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new book on PANDAS journey due out fall 2009


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Anyone here heard about this new book Saxing Sammy out this fall 2009 that discusses the recovery from PANDAS with the help of a Dr. Daniell Geller and Catherine D Nicolaides, MD

Pediatrician Developmental Pediatrics

975 Tuckerton Rd

Marlton, NJ 08053

(856) 983-6675

 

I am so excited to read this. Does anyone here know this woman named Beth Maloney? I heard of this from a few posts she made on serendips exchange http://serendip.brynmawr.edu/exchange/node/1769. I wonder if she has ever posted here and how we could talk to her? I bet we have to wait for the book to come out. I am really excited! http://www.savingsammy.net/index.html

Check out her site.

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Thanks! the book looked interesting.

 

I did check out the serendipt exchange place...what an aggrevating format for trying to communicate to other PANDAS parents. All the dates are jumbled and you can't tell what is what! I should add that I tried to post some information and I don't even know what happened to my post, I couldn't find it!

 

On thing I did notice about Beth Maloney (an attorney, obviously not a science person) is that she is telling people to get an ASO level and that is a "test for PANDAS". <_< We all know better....

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Hi, y'all:

 

Great to see that this horrible illness is getting some press. Raised visibility can only help! I pre-ordered the book on Amazon and can't wait to read the story. Since Ms. Maloney's son Sammy's situation sounded much like our son's (older when diagnosed - age 12; severe, debilitating OCD and tics that rendered him homebound; dismissed by most docs as not PANDAS), I e-mailed her to find out what treatment(s) eventually worked for Sammy. I was, quite frankly, stunned by what she told me.

 

She never did any immunomodulatory treatments for Sammy (no IVIG, no PEX).

 

Sammy's cure consisted purely of augmentin, but extremely high dose: 2000 mg daily for a full year! She said that if they ramped the dose down at all, the behaviors (OCD, tics) returned. After a year at 2000 mg daily of augmentin, they went to 1000 mg daily for another 3 years.

 

Not surprisingly, she warned against the use of psych meds in general and SSRIs in particular. These all made Sammy's symptoms worse. (But this is still the "recommended treatment" according to most docs... arrghh.)

 

Just wanted to share this. If we had a local doc who was willing to help us, I'd be all over increasing the augmentin dose to see if that helps. Think I'll bounce this off of Dr.'s K and Latimer to get their take.

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Brian,

 

Thanks soooooo much for sharing that info. I was so curious what treatments she did, (of course we all are), I didn't know how I was gonna make it to Sept. :)

 

So, I take it they stopped all antibiotics after 4 years, at age 16? Do you know what they do now (treaments) and how he does now with illness and/or strep?

 

Thanks again!!

 

Kelly

 

How is your son?

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Hi, y'all:

 

Great to see that this horrible illness is getting some press. Raised visibility can only help! I pre-ordered the book on Amazon and can't wait to read the story. Since Ms. Maloney's son Sammy's situation sounded much like our son's (older when diagnosed - age 12; severe, debilitating OCD and tics that rendered him homebound; dismissed by most docs as not PANDAS), I e-mailed her to find out what treatment(s) eventually worked for Sammy. I was, quite frankly, stunned by what she told me.

 

She never did any immunomodulatory treatments for Sammy (no IVIG, no PEX).

 

Sammy's cure consisted purely of augmentin, but extremely high dose: 2000 mg daily for a full year! She said that if they ramped the dose down at all, the behaviors (OCD, tics) returned. After a year at 2000 mg daily of augmentin, they went to 1000 mg daily for another 3 years.

 

Not surprisingly, she warned against the use of psych meds in general and SSRIs in particular. These all made Sammy's symptoms worse. (But this is still the "recommended treatment" according to most docs... arrghh.)

 

Just wanted to share this. If we had a local doc who was willing to help us, I'd be all over increasing the augmentin dose to see if that helps. Think I'll bounce this off of Dr.'s K and Latimer to get their take.

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That is very interesting. This certainly fits with our experience (and our daughter, at 10 with various episodes involving very severe OCD reaction, (+ facial tics) is essentially 100% after 5 months of antibiotics (and one steroid burst.)

 

Whether it is the immunomodulatory effect of antibiotics that EAMom has made reference to, or an anti-inflammatory effect (which Perlmutter told us was inherent in Amoxicillan, from their research at NIH) either way, I think long term antibiotics have made a huge difference in the brain-healing of our daughter.

 

I have no idea how much Augmentin that is relative to a "typical" therapeutic dosage, but if it worked that is good news indeed.

Everytime I hear of SOMETHING working, and healing occuring that is good news to be sure--

 

Thank you for the info. on the book--good news.

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Yesterday we saw yet another Neurologist who frowned on the use of antibiotics. Said she recently attended a conference on the superbug and how kids on prophylaxis can get really sick. Of course she seemed against the PANDAS disgnosis altogether. Said our rheum who passed on my son's case was a leading researcher in immunology and he didn't think there was enough to prove it existed. I get so mad. Why don't any Dr's in NE OH get this or believe it exists? Is it because of the Harvey study? They all believe in treating the sympoms with psychiatrists and psychologists. I keep hearing the same thing and I have went to 3 hospitals. Cleve Clinic, University Hospitals and Akron Childrens. Maybe Ohio State would know more. She believed the research is moving to the OCD and autism and tourettes and away from the PANDAS. I told her wait till 2011 Leckman will prove the relationship with PANDAS and the brain barrier. She said his focus will be on OCd and the tourettes. Another closed minded Dr. Doesn't want to help us I guess. Dr. Latimer said we could come to her.

 

Brian,

 

Thanks soooooo much for sharing that info. I was so curious what treatments she did, (of course we all are), I didn't know how I was gonna make it to Sept. :)

 

So, I take it they stopped all antibiotics after 4 years, at age 16? Do you know what they do now (treaments) and how he does now with illness and/or strep?

 

Thanks again!!

 

Kelly

 

How is your son?

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Anyone here heard about this new book Saxing Sammy out this fall 2009 that discusses the recovery from PANDAS with the help of a Dr. Daniell Geller and Catherine D Nicolaides, MD

Pediatrician Developmental Pediatrics

975 Tuckerton Rd

Marlton, NJ 08053

(856) 983-6675

 

I am so excited to read this. Does anyone here know this woman named Beth Maloney? I heard of this from a few posts she made on serendips exchange http://serendip.brynmawr.edu/exchange/node/1769. I wonder if she has ever posted here and how we could talk to her? I bet we have to wait for the book to come out. I am really excited! http://www.savingsammy.net/index.html

Check out her site.

 

Thank you for posting this information. I am going to pre-order the book. Much of my family is in Philadelphia, which is very close to Marlton NJ. Thank you for also posting these doctors contact information!!

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I am with you PMom, if this would "go away" at puberty ... what a blessing.

 

I do wonder though, if it is more likely to "go away" IF it is under control at puberty...so there seems to me, for us, there remains an impetus to do everything in our power to treat our children, of course, to get it under control, for the sake of their "present" time.

 

Interesting-- I just picked up a new (2009) book by Dr. William Sears (anyone read his "Baby" book?) The book is "The NDD Book" , NDD standing for Nutrition Deficit Disorder.

 

I picked it up as when leafing through it I found he has a section in there about the vital importance of Omegas, and the effects of not getting enough, etc. He even has handwriting samples of before and after Omega treatment which looked alot like our daughter's PANDAS exacerbation writing and post PANDAS exacerbation samples. He makes a case for Omegas and ties them to OCD behaviors as well... Well, Omegas have been high on our list and we continue to give these as well as C, D, and immune booster (zip fizz--Costco.) Antibiotics though, I think, are key.

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Dr. Sears is so right on IMO. Before I had my kids, I thought he was a bit extreme...all that baby-carrying, long term breast-feeding, co-sleeping stuff...and then I had my 1st dd and I ended up a believer. (And she just wouldn't sleep in that darn crib!) by the time I had my 2nd I had totally given up on the crib (but dd #2 would start the night in the amby baby hammock http://www.ambybaby.com/ , which worked well for us). Even with the hammock, she would mysteriously levitate (sometime in the middle of the night) to our bed to nurse and sleep the rest of the night.

 

I do wish Omega 3's were the cure for PANDAS...I guess our kids just aren't that simple! But, if Sears can help a majority of kids by improving their diet, that is a good thing.

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  • 2 weeks later...
Anyone here heard about this new book Saxing Sammy out this fall 2009 that discusses the recovery from PANDAS with the help of a Dr. Daniell Geller and Catherine D Nicolaides, MD

Pediatrician Developmental Pediatrics

975 Tuckerton Rd

Marlton, NJ 08053

(856) 983-6675

 

I am so excited to read this. Does anyone here know this woman named Beth Maloney? I heard of this from a few posts she made on serendips exchange http://serendip.brynmawr.edu/exchange/node/1769. I wonder if she has ever posted here and how we could talk to her? I bet we have to wait for the book to come out. I am really excited! http://www.savingsammy.net/index.html

Check out her site.

 

 

We have an appointment with Dr. Geller on June 18. We will be sure to post on the forum here after the appointment. Sounds like Sammy's dosage of 2000mg a day was high but not crazy high. I am pasting the adult dosage recommendations from HealthCentral.com below. If I've done my math right, people over around 100lbs get the adult dosage. So from below, Sammy's dosage was twice the standard adult dosage, but only a little more than the dosage given for more severe or upper respiratory infections. Anybody been in contact with Beth Maloney about the Oprah push. Seems to me the fact she has such a compelling story coming out in book form would be appealing to the Oprah folks. Alex

Dosage: Adults

 

The usual adult dose is 1 Augmentin 500 mg tablet every 12 hours or 1 Augmentin 250 mg tablet every 8 hours. For more severe infections and infections of the respiratory tract, the dose should be 1 Augmentin 875 mg tablet every 12 hours or 1 Augmentin 500 mg tablet every 8 hours.

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