Growing Out of it?

[T_Mom]

Greetings--

I am new to posting. Thank you one and all for the support this forum provides.

Our daughter (11) has been struggling with what we believe is PANDAS/PITAND for a year.

 

Sudden, severe OCD episodes started 11/07--First was two months of sudden onset anorexia/compulsive exercising (Nov/Dec) 07-08. Next one was very severe regressive OCD (July-Aug.08) holding of odd positions, eyes closed, no speaking, ETC (26 days.)

 

Have seen numerous doctors, spoken with Dr. K, etc. We did a prednisone burst with the summer episode. We also started Amoxicillan (MRI indicated sinusitus), and started LOW level zoloft within a week of each other.

 

10- days AFTER the prednisone (but while on Amox. and zoloft) she "walked out of it", it was remarkable. But we then had 3 docs with 3 possible explanations--

 

She has had three bouts of sinus or cold illness this fall, each one coincided with OCD exacerbation (thankfully moderate.) Each time with full strength Amox. (500mg/2xs a day for 10 days) she "cleared"...until the fourth time in December...

We continued on half strength Amox. and once we raised it to full strength again she could go to school.

 

This time though, since late December the struggle is continuing. She is "functioning" though OCD is affecting her writing, stepping, thoughts, etc. No positive strep titers on the journey.

 

OK--My burning question: What do we know about PANDAS kids "outgrowing" this? IS THERE ANY LITERATURE on this? Any references to help understand the course this takes after puberty?

 

Thank you again,

T.Mom

[Dedee]

T.Mom,

 

I am so sorry that your daughter is having such a tough time. This is such a hard age and adding something like PANDAS just seems so unfair. It does sound promising that she responds to antibiotics. As far as literature on outgrowing it, most of what I have read does not get real specific. It does say that this is a childhood illness and in most cases does not carry into adulthood. We took our son to Dr. Murphy who has done a lot of research on PANDAS. She told us that we should expect to see him begin to get better in the late teens with complete resolution by the early twenties. She said some kids will be completely better by 17 or 18, while others may take till 21-22. She did give us definitive hope and indication that this would resolve with age. I'm not sure if that is exactly what you are looking for. I don't know of any research or studies that have been done on symptom resolution in regards to age. I think there is still so much emphasis on research for cause and cure right now. Let me know if you find any good articles. I think we would all like to know when we can expect to see some light at the end of this dark tunnel. I hope things turn around for your daughter. Keep us posted.

 

Dedee

[T_Mom]

T.Mom,

 

I am so sorry that your daughter is having such a tough time. This is such a hard age and adding something like PANDAS just seems so unfair. It does sound promising that she responds to antibiotics. As far as literature on outgrowing it, most of what I have read does not get real specific. It does say that this is a childhood illness and in most cases does not carry into adulthood. We took our son to Dr. Murphy who has done a lot of research on PANDAS. She told us that we should expect to see him begin to get better in the late teens with complete resolution by the early twenties. She said some kids will be completely better by 17 or 18, while others may take till 21-22. She did give us definitive hope and indication that this would resolve with age. I'm not sure if that is exactly what you are looking for. I don't know of any research or studies that have been done on symptom resolution in regards to age. I think there is still so much emphasis on research for cause and cure right now. Let me know if you find any good articles. I think we would all like to know when we can expect to see some light at the end of this dark tunnel. I hope things turn around for your daughter. Keep us posted.

 

Dedee

 

 

Thank you very much Dedee--

It has truly helped me to be able to read this forum (though with a heavy heart.) Dr. Murphy's insights are hopeful.

As we sort our way through the information--it helps to hear what others have found.

Best--

T.Mom

[EAMom]

Hi T. Mom...

 

this question has been on my mind as well. No good studies that I am aware of.

 

Apparently at the DAN! Q and A session (conference a couple of months ago...PeggySue posted a video), Sue Swedo said the PANDAS kids that are treated do well as adults. Those that are not treated, tend to have ongoing problems. (I didn't watch the actual clip yet so I'm not sure if this statement is in it, this info. is from an e-mail I got.) I don't know specifics eg. was "treatment" prophylactic abs, IVIG, or what? Also, I don't know if there is a difference in boys vs girls (hormones affecting things) etc.

 

To a certain extent, I think PANDAS becomes less of a problem when older b/c adults get less strep than kids...but doesn't sound like something you can count on for all.

 

Also, I wonder about "baseline" change from chronic/recurrent PANDAS episodes.

 

There was a mom that posted once that had PANDAS as a child. She said things got better for her when she was pregnant.

 

Re abs...you might consider Azith. (our 50 pound dd is on 250mg/day since June)...IMO it would do a better job of clearing that recurrent sinus infection....since your dd had 3 bouts this fall it's possible that the Amoxicillin wasn't really clearing things but just suppressing them enough to relieve symptoms for a bit. I would rec. more than the typical 5 day course of Azith.. IMO these kids need a longer course to knock that (likely intracellular) strep out of their sinuses (or where ever the strep is hiding out.)

 

I don't think that all of these PANDAS kids have a "normal" immune system, able to fight off strep with a "normal" course of abs.

 

Some other folks have had success with Keflex, if Azith. doesn't help.

[T_Mom]

Hi T. Mom...

 

this question has been on my mind as well. No good studies that I am aware of.

 

Apparently at the DAN! Q and A session (conference a couple of months ago...PeggySue posted a video), Sue Swedo said the PANDAS kids that are treated do well as adults. Those that are not treated, tend to have ongoing problems. (I didn't watch the actual clip yet so I'm not sure if this statement is in it, this info. is from an e-mail I got.) I don't know specifics eg. was "treatment" prophylactic abs, IVIG, or what? Also, I don't know if there is a difference in boys vs girls (hormones affecting things) etc.

 

To a certain extent, I think PANDAS becomes less of a problem when older b/c adults get less strep than kids...but doesn't sound like something you can count on for all.

 

Also, I wonder about "baseline" change from chronic/recurrent PANDAS episodes.

 

There was a mom that posted once that had PANDAS as a child. She said things got better for her when she was pregnant.

 

Re abs...you might consider Azith. (our 50 pound dd is on 250mg/day since June)...IMO it would do a better job of clearing that recurrent sinus infection....since your dd had 3 bouts this fall it's possible that the Amoxicillin wasn't really clearing things but just suppressing them enough to relieve symptoms for a bit. I would rec. more than the typical 5 day course of Azith.. IMO these kids need a longer course to knock that (likely intracellular) strep out of their sinuses (or where ever the strep is hiding out.)

 

I don't think that all of these PANDAS kids have a "normal" immune system, able to fight off strep with a "normal" course of abs.

 

Some other folks have had success with Keflex, if Azith. doesn't help.

 

Thank you EAMom,

 

Yes, thanks to reading forum posts the switch to Azith. is on my list for the week ahead...Thank you!

I agree the Amox. may never have truly cleared things--perhaps only suppressed.

 

Interesting reflection on the Swedo session. I watched the hour long session but not the Q and A yet.

Swedo noted the hep C issue, that is the only thing that really concerns me, and I have yet to wrap my mind around that...IVIG should be safer now, right? some 9+ years later...we would hope, I would like to see some stats.

 

In our case it may not be strep (though we are now charting monthly titers to see any rise or fall...) it may be the "PITAND" issue.

 

The symptoms are so "weirdly" similar to each other across these kids...and they CHANGE all the time...

OCD over all: with our dd-- at one time (at least) guilt, incessant prayers, movements, fearing food might be poisoned, the whole written language issue, hand writing deterioration, huge pupils, step-stepping around things a certain way, mood lability...and the anorexia issue. We can point to the week these start and finish with each episode. I know I am not noting anything new to anyone reading this...it is just so darn frustrating.

 

My Father encouraged me at one point that WE were the only ones who truly knew the entire situation with our dd -- all that she was encountering -- and knew the situation best to put the pieces together. Sobering.

T.Mom

[pmoreno]

Hi T. Mom...

 

this question has been on my mind as well. No good studies that I am aware of.

 

Apparently at the DAN! Q and A session (conference a couple of months ago...PeggySue posted a video), Sue Swedo said the PANDAS kids that are treated do well as adults. Those that are not treated, tend to have ongoing problems. (I didn't watch the actual clip yet so I'm not sure if this statement is in it, this info. is from an e-mail I got.) I don't know specifics eg. was "treatment" prophylactic abs, IVIG, or what? Also, I don't know if there is a difference in boys vs girls (hormones affecting things) etc.

 

To a certain extent, I think PANDAS becomes less of a problem when older b/c adults get less strep than kids...but doesn't sound like something you can count on for all.

 

Also, I wonder about "baseline" change from chronic/recurrent PANDAS episodes.

 

There was a mom that posted once that had PANDAS as a child. She said things got better for her when she was pregnant.

 

Re abs...you might consider Azith. (our 50 pound dd is on 250mg/day since June)...IMO it would do a better job of clearing that recurrent sinus infection....since your dd had 3 bouts this fall it's possible that the Amoxicillin wasn't really clearing things but just suppressing them enough to relieve symptoms for a bit. I would rec. more than the typical 5 day course of Azith.. IMO these kids need a longer course to knock that (likely intracellular) strep out of their sinuses (or where ever the strep is hiding out.)

 

I don't think that all of these PANDAS kids have a "normal" immune system, able to fight off strep with a "normal" course of abs.

 

Some other folks have had success with Keflex, if Azith. doesn't help.

 

Thank you EAMom,

 

Yes, thanks to reading forum posts the switch to Azith. is on my list for the week ahead...Thank you!

I agree the Amox. may never have truly cleared things--perhaps only suppressed.

 

Interesting reflection on the Swedo session. I watched the hour long session but not the Q and A yet.

Swedo noted the hep C issue, that is the only thing that really concerns me, and I have yet to wrap my mind around that...IVIG should be safer now, right? some 9+ years later...we would hope, I would like to see some stats.

 

In our case it may not be strep (though we are now charting monthly titers to see any rise or fall...) it may be the "PITAND" issue.

 

The symptoms are so "weirdly" similar to each other across these kids...and they CHANGE all the time...

OCD over all: with our dd-- at one time (at least) guilt, incessant prayers, movements, fearing food might be poisoned, the whole written language issue, hand writing deterioration, huge pupils, step-stepping around things a certain way, mood lability...and the anorexia issue. We can point to the week these start and finish with each episode. I know I am not noting anything new to anyone reading this...it is just so darn frustrating.

 

My Father encouraged me at one point that WE were the only ones who truly knew the entire situation with our dd -- all that she was encountering -- and knew the situation best to put the pieces together. Sobering.

T.Mom

 

 

I think that's the first time someone mentioned what my daughter did frequently during an episode - the step-stepping around things or jumping over things that weren't there. Interesting. As far as the age goes, this is rather depressing to me. I had heard that by puberty most everything clears up as if it had never happened. For girls usually around the start of their menses. But some of you on here are saying something about late teens or early twenties. If that's the case, then it means that they essentially have lost their childhood altogether. I am hoping that since dd had IVIG 4 months ago, she will eventually (hopefully within a year)be back to how she was before. As someone said, the behaviors are constantly changing and the current ones for her are repeating certain questions over and over and maybe once or twice a day suddenly yelling out or crying hysterically that something is bothering her. At this point she is on azithromycin, has been on augmentin for the 3 months before, so I don't think she has any infections going on. She had high amount of yeast & intestinal bacteria, was on meds for that. That should be cleared up by now. No active viruses at this time. So as far as I can tell, she should be completely fine right now, but yet she continues with these behaviors and almost no memory skills at all, not to mention that she uses baby talk and plays on a very low level.

[TiredMom]

"Apparently at the DAN! Q and A session (conference a couple of months ago...PeggySue posted a video), Sue Swedo said the PANDAS kids that are treated do well as adults. Those that are not treated, tend to have ongoing problems. (I didn't watch the actual clip yet so I'm not sure if this statement is in it, this info. is from an e-mail I got.) I don't know specifics eg. was "treatment" prophylactic abs, IVIG, or what? "

 

Hi EAMom,

I watched the Q&A session, and did not see the reference above where she says how the kids are doing now. From the email I got, I think she must have said this off line when not being filmed. What a shame - it would be so helpful for us to see that information. I had the same questions as you - exactly what "treatment" was she talking about? One thing you will see on the Q&A, which is in direct contrast to her warning in the presentation about IVIG - in the Q&A session she talks about how much safer IVIG is now...

 

I think it would be would be worth it for an army of us parents to attend her next presentation ;-)

 

The DAN! conference schedule can be accessed on the following website, but I don't know which ones she is scheduled to appear.

 

http://www.defeatautismnow.com/

 

-Peggy

[T_Mom]

Thank you--Peggy Sue. I will watch the Q and A session--

I also found the following conference clip to be helpful. You may have already see it.

 

http://media.mindinstitute.org/video/toxco..._toxconf_hi.wmv

 

* Glutamate -- Any info.?

 

Best,

T.Mom

[Darla]

Interesting point on the Q & A about some antibiotics having glutamate modulating effects resulting in behavior modification and as a result parents thinking that their child did in fact have PANDAS. Anyone know which antibiotics? I thought she eluded to Amoxicillan.

 

 

Thank you--Peggy Sue. I will watch the Q and A session--

I also found the following conference clip to be helpful. You may have already see it.

 

http://media.mindinstitute.org/video/toxco..._toxconf_hi.wmv

 

* Glutamate -- Any info.?

 

Best,

T.Mom

[EAMom]

Hi Peggy,

yes, I wish that info. (about how pands kids do when older/grown) had been filmed! Also, what Dr. Murphy seems to think (that kids will "grow out of it") seems to conflict with what Swedo, and (I believe) Dr. K, says.

No wonder I'm confused!

[T_Mom]

Interesting point on the Q & A about some antibiotics having glutamate modulating effects resulting in behavior modification and as a result parents thinking that their child did in fact have PANDAS. Anyone know which antibiotics? I thought she eluded to Amoxicillan.

 

 

Thank you--Peggy Sue. I will watch the Q and A session--

I also found the following conference clip to be helpful. You may have already see it.

 

http://media.mindinstitute.org/video/toxco..._toxconf_hi.wmv

 

* Glutamate -- Any info.?

 

Best,

T.Mom

 

Yes, the effects of Amox. is an interesting point.

What I am struggling with understanding is if my daughter's OCD has "cleared" a number of times with Amoxicillan, which may (as noted by Dr. Swedo in the video) have modulating effects on behaviors/neurotransmitter concentrations...

Is there then reason to believe that regardless of this effect SHE MIGHT BENEFIT FROM IVIG ? -- or that the effect indicates she WOULD benefit??? -- since the kids who had an acute reaction were in the study?

--does anyone know enough to know.

T.Mom