Beth Maloney on Good Day LA today...

[momtocole1]

I woke up this morning and Beth Maloney and Sammy were on the Good Day LA show, Fox channel 11 (southern cal).

 

I think it is a great thing that Beth wrote the Saving Sammy book and that she is getting the word out. I just wish that when she was

being interviewed she would make a statement about the fact that antiobiotics do not work for ALL kids with PANDAS. They certainly help as we know, but for some of the more severe cases, IVIG and or plasmapherisis is necessary.

 

Also, I think that Augmentin does not work for everybody. It helped my son for quite a few weeks and then he really had a backslide, could have been dental work, etc, not sure.

 

He is now on Zith and slowly working his way back, but we still are working toward IVIG and we know we have a road ahead here.

 

Will those of you that would like to comment on this, send me back a message. I am going to compile our "feedback" on this and send a "really nice" email to Beth and ask her. It might not be something she is willing to do, but it is worth a try. I will keep all the comments confidential and send her a synopsis.

 

Thanks,

 

Judy...

[faith]

What did she say on the show? what was she talking about? was her son on it too, or just her?

 

 

Faith

[LNN]

Judy,

Beth Maloney was interviewed by AutismOne in October. I contacted AutismOne to express my frustration that Beth's message to the media was, in my opinion, incomplete. When she discusses her own experiences as a memoir, I have no issue. She tells her own experiences and that has helped many parents learn about PANDAS and encouraged some to try higher/unconventional doses of augmentin with some success. But she has made comments about IVIG and Plasmapheresis being too dangerous, and I do have issue with that. When Beth was asked in the interview about why she felt IVIG was dangerous, she responded that she had a friend who contracted (and died from) AIDS after a blood transfusion. What upsets me is that IVIG is not a blood transfusion and as a spokesperson for a foundation, she has a higher responsibility to be accurate in what she says.

 

As a result of my conversations back and forth with AutismOne, I was invited to write about my own family's experiences with PANDAS and our decision to try plasmapheresis. The article will be published in the January edition of AutismOne. I was given a "quota" of words and it's really hard to say all there is to say in a limited space. So I tried to focus on the disease and why IVIG and Pex are considered and how they may help as treatments. I didn't go into the gory details of my son's battles. There wasn't enough space in the article and it seemed awkward to tell a group of parents raising kids with autism about battles with the medical community, battles with schools, battles in trying to get the correct help for your child. I think they know a thing or two about the surreal world in which we live.

 

Initially, the idea was that Beth Maloney would also be asked to write her thoughts for the same issue. I don't know if that happened or not. But I do think that people need to speak out and make sure that the message that gets sent in the media is accurate and complete. I don't agree with the saying that "all publicity is good publicity." Now that PANDAS is finally getting some attention, it's up to all of us to be "spokesmen" and make sure that when people learn about PANDAS, they get full and accurate science, not just what's true for an individual's experiences.

 

Get your pens out!

Laura

[peglem]

Well said, Laura.

[thereishope]

Perhaps more need to write to Autism One. Don't forget that Beth was invited to speak at their international conference in Chgo in May. They should invite Dr K. He's lives right there.

[LNN]

Perhaps more need to write to Autism One. Don't forget that Beth was invited to speak at their international conference in Chgo in May. They should invite Dr K. He's lives right there.

 

My understanding is that Dr Kovacevic has been asked to speak their conference.

 

I think our focus as advocates should be on contacting interviewers prior to appearances/interviews to make sure that that they are informed and know what points need to be covered. This will help make sure that the important points get the air time. Once the interview is over, it's much harder to "correct" the message. Better to focus on getting the message right the first time.

[EAMom]

When Beth was asked in the interview about why she felt IVIG was dangerous, she responded that she had a friend who contracted (and died from) AIDS after a blood transfusion.

 

Well...if this is her thinking "You can get AIDS and die from a blood transfusion so therefore IVIG is also unsafe"... that line of reasoning will ulitmately make her look bad. People are familiar with blood transfusions (vs IVIG which the average person has never heard of) and I think most would consider transfusions 1) to be overall safe in this day and age and 2) would have one if medically necessary.

 

Yes...as a spokesperson for a foundation, what she does have a responsibility to be accurate...but after the $%^&* that is on the NIMH webiste (not recommending prophylactic abs, not recommending IVIG until "further research" has been done, and recommending treatment with psych. drugs despite a lack of research demonstrating they are safe/effective in PANDAS kids), I just have to SIGH again.

[mama2alex]

Has anyone looked at the Saving Sammy Facebook page lately? (not Beth's personal page). If you become a "fan" you can read all the posts that are going up. It seems to be just starting to take on a life of it's own. There are a lot of parents out there who are trying to get the word out to local news and national news outlets, and I saw one mom who posted asking Beth to please not...

 

Okay, I just went back to look at the post I was about to refer to, and I couldn't find it. Has anyone else had this experience? The poster was asking Beth to please not suggest tests such as ASO to "rule out" PANDAS because there isn't really a test that rules it out. Now I can't find the post. Hmmm...

 

Also, there was a mom who posted that some show called Mystery Diagnosis (or something like that) is interested in PANDAS, but her family can't put their daughter on a national stage. I now can't find this post either.

 

Maybe I'm doing something wrong?? Usually, I'm fairly good at navigating web sites, but I'm no Facebook expert.

[Suzan]

Has anyone looked at the Saving Sammy Facebook page lately? (not Beth's personal page). If you become a "fan" you can read all the posts that are going up. It seems to be just starting to take on a life of it's own. There are a lot of parents out there who are trying to get the word out to local news and national news outlets, and I saw one mom who posted asking Beth to please not...

 

Okay, I just went back to look at the post I was about to refer to, and I couldn't find it. Has anyone else had this experience? The poster was asking Beth to please not suggest tests such as ASO to "rule out" PANDAS because there isn't really a test that rules it out. Now I can't find the post. Hmmm...

 

Also, there was a mom who posted that some show called Mystery Diagnosis (or something like that) is interested in PANDAS, but her family can't put their daughter on a national stage. I now can't find this post either.

 

Maybe I'm doing something wrong?? Usually, I'm fairly good at navigating web sites, but I'm no Facebook expert.

 

She seems to delete any posts that say anything about low ASO titers for sure.... Mine was one of them.

 

Susan

[harmony]

Has anyone looked at the Saving Sammy Facebook page lately? (not Beth's personal page). If you become a "fan" you can read all the posts that are going up. It seems to be just starting to take on a life of it's own. There are a lot of parents out there who are trying to get the word out to local news and national news outlets, and I saw one mom who posted asking Beth to please not...

 

Okay, I just went back to look at the post I was about to refer to, and I couldn't find it. Has anyone else had this experience? The poster was asking Beth to please not suggest tests such as ASO to "rule out" PANDAS because there isn't really a test that rules it out. Now I can't find the post. Hmmm...

 

Also, there was a mom who posted that some show called Mystery Diagnosis (or something like that) is interested in PANDAS, but her family can't put their daughter on a national stage. I now can't find this post either.

 

Maybe I'm doing something wrong?? Usually, I'm fairly good at navigating web sites, but I'm no Facebook expert.

 

She seems to delete any posts that say anything about low ASO titers for sure.... Mine was one of them.

 

Susan

Same thing happened to me. I saw it one day and not the next,

[harmony]

Has anyone looked at the Saving Sammy Facebook page lately? (not Beth's personal page). If you become a "fan" you can read all the posts that are going up. It seems to be just starting to take on a life of it's own. There are a lot of parents out there who are trying to get the word out to local news and national news outlets, and I saw one mom who posted asking Beth to please not...

 

Okay, I just went back to look at the post I was about to refer to, and I couldn't find it. Has anyone else had this experience? The poster was asking Beth to please not suggest tests such as ASO to "rule out" PANDAS because there isn't really a test that rules it out. Now I can't find the post. Hmmm...

 

Also, there was a mom who posted that some show called Mystery Diagnosis (or something like that) is interested in PANDAS, but her family can't put their daughter on a national stage. I now can't find this post either.

 

Maybe I'm doing something wrong?? Usually, I'm fairly good at navigating web sites, but I'm no Facebook expert.

 

She seems to delete any posts that say anything about low ASO titers for sure.... Mine was one of them.

 

Susan

Same thing happened to me. I saw it one day and not the next,

I think it is great that Beth is sharing her story with the public - I think it takes a lot of courage and commitment in becoming a spokes person and advocate at such a large level. I have to say that I am very happy that her book has raised a lot of interest, but I do have to agree with the previous posts. A spokes person should be as knowledgeable as possible and understand that all of the PANDAS kids are not exactly like Sammy. While Sammy's first episode lasted for over a year- My son was diagnosed with Strep and on antibiotics 2 days BEFORE his onset and lasted one month (that was almost 4 years ago) - and he continues to have exacerbations with every and ALL infections whether they are viral or bacteria- his ASO nor anti dnase levels have always showed negative even with positive cultures. I am very disappointed that posts are being deleted from facebook- I read the one about antibody tests not being used to rule out / confirm PANDAS- and I strongly agreed- now its gone.

[thereishope]

She likes to alter the pages to her liking. She is into deleting comment and relevant links if they do not support her thoughts directly.She says it is not a blog or forum for anyone to post anything they would like on, but if someone wants to help ALL children, they need to be willing to let all info be accessible. If you know fb, you know that all groups and fan pages get people supporting the topic and voicing any disagreement. If she doesn't like that, perhaps she should not gone on fb.Since her book came out, however, a PANDAS group on fb has increased by 40 people within one month! As for PANDAS Foundation, they were obviously not ready to go public when they did. I'm starting to think they went public when they did in order to try to gain some footing in approaching Oprah. Note the timing. An organization, I thought, was made as a support group, bridge of information, and a place for people to turn to for help, not another PR tool.

 

I do feel this book may have started with good intention and I know she has helped some kids, but I'm sad to say it looks she may lost her way.

[LNN]

I think it might be worthwhile for all of us to contact interviewers prior to her speaking engagements and make sure they have background information that can help them conduct a balanced interview.

 

There are three main points that I don't feel are adequately addressed - ASO titers, treatments other than high doses of augmentin and the way Pandas can present itself. Not every kid presents the way Sammy did. I think the way Beth presents information on ASO and symptom presentation can lead parents to inaccurately dismiss the possibility of Pandas.

 

If anyone is inclined to contact interviewers, here are some sample thoughts:

 

First, sudden-onset OCD is not the only symptom nor is it necessarily the primary symptom of all PANDAS children. Many children have sudden-onset tics (motor or vocal or both) or extreme anxiety as their dominant symptom. While very common, OCD is not an essential criteria. NIMH's website lists the first of five clinical symptoms as the presence of Obsessive-compulsive disorder and/or a tic disorder. I would like to make sure your interview clarifies this point, as I feel many mis-diagnosed children will continue to be excluded if parents are not made aware of this.

 

Second, there is no test to confirm PANDAS. Statements that rising ASO and/or anti-DNase B titers are a "test" for PANDAS are incorrect. PANDAS is a clinical diagnosis based on symptoms and medical history. 37% of children who have had a strep-positive throat culture will have no rise in either ASO or anti-DNase B titers one month later. For those children who show no outward signs of strep, having elevated titers may indeed help convince a physician that strep may be involved and PANDAS may be worth consideration. It is a worthwhile test. However, if families are led to believe that a negative titer test means their child cannot have PANDAS, they will be poorly served. 37% is a large number of children who could pay a high price due to mis-information.

 

Finally, while antibiotics, both for treatment of strep and for prophylactic prevention of future infections, certainly play a key role in the treatment of PANDAS, they are not the only treatment. Research studies have found both IVIG and plasmapheresis to be effective methods to alleviate PANDAS symptoms. IVIG is widely used to treat a number of autoimmune diseases. There are certainly risks to these procedures, as there are risks with long-term use of antibiotics. None of the families who have opted for these treatments has done so without regard for the risks. But these procedures have brought significant improvements to some children and cannot be dismissed with a wave of the hand as "too risky" for consideration. Ms. Maloney herself sought plasmapheresis for her son and was only dissuaded by the fact that she could not find any doctor to perform the procedure. In the seven plus years since then, it has become more accessible. I would challenge Ms. Maloney to provide evidence to support her claims that these procedures are too risky for consideration.

[thereishope]

I tried contacting Autism One through their site and my old computer kept kicking me off their message system. I contacted Generation Rescue a week or so ago about PANDAS, not realizing they are part of the conference in May. Perhaps I will try contact them again. This time about Ms Maloney.

 

Do you know if Dr K accepted their invitation? Do you know if he was asked to speak?

[Suzan]

I think it might be worthwhile for all of us to contact interviewers prior to her speaking engagements and make sure they have background information that can help them conduct a balanced interview.

 

There are three main points that I don't feel are adequately addressed - ASO titers, treatments other than high doses of augmentin and the way Pandas can present itself. Not every kid presents the way Sammy did. I think the way Beth presents information on ASO and symptom presentation can lead parents to inaccurately dismiss the possibility of Pandas.

 

If anyone is inclined to contact interviewers, here are some sample thoughts:

 

First, sudden-onset OCD is not the only symptom nor is it necessarily the primary symptom of all PANDAS children. Many children have sudden-onset tics (motor or vocal or both) or extreme anxiety as their dominant symptom. While very common, OCD is not an essential criteria. NIMH's website lists the first of five clinical symptoms as the presence of Obsessive-compulsive disorder and/or a tic disorder. I would like to make sure your interview clarifies this point, as I feel many mis-diagnosed children will continue to be excluded if parents are not made aware of this.

 

Second, there is no test to confirm PANDAS. Statements that rising ASO and/or anti-DNase B titers are a "test" for PANDAS are incorrect. PANDAS is a clinical diagnosis based on symptoms and medical history. 37% of children who have had a strep-positive throat culture will have no rise in either ASO or anti-DNase B titers one month later. For those children who show no outward signs of strep, having elevated titers may indeed help convince a physician that strep may be involved and PANDAS may be worth consideration. It is a worthwhile test. However, if families are led to believe that a negative titer test means their child cannot have PANDAS, they will be poorly served. 37% is a large number of children who could pay a high price due to mis-information.

 

Finally, while antibiotics, both for treatment of strep and for prophylactic prevention of future infections, certainly play a key role in the treatment of PANDAS, they are not the only treatment. Research studies have found both IVIG and plasmapheresis to be effective methods to alleviate PANDAS symptoms. IVIG is widely used to treat a number of autoimmune diseases. There are certainly risks to these procedures, as there are risks with long-term use of antibiotics. None of the families who have opted for these treatments has done so without regard for the risks. But these procedures have brought significant improvements to some children and cannot be dismissed with a wave of the hand as "too risky" for consideration. Ms. Maloney herself sought plasmapheresis for her son and was only dissuaded by the fact that she could not find any doctor to perform the procedure. In the seven plus years since then, it has become more accessible. I would challenge Ms. Maloney to provide evidence to support her claims that these procedures are too risky for consideration.

 

Is there a way that we can find out about the interviews beforehand and let everyone here know so we can contact them? I think it is very important that this group, some of the most knowledgable parents of PANDAS kids, get heard. Hopefully Beth will come around and see we need to be in this together to help as many kids as possible.

 

Do we know if Dr. K, Dr. L, Dr. T, etc. are on her list of doctors?

 

Susan