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ANY one Out Grown PANDAS ?


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16 replies to this topic

#1 ghostrider

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Posted 03 April 2010 - 08:51 PM

I will like to know if any one here has posted who has out grown Pandas ? My son is battling this for last 3 years with 4 episodes 2 minor and 2 major. Each time i have used zithromax for 5 or 10 days and then tics ween of slowly and go away. I was just wondering how long this will go on so wanted to know if any has grown out of it. It seems this forum lost some data so all older post by me have been deleted. Any suggestion about any doctor who's doing some research on this ?

thanks

Edited by ghostrider, 03 April 2010 - 08:51 PM.



#2 bubbasmom

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Posted 04 April 2010 - 07:58 PM

I don't know about 'research' but I know 'Sammy' from saving Sammy is like a sophomore in college and doesn't have it anymore. And 'Jamie' from Jamie's story is 18 and doesn't have symptoms. And if you look at Dr. K's website webpediatrics.com he says in there they out grow it around puberty. That's what we're hoping for because my son is 13 so that's just right around the corner from us.
I'm not as scientific as these others on this forum. Just a mom worried about her son!!

#3 Fixit

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Posted 04 April 2010 - 08:27 PM

This sounds identiclta to our story...however with this last onset, ds just turned 9 and cephelexin for 10 days didn't cut it...and we had not been able to get anyone to listen......so i tried brain balance..added vitamins and aminios..there are certain exercises, llike the first mom who would exercise her kid for ahous a day in regards to autism.. you put miusic in the oppostite ear of brain inbalance,flash lights...we went dairy and glutern free for 3-4 months..
we've done the tmj rought...cam k came up boarder line.
strep neg...but myco p showed up....and even if it didn't, doc k , who was the first doc we talked to who would listen said based on our histroy, like yours...it sounds like pandas to him....well luckily doc t said get myco test.....clarith didn't seem to do much...but when we added aug it was like a miracle...
However my son maybe allergic to it so we had to stop and things are regressing....I am so upset...
It's going to be 1 year 4/6/10 and ds is 10 :) :) :( :( :angry: :(



I will like to know if any one here has posted who has out grown Pandas ? My son is battling this for last 3 years with 4 episodes 2 minor and 2 major. Each time i have used zithromax for 5 or 10 days and then tics ween of slowly and go away. I was just wondering how long this will go on so wanted to know if any has grown out of it. It seems this forum lost some data so all older post by me have been deleted. Any suggestion about any doctor who's doing some research on this ?

thanks



#4 ghostrider

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Posted 05 April 2010 - 08:10 AM

Thanks for the reply , this gives us some courage to work on this .

Edited by ghostrider, 05 April 2010 - 08:11 AM.


#5 mmc

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Posted 05 April 2010 - 08:58 AM

I've posted this before, so may be redundant to some. I was diagnosed with Sydenham's Chorea at age 7...but was really more like PANDAS, on the SC spectrum. Mostly tics, not much ocd. I outgrew most of my symptoms by age 15...about 75% I would say. By age 18, 90%. I'm 45 years old presently and estimate I'm 95% free of symptoms...just a few unnoticeable tics. I didn't have any treatment other than prophylactic antibiotics.

Both my kids have PANDAS. Daughter is 14 and still has some tics, but are fairly mild. Is on ADD med, guessing her ADD is related to PANDAS. Son is 11, so we are looking forward to the future, and hope to do IVIG soon to help his system.

So yes, be encouraged about the future. But be aware this stuff can be genetic...

#6 trggirl

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Posted 05 April 2010 - 09:09 AM

MMC, did you have ADHD issues as a child? If so, did you outgrow it?

#7 p_mom

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Posted 05 April 2010 - 10:25 AM

Like MMC said....95% better. Sammy is not totally symptom free, he still has OCD, yet, tolerable. I know Jamie deals with some things, too.

#8 Seansmom

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Posted 05 April 2010 - 11:54 AM

MMC, did you have ADHD issues as a child? If so, did you outgrow it?


My son was diagnosed at age 5 and is now 7. I can still see signs of PANDAS before he shows signs of being sick, but the worst PANDAS symptoms seem to be shortlived because I immediately treat. My son still has the ADHD and OCD, but it is slowly improving.

Edited by Seansmom, 05 April 2010 - 11:55 AM.


#9 mmc

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Posted 05 April 2010 - 02:13 PM

Trg girl...I probably had some ADD, (no hyperactivity). I mainly had this with quantitative studies...ie math classes in middle and high school, and even college. I had to change my major in college b/c I couldn't handle the math or chemistry. I never tried ADD medication. Not sure if this was even around in the 70's and 80's. Maybe I was just a bad math student...but I just could not concentrate in class or while getting homework done. Was ok with general math and geometry, but forget algebra and higher math. My wife helps our kids with this subject, even today. My kids are actually good in math even with their PANDAS. But we have definitely seen our son struggle a lot with homework since getting PANDAS a year ago. He has to get it done early, or can be a disaster.

Our daughter is on ADD medication and it helps greatly.

#10 MomWithOCDSon

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Posted 05 April 2010 - 03:21 PM

Like MMC said....95% better. Sammy is not totally symptom free, he still has OCD, yet, tolerable. I know Jamie deals with some things, too.

So, Sammy still has OCD? But he manages it without any medications? Would it qualify as "sub-clinical," do you know, or would it register on the Y-BOCS scale? Do you know if he does CBT or ERP? Who is "Jamie" and where can I tap into his/her full story?

I am very interested in this particular topic because of DS13's history and current state. It was "Saving Sammy" that sent us down this PANDAS path, and while DS is much, MUCH better thanks to abx, I have wondered if it would be possible to eradicate 100% of his OCD. The book had led me to believe that Sammy was 100% recovered, so I find this interesting info.

Thanks!

Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#11 p_mom

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Posted 05 April 2010 - 03:33 PM

That book, and T.V. segments that I have seen, does lead you to believe he is 100% recovered....only needing a round of antibiotics if he gets sick/strep, then symptoms dissappearing. However, Dr. T met with Beth Maloney and Sammy this past weekend and reported that he still has OCD, but, manageable. Meds? I don't know.

Please click on the Pepsi Refresh link on the bottom of this page......look for Jamies Story in the links section.

#12 vickie

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Posted 05 April 2010 - 05:27 PM

Mom....is your son going to therapy for his OCD? I do believe that for some it becomes so ingrained in them (even as a result of PANDAS) that they may have some residual issues they need to overcome through ERP or CBT. It seems like ERP may be more successful for PANDAS kids...anyone agree? But, I also think eventually they would not need the therapy. I think a portion of parents on this forum would say they can see themselves as having a slight form of OCD...but they can live with it, fight it if needed,and they function completely fine. So, dare I say, even if you cannot rid the OCD 100%, it doesn't mean he will be slave to it.

I will take my son as example. With the last exacerbation he had residual OCD. We had to rid him of it with at home ERP. The 2 previous exacerbations, all the OCD went away on it's own w/o therapy. But, with the last strep triggered exacerbation, once we worked on all remaining rituals, habits, etc, he was okay. He does not need to continue to work on it or fight it now. Now if we didn't try to conquer the residual OCD head on...I really don't know what would have happened.

I will also say that with residual OCD, it wouldn't necessarily worsen immediately after going off meds. It will be at a plateau. Now if it doesn't get addressed in a timely manner, I could see it to start spiralling as the OCD learns it can take more control of the individual.

Like MMC said....95% better. Sammy is not totally symptom free, he still has OCD, yet, tolerable. I know Jamie deals with some things, too.

So, Sammy still has OCD? But he manages it without any medications? Would it qualify as "sub-clinical," do you know, or would it register on the Y-BOCS scale? Do you know if he does CBT or ERP? Who is "Jamie" and where can I tap into his/her full story?

I am very interested in this particular topic because of DS13's history and current state. It was "Saving Sammy" that sent us down this PANDAS path, and while DS is much, MUCH better thanks to abx, I have wondered if it would be possible to eradicate 100% of his OCD. The book had led me to believe that Sammy was 100% recovered, so I find this interesting info.

Thanks!


Edited by Vickie, 05 April 2010 - 05:30 PM.


#13 MomWithOCDSon

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Posted 05 April 2010 - 05:45 PM

Yes, DS has been in and out of CBT and ERP since he was first (mis)diagnosed with OCD at the age of 6; since he "hit the wall" with this exacerbation last May, he's been in more intensive ERP both with a therapist and at home, and we do see some gains there. I believe the abx is what has given him the leverage to use what he's learned in therapy as, before abx, he was way to strung out with anxiety to effectively implement anything!

I'm just trying to figure out if we're going to be able to get back to the "old" baseline (pre-May 2009), or if we dare hope for something even better than that, or if, because of age, duration of illness, etc. he's going to have to contend with some clinical level of OCD (it's currently "mild" on the Y-BOCS scale, but still evident) for the remainder of his life. Sammy's story led me to believe that, for some, even at a more advanced age, "sub-clinical" was possible. And maybe it still is. You're right, of course; some people may actually outgrow the distress, at least, if not all the particular behaviors.

There are so many moving parts here, I guess I'm just trying to figure out where the "finish line" may be, and then we'll figure out a way to deal with wherever that is, you know? I would love DS to come back around to where he was at, say, the age of 10, where very little bothered him and even with an OCD diagnosis, he lived his life more or less like any other 10-year-old. But if that's not achievable, I guess I'd like to be able to prepare both him and me for that reality. Hope is eternal, but I'm sort of a realist at heart, I suppose. <_<

Mom....is your son going to therapy for his OCD? I do believe that for some it becomes so ingrained in them (even as a result of PANDAS) that they may have some residual issues they need to overcome through ERP or CBT. It seems like ERP may be more successful for PANDAS kids...anyone agree? But, I also think eventually they would not need the therapy. I think a portion of parents on this forum would say they can see themselves as having a slight form of OCD...but they can live with it, fight it if needed,and they function completely fine. So, dare I say, even if you cannot rid the OCD 100%, it doesn't mean he will be slave to it.

I will take my son as example. With the last exacerbation he had residual OCD. We had to rid him of it with at home ERP. The 2 previous exacerbations, all the OCD went away on it's own w/o therapy. But, with the last strep triggered exacerbation, once we worked on all remaining rituals, habits, etc, he was okay. He does not need to continue to work on it or fight it now. Now if we didn't try to conquer the residual OCD head on...I really don't know what would have happened.

I will also say that with residual OCD, it wouldn't necessarily worsen immediately after going off meds. It will be at a plateau. Now if it doesn't get addressed in a timely manner, I could see it to start spiralling as the OCD learns it can take more control of the individual.


Nancy
Mom of PANDAS DS17, Senior in High School - Planning for College


#14 vickie

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Posted 05 April 2010 - 06:13 PM

Believe it is achievable. I think he can achieve sub-clinical. But don't let test scores tell you that. Let the calmness, easiness, and hapiness he will achieve speak for his recovery. Recovery is a long road, but you can and will get there.



Yes, DS has been in and out of CBT and ERP since he was first (mis)diagnosed with OCD at the age of 6; since he "hit the wall" with this exacerbation last May, he's been in more intensive ERP both with a therapist and at home, and we do see some gains there. I believe the abx is what has given him the leverage to use what he's learned in therapy as, before abx, he was way to strung out with anxiety to effectively implement anything!

I'm just trying to figure out if we're going to be able to get back to the "old" baseline (pre-May 2009), or if we dare hope for something even better than that, or if, because of age, duration of illness, etc. he's going to have to contend with some clinical level of OCD (it's currently "mild" on the Y-BOCS scale, but still evident) for the remainder of his life. Sammy's story led me to believe that, for some, even at a more advanced age, "sub-clinical" was possible. And maybe it still is. You're right, of course; some people may actually outgrow the distress, at least, if not all the particular behaviors.

There are so many moving parts here, I guess I'm just trying to figure out where the "finish line" may be, and then we'll figure out a way to deal with wherever that is, you know? I would love DS to come back around to where he was at, say, the age of 10, where very little bothered him and even with an OCD diagnosis, he lived his life more or less like any other 10-year-old. But if that's not achievable, I guess I'd like to be able to prepare both him and me for that reality. Hope is eternal, but I'm sort of a realist at heart, I suppose. <_<

Mom....is your son going to therapy for his OCD? I do believe that for some it becomes so ingrained in them (even as a result of PANDAS) that they may have some residual issues they need to overcome through ERP or CBT. It seems like ERP may be more successful for PANDAS kids...anyone agree? But, I also think eventually they would not need the therapy. I think a portion of parents on this forum would say they can see themselves as having a slight form of OCD...but they can live with it, fight it if needed,and they function completely fine. So, dare I say, even if you cannot rid the OCD 100%, it doesn't mean he will be slave to it.

I will take my son as example. With the last exacerbation he had residual OCD. We had to rid him of it with at home ERP. The 2 previous exacerbations, all the OCD went away on it's own w/o therapy. But, with the last strep triggered exacerbation, once we worked on all remaining rituals, habits, etc, he was okay. He does not need to continue to work on it or fight it now. Now if we didn't try to conquer the residual OCD head on...I really don't know what would have happened.

I will also say that with residual OCD, it wouldn't necessarily worsen immediately after going off meds. It will be at a plateau. Now if it doesn't get addressed in a timely manner, I could see it to start spiralling as the OCD learns it can take more control of the individual.



#15 ghostrider

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Posted 06 April 2010 - 01:31 PM

Thanks for all your responses. This is quite a valuable information which is helping us overcome this thing. Right now my kid is having head shake tic as there were slew of strep infections in our area and his school and we are trying to overcome this and trying to get a appointment at UC irvine here in So cal. Will post any update after that.
Cheers




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