Beth Mahoney & PANDAS

[memom]

Hey Grace,

 

I want to welcome you as well. Many of us on this site can relate to your story with having multiple kids with special needs. I have two with Pandas now suspected for many years. 17yo and 20yo. Out of pocket costs are huge and difficult to sustain. You will find good counsel on this board. Welcome, but sorry you are here.

 

Ellie

[tired mom]

The sad truth is we are all dealing with our own Sammy and are all capable of writing a book. Mine would be called "Keeping Katie" What about yours????? I explored one avenue that Beth used and waited months for the appt. I was very dissappointed!! "After" the book came out this particular Dr. raised her price from 1000.00 to 1200. 00. I got nothing from that experience and found myself 2 weeks later in the office of a true pandas specialist (thanks to this forum). Like everyone has said you are in a good spot now. Thank you, I needed to vent too!!!

Edited June 2, 2010 by tired mom

[tpotter]

Ellie,

 

Did you see the Turkish study that was done on young adults using PEX. It's somewhere in one of the threads (someone help me?) 4 case studies on 18 - 20 somethings with OCD/tics, and very successful! Mine are also older (14 and 17), and the 17 yo was just diagnosed last year...only figured it out, because my 14 yo has more classic symptoms (although it still took 5 years for a dx,) and then we found a wonderful dr through Diana, who wrote a paper about adolesc and adults, and my 17 yo fit. It was then diagnosed. the Turkish study gives me so much hope.

[MomWithOCDSon]

I'm not disputing what's been said here, as I don't have any inside information, but just for clarification:

 

How do we know for certain that the funds Beth is collecting from sales of the CD's, Toolkit, etc. are NOT going to the PANDAS Foundation?

 

I would want to be 100% certain of that accusation before either accepting it or passing it on, and I'm curious as to how anyone could know definitively that this is the case? Admittedly, if proceeds ARE going to the Foundation, she would be well-advised to make a statement as to that effect on the site and where charges are posted.

[Sheila]

Hi All--I've made some edits on posts here, and I agree with MomwithOCDSon.

 

It is fine for members to comment if someone doesn't think the information in Beth Maloney's Tool Kit is worth the cost. But it is not OK to post assumptions on her motives or those of anyone in her family.

 

I don't know Beth personally, but I believe she has made an important contribution to the field. She doesn't have to work with ACN or anyone else, nor does she have to produce all her material for free to avoid criticism. (Also, even when sales go to a foundation rather than directly to a person, that foundation has a right to pay staff including the director.)

 

There will be different voices out there for PANDAS, that's a given. Let's focus on agreement or disagreements on facts without getting personal--while at the same time recognizing that the current "facts" on PANDAS are a moving target, and no one has all the answers. (I know this isn't easy when many of you are so passionate about this condition.)

 

As an aside, there is no one physician who helps everyone, and costs for medical services are all over the board.

 

It sounds like Beth has already been helpful to people by answering emails, etc. The reality is that people have a right to charge for their advice and material, even on a topic as devastating as PANDAS. (Otherwise everyone writing about cancer should be expected to provide information free of charge!).

 

Thankfully, some people like Diana have volunteered their services and many have benefited. And ACN's forum will always be free.

 

Sheila

[Stephanie2]

I have to wonder if she has enough experience to really guide other parents. Her son was cured with antibiotics. Most of us have to go down a long road of abx, steroids, IVIG, maybe even PEX. Also, once when I pointed out to her that not all pandas pts. get a titer rise she kind of blew it off, in her case that was not an issue, but you miss at least 30% of the kids if you don't make that clear in your material. I haven't read it, maybe she did include that. Hopefully she had a doctor guide her in this endeavor.

 

Stephanie

[EAMom]

I have to wonder if she has enough experience to really guide other parents. Her son was cured with antibiotics. Most of us have to go down a long road of abx, steroids, IVIG, maybe even PEX. Also, once when I pointed out to her that not all pandas pts. get a titer rise she kind of blew it off, in her case that was not an issue, but you miss at least 30% of the kids if you don't make that clear in your material. I haven't read it, maybe she did include that. Hopefully she had a doctor guide her in this endeavor.

 

Stephanie

 

Stephanie, I had the exact same thoughts...also I don't believe she ever checked family members for strep, which is key IMO. In addition, "her" PANDAS docs don't seem to be very up to date or knowledgeable (compared to Dr. T., Dr. Latimer, Dr. K)....think you need high titers, don't rec IVIG, don't know about the Cunningham test, etc.

Edited June 6, 2010 by Sheila Rogers

[becjonz]

Grace,

Nothing new here but will again reiterate that this forum is a goldmine of both information and caring helpful people. I don't make it on here as often as I'd like to BUT it is nice to know that when I'm unsure and trying to wade through what is the right thing to do for my son I can turn to others who understand. I'm always so amazed by the caring and incredibly knowledgeable people here willing to offer their time and advice to help others.

[ajcire]

I think she has her experience which I think is pretty significant. Her son was certainly not just a mild case. I think she has as much if not more than some others who have found themselves now being looked at as authorities on it. She can't be expected to include everything in her packet when it's not even all stuff that is proven. It would not be responsible to put things that currently are not fact and that are based on a message board. She is basing this on her experiences and it sounds like it's a guide for the person brand new to this... a place to start. I didn't read it so I'm just guessing. Hopefully those new people find this forum first but if not, they very well might find it useful and money well spent.

I certainly am not suggesting that I think it's cool to do but I really don't think it's much different than what many people out there have done.. a billion e-books being sold out there that are full of info on things that can be found online.

[EAMom]

I think she has her experience which I think is pretty significant. Her son was certainly not just a mild case. I think she has as much if not more than some others who have found themselves now being looked at as authorities on it. She can't be expected to include everything in her packet when it's not even all stuff that is proven. It would not be responsible to put things that currently are not fact and that are based on a message board. She is basing this on her experiences and it sounds like it's a guide for the person brand new to this... a place to start.

 

I think the problem is that she has been so closed minded when others have had different experiences...her stance on strep titers (saying it is a "test for PANDAS", saying titers are far more accuarate than a culture, thinking that all PANDAS kids will have a rise) is just one example. She also has the attitude that her way is the ONLY way. I don't know if she's changed her stance on IVIG since the Austism conference...but in the fall she was pretty dead set that it was too dangerous. In any case, she certainly she doesn't strike me as someone on the forefront of PANDAS knowledge. She is just not very research orientated. When I contacted her not long after the book came out, she had never heard of Dr. Cunningham's test/research...and didn't seem particularly interested in learning about her. Hopefully that has changed...but I have never been impressed with her from a SCIENCE /research perspective. (She is a lawyer after all....)

 

I agree that she has helped many kids, and that there is something to be learned from her experience (such as sometimes you need the big gun antibiotics at high doses for a long time)...but her help has always been kind of a double edged sword IMO.

Edited June 3, 2010 by EAMom

[Doug]

I thought her son did end up doing ivig??

I am not sure where I heard that or seen

it somewhere??

my dd titers were NEVER high

but she had it

Tracie

[EAMom]

Nope...in the book she looked into it (briefly) but couldn't find anyone to do it. Sammy just had high doses of Augmentin and some med for ADHD.

[colleenrn]

There is no doubt, IMO, that Beth is helping a lot of PANDAS children, BUT how many are being told they don't have PANDAS b/c their physician is going on the belief that titers have to be elevated and are the best way to diagnose it?

 

How many children are being misdiagnosed b/c of this? How many physicians read her info and then read the info on the NIMH site?

 

I can't stand that there is just more misinformation being spread around. Why can't we all be on the same page that not everyone has to have an elevated titer?

Can all of us to have had a positive culture, yet normal titers try, yet again, to get through to her?

 

Just a thought and a little rant.

Colleen

[EAMom]

There is no doubt, IMO, that Beth is helping a lot of PANDAS children, BUT how many are being told they don't have PANDAS b/c their physician is going on the belief that titers have to be elevated and are the best way to diagnose it?

 

How many children are being misdiagnosed b/c of this? How many physicians read her info and then read the info on the NIMH site?

 

I can't stand that there is just more misinformation being spread around. Why can't we all be on the same page that not everyone has to have an elevated titer?

Can all of us to have had a positive culture, yet normal titers try, yet again, to get through to her?

 

Just a thought and a little rant.

Colleen

 

I agree!

[reactive]

Hi All--I've made some edits on posts here, and I agree with MomwithOCDSon.

 

It is fine for members to comment if someone doesn't think the information in Beth Maloney's Tool Kit is worth the cost. But it is not OK to post assumptions on her motives or those of anyone in her family.

 

I don't know Beth personally, but I believe she has made an important contribution to the field. She doesn't have to work with ACN or anyone else, nor does she have to produce all her material for free to avoid criticism. (Also, even when sales go to a foundation rather than directly to a person, that foundation has a right to pay staff including the director.)

 

There will be different voices out there for PANDAS, that's a given. Let's focus on agreement or disagreements on facts without getting personal--while at the same time recognizing that the current "facts" on PANDAS are a moving target, and no one has all the answers. (I know this isn't easy when many of you are so passionate about this condition.)

 

As an aside, there is no one physician who helps everyone, and costs for medical services are all over the board.

 

It sounds like Beth has already been helpful to people by answering emails, etc. The reality is that people have a right to charge for their advice and material, even on a topic as devastating as PANDAS. (Otherwise everyone writing about cancer should be expected to provide information free of charge!).

 

Thankfully, some people like Diana have volunteered their services and many have benefited. And ACN's forum will always be free.

 

Sheila

 

Hello to everyone as I have not posted in quite some time. We have had a long winter here; and we are glad to have summer here. In response to Sheila and all others, whether it is Beth Maloney or someone else with a story to tell...I have to say that thanks to this forum I have learned so much. I have learned from the forum directly; and in addition the forum has lead me to others from which I have learned quite a bit.

 

As it stands now, I am trying to sort out everything and come to some conclusion as to the best way to help my son. I do not ever have enough time in the day to case manage our son let alone get to this forum as often as I would like. However, one comment I should make is this: since the diagnosis of PANDAS is still uncertain, and there is no recognized ICD 9 code for it, it will remain controversial. Until the medical community catches up to all us parents, controversy will reign. I am torn by which is right: let the medical field sort it out vs. let the likes of Beth Maloney and others steer us in certain directions.

 

In the last several months I have struggled with so many decisions: steroids yes or no? antibiotics yes or no? allergy shots yes or no? a trip to Chicago? probably only if I would do IVIG which then leads to IVIG yes or no? Not knowing what to do has lead me to do nothing more than watch and wait while I study and go to a bunch of appointments. We are not in crisis mode at the moment, but have had many times in the past (remote and recent) in which we were.

 

Someday in the near future I want to write you all with what I have been learning about my son. I hope that can be soon. But I am concerned about news stories and shows and what advice is being given. I have more research to do as I have not yet read any feedback from the autism one conference. But it is my very PERSONAL opinion that we do not have all the information yet, and any attempts for any one person to say "this is how we treat" is premature.