms start gradually returning. She had been changed to another multiple Abx combo minocycline/azithromycin/malarone and her symptoms appear stable so far.

 

In between her first strep infection and her Dx and treatment for lyme, she started grade 4. We were sitting down trying to do some homework when she mentioned that she had forgotten how to hold a pencil. I thought that very strange at the time, but now realize it's par for the course, although she had no trouble remembering the piano key sequences for two pages of piano music (after 2 years of lessons) and unknown to the piano teacher, could not read the music, sigh.