Is it dangerous not to treat it?

[michele]

Nancy I am very interested in what you are trying to convey. My son was not born autistic. In fact he seemed perfect up until he was sick at age 13 months with strep. Then he seemed to improve inbetween infections. These aspergers symptoms came on gradually with repeat strep infections and gastro issues and age. Now it seems he is not improving anymore even on meds. That link you posted would not work. Do you have another one in regards to the book?

 

For the temper and anger issues, do we need to get a behavioral therapist for like ABA? We are seeing a psychologist and psychiatrist but not seein improvements in how he handles anger. Do you have suggestions?

 

Sorry, Vicki, that passage was rather dense. No matter what the diagnosis, the book will help parents in getting a second opinion, confirming and embracing the diagnosis, assembling a team of professionals, navigating long wait lists, understanding your child's individual profile, understanding underlying biomedical factors, finding the right biomedical specialist, accessing EI and school services, knowing your legal rights and your insurance plan, advocating for your child, identifying co-existing conditions, peeling away the layers, etc.

 

Yes, I am saying that the outside triggers that are causing ASD and other disorders may be the same ones that are causing PANDAS. I don't necessarily think that PANDAS is an "undiscovered form of autism that remains latent until a strep infection". I'm just saying that outside environmental toxins, when combined with your unique set of genes, are causing specific immune, gastrointestinal, and/or metabolic problems that, in turn, are affecting the brain.

 

Nancy

 

I have "Mommy brain" so I may have to reread that a few times

 

I think I understand how that relates to autism, but how about PANDAS? The outside triggers that cause ASD may be the same ones that cause PANDAS? That would make sense. Simply because those same triggers can cause a variety of problems. I think I'm getting in over my head here. Is it leading to say that PANDAS may be like an undiscovered form of autism that for some reason remains latent until a strep infection (or I should say, for most, a strep infection) comes along and can also, in theory, go into remission? For this form, strep is the straw that broke the camel's back?

 

Maybe I should just get your book Even though my son doesn't have autism or Asperger's, I feel a connection and I feel like I can definitely learn from educating myself more on the topic of ASD.

 

I think I need to educate myself more before I add more to this conversation

[NancyD]

Hi DC Mom,

 

Re the cause of PANDAS...the antibodies produced by the body in response to the strep infection appear to be responsible for attacking both the immune system and the basal ganglia in the brain. The basal ganglia are biologically associated with movement and behavior. It can also cause a malfunction in the thought process. It is believed that the strep antibodies interact with the basal ganglia, causing tics, obsessive-compulsive disorder, and other behaviors. But other things can attack the basal ganglia, not just PANDAS -- deficiency in nutrients, toxins, viruses, and inflammation from other causes. The damage to the basal ganglia can create major problems for the entire brain.

 

With regards to testing, that must be individualized according to your child's specific issues, not just the diagnosis. But typically, the DAN doctor will want to establish a baseline level of body chemistries so they can monitor the child's progress with treatment. This may include blood count, urinanalysis, liver function, kidney function, electrolytes, calcium and magnesium levels, blood sugar, lipds, and thyroid function, etc. Then there is testing to check minerals, urine organic acids, essential fatty acids, reduced glutathione, plasma sulfate, lipid peroxides, IgE and IgG, etc. etc. And there is immune panel testing (IgA, IgM, IgG levels), IgG subclass levels, vaccine titers, PANDAS profile, viral titers, etc. (K. Bock, Healing the New Chilfhood Epidemics, 2007).

 

Yes, the immunological workup will include many of these blood, urine, and stool tests. Frankly, I would not even consider going to an immunologist who doesn't believe in PANDAS.

 

I hope I am answering your questions.

 

Nancy

 

 

Nancy,

 

Everything you have said makes sense. What type of testing do you think is helpful to isolate the cause of pandas. Do you think it is possible to minimize those causal factors to help to reduce the pandas symptoms?

 

We just started seeing a DAN. He has ordered a stool test, and we are doing a temperature test (Wilson's thyroid).

 

What is an immunological work up? I assume it is bloodwork. Is it helpful- even if the immunologist doesn't believe in pandas?

 

 

PS: Thank you to everyone on this forum. It is so helpful to my state of mind to be able to have meaningful and understandin conversation about this. Even the most well meaning family members just cannot understand this...

[NancyD]

Hi Michele,

 

Try this link:

http://www.amazon.com/First-Year-Disorders...2597&sr=1-1

 

If that doesn't work, just search for the book on Amazon or B&N.

 

I have to run out to pick up my daughter at camp but I will try to get back to your questions tonight. All good questions.

 

Nancy

 

Nancy I am very interested in what you are trying to convey. My son was not born autistic. In fact he seemed perfect up until he was sick at age 13 months with strep. Then he seemed to improve inbetween infections. These aspergers symptoms came on gradually with repeat strep infections and gastro issues and age. Now it seems he is not improving anymore even on meds. That link you posted would not work. Do you have another one in regards to the book?

 

For the temper and anger issues, do we need to get a behavioral therapist for like ABA? We are seeing a psychologist and psychiatrist but not seein improvements in how he handles anger. Do you have suggestions?

 

Sorry, Vicki, that passage was rather dense. No matter what the diagnosis, the book will help parents in getting a second opinion, confirming and embracing the diagnosis, assembling a team of professionals, navigating long wait lists, understanding your child's individual profile, understanding underlying biomedical factors, finding the right biomedical specialist, accessing EI and school services, knowing your legal rights and your insurance plan, advocating for your child, identifying co-existing conditions, peeling away the layers, etc.

 

Yes, I am saying that the outside triggers that are causing ASD and other disorders may be the same ones that are causing PANDAS. I don't necessarily think that PANDAS is an "undiscovered form of autism that remains latent until a strep infection". I'm just saying that outside environmental toxins, when combined with your unique set of genes, are causing specific immune, gastrointestinal, and/or metabolic problems that, in turn, are affecting the brain.

 

Nancy

 

I have "Mommy brain" so I may have to reread that a few times

 

I think I understand how that relates to autism, but how about PANDAS? The outside triggers that cause ASD may be the same ones that cause PANDAS? That would make sense. Simply because those same triggers can cause a variety of problems. I think I'm getting in over my head here. Is it leading to say that PANDAS may be like an undiscovered form of autism that for some reason remains latent until a strep infection (or I should say, for most, a strep infection) comes along and can also, in theory, go into remission? For this form, strep is the straw that broke the camel's back?

 

Maybe I should just get your book Even though my son doesn't have autism or Asperger's, I feel a connection and I feel like I can definitely learn from educating myself more on the topic of ASD.

 

I think I need to educate myself more before I add more to this conversation

[NancyD]

Hi Michele,

 

Most parents do not begin to see early signs of ASD until the child is 18 months, so without knowing more about your son it's difficult to say if he was already headed for the autism spectrum prior to his first strep infection at 13 months. You can view the Hallmark Developmental Milestones for 4-36 months at http://www.firstsigns.org/healthydev/milestones.htm to determine if he was meeting his important early milestones. It is certainly possible that the strep infections compromised his immune system and tipped him over the edge and onto the autism spectrum. There are some children who do not progress in development and there are others who clearly regress (lose skills they previously acquired).

 

The problem with coexisting conditions is that they can block your road toward finding ways to reduce the symptoms because those symptoms can be due to one, two, or more of the co-existing conditions. Many disorders can manifest in so many different ways (gastrointestinal overlapping with immune dysfunction overlapping with wild mood swings overlapping with allergies overlapping with social, emotional, and communication problems) and interact in so many complex ways that diagnosis can be quite difficult for practitioners with limited experience. In my book I discuss how to peel apart the layers (issues) one at a time. In addition to biological factors you have to look at the child's physical and emotional environment.

 

So if your son has regulatory/behavioral issues, you need to determine the underlying cause before you can choose an appropriate treatment. Are the regulatory/behavioral issues tied to an imbalanced sensory system, food sensitivity/allergies, gastrointestinal problems, or are they due to PANDAS? Have you treated the gastrointestinal issues? Often yeast overgrowth can cause these problems. Have you investigated food intolerances or environmental allergies? Certain foods, like gluten, dairy, soy, dyes, and addititives can cause behavioral problems. Is he on a restricted diet? Have you seen a pediatric gastroenterologist who specializes in ASD or a DAN doctor? If your son is on the autism spectrum then chances are he has sensory issues and requires sensory integration therapy. What is happening in his environment when he becomes dysregulated? Have you looked for any antecedents? Is he overreative to specific sounds, sights, taste, audio, smells? PANDAS can also be the culprit. It can cause mood dysregulation, tantrums, and rages. How are you treating the PANDAS? If he's on antibiotics he may have elevated yeast levels. If this is the case, are you treating the yeast?

 

It took me years to get to the bottom of my daughter's mood dysregulation and violent rages. She was misdiagnosed with bipolar and ADHD at the age of 6 (this is on top of the ASD and severe colitis). We tried every psychiatric med available and most made her worse. Only Risperdal helped up to a point. As I peeled away the layers one at a time (treating the ASD, sensory issues, gastro issues, yeast issues, etc.), I discovered her regulatory/behavioral issues were 100% due to the PANDAS.

 

My book will help you begin to peel apart the layers and help you put together a good team and get to know the different treatments. If you read either of my two books you will know that I am a big proponent of developmental-based therapies, like DIR/Floortime. I am not a big fan of ABA. But it does work for many children. I am very much in favor of integrating different therapies based on prioritized goals. I have a chapter devoted to this.

 

I hope this help, Michele. If you'd like to contact me outside the forum you are welcome to.

 

Nancy

 

Nancy I am very interested in what you are trying to convey. My son was not born autistic. In fact he seemed perfect up until he was sick at age 13 months with strep. Then he seemed to improve inbetween infections. These aspergers symptoms came on gradually with repeat strep infections and gastro issues and age. Now it seems he is not improving anymore even on meds. That link you posted would not work. Do you have another one in regards to the book?

 

For the temper and anger issues, do we need to get a behavioral therapist for like ABA? We are seeing a psychologist and psychiatrist but not seein improvements in how he handles anger. Do you have suggestions?

 

Sorry, Vicki, that passage was rather dense. No matter what the diagnosis, the book will help parents in getting a second opinion, confirming and embracing the diagnosis, assembling a team of professionals, navigating long wait lists, understanding your child's individual profile, understanding underlying biomedical factors, finding the right biomedical specialist, accessing EI and school services, knowing your legal rights and your insurance plan, advocating for your child, identifying co-existing conditions, peeling away the layers, etc.

 

Yes, I am saying that the outside triggers that are causing ASD and other disorders may be the same ones that are causing PANDAS. I don't necessarily think that PANDAS is an "undiscovered form of autism that remains latent until a strep infection". I'm just saying that outside environmental toxins, when combined with your unique set of genes, are causing specific immune, gastrointestinal, and/or metabolic problems that, in turn, are affecting the brain.

 

Nancy

 

I have "Mommy brain" so I may have to reread that a few times

 

I think I understand how that relates to autism, but how about PANDAS? The outside triggers that cause ASD may be the same ones that cause PANDAS? That would make sense. Simply because those same triggers can cause a variety of problems. I think I'm getting in over my head here. Is it leading to say that PANDAS may be like an undiscovered form of autism that for some reason remains latent until a strep infection (or I should say, for most, a strep infection) comes along and can also, in theory, go into remission? For this form, strep is the straw that broke the camel's back?

 

Maybe I should just get your book Even though my son doesn't have autism or Asperger's, I feel a connection and I feel like I can definitely learn from educating myself more on the topic of ASD.

 

I think I need to educate myself more before I add more to this conversation

[EAMom]

Nancy...your autism book looks great!

 

I sure hope you consider writing a book/novel about your dd (like "Saving Sammy" and "Against Medical Advice"). Your story is so amazing!

[NancyD]

Thanks EAMom! I have included bits and pieces of my daughter's story in both books (my first book was called "Could It Be Autism? A Parent's Guide to the First Signs and Next Steps"). Quite frankly, I don't know if I want to write a book just about my daughter. It's been a painful journey -- I don't know if I am ready to relive it all just yet. Besides, our journey continues. She is still on the road to recovery from the PANDAS and we are, by no means, in the final stretch. Perhaps after the PANDAS is a distant memory...

 

We have talked about writing a book together. She is a good writer and loves to write poetry. Perhaps I will wait until she is ready to do it with me.

 

Having said that, I am ready to tackle another book. I was toying with the idea of writing a book about PANDAS or one that shows how infections, toxins, and other environmental influences can trigger OCD, anxiety disorders, tourette's syndrome, and ADHD in a child and how to go about finding the underlying causes and effective biomedical treatments...but my agent is not quite sold that there is a big enough market for it. Publishers are cutting back on the books they are buying so it should be a book that has not been done before and one that will sell well.

 

I am open to ideas if anyone has any...

 

Nancy

[thereishope]

.

Edited October 18, 2016 by vickie

[Ellen]

Nancy, I think you are on to something with this idea about showing the various ways infections, toxins, and other environmental triggers contribute to these disorders and I think if you made the biomedical treatment piece a big part of your focus you might have a big enough market for your book. In my quest to help my son recover from PANDAS through working with DAN doctors and a biomedical approach, I have been eager to read any books dealing with biomedical approaches to autism or related disorders and I think many parents of kids with PANDAS, autism, OCD, Tourettes, ADHD or related disorders want to hear the success stories and want to know more about causes as well. One idea for you next book might be to collect and share stories of families who have helped their children improve and/or recover from autism, PANDAS, and other related disorders through biomedical intervention. Just a thought. If you wrote a book like this one, I would be one of the first in line to get my copy! On another note, I am glad to hear your daughter likes to write, and I hope you have a chance to write something together some time. I am also looking forward to reading your recent autism book.

 

Ellen

 

 

Thanks EAMom! I have included bits and pieces of my daughter's story in both books (my first book was called "Could It Be Autism? A Parent's Guide to the First Signs and Next Steps"). Quite frankly, I don't know if I want to write a book just about my daughter. It's been a painful journey -- I don't know if I am ready to relive it all just yet. Besides, our journey continues. She is still on the road to recovery from the PANDAS and we are, by no means, in the final stretch. Perhaps after the PANDAS is a distant memory...

 

We have talked about writing a book together. She is a good writer and loves to write poetry. Perhaps I will wait until she is ready to do it with me.

 

Having said that, I am ready to tackle another book. I was toying with the idea of writing a book about PANDAS or one that shows how infections, toxins, and other environmental influences can trigger OCD, anxiety disorders, tourette's syndrome, and ADHD in a child and how to go about finding the underlying causes and effective biomedical treatments...but my agent is not quite sold that there is a big enough market for it. Publishers are cutting back on the books they are buying so it should be a book that has not been done before and one that will sell well.

 

I am open to ideas if anyone has any...

 

Nancy

[EAMom]

Well I still vote for the novel-ly approach. I'll be interested to read Saving Sammy. I am bummed the author didn't mention IVIG and some other treatments for PANDAS in her book. Against Medical Advice (tourettes, but the boy could have had pandas for all we know) was a fast read and very touching.

[NancyD]

Hi Vickie,

 

There are a few books re toxins and how it relates to mental health, immune system, etc. though not the kind of book I would like to do. I do try to stick with material that has scientific research behind it. Little easier to get around if it's about personal experiences. I like the idea of writing about family experiences (both personal and medical) though I would love to focus on the "so-called" MH and immune disorders that may be related to toxins.

 

Thank you for your thoughts, Vickie!

Nancy

 

Are there many books out there about the toxins of our times and how it directly relates to a child's mental health? I would think w/ the influx of people turning to organic lifestyles, conspiracy theories of how the goverment is trying to lower the population, etc. people would buy such book. I can think of a number of groups that would help you market it.Do you try to stick to books w/ a scientific standing?

 

A book about family experiences w/ different rare disorders would be interesting. Personal and medical struggles. You can still touch on PANDAS in it! I also know a non profit that helps w/ that. They would probably be able to set you up w/ families.

 

Anwyay, keep us updated on what you decide to do!

[NancyD]

Ellen,

 

The tricky part -- as I touched on in my last post to Vickie -- is the lack of research. However, I can get around it if I tell the story through several familes (who have varying diagnoses) and discuss how they treated their children. I do like this idea. I would also love to do a companion documentary at the same time. That is another of my passions!

 

Have you read Healing the New Childhood Epidemics by Kenneth Bock, MD? It's very good! He presents a few detailed case studies (my daughter is one -- we have pseudonyms) and he goes into detail about testing and treatments. I highly recommend it.

 

Thank you for your thoughts and support!

Nancy

 

Nancy, I think you are on to something with this idea about showing the various ways infections, toxins, and other environmental triggers contribute to these disorders and I think if you made the biomedical treatment piece a big part of your focus you might have a big enough market for your book. In my quest to help my son recover from PANDAS through working with DAN doctors and a biomedical approach, I have been eager to read any books dealing with biomedical approaches to autism or related disorders and I think many parents of kids with PANDAS, autism, OCD, Tourettes, ADHD or related disorders want to hear the success stories and want to know more about causes as well. One idea for you next book might be to collect and share stories of families who have helped their children improve and/or recover from autism, PANDAS, and other related disorders through biomedical intervention. Just a thought. If you wrote a book like this one, I would be one of the first in line to get my copy! On another note, I am glad to hear your daughter likes to write, and I hope you have a chance to write something together some time. I am also looking forward to reading your recent autism book.

 

Ellen

[NancyD]

EAMom,

 

Part of me is still drawn to that. It would certainly be easier to write about my daughter since I would not have to research the topic! I just now asked her and she said "YES, as long as I can write about Emmy [her horse]." Horses are her passion and obsession!

 

I did read a proof of Saving Sammy and wrote a blurb for the book. It's a very fast read. I, too, wished she had discussed IVIG, PEX, and some of the other treatments. I have not heard about Against Medical Advice , but after checking it out on Amazon, I'm going to order it.

 

Love all the suggestions...thank you!

Nancy

 

 

Well I still vote for the novel-ly approach. I'll be interested to read Saving Sammy. I am bummed the author didn't mention IVIG and some other treatments for PANDAS in her book. Against Medical Advice (tourettes, but the boy could have had pandas for all we know) was a fast read and very touching.

[thereishope]

.

Edited October 18, 2016 by vickie

[NancyD]

Just going back to an old comment Vickie made, I would be interested in starting a thread that discusses the various environmental toxins that may be affecting our kids, if anyone is interested.

 

Nancy

 

I fully agree w/ you Nancy. Now, if and when, we all choose to discuss the various environmental toxins you referred to, well, that's topic in and of itself. And boy would it be a long one.

[dcmom]

I would be interested! In fact with all of the discussion of chlorine as a trigger (my daughter does not have tics, but ocd and sensory issues) I cringe every time my kids take a bath. Our horrible DC water (which we do not drink or cook with) is treated with chloramine (chlorine plus ammonia). There is no easy way to remove this from the water beyond a couple thousand dollar whole house water purifier. (We plan to move in about a year so don't want to invest here...). I have read about vitamin C tablets as able to neutralize chloramine. But if anyone has any real info on the toxicity of chloramine or removing it- I would (I think) like to hear...