PANDAS or TS I'm totally confused now!

[tantrums]

Do all the PANDAS children on this forum have rages, tantrums, ect....?

 

My son DX tourettes has alwas been a very good boy. He has had major ticcing, but nothing else in the behavior dept. like some of what I have read here.

 

Could this be a clue? True TS is just ticcing, and true PANDAS is something more effecting the brain and body?

 

Any PANDAS parents have clear PANDAS children without the rages, ect... just OCD and tics?

 

CP

CP - I think this is what threw me. Not from my own personal experience, but that of a social worker, my job. I work with adults and kids with developmental disabilities. I had my own impression of TS and that was that it was "just tics". I was SOOOO wrong. That is why I blew off what the neurologist said initially. But I did read all of the handouts he gave me, and then more. OCD, rage, ADHD, etc... are all common with TS as well. If PANDAS was in the DSM, I bet they would be nearly identical. The one interesting factor in the TS literature was that most of it does say to rule out strep as a cause.

 

I'm not completely opposed to treating my son with TS meds if warranted, but I can tell he just isn't quite at that point yet. And of course, I don't want to mistreat, or rather NOT treat, strep leading to further damage.

 

I'm also so desperately trying to find some behavioral help, but EVERYONE doesn't treat kids this young, has wait lists months long, etc... I work for one state and live in another. I know our criterea for services here in NJ and he wouldn't meet it - would have to have a low IQ, which he doesn't have, so I don't think the PA division would be of any help. Currently going throught the Child Study Team evals so will see what they do for us.

[Chemar]

Could this be a clue? True TS is just ticcing, and true PANDAS is something more effecting the brain and body?

 

 

 

CP

 

nope, OCD and other symptoms apart from"just ticcing" are very common in genetic TS, although yes, some people with TS may only exhibit tics as their main manifestation, but from my research, it is less common to only have tics without some other issue or issues as well eg tourettic OCD, sensory dysfunction, learning disabilities, ADD/ADHD, CAPD, ODD, depression, anxiety etc probably related to the mix of genes

Edited May 17, 2010 by Chemar

[tantrums]

I am REALLY starting to wish I knew more about my family background. I was adopted as an infant and have no information. I have no TS, OCD or the like, but did have some severe depression as a teenager. I also did have a learning disability, which I think my son may have. There seems to be a major disconnect in his learning, similar to what I had and he has problems retaining certain info while he has a brilliant memory. I tested with a 148 IQ yet I have trouble with his first grade math homework, can no longer speak french (used to be fluent) and can no longer play a guitar, which I was very good at. But English, I excelled at always. My son is the opposite though, which I find interesting. He is AMAZING at math and the arts while he cannot get the concepts of reading or writing. My husbands family, all I know is there was a lot of illiteracy, but they are an odd bunch so honestly, I'll never know exactly what the true issue is/was. He has a much older brother who is completely illiterate. There must be some problem there. And I do believe his brother has some OCD issues - he hoards and has severe social anxieties. My MIL was an EXTREMELY anxious woman. So aside from not knowing my own genetic makeup, I'm thinking there is enough there to base something on. However, if you delve into any family, I'm thinking you will find similar.

 

I really was blown away though reading about TS! My husband was even more informed. His main thoughts on TS were people had to yell out swear words in order to have TS.

 

I could use some more support from my DH on this one. He basically doesn't want to believe anything is wrong, that DS is a normal kid who is a bit hyperactive and oversensitive and that he'll eventually calm down and "get it". So I'm fighting against him in trying to find help here.

[norcalmom]

Maybe those family memebrs with TS-I'm assuming they are adults now- really had pandas as kids, or untreated strep. How could you know? The diagnosis hasn't bee around for long, and even now its hard to find a doctor that knows much about pandas. The pandas theory is that the kid needs to be genetically predisposed. Like with Rheumatical Fever. So makes sense it runs in families.

 

Tics are just a symptom..I feel that TS diagnosis is like saying "you are ticcing and we don't know why, and there is very little we can do" . I would want to rule out every possible known casue before excepting that. There are probably a lot of pandas kids that have been given a TS diagnosis because drs don't know anything about pandas. And historically that was the only diagnosis availible. (after ruling out known tic causing illnesses).

 

Also, Buster's flow chart is excellent, and includes tyes of tests and types of doctors. Wish I had that info when we were at the beginning! Turns out we followed most of it, but had several time consuming and expensive detours.

 

http://www.latitudes.org/forums/index.php?showtopic=6688

 

Are there any common pandas symptoms that TS kids don't get? bed wetting? night disturbances? daytime urinary frequency? I know that there is high percentage of comorbid OCD and ADD. Anyone out there know that much about TS?

 

Good luck and please keep us updated.

[Chemar]

yes there is always the possiblilty of strep or any other microbe being a factor

 

but

 

if TS wasnt also a distinct diagnosis with clear dopamine malfunction then I would think that for example in the case of my son, it was treating him with a protocol based on Bonnie Grimaldi's program that alleviated his symptoms ie he didnt have antiobiotics (at that time not even natural ones) or any of the other PANDAS treatments but immediately showed improvement when treated with magnesium and natural serotonin boosters

 

so again, no one is suggesting strep may not have been a factor for any of the family members...just the fact that my son improved with a natural TS protocol, coupled with the generational history of manifestation in males (another TS characteristic) coupled with no known history of strep in him etc

 

I also know of enough other improvements for people with TS to feel not everyone with TS has an infection

 

there are as I mentioned above, people who have TS who do not show any PANDAS-like symptoms and there are others who do

 

that in itself seems to suggest again that TS may have a root cause different from PANDAS but that yes, some people with TS may also have PANDAS

 

 

 

Maybe those family memebrs with TS-I'm assuming they are adults now- really had pandas as kids, or untreated strep. How could you know? The diagnosis hasn't bee around for long, and even now its hard to find a doctor that knows much about pandas. The pandas theory is that the kid needs to be genetically predisposed. Like with Rheumatical Fever. So makes sense it runs in families.

 

Tics are just a symptom..I feel that TS diagnosis is like saying "you are ticcing and we don't know why, and there is very little we can do" . I would want to rule out every possible known casue before excepting that. There are probably a lot of pandas kids that have been given a TS diagnosis because drs don't know anything about pandas. And historically that was the only diagnosis availible. (after ruling out known tic causing illnesses).

 

Also, Buster's flow chart is excellent, and includes tyes of tests and types of doctors. Wish I had that info when we were at the beginning! Turns out we followed most of it, but had several time consuming and expensive detours.

 

http://www.latitudes.org/forums/index.php?showtopic=6688

 

Are there any common pandas symptoms that TS kids don't get? bed wetting? night disturbances? daytime urinary frequency? I know that there is high percentage of comorbid OCD and ADD. Anyone out there know that much about TS?

 

Good luck and please keep us updated.

Edited May 17, 2010 by Chemar

[MomWithOCDSon]

I also did have a learning disability, which I think my son may have. There seems to be a major disconnect in his learning, similar to what I had and he has problems retaining certain info while he has a brilliant memory. I tested with a 148 IQ yet I have trouble with his first grade math homework, can no longer speak french (used to be fluent) and can no longer play a guitar, which I was very good at. But English, I excelled at always. My son is the opposite though, which I find interesting. He is AMAZING at math and the arts while he cannot get the concepts of reading or writing.

From our own experience and in reading many of the posts here over the last few months, it seems that many of our PANDAS kids have some autism-spectrum challenges when it comes to learning; that's not to say that they are autistic, but just that their spacial, verbal and other "categories" of learning can mirror those found in autism testing. Our DS, also, is brilliant at math and it came naturally, while reading and writing was much more of a struggle; his memory, too, particularly long-term, is stellar. The writing continues to be a challenge during exacerbation, as his small motor skills deteriorate, which is also a common PANDAS symptom.

 

With respect to the reading, I've mentioned this book before so some of you will just have to sigh, "Not again!" and pass by this post. But we had lots of success implementing some of the tools found in Right Brained Children in a Left Brained World: Unlocking the Potential in Your ADD Child by Jeffrey Freed. Freed is an educator who's basic thesis is as follows: kids who are labeled with ADD or ADHD do not have a behavioral "illness" that requires treatment. They have learning differences that fall on the highly functional end of the autism spectrum, and they just need to be taught differently than other kids. He describes right brained kids as being "whole to part" as opposed to the left brained "part to whole" model, so, when it comes to reading, phonics don't work very well because they have trouble turning all the little vowel and consonant "parts" into "wholes." But because these kids have phenomenal memories by and large, they can learn to read very efficiently by making the most of those memories, by working more at learning the whole words, rather than insisting they break them into their phonetic parts and sound them out. Stuff like that.

 

Anyway, I think the book is genius, and we were able to teach our DS to read very quickly with Freed's techniques. The understanding and techniques have also helped us in the ensuing years, especially when DS felt as though he wasn't grasping something as quickly as his classmates; we were able to "rework" or literally re-order the lesson and/or materials and present them in a way that made more innate sense to him, and then he was off and running! Then, interestingly enough, six years later, DS was tested for his IEP and was found to have some "spatial learning differences" that, drumroll please, would put him close to lying on the highly functional end of the "autism spectrum." To which we said "Duh! Freed beat you to it!"

[tantrums]

Thanks Mom - I'll look for that book. School is SUCH a struggle. I honestly didn't expect that. He sailed through Kindergarten and was doing so well. I didn't expect him to be failing first grade And the Child Study Team is kindof looking at me like I have three heads with this PANDAS diagnosis. I find it so odd that NO kid in the school every had it?? Of course, I did use the TS diagnosis to our advantage if that will get him help.

 

I should mention, he had chronic croup when he was younger. Steroids were NOT our friend. We would call him "steroid boy". It was never a pretty thing I fear steroids. The thought of a steroid burst makes me cringe!! That sounds much more intense than inhaled steroids or a 5 day orapred dose. But then, could it be worse than the rage attacks and bad attitude we see now anyway?

 

I'm going to look into having the Cunningham test done. And I'm going to look into the other doctors mentioned. I did just return to work after 4 months disability myself, so honestly, finances are not very good right now. I have to recoup a bit financially. I can't get over all of these doctors nowadays that don't take insurance!! I have the same issue with the good doctors for my Chiari Malformation so I now how to navigate it at least. But it adds up!!!! And now with two of us Not to mention, I am still afraid DS has it as well. STILL need to get that checked out. That's yet another "unfavorable" diagnosis that doctors don't like to consider

[T_Mom]

Do all the PANDAS children on this forum have rages, tantrums, ect....?

 

My son DX tourettes has alwas been a very good boy. He has had major ticcing, but nothing else in the behavior dept. like some of what I have read here.

 

Could this be a clue? True TS is just ticcing, and true PANDAS is something more effecting the brain and body?

 

Any PANDAS parents have clear PANDAS children without the rages, ect... just OCD and tics?

 

CP

 

 

Yes, our older d had "classic" Pandas--and no rages.