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


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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.

 

 

MMC...if your children still have it, then sounds like you didn't really "outgrow" it. The symptoms may be more tolerable for your, and you were functional, but you must have passed something on. Just a thought.

 

Also, I really don't think all kids "outgrow" it. We just got one under control with IVIG, and are also treating for Lyme (he had both PANDAS and Lyme.) DS15 is a different story, and has a much more severe case. He also has at least 5 different infections: strep, lyme, bartonella, babesia, erlichiosis, and was exposed to MycoP by me (IgG elevated.) He has had PEX, which helped him a huge amount, IVIG 6 times, which helped him a lot for about 3 weeks at a time (which is why we and the doctors suspected there was more involved), and has been sick since he was 8 years old (but not diagnosed until 12 years old, and then not treated "properly" until he was 13 1/2.)

 

Personally, I believe that there's a good possibility that many of those people out there with Autism, Bipolar, possibly schizophrenia, tourettes, OCD, etc may have PANDAS/PITANDS (I'm considering the other infections, such as Lyme, EBV, etc as PITANDS when I say this), really did not get proper treatment, and aren't even functional.

 

So, as much as I respect Dr. Swedo, and all her work, I respectfully disagree with her on this one. If a person "grows out" of an illness, in my opinion, there wouldn't be any of it left, and there would be nothing to pass on.

 

Please don't all start getting mad at me over this...it's just my opinion based on personal experience and observation. I am by no means, criticizing Dr. Swedo or anyone else.

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JAG I use the term loosely to refer to other diagnosis that may be present. It's hard to see if one illness has subsided when it is coupled with another - muddies the waters, so to speak.

 

TPOTTER I want to be sure that it is understood that I did not take the stance that ALL kids "outgrow" PANDAS, but I have spoken with several big gun specialists who have reported that "some" kids outgrow PANDAS, particularly if it is their only diagnosis and if the PANDAS is mild to middle of the road, rather than severe. The way that you are using the term "outgrow" takes it to a higher level than what I have been addressing. I speak of it as being symptom free, whereas you seem to be addressing genetic predisposition. I DO think there is genetic predisposition as evidenced by the plethora of kids who have a family history of Strep, Scarlet Fever, Rheumatic Fever, etc., including my kiddo.

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JAG I use the term loosely to refer to other diagnosis that may be present. It's hard to see if one illness has subsided when it is coupled with another - muddies the waters, so to speak.

 

TPOTTER I want to be sure that it is understood that I did not take the stance that ALL kids "outgrow" PANDAS, but I have spoken with several big gun specialists who have reported that "some" kids outgrow PANDAS, particularly if it is their only diagnosis and if the PANDAS is mild to middle of the road, rather than severe. The way that you are using the term "outgrow" takes it to a higher level than what I have been addressing. I speak of it as being symptom free, whereas you seem to be addressing genetic predisposition. I DO think there is genetic predisposition as evidenced by the plethora of kids who have a family history of Strep, Scarlet Fever, Rheumatic Fever, etc., including my kiddo.

 

 

Bees...I agree with what you're saying. Unfortunately, I think when doctors, who are already doubting that the disorder exists, hear it mentioned (especially in reference to something that someone from the NIMH said) that kids frequently outgrow it, they may think...why even treat it? That's why I said what I did. I want doctors to realize that some may just get less symptomatic, and more functional, but they really haven't outgrown it.

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Bees...I agree with what you're saying. Unfortunately, I think when doctors, who are already doubting that the disorder exists, hear it mentioned (especially in reference to something that someone from the NIMH said) that kids frequently outgrow it, they may think...why even treat it? That's why I said what I did. I want doctors to realize that some may just get less symptomatic, and more functional, but they really haven't outgrown it.

 

I also fear that doctors will think kids outgrow it and limit treatment. I have heard from several mainstream doctors that PANDAS is "self limiting" and that we should just use psych meds alone to alleviate symptoms until he outgrows it or overcomes an exacerbation. While I have no doubt that some children have had only one or two exacerbations, I don't think we want to send a message that this is a disorder that can be outgrown if left untreated. Furthermore I think we are coming to understand (as EA Mom has said) that oftentimes our kids DO NOT return to their pre-exacerbation baseline and there is a gradual loss of function with each exacerbation.

 

I really think we need to hope for the best (that our own children will not continue to battle this for the rest of their lives), but prepare for the worst - by treating infections and autoimmune dysfunction aggressively and teaching our children how to recognize PANDAS symptoms to get biological help when needed, as well as using CBT to cope with remaining symptoms.

 

Bees - this is not to discredit what you have said in any way. I think you are saying the same thing in saying that some children will not go on to continue to have exacerbations as adults. ... but recognizing that not all children will be so fortunate.

Edited by kimballot
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Bees...I agree with what you're saying. Unfortunately, I think when doctors, who are already doubting that the disorder exists, hear it mentioned (especially in reference to something that someone from the NIMH said) that kids frequently outgrow it, they may think...why even treat it? That's why I said what I did. I want doctors to realize that some may just get less symptomatic, and more functional, but they really haven't outgrown it.

 

I also fear that doctors will think kids outgrow it and limit treatment. I have heard from several mainstream doctors that PANDAS is "self limiting" and that we should just use psych meds alone to alleviate symptoms until he outgrows it or overcomes an exacerbation. While I have no doubt that some children have had only one or two exacerbations, I don't think we want to send a message that this is a disorder that can be outgrown if left untreated. Furthermore I think we are coming to understand (as EA Mom has said) that oftentimes our kids DO NOT return to their pre-exacerbation baseline and there is a gradual loss of function with each exacerbation.

 

I really think we need to hope for the best (that our own children will not continue to battle this for the rest of their lives), but prepare for the worst - by treating infections and autoimmune dysfunction aggressively and teaching our children how to recognize PANDAS symptoms to get biological help when needed, as well as using CBT to cope with remaining symptoms.

 

Bees - this is not to discredit what you have said in any way. I think you are saying the same thing in saying that some children will not go on to continue to have exacerbations as adults. ... but recognizing that not all children will be so fortunate.

Further- when the children do get to be adults, we want the adult specialists to understand and treat the disorder as well. We're very close to legal adulthood. Her pediatrician has agreed to follow her to age 21, but what will we do for specialists? In a way it will be great to get away from PCH, but as difficult as it is to get pediatric specialists onboard, I can only imagine the nightmare I'm facing in trying to get the adult medical community to acknowledge my child needs their help.

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Well, heck yeah and great point! I would theorize that if kids weren't treated at all, those who might "outgrow" it would have a much decreased chance of doing so. Interesting that you bring me full circle. I have been very angry at the medical community here because they really threw my little boy to the wolves. He was 1st diagnosed at age 2.5 because of eye tics along with Strep, that subsided when given abx (the 1st of many such symptoms that increased in severity throughout the next half of his life). I now remember that the diagnosing doc (a mother herself) looked at me quizically when I expressed a lot of worry over these neurological symptoms and said "lots of kids have tics - they are very common and most kids outgrow them". I think she was simplifying PANDAS in that it was just a few eye tics in relation to Strep - not really getting the whole autoimmune picture. Boy, did the "little" eye tics ever progress and what a mess we find ourselves in. I bet she isn't losing any sleep like I am over this!

 

In addition, my great hope is that my son will "outgrow" this, meaning, his often debilitating symptoms will decrease to the point of being highly functional...perhaps disappear if we are lucky. If I thought it was sure fire or simple I would not be so aggressively treating him. I think the treatment along with growth gives him a better chance of making it. I do not for a minute, take it for granted that this will easily subside and there are many nights that i lie awake worrying about his future - wondering if he will have severe problem into adulthood and who will be there for him when I am not.

 

Now I see how I may have been misunderstood and appeared to have simplified my thought process. This is a frightening, severe and dangerous disorder that has me feeling truly frantic, many days out of each month. So sorry if my words belied the true impact that I feel this dosorder has - I just cannot bear to entertain the idea that we won't beat this.

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Interesting that you bring me full circle. I have been very angry at the medical community here because they really threw my little boy to the wolves. He was 1st diagnosed at age 2.5 because of eye tics along with Strep, that subsided when given abx (the 1st of many such symptoms that increased in severity throughout the next half of his life). I now remember that the diagnosing doc (a mother herself) looked at me quizically when I expressed a lot of worry over these neurological symptoms and said "lots of kids have tics - they are very common and most kids outgrow them". I think she was simplifying PANDAS in that it was just a few eye tics in relation to Strep - not really getting the whole autoimmune picture. Boy, did the "little" eye tics ever progress and what a mess we find ourselves in. I bet she isn't losing any sleep like I am over this!

 

A few months ago I sat down and wrote a very long letter to the neurologist that told us 3 times over a 6 year period (age 6-12) that my son did not have PANDAS because he did not have strep throat and - even if it was PANDAS- he would not treat it any differently. Over those 6 years we stopped looking for signs of infection because we were told we were "looking for a needle in a haystack". We stopped seeking blood work and immune work ups.

 

Finally, at age 12 when my son could barely walk due to joint pain and fatigue and he could not concentrate in school and kept falling asleep in class - the neurologist suggested an ssri. The neurologist actually refused to do blood work that was suggested by a PANDAS doc. We declined the SSRI and got the blood work ordered by another doc. My son had become immune deficient and had been fighting mycoplasma. We went to a PANDAS doc who ordered a CT scan and found a huge cyst in his sinus that had been brewing for over a year and was eroding the bone. His C3D levels were 8 times the upper limit because his immune system was in overload. His cam Kinase was 156.

 

I am sorry - we CAN NOT treat this the same way you would treat simple short-lived tics or small bouts of anxiety. The neurologist ended up with a 6 page letter (really, nicely worded - all things considered!), several articles, and a bunch of my son's blood results - along with pictures of the sinus cyst- delivered to his office. I know he received them because he had to sign for them. I don't know if he ever read them. I can only hope he did and hope it has benefitted other children.

 

I suggest that if any of us find a few moments we take the time to get in touch with former doctors who told us that our kids were fine and not to worry, to let them know the outcome and educate them a bit about PANDAS/PITAND

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Kim - it is horrible, what happened to your son and your family. I simply do not understand the arrogance of a doc who REFUSES to draw blood or dig deeper, when it's hardly even an extra effort to do so. The absolute arrogance of the pediatric community over here (including a specialist at Duke Children's (Neuropsychiatrist) has blown my mind! Thank God for the docs who have the ego strength to stick their necks out and work toward answers and cure! Many, many positive wishes to you and your kiddo!

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katsmom---do you mean IVIG treatments? I have had a nurse friend ask me why they don't do IG injections (not via IVIG)---she used to give them for autoimmune problems long ago.

 

My daughter was initially treated with penicillin vk at the age of 12 but eventually went through one year of monthly IVIG injections because the tics got so bad that she couldn't function in daily life. After each treatment she was a little better, but after a year of treatment she has not shown any signs of PANDAS, she is now 21.

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tpotter...you are correct, I did not "outgrow" the genetic part of PANDAS, unfortunately. I wish that had been possible, believe me. So, it's safer to say I experienced diminished symptoms over the years. PANDAS became a non-issue for me until my kids got it. If anything, I am more aware of my lingering symptoms because of all the experiences and info out there on this forum and the internet. I would say the symptoms are certainly minor, not life-altering. (but what would I look like if I had not had PANDAS, cannot say) I had a moderate case of PANDAS. My daughter has a mild case of PANDAS, son has moderate to severe at times (also PITAND). Dd still has some OCD and sensory issues that we can attribute to PANDAS, and her ADD is most likely b/c of PANDAS. And she still has some tics, but they are not severe and not socially limiting. Ds has not hit puberty yet. We will see what this holds for him, and I hope it is the beginning of a time of lessening of symptoms for him. I believe my children will always have PANDAS, and they need to be aware of this if they have children.

 

I agree to be leary of the "outgrow it" phrase from doctors. While symptoms may diminish with time (hopefully), it does not lessen the need for treatment. The medical community still needs to do more research and develp more solid treatment plans and options. We have treated ds's PANDAS aggressively with PEX and one IVIG and Abx. He is currently being treated for possible Lyme or co-infections with various Abx. We have seen some improvement, but very slow improvement...he still really struggles with tics all day long. Our dd has been treated with proph Abx to prevent strep and ADD meds. Dr Latimer suggested IVIG for dd, b/c of potential worsening of OCD. Our experience with IVIG for ds was a bit rough...she saw that and wants nothing to do wtih IVIG, she says she is "good". She will be 16 in Dec. So, we mainly concentrate out efforts and money on ds and hope that time does heal. It did with me.

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Pandas16...this is kind of hard to answer accurately, going from memory...but at age 15, I had already experienced 75% reduction in symptoms I would say. PANDAS began at age 7 for me, so had it for 8 years by then. By age 18, 90% reduction. So, thankfully I had a great reduction in symptoms before adulthood. I had no treatment other than proph abx. I did not have recurring strep. I only remember one positive strep test as an adult, and don't think this caused an increase in symptoms. I do not think I fall into the PITAND category, like my son does.

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Hi - this is all anecdotal and my own supposition but based on what I have seen in my kids ds3 almost 4 and dd8, both with a PANDAS/PITAND dx. I strongly believe that my sister, my husband and his sister all had PANDAS/PITAND as children.

 

Both my sister and sister-in-law still exhibit OCD tendencies and would perhaps just squeeze in with a formal dx. Both also have other issues that I would attribute to lingering PANDAS or PITANDS.

 

My dh's moods (and they can be both mercurial and difficult to deal with) come in waves which I am only now just linking to illness in our kids. I thought it was the stress but when I look back over our years together before children, I can see a similar pattern.

 

I think people can appear to outgrow it and some may actually do that. I suspect what is more likely is that symptoms lessen, symptoms become the norm for that person, they have fewer exposures, deal with them better. The immune system settles some but I fear that for many they never truly outgrow it, although, it gets far easier and less noticeable...

 

 

just my opinion....

Edited by dut
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