OTHER DISORDERS SIMILAR TO PANDAS?

[bubbasmom]

My pediatrician's partner yesterday told me,"Oh you know there are many diseases that can be neuropsyciatric following strep that isn't PANDAS". I asked if they are all autoimmune, she said yes. She is very supportive of PANDAS but was just saying how if we can't get this resolved soon that we'd have to explore these other areas also.

But to me, by the clear definition of PANDAS, wouldn't all Pediatric Autoimmune things that effect the child's brain - which is the neuropsyciatric part of it, Disorder Associated with Strep BE THE ACTUAL DEFINITION OF PANDAS???

I was so confused and she had 100 swine flu cases so I didn't really want to stay and argue. Anyone have any clue what she's talking about? She's a very knowledgeable doctor with a lot of experience.

My son has symptoms that are different than a lot of you describe. Such as, he has very little tics - only knuckle popping and twitching while he sleeps. He has very little OCD 'routines', most of what is OCD for him is his inability to do anything that's not his idea. We leave when HE thinks its time to leave, we go to bed when HE decides its an appropriate bed time.

The for sure PANDAS issues he does have is: accute onset following strep, fits of rage, the whole 'dilated' scared eyes, the HUGE sleep disorders, learning problems that weren't there 6 weeks ago, and the whole 'waxing and waning' of these episodes, and this is not his first time following strep.

 

So we are planning on IVIG on Monday with great expectations!!

[lismom]

Hi, I was wondering whether you tried antibiotics or you are just going right away for ivig. How do you get it approved so quickly and is it covered by your insurance. Kathy

[T_Mom]

My pediatrician's partner yesterday told me,"Oh you know there are many diseases that can be neuropsyciatric following strep that isn't PANDAS". I asked if they are all autoimmune, she said yes. She is very supportive of PANDAS but was just saying how if we can't get this resolved soon that we'd have to explore these other areas also.

But to me, by the clear definition of PANDAS, wouldn't all Pediatric Autoimmune things that effect the child's brain - which is the neuropsyciatric part of it, Disorder Associated with Strep BE THE ACTUAL DEFINITION OF PANDAS???

I was so confused and she had 100 swine flu cases so I didn't really want to stay and argue. Anyone have any clue what she's talking about? She's a very knowledgeable doctor with a lot of experience.

My son has symptoms that are different than a lot of you describe. Such as, he has very little tics - only knuckle popping and twitching while he sleeps. He has very little OCD 'routines', most of what is OCD for him is his inability to do anything that's not his idea. We leave when HE thinks its time to leave, we go to bed when HE decides its an appropriate bed time.

The for sure PANDAS issues he does have is: accute onset following strep, fits of rage, the whole 'dilated' scared eyes, the HUGE sleep disorders, learning problems that weren't there 6 weeks ago, and the whole 'waxing and waning' of these episodes, and this is not his first time following strep.

 

So we are planning on IVIG on Monday with great expectations!!

 

 

MOST IMPORTANTLY: Best success on Monday! I pray it is very helpful--

 

now re: that doctor--Can you please do us all a favor and call her back and ask her for the research?

let us know! Thanks--

[Kayanne]

My pediatrician's partner yesterday told me,"Oh you know there are many diseases that can be neuropsychiatric following strep that isn't PANDAS". I asked if they are all autoimmune, she said yes. She is very supportive of PANDAS but was just saying how if we can't get this resolved soon that we'd have to explore these other areas also.

Maybe she means that there are a lot of neuropsychiatric issues that arise from PANDAS...some kids seem to have more TS, some just OCD, some have choreiform movements, emotional lability, ADD, Autistic type behaviors, Bi-polar, anorexia....

 

Okay, and A LOT of doctors believe that the SYMPTOMS of these need to be treated with PANDAS. Neuroplectic meds for ticcing, SSRI's for OCD, Stimulants for ADD. That is a really big issue for us PANDAS parents because we know what the underlying cause is, and we want to treat that directly with Antibiotics, short courses of steroids, IVIG and Plasmapheresis or Plasma Exchange.

 

My son has symptoms that are different than a lot of you describe. Such as, he has very little tics - only knuckle popping and twitching while he sleeps. He has very little OCD 'routines', most of what is OCD for him is his inability to do anything that's not his idea. We leave when HE thinks its time to leave, we go to bed when HE decides its an appropriate bed time.

The for sure PANDAS issues he does have is: accute onset following strep, fits of rage, the whole 'dilated' scared eyes, the HUGE sleep disorders, learning problems that weren't there 6 weeks ago, and the whole 'waxing and waning' of these episodes, and this is not his first time following strep

 

Now we believe that the Basal Ganglia is being attacked, causing the neurons to "fight each other" and not "hold hands and play nice"--I'm not sure if that is considered the "inflammation" part--but it is believe that the Basal Ganglia is inflamed. So a person's brain is as unique as their life experiences, genetics, environment...it stands to reason that for each child the symptoms will be somewhat unique....there is a wide spectrum of issues and varying degrees of severity with PANDAS.

 

You should not get hung up on the fact that your son doesn't tic a lot, or doesn't have compulsions. What you do have is a clear history of these behaviors surfacing after strep infections.

 

What I see in your descriptions of your son's behavior is classic OCD. You can have obsessive thoughts without compulsions. I was a little confused on this too because my DD6 completely withdrew, was dealing with excessive guilt--had to "tell on herself", was rigid about rules & routines, fussy about clothes...The pediatric psych that we saw said, "Absolutely, you can just have obsessive thoughts that don't lead to compulsions."

 

only knuckle popping and twitching while he sleeps

 

This could be considered choreiform movements -- it doesn't stop when you sleep (another name for Sydenham's Chorea is St. Vitius' Dance--because of the constant movements)

 

Best of luck on the IVIG on Monday, keep us posted.

 

Will your son be put on preventative antibiotics afterwards?....This is absolutely key to preventing another strep infection.

 

~Karen

[Suzan]

My pediatrician's partner yesterday told me,"Oh you know there are many diseases that can be neuropsyciatric following strep that isn't PANDAS". I asked if they are all autoimmune, she said yes. She is very supportive of PANDAS but was just saying how if we can't get this resolved soon that we'd have to explore these other areas also.

But to me, by the clear definition of PANDAS, wouldn't all Pediatric Autoimmune things that effect the child's brain - which is the neuropsyciatric part of it, Disorder Associated with Strep BE THE ACTUAL DEFINITION OF PANDAS???

I was so confused and she had 100 swine flu cases so I didn't really want to stay and argue. Anyone have any clue what she's talking about? She's a very knowledgeable doctor with a lot of experience.

My son has symptoms that are different than a lot of you describe. Such as, he has very little tics - only knuckle popping and twitching while he sleeps. He has very little OCD 'routines', most of what is OCD for him is his inability to do anything that's not his idea. We leave when HE thinks its time to leave, we go to bed when HE decides its an appropriate bed time.

The for sure PANDAS issues he does have is: accute onset following strep, fits of rage, the whole 'dilated' scared eyes, the HUGE sleep disorders, learning problems that weren't there 6 weeks ago, and the whole 'waxing and waning' of these episodes, and this is not his first time following strep.

 

So we are planning on IVIG on Monday with great expectations!!

 

Our neurologist put my dd for a while in the "neurological autoimmune disorder" category and he also said that there were other autoimmune conditions that caused her symptoms that were not strep related but he never elaborated either. The next time he and I talk I'll ask about that. My dd has similar symptoms as you describe as well.

 

Susan

[smartyjones]

The pediatric psych that we saw said, "Absolutely, you can just have obsessive thoughts that don't lead to compulsions."

 

can you have compulsions that don't have connection to obsessive thoughts that is OCD or is that just compulsive/impulsive behavior?

[sf_mom]

I believe he was referencing untreated: Scarlet Fever, RF, Sydenham Chorea, potentially Kawasaki's, etc. The immunologist we saw yesterday felt my son's friend might have had RF that went untreated... Originally, Dr. Cunningham and Dr. K felt it was Scarlet Fever. Either way, the child is 'still' very sick, needs help and now appears to be PANDAS. As an undiagnosed case of RF they will treat very aggressively with antibiotics and IVIG and it will be covered by insurance where PANDAS will not. THESE illness often present in similar but sometimes NOT all symptoms are present making diagnoses difficult. With our younger son, he did not have all the Kawasaki's symptoms.... so was it RF, Scarlet Fever and missed diagnosed as Kawasaki's? WHO KNOWS. In my son's friends case, his mother did NOT communicate all symptoms to Dr. at time of illness and 2 years later it is difficult to remember. Some symptoms appear post fever so the connection is never made as part of the original illness.

 

 

 

My pediatrician's partner yesterday told me,"Oh you know there are many diseases that can be neuropsyciatric following strep that isn't PANDAS". I asked if they are all autoimmune, she said yes. She is very supportive of PANDAS but was just saying how if we can't get this resolved soon that we'd have to explore these other areas also.

But to me, by the clear definition of PANDAS, wouldn't all Pediatric Autoimmune things that effect the child's brain - which is the neuropsyciatric part of it, Disorder Associated with Strep BE THE ACTUAL DEFINITION OF PANDAS???

I was so confused and she had 100 swine flu cases so I didn't really want to stay and argue. Anyone have any clue what she's talking about? She's a very knowledgeable doctor with a lot of experience.

My son has symptoms that are different than a lot of you describe. Such as, he has very little tics - only knuckle popping and twitching while he sleeps. He has very little OCD 'routines', most of what is OCD for him is his inability to do anything that's not his idea. We leave when HE thinks its time to leave, we go to bed when HE decides its an appropriate bed time.

The for sure PANDAS issues he does have is: accute onset following strep, fits of rage, the whole 'dilated' scared eyes, the HUGE sleep disorders, learning problems that weren't there 6 weeks ago, and the whole 'waxing and waning' of these episodes, and this is not his first time following strep.

 

So we are planning on IVIG on Monday with great expectations!!