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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 


Dr William Walsh Autism OCD PANDAS Depression and Methylation Article




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13 replies to this topic

#1 bigmighty

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Posted 07 July 2012 - 05:00 AM

I read a synopsis about this - true 1st person account of tourettes (co-written by James Patterson). But it was sudden onset at age five and accompanies by severe OCD. Wondering if anyone has read this and if he had PANS. http://www.amazon.co... medical advice


#2 ShaesMom

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Posted 07 July 2012 - 05:09 AM

I read a synopsis about this - true 1st person account of tourettes (co-written by James Patterson). But it was sudden onset at age five and accompanies by severe OCD. Wondering if anyone has read this and if he had PANS. http://www.amazon.co... medical advice



I read it three years ago when my dd was in the middle of PANS. It was a really good book. I especially liked that it was from the child's point of view. Of course at the time I couldn't help but see the similarities with PANDAS. If I remember correctly, I think it was at least talked about in the book.

#3 p_mom

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Posted 07 July 2012 - 05:26 AM

I read it. I tend to believe it was PANDAS....sudden onset..woke up shaking his head one day/ocd. Tried all meds, everything and nothing worked. I do not recall a mention of it thought. The great part is it that it spontaneously resolved one day! (I think he was around 17)

#4 sss

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Posted 07 July 2012 - 07:07 AM

I'm a fan of some James Patterson fiction books, so I read this one awhile back.

I did not care for it, and I'll tell you why-
the boy 'just seemed to grow out of it'
'mind over matter, and it was fixed'

This was my impression.
Not realistic, IMO.
Daughter 9, PANS, probable congenital Lyme,
started biomedical treatments w/DAN! and GF/CF at age 4
Cam K 175, 2 HD IVIG's, 2 LLMD's- had improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella, 2011.
Both of us have treated, dd9 had long break, now she is back in tx for Bartonella.

#5 eamom

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Posted 09 July 2012 - 05:38 AM

I read a synopsis about this - true 1st person account of tourettes (co-written by James Patterson). But it was sudden onset at age five and accompanies by severe OCD. Wondering if anyone has read this and if he had PANS. http://www.amazon.co... medical advice


yes, I thought it was PANDAS.

I wonder if the extreme exertion (didn't he go on some type of survival camp?) somehow reset his immune system? (or he outgrew it?)

I have a friend with IBD who got a really bad illness while on a trip (had to be hospitalized), and that reset her immune systerm. Her doctors were amazed, they they scoped her the next time they could find no evidence of bowel disease.

Edited by EAMom, 09 July 2012 - 05:40 AM.


#6 nicklemama

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Posted 09 July 2012 - 07:54 AM

I read it and enjoyed it but I couldn't help but want to scream out its PANDAS!!!!!!!!!!
DS10, dx 2010 PANDAS, 1.5yrs after first symptoms
IVIG #1- May 2011, IVIG #2- Nov 2012
Ehrlichia, anaplasma dx Mar 2013
Lyme dx 2014

#7 bigmighty

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Posted 09 July 2012 - 12:05 PM

I read it and enjoyed it but I couldn't help but want to scream out its PANDAS!!!!!!!!!!


Yeah. I only read the dust jacket, but that's sort of what I was thinking...

#8 mayzoo

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Posted 09 July 2012 - 01:10 PM

I'm a fan of some James Patterson fiction books, so I read this one awhile back.

I did not care for it, and I'll tell you why-
the boy 'just seemed to grow out of it'
'mind over matter, and it was fixed'

This was my impression.
Not realistic, IMO.


I have considered this book for some time. I may go with the kindle version as I do not seem to have the time anymore and I misplace books now days. It is supposed to be a true story, not fiction. Not sure how true to the actual story they were, but still non-fiction none the less.

DD (AKA Kiddo :) ) Born 2002. Dxs-PANDAS, Hypogammaglobulinemia, EBV, HHV-6, High Coxsackie b4, b6, A7, A9, A16, A24; Arnold Chiari Malformation 1, Arachnoid Cyst, Syrigiomylia, Autism, Bi-lateral Strabismus, and Torticollis. Retrospectively, she has likely had PANS since 4-5 yrs old. Very successful T & A 02-2013--cultured actinomyces bacteria.

 

Started Stephen Buhner's herbal antiviral protocol for EBV on 05-05-2014.  Herxed off and on for a month while we got up to full dosages.  Stable now, so we will wait and see how much this protocol helps her in the long run.   I am expecting a trial of 4-6 months and full therapy to be about year, with years of immune modulation after viruses are under control.


#9 sss

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Posted 09 July 2012 - 01:15 PM

I realize it was a true story- perhaps my dislike for it was the child suffered horribly for years
(close to home)

Then, and it's been a while now, so this is the impression I am remembering, it was like:
Poof! He turns 18 or something, realizes he can control this somehow, or he somehow grew out of it.

I didn't find that story a good example, KWIM?

JMO.
Daughter 9, PANS, probable congenital Lyme,
started biomedical treatments w/DAN! and GF/CF at age 4
Cam K 175, 2 HD IVIG's, 2 LLMD's- had improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella, 2011.
Both of us have treated, dd9 had long break, now she is back in tx for Bartonella.

#10 mayzoo

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Posted 09 July 2012 - 01:36 PM

I realize it was a true story- perhaps my dislike for it was the child suffered horribly for years
(close to home)

Then, and it's been a while now, so this is the impression I am remembering, it was like:
Poof! He turns 18 or something, realizes he can control this somehow, or he somehow grew out of it.

I didn't find that story a good example, KWIM?

JMO.


Yeah, kiddo has a neuro who is convinced everything that is wrong her is all in her head or bad parenting....so I KWYM. IE...kiddo has a condition (Chiari) that something like 96% of patients with Chiari suffer with headaches. Kiddo has headaches. This neuro says *if* she has headaches they are unrelated to her Chiari :wacko: . She is not only in the 4% that does not have Chiari headaches, she is in the infinitesimal percentage that has unrelated headaches :angry: . It grates on me badly so we are going to have to replace him. We have not even broached the PANDAS aspect. We started trying to figure out what was up with her by seeing him. He decided she had horrendous nightmares 4-5 times a night and stopped talking for 3 months (among her pages of other sx) for the attention *head smack*.

I may still get the book, but thanks for the heads up.

DD (AKA Kiddo :) ) Born 2002. Dxs-PANDAS, Hypogammaglobulinemia, EBV, HHV-6, High Coxsackie b4, b6, A7, A9, A16, A24; Arnold Chiari Malformation 1, Arachnoid Cyst, Syrigiomylia, Autism, Bi-lateral Strabismus, and Torticollis. Retrospectively, she has likely had PANS since 4-5 yrs old. Very successful T & A 02-2013--cultured actinomyces bacteria.

 

Started Stephen Buhner's herbal antiviral protocol for EBV on 05-05-2014.  Herxed off and on for a month while we got up to full dosages.  Stable now, so we will wait and see how much this protocol helps her in the long run.   I am expecting a trial of 4-6 months and full therapy to be about year, with years of immune modulation after viruses are under control.


#11 911rn

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Posted 10 July 2012 - 01:50 AM

I would like to add that there is a biological, physiological basis for kids "outgrowing" some conditions that are inflammatory, immune related. The thymus gland is very active in children and adolescents and may be responsible for some of the immune dysregulation/over reaction that our children suffer. With puberty- the thymus gland atrophies and essentially goes away thus kids seem to outgrow or Poof, it was fixed scenarios- get over it.

So, as not to be hard on these type of stories, it is possible but not for the reasons people tend may attribute to it?! Something occurred that they were not even aware of- atrophy of the thymus gland. I, for one, cannot wait for my child to go through puberty!!! Neurologists have assured me that, from their experience, some of these conditions improve "on their own" due to this very reason. Bring on the hormones!!

Just an interesting bit of body trivia and one that may help us all! Not sure how this plays into PANDAS but I'll take any help I can get.

#12 ajcire

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Posted 10 July 2012 - 03:01 AM

I can't dislike the book just because at age 18 he got better.. it's the story written from the perspective they had on what happened. I can't really find fault with it. My ds is very mild... things have come and gone with no real logical explanation.. and some things crop back up with no good explanation.. It definitely definitely made me think of pandas when I read it.

#13 sss

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Posted 10 July 2012 - 03:22 AM

I can't dislike the book just because at age 18 he got better.. it's the story written from the perspective they had on what happened. I can't really find fault with it. My ds is very mild... things have come and gone with no real logical explanation.. and some things crop back up with no good explanation.. It definitely definitely made me think of pandas when I read it.



** I am thrilled he got better at 18.
It's just my personal opinion about a book, completely shadowed by the fact at the time I had a 4 year old child suffering greatly, and perhaps took it as, there is nothing that will work, nothing I can do until maybe she prayerfully grows out of it, when she is an adult. Not sure my family could have gone on at the place we were at for another decade or two- incredibly painful.
Still a little tender for me- no disrespect.**
Daughter 9, PANS, probable congenital Lyme,
started biomedical treatments w/DAN! and GF/CF at age 4
Cam K 175, 2 HD IVIG's, 2 LLMD's- had improved, but still challenging in areas at times.
Mom-tested positive Igenex PCR Lyme, and positive Bartonella, 2011.
Both of us have treated, dd9 had long break, now she is back in tx for Bartonella.

#14 kos_mom

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Posted 10 July 2012 - 06:14 AM

DS from 13 and a half to 18 with no symptoms. (Nine and a half to 13 and a half were spent fighting off severe OCD triggered tics with amoxicillin and a year and a half of ERP.) Then strep at 19, and they came back--not like before. There were few tics but a lot more classical OCD--handwashing etc., also a scary episode of body dysmorphia accompanied by suicidal ideation. I had to fly up to his college and spend two days in the ER with him while they found him a psych bed. They put him on ativan for six weeks (in retrospect a weird choice) and he seemed better. Then another strep at 21 and the OCD once again came back. He just had T and A and am praying he can go back to college in fall and at last have a normal semester.




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