PANDAS/Sydenham's Chorea/Tourette's Spectrum?

[MarkH]

I have two boys with symptoms consistent with PANDAS/Sydenham's Chorea/Tourette's. As I research, the more it appears the conditions are very similar, just varying in degree of severity. i.e PANDAS with high psychiatric symptoms/minor physical symptoms and SC/TS the opposite.

 

Autism is considered a spectrum - Autism Spectrum Disorder (ASD) - has PANDAS/SC/TS been described as a spectrum? Would it be a reach to believe with time and research, ASD and PANDAS/SC/TS will be combined into a comprehensive spectrum?

 

Mark

[saidie10]

I have two boys with symptoms consistent with PANDAS/Sydenham's Chorea/Tourette's. As I research, the more it appears the conditions are very similar, just varying in degree of severity. i.e PANDAS with high psychiatric symptoms/minor physical symptoms and SC/TS the opposite.

 

Autism is considered a spectrum - Autism Spectrum Disorder (ASD) - has PANDAS/SC/TS been described as a spectrum? Would it be a reach to believe with time and research, ASD and PANDAS/SC/TS will be combined into a comprehensive spectrum?

 

Mark

 

My first recommendation is to get the appropriate blood work done in an attempt to rule out PANDAS/Chorea. The conditions of the three movement/behavior disorders you listed are very similar so it is hard to sort it all out.

 

I wish I had answers for you about the possible connection with ASD. Sorry to hear you are dealing with two boys with troubling symptoms. It is so hard. We are dealing with two boys too whom we believe have PANDAS. We are just in the beginning stages of trying to find help although our oldest has had tics and OCB for almost two years now. We were certain we were possibly looking at a future TS diagnosis but now we are confident it is PANDAS and we are seeing the same thing in our younger son now.

 

Good luck and stick around on the board, you will find a lot of support and information.

[bgbarnes]

I have two boys with symptoms consistent with PANDAS/Sydenham's Chorea/Tourette's. As I research, the more it appears the conditions are very similar, just varying in degree of severity. i.e PANDAS with high psychiatric symptoms/minor physical symptoms and SC/TS the opposite.

 

Autism is considered a spectrum - Autism Spectrum Disorder (ASD) - has PANDAS/SC/TS been described as a spectrum? Would it be a reach to believe with time and research, ASD and PANDAS/SC/TS will be combined into a comprehensive spectrum?

 

Mark

Mark- Have you read Healing the New Childhood Epidemics: Autism, ADHD, Asthma and Allergies? It actually has PANDAS in there as well. Dr Bock actually puts ADHD on the ASD spectrum because he believes they all have the same root causes- basically something going on in the body which creates these issues ( over simplification but I am short on time tonight and wanted to answer you). I highly recommend the book-

Brandy

[peglem]

I don't think asd will be put on the spectrum w/ pandas/sc/tourettes, because, although I believe the latter can cause symptoms of asd, there are many disorders that can cause asd symptoms.

[Stephanie2]

Many children who are on the autism spectrum HAVE pandas. But they also have other biomedical issues. The more severe the issues the more severe the autism.

 

For example, 1.5 years ago my 5 yo looked quite autistic. We fixed several issues, but his MAIN, most debillitating problem was and is pandas. However, while quite debillitating, for my 2yo pandas is just one of many problems. In other words, when we get pandas under control, my 5yo will be completely neurotypical, but my 2 yo will still be delayed. Each child with autism has a different biomedical presentation, and not all of them have pandas.

 

So, I don't think that pandas can be placed ALONG the same spectrum b/c for some kids pandas is one of the major CAUSES of autism, usually along with several other factors. Am I making any sense? It's 12:15 and I should be sleeping!!

[tpotter]

You make complete sense, because we are in the same boat. My 17 yo has Asperger's and PANDAS. Yes, the PANDAS symptoms cause some of the Autistic-like symptoms, and he is certainly being treated for it. But, he still has communication, sensory and social skills problems, which are Autistic symptoms.

 

My 14 year old is like your 5 year old. Get the PANDAS under control, and he is neurotypical. That being said, because he has had it so long, he now needs help dealing with behavior problems that are now habit.

 

But, back to the original question. Get the testing done with Dr. C. to see if your child does have PANDAS, and contact one of the PANDAS doctors on the list. Because treating the PANDAS is very important.

[Phasmid]

I believe that these disorders may all be a somewhat related syndrome. Here's why:

 

My son started out 7 years ago with a few isolated tics. The diagnosis then was transient tic disorder. A year later he had full body involvement, large muscle contorting tics. The diagnosis was probable Tourette's. He soon developed vocal tics, making the diagnosis of Tourette's more likely. As he progressed untreated, he developed extremely severe OCD. He recovered and was pretty well for a few years. One year ago January, he developed mild OCD and coprolalia overnight. He has just been confirmed as PANDAS.

[DonnaD]

See Melanie's post with the article about ASD/OCD/Tourette's, etc. They are all linked in my mind as well. I say this because when my boys (Asperger's and high functioning autism with some debilitating OCD and some tics) get antibiotics for ear infections, throat infections (with/without strep) and sinus infections, they improve globally. Like most children with PANDAS, they regressed just about overnight after an upper resp infection that was likely strep. The difference is they regressed early and were dx'd with autism. Older children who develop PANDAS are dx'd with OCD, tourettes, etc., and don't always lose speech/language. When my boys lost their speech language and began behavioral regression with odd behavior, they improved each and every time they were on antibiotics. When the antibiotic cycle ended, they had major regression and sickness simultaneously. We, at that time, BLAMED the antibiotics for the regression! Many parents of ASD children still blame antibiotics and yeast. We now know better. It's the short course and subsequenet strep explosion that follows that continues the cycle.

 

I just couldn't get any doctor to take this change in my kids seriously. They ignored the obvious correlation, and STILL DO. I begged them to be on propholaxic antibiotics for chronic ear and sinus infections knowing secretely I was treating them for underlying immune dysfunction where they would improve on antibiotics. I just couldn't get any doc's to do this. Now that I've found this site, I am going to get them proper treatment. We have United Health care, so hopefully, with Dr. C's tests and a diagnosis of PANDAS, we can start the process. I will post when we begin to see improvement. I'm certain I will see it. I'm recording it this time.

 

What I'm not so certain about, is whether it will become a chronic issue for my boys due to family history. If we find they are dealing with one of the CVID or IgG deficiencies, obviously, it will be chronic. But, I have confidence, with IVIG/antibiiotics they will continue to improve while keeping infections at bay.

 

Thanks for your post!

 

Donna