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


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I would imagine that there is a scale of severity, recruitment of B cells and damage to the basal ganglia cells. I would also imagine there are dozens or maybe hundreds or more variables, from genetics to actual strep serotype to nutritional status, co-infections, immune function, stress, just so many things. So some percent of kids will "grow" out of it and some percent of kids just won't.

 

The danger is the minimizing attitude of oh, my child will just grow out of this or oh, this patient of mine will just grow out of it so i don't need to do my homework and be aggressive with it now.

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The danger is the minimizing attitude of oh, my child will just grow out of this or oh, this patient of mine will just grow out of it so i don't need to do my homework and be aggressive with it now.

 

Yup...I completely agree.

 

Esp. b/c IMO it can be important to treat aggressively early on (vs. remaining undiagnosed or diagnosed but undertreated for years)...my fear is that docs will undertreat, thinking "they'll grow out of it", and meanwhile, PANDAS is becoming more severe and refractory to treatment with each episode.

Edited by EAMom
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Soemone above (blessedwife I think?) says that Swedo followed up after 8 years and many pandas kids had out grown it, and could manage with minimal medication.

 

I think it is important to note she followed up with children in her study - those children were treated with IVIG, antibiotics, or PEX . So, those children didn't just outgrow it - they were treated - weather they may have outgrown it without treatment is anyone's guess.

 

I also suspect that Swedo's cases were classic acute onset PANDAS that were treated relatively promptly...not chronic children that had been misdiagnosed/untreated for years.

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The danger is the minimizing attitude of oh, my child will just grow out of this or oh, this patient of mine will just grow out of it so i don't need to do my homework and be aggressive with it now.

 

Yup...I completely agree.

 

Esp. b/c IMO it can be important to treat aggressively early on (vs. remaining undiagnosed or diagnosed but undertreated for years)...my fear is that docs will undertreat, thinking "they'll grow out of it", and meanwhile, PANDAS is becoming more severe and refractory to treatment with each episode.

 

We hear so often the comparison made between PANDAS and RF (and often make that comparison ourselves) that it amazes me how many dr's would take the undertreat route. They would NEVER think of not treating RF because "they'll grow out of it".

 

That being said, I think that the correlation to RF is where much of the "grow out of it" discussion stems from, since most kids with RF stabalize in late teens/early adulthood (although some still have issues later in life). No real medical opinion to support that - just my honest opinion.

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Blessed wife & mother,

Wanted to respond to your original post-

My daughter has primarily tics as well (her OCD behaviors are movement based too, but there are not many). We have not had success on Zithromax & I think I have read other parents report that on here. My daughter was recently switched to Zith, when it was thought she had Lyme, but we have since switched her back to Augmentin, when the tics & movements began to explode on the Zith. It's been about a week back on Augmentin & she's doing much better.

 

On the thryroid-my daughter did have something with her thyroid numbers as well. Dr. B just ran it again to see if it came back abnormal again & I don't yet have the result.

 

Just met with an infectious disease doctor (about Lyme) and had an incredible discussion about Sydenham's Chorea, b/c I've always wondered if my daughter really fell more along that diagnosis. This infectious disease doctor was by no means a PANDAS expert, but had enough knowledge to really encourage me to look at the whole thing as a spectrum. The only point that I kept reminding her is that if my daughter was diagnosed with SC, everyone would be on board with long term ABX, as she herself questioned the need for long term ABX for PANDAS. If it's truly a spectrum, then the same treatment would clearly apply. She suggested that I have my daughter see a pediatric Neurologist that specializes in movement disorders (Dr. Latimer was the first to dx her with PANDAS when her chorea and tics were at the worst)

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AmySLP,

Good point on the SC diagnosis. This is what I was diagnosed with back in '72 and as mentioned I was on long term Abx. (Although, my symptoms were really more like PANDAS than SC) I do wish the medical community could connect the two. The way I look at it, PANDAS is a cousin to SC...a close first cousin. I have a large extended family, with lots of first cousins on both sides. We were always at all the family functions and were allowed to participate and were loved and respected. PANDAS/PITAND deserves the same from the medical community...respect for a valid disorder that deserves attention and treatment options that should be covered by insurance plans. Hopefully, with researchers like Swedo and Cunningham, we will arrive there one day.

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Hello Samra, I am sorry to hear about your son. I know what you are going through and I know what your son is going through. It is very difficult. You will be hard pressed to find a doctor in the Raleigh/Durham area who can help with PANDAS. Our primary neurologist is in Charlotte and we have seen doctors in DC and Maryland. For some reason, I got way more attention back in '72 than either of my kids can get now...meaning, I was hospitalized (twice) and a battery of tests run. The only treatment I really got was the bicillin shots and Penicillin antibiotics, which were prophylactic in nature, preventing strep. I just outgrew most of my symptoms, which were mainly tics/chorea. So, today I am 90 to 95% symptom free. Currently, we are pursuing Lyme treatment for our son, who is 12. We are hoping to kill any Lyme or tick borne diseases he may have or other co-infection, and hope he will see improvement in the future (6 mos to a year most likely). He falls into the PITAND diagnosis as well, which means any infection can trigger PANDAS symptoms, not just strep. But strep is what set it off for him, and our daughter too.

 

PANDAS is a hard condition to treat. Even the doctors who understand PANDAS, don't always know what will work as each child is different. I really wish I could give you a doctor in the area that is good with PANDAS, but I just don't know one.

 

My wife is a member of a PANDAS support group in the Raleigh area. Send me a PM (personal message) from this forum and I will have her get in touch with you. You can learn more from the moms in this group, and I am hoping they can give you some info about area doctors.

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MMC,

Thank you so much for all the information. I have an appointment at Duke pediatric neurology next week. I hope we will get some help. My family contacted their doctors in France and they have suggested long term preventive antibiotics and cortizone. One other member gave me the contact information for the Raleigh group. I will contact them. I made an appointment with Dr. Harvey Singer, at Johns Hopkins, who is known for his studies about PANDAS. Unfortunately, the earliest I could get one was in October 20th.

My prayers for all of the children. Looking forward to meet the families in Raleigh.

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. I made an appointment with Dr. Harvey Singer, at Johns Hopkins, who is known for his studies about PANDAS. Unfortunately, the earliest I could get one was in October 20th.

 

 

samra -- i wish you well in your fight with this and wish you all the best with your path to follow. i suggest you do some very good research about Dr. Singer and fully understand who he is in the pandas world and where he has historically stood. good luck.

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I made an appointment with Dr. Harvey Singer, at Johns Hopkins, who is known for his studies about PANDAS. Unfortunately, the earliest I could get one was in October 20th.

 

Please be careful...Harvey Singer is one of the major naysayers of PANDAS. I would not except him to be very helpful.

 

Here's a link explaining the problems with his research:

http://www.latitudes.org/forums/index.php?showtopic=8027&st=0&p=65514&hl=singer&fromsearch=1entry65514

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  • 3 months later...

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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It is my understanding that there are a decent number of kids who out grow it. However, it depends upon whether they have other diagnosis or if their PANDAS stands alone. It also depends upon whether they get treatment throughout the course of PANDAS in childhood as well as the severity and how well they respond to treatment. There are cases in which girls have their 1st period and the PANDAS completely disappears. As kids get older, their blood brain barriers tighten up, making it more difficult fot the anibodies to cross and attack. When they are little, their blood brain barriers are much more leaky. I am 47 now but as a child, I had high fevers (no rapid Strep tests back then) chronic tonsilitis and severe anxiety and OCD symptoms. Between age 12-14 I outgrew it to a great extent. I did not have tics. I think it is imperative that we treat our kids as if they may not outgrow it; very aggressively with PANDAS specialists on board throughout.

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Pandas16: I understand your position and that it is personal. However, I would not call myself "naive". Rather, pretty highly educated and intelligent. "Outgrow" may be a poor word to utilize, but as kids grow up into adults, the brain changes immensely, causing different responses than in pre-adolescence. The brain does not complete its growth until about age 25-26. You may not feel that your experience demonstrates this occurrence (and it does occur, in many, but not all kids), but those of us with little children are working hard to get them to this point in their lives. There is also a difference in prognosis between PANDAS diagnosis only, and kids with comorbidity.

Edited by Beeskneesmommy
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