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Do kids usually grow out of P.A.N.D.A.S.?


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I listened to the live radio blog tonight with Sweedo and I think she said most kids grow out of it before high school. Has anybody had this experience or know anything about this? I had never heard this and I was thinking my son (now 12) would be living with it forever unless the traditional therapies worked. He is on Azith now and actually it seems to be making him worse not better. I'm on day 18 and his tics yesterday were at an all time high. He also just got bloodwork back and he has some elevated thyroid antibodies and low TSH. I'm hoping addressing this next week might help as well. Has anybody had thyroid issues with this? He has high strep titers too.

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Guest pandas16

I was diagnosed with PANDAS at age 10. I'm now age 23 and still have PANDAS. I was treated quickly and properly and PANDAS did not interfere with any "critical development" years. I still have mild exacerbations during allergy season and when I get sick. Sometimes when I take abx, my PANDAS symptoms worsen. Once I started taking a probiotic, they got better.

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I had PANDAS as well as a child but was never diagnosed as it did not exist then, I am 36 now. But from learning about my children's PANDAS cases I now know it was what I had as well. My case was not as severe as theirs is but I still have all my symptoms now that I did back then. Dr. K told me that whatever symptoms they are left with at 18 (ballpark age) they will carry with them into adulthood. So do your best to treat now, IVIG had spectacular results with my DD until she got another Strep infection and all was lost after only 6 weeks.

 

I encourage you to give him high doses of probiotics, when all those antibiotics are killing everything off it makes my DD worse too, but when I keep up on her probiotics it REALLY helps a lot.

 

I wish you the best.

 

Kristy

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I had PANDAS as a child (was diagnosed as SC), at age 7. I grew out of it for the most part...became a non-issue by the time I was 14 or 15. By age 18, I was 95% clear of symptoms. But, I never had extreme OCD or anxiety. Mainly dealt with tics/chorea. My only treatment was bicillin shots for 10 years, and then pen vk as a proph abx until age 19 or 20. I am 46 now.

 

There was certainly a genetic predisposition, as both of our children have PANDAS. That is the worse part of the disorder for me in adulthood...that my children now have it.

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I had PANDAS as a child (was diagnosed as SC), at age 7. I grew out of it for the most part...became a non-issue by the time I was 14 or 15. By age 18, I was 95% clear of symptoms. But, I never had extreme OCD or anxiety. Mainly dealt with tics/chorea. My only treatment was bicillin shots for 10 years, and then pen vk as a proph abx until age 19 or 20. I am 46 now.

 

There was certainly a genetic predisposition, as both of our children have PANDAS. That is the worse part of the disorder for me in adulthood...that my children now have it.

 

what age did your shots start? till what age..?

how often did your recieve them...monthly? for 10 years?

at what point did you start proph abx..did it overlap with shots?

 

I am amazed that at age 46, pre pandas, pre everything...that they gave you long term abx ....you were very fortunate!!!!

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Please.... everyone keep in mind that it was the INTERVIEWER who made the comment that kids might outgrow it ... her child, who had a mild case, apparently did. She noted Swedo might not agree with her, but did not give her a chance to respond.

Later in the broadcast, Swedo did say it is important to continue antibiotic and/or IVIG treatment so they get well.

While I have heard of cases where the child outgrew it, it is definitely not my understanding that this is the rule!

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Later in the broadcast Swedo mentioned that she followed up after 8 years or so had gone by after a study and over half of all of the kids grew out of it by eighth grade or high school, some the symptoms were so mild they didn't consider them a problem, and some were be manage with medication. I do remember the host saying what you are talking about though.

 

 

Please.... everyone keep in mind that it was the INTERVIEWER who made the comment that kids might outgrow it ... her child, who had a mild case, apparently did. She noted Swedo might not agree with her, but did not give her a chance to respond.

Later in the broadcast, Swedo did say it is important to continue antibiotic and/or IVIG treatment so they get well.

While I have heard of cases where the child outgrew it, it is definitely not my understanding that this is the rule!

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Guest pandas16

I really don't think it's possible to outgrow this. It's an autoimmune response because B-cells remember. One could have easily said that I outgrew PANDAS when I was in high school after my treatments. I was totally symptom free but I also rarely got sick. As soon as I got sick again though or had something that triggers autoantibodies, I had symptoms. Maybe the ones who outgrew it simply had no further triggers. I am one of those who was assumed to outgrow it.....but I'm stating honestly that I didn't even though my symptoms are very manageable. I think if PANDAS was a disease that can be "outgrown" there wouldn't be 40% of adult cases of OCD that don't respond to SSRI's....

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Maybe what Swedo meant was that is easier managed as an adult. I sure hope it gets easier for my son. I would say my son is a mild case compared to Sammy or some of the others I've heard of, but it's still very hard. :)

 

 

I really don't think it's possible to outgrow this. It's an autoimmune response because B-cells remember. One could have easily said that I outgrew PANDAS when I was in high school after my treatments. I was totally symptom free but I also rarely got sick. As soon as I got sick again though or had something that triggers autoantibodies, I had symptoms. Maybe the ones who outgrew it simply had no further triggers. I am one of those who was assumed to outgrow it.....but I'm stating honestly that I didn't even though my symptoms are very manageable. I think if PANDAS was a disease that can be "outgrown" there wouldn't be 40% of adult cases of OCD that don't respond to SSRI's....

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Fixit...started bicillin shots at age 7. Received them monthly for 10 years, until 17 or 17 and a half, somewhere in there. I felt funny after a shot one day and they were concerned I may have had a reaction, so this is when I started on oral abx. Once starting Pen VK, I stopped the shots altogether. Yes, I think you are right, very fortunate to have gotten the abx. I never got strep again after the age of 7, so this obviously worked. This started way back in 1972. The doctors at Duke knew what Sydenham's Chorea was and this was the diagnosis. I had a very supportive small-town country doctor...he was also known as a brilliant doctor and had good connections at Duke. He personally gave me the shot every month for 10 years...it cost $8.00 each visit.

 

Compare this to today...all the insurance mess, all the naysayers about PANDAS. We took our daughter to Duke 10 yrs ago when she started showing signs of PANDAS. They said it's just tourettes. We said, no it's not...b/c I had SC, which now would be more accurately described as PANDAS based on my actual symptoms. They (Duke University Medical) did not recognize PANDAS 10 yrs ago. Not sure about now...have not gone back. But, they sure got me on the right track back in 1972, I agree. Probably due to my mother's earnest prayers to God...she got a lot of prayers answered in the positive direction, I believe. She was an amazing Christian woman.

 

I told Dr Latimer who my doctor was...still remembered his name, Dr Griffith. She actually knew him.

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Fixit...started bicillin shots at age 7. Received them monthly for 10 years, until 17 or 17 and a half, somewhere in there. I felt funny after a shot one day and they were concerned I may have had a reaction, so this is when I started on oral abx. Once starting Pen VK, I stopped the shots altogether. Yes, I think you are right, very fortunate to have gotten the abx. I never got strep again after the age of 7, so this obviously worked. This started way back in 1972. The doctors at Duke knew what Sydenham's Chorea was and this was the diagnosis. I had a very supportive small-town country doctor...he was also known as a brilliant doctor and had good connections at Duke. He personally gave me the shot every month for 10 years...it cost $8.00 each visit.

 

Compare this to today...all the insurance mess, all the naysayers about PANDAS. We took our daughter to Duke 10 yrs ago when she started showing signs of PANDAS. They said it's just tourettes. We said, no it's not...b/c I had SC, which now would be more accurately described as PANDAS based on my actual symptoms. They (Duke University Medical) did not recognize PANDAS 10 yrs ago. Not sure about now...have not gone back. But, they sure got me on the right track back in 1972, I agree. Probably due to my mother's earnest prayers to God...she got a lot of prayers answered in the positive direction, I believe. She was an amazing Christian woman.

 

I told Dr Latimer who my doctor was...still remembered his name, Dr Griffith. She actually knew him.

 

one more question, sort of..till i think of something els :)

besides keeping the strep away....did you notice or did your parents note any difference in your movements..in short fashion ie..2 weeks to six monhts or did it take till you 14-15 before you saw a drop in your movements ie..to lets say 70-80%improvement...and then the last

15% at 18years of age...just trying to get time line and severity

of course you weren't on daily abx....

did you do daily abx at onset for awhile to start and then swith to bicillin?

or did you get to 70-80% quickly and only flare with other illnesses, teeth?

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Fixit...there was not a decrease in movement disorder symptoms upon starting bicillin injections (that I am aware of). My symptoms decreased a little each year, and really started decreasing at puberty, which was between 12 and 13 if I remember correctly. Then, decreased year by year, until almost gone at 18. Sorry to be so vague, but there was no charting of symptoms and that was a long time ago...and parents are deceased. I did not do daily abx at onset. I immediately started the bicillin, while I was at Duke. I was there about 10 days for observation and tests, including a spinal tap, a few eeg's and gobs of questions by physicians and interns. Close to the last day, I got my first shot...in the rump...and it hurt and I did not like that nurse one bit that gave it to me, I do remember that much. I don't remember symptoms flaring with viruses or such, but they could have. This certainly happens to ds12 (PITAND), but not so much with dd15. An oh, I actually went back to Duke when I was 17 for a couple of days for more testing, and this is when they said to stop the bicillin injections and started on daily abx. If only our PANDAS kids could get this much attention these days? What happened?

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MMC -- Thanks so much for sharing your story. It's pretty remarkable, and I find myself feeling two very distinct things: first, I'm so happy to hear that you've "recovered" 100%, but second, the whole idea of 10+ years of antibiotics is incredibly daunting! How many years did you actually take abx, injections and oral, combined?

 

Unless I've missed a more recent perspective or statement on her part, I don't believe Swedo embraces the idea of lengthy (multi-year) abx regimens, and I know our doctors are reluctant to carry on indefinitely in that vein, partially because of the literature on the topic coming out of the NIMH.

 

Anyone else here been successful in securing 5+ years of abx for either themselves or their kids?

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Thank you for taking the time to answer all my questions on the thread...i think all can be helped by any little tidbit, especially getting a man's point of view..and i think not many ticcers come back to talk.

My dh tics..he is successful and of course has an intelligent and beautiful wife :P:D:blink: ..

and i want the same for my boys

dh and his brothers are the most optimistic people i have ever met.....his brothers conditions have remitted better(to (99%) than my dh..his oldest brother had tonsils out..younger brother though has arthritis and psoris really bad....

but dh says he dosnt' remember anything i ask him about, ie waxin waning, onset.....or so he says..he truly may not have been effected at all by his condition...it's killing me!

 

ps dh still gets strep 3 times a year..

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