Executive Function Skills?

[81lumberjack]

Our 14yo son had a marginal case of Pandas(high titers, some tics) for 2-3 years, between ages of 9-12. Titers have been way down now for 2 years and tics/most symptoms are gone. Current struggles center around deficits in "executive functioning" skills: initiative, organization,time management,planning, working memory, response inhibition, etc.

 

Apparently, with high strep titers, damage to the basal ganglia can occur that can lead to executive function deficits like those described above. We are pursuing focused behaviotal intervention stuff to work on catching his skills in these areas up.

 

My question here is about actually physically "repairing" the basal ganglia after the strep titers are normalized. Any biomedical or other medical-type suggestions?

[Guest pandas16]

I had trouble with those things when I was sick with PANDAS, but once I was treated all of those problems went away. Do you have Cunninghams Test results indicating a non detectable level of anti neuronal antibodies? Even if strep titers are down, the autoimmune reaction can continue once triggered and require immune related treatment. I was told over the years that permanent damage was not done to the basal ganglia, instead the autoantibodies interfered with neuronal signaling resulting in abnormal behavior. This usually resolved after treatment unless PANDAS went undiagnosed for a really really long time since perhaps infancy and normal behavior was never learned. Can you share where you learned permanent damage was done? I'm really interested in this because I've really researched this and couldn't find anything to support it. I was so scared of permanent damage all through adolescence however back to your question, I always just went to the library to get work done- my mom just dropped me off at the library and said get it done and I did. Also you should know for example when I was diagnosed with PANDAS it kind of went like this....

 

Summer of 97--- Anxiety, Organizational Skills, Executive Functioning Lost, Time management lost because of hyper activity

October of 97----Moody/ ADHD like symptoms

November 97------Ear infection then six weeks later ABRUPT severe OCD

February of 98----Strep then six weeks later abrupt and severe body tics and vocal tics and arthritis

 

After treatment things disappeared in reverse order, first the tics, then the OCD, the last things to go were the ADHD, Anxiety. Once PANDAS was totally treated I didn't have any problems with executive functioning skills. Really check and make sure PANDAS is as gone as you think it is with the Cunningham test. You might just require more treatment to get rid of the very last symptoms. Also I thought strep titer were just indicative of a past infection- I didn't think they did damage?

Edited April 16, 2011 by pandas16

[JAG10]

I would concur with pandas16; my dd11's symptoms are remitting in that exact order- tics, then OCD, then ADHD/executive functioning skills. 15 months into treatment, we are still working on resolving those organizational/task completion, time management and working memory areas. The tics and OCD remitted fairly quickly with her first HD ivig last May. My girl was sick a very long time before we knew what this was, but the trend continues to improve. Something else to remind yourself of with this EF skill set is that for our middle school kiddos, the expectations in these areas specifically increase at an incredibly rapid rate which may dwarf some of the progress that is occurring. I just have to remind myself what a hot mess she was this time last year and acknowledge how much she has improved. We had a big accomplishment this week; she had a math test on calculating area and volume of different shapes/containers. Although she was one of the last ones to finish, she did not need extended time in the resource center, remembered all of her units of measurement and she scored 44/45!!! I think she was just as proud of not needing extended time as she was of her score.

 

We are continuing with HD ivig as her bloodwork indicates immune system dysfunction. We have 2 more scheduled and then we will reassess her status.

[Kayanne]

Thank you for sharing your story, and I'm sorry that your family suffered for so long, and is still dealing with the effects of PANDAS. Can you tell me what has made you believe this?

 

Apparently, with high strep titers, damage to the basal ganglia can occur that can lead to executive function deficits like those described above. We are pursuing focused behavioral intervention stuff to work on catching his skills in these areas up.

 

I'm just curious if a doctor has told you this. In my humble opinion, the jury is still really out on this. Also, ASO and Anti-Dnase titers, while indications of strep infection markers, are not the antibodies directly responsible for PANDAS. (I wasn't sure if that was what you were implying or not).

 

Some things that you might consider trying all have to do with fighting inflammation: fish oil, a cleaner diet, motrin, prednisone, making sure all allergies are under control.

 

Good luck.

[81lumberjack]

I had trouble with those things when I was sick with PANDAS, but once I was treated all of those problems went away. Do you have Cunninghams Test results indicating a non detectable level of anti neuronal antibodies? Even if strep titers are down, the autoimmune reaction can continue once triggered and require immune related treatment. I was told over the years that permanent damage was not done to the basal ganglia, instead the autoantibodies interfered with neuronal signaling resulting in abnormal behavior. This usually resolved after treatment unless PANDAS went undiagnosed for a really really long time since perhaps infancy and normal behavior was never learned. Can you share where you learned permanent damage was done? I'm really interested in this because I've really researched this and couldn't find anything to support it. I was so scared of permanent damage all through adolescence however back to your question, I always just went to the library to get work done- my mom just dropped me off at the library and said get it done and I did. Also you should know for example when I was diagnosed with PANDAS it kind of went like this....

 

Summer of 97--- Anxiety, Organizational Skills, Executive Functioning Lost, Time management lost because of hyper activity

October of 97----Moody/ ADHD like symptoms

November 97------Ear infection then six weeks later ABRUPT severe OCD

February of 98----Strep then six weeks later abrupt and severe body tics and vocal tics and arthritis

 

After treatment things disappeared in reverse order, first the tics, then the OCD, the last things to go were the ADHD, Anxiety. Once PANDAS was totally treated I didn't have any problems with executive functioning skills. Really check and make sure PANDAS is as gone as you think it is with the Cunningham test. You might just require more treatment to get rid of the very last symptoms. Also I thought strep titer were just indicative of a past infection- I didn't think they did damage?

 

 

 

 

Probably used the wrong term (damage), and certainly didn't mean to imply that i knew for a fact that permanent damage is done to the basal ganglia. Meant to just ask what we should do if everything else is waaaay waaaay better except executive function stuff. For a couple of years or so his tics have really been non-existent, his titers are 1/3 to 1/4 as high as they were three-four years ago, major improvement in every area, with the exception of the issues relative to executive function. Several resources I have seen reference that executive function is compromised often times in Pandas kids. We have done a ton of biomedical stuff for various issues over the years and have seen vast improvements in recent years once we focused improving his methylation pathway, which has involved a bunch of supplements, etc

 

I've heard of the Cunningham test but we have not done that. I guess there are some that question if that test is truly indicative of current panadas status, but maybe it's the best out there?

 

Finally, here's a link to an 8 year-old journal article that does suggest that there are occasions where SPECT scans have shown that permanent damage is possible. Read the section on imaging. http://qjmed.oxfordjournals.org/content/96/3/183.full

[Guest pandas16]

I read the article about the permanent damage- it is really interesting. I suppose if really severe PANDAS goes untreated for a long time it would be logical. However, although changing, PANDAS is classically defined as having an abrupt onset. I think it would be kind of hard to miss in many cases- wouldn't it? Unless PANDAS is in infancy. I mean I know when I woke up one morning completely insane- my parents didn't just say "oh" and let it continue- they fixed it similar to many parents on this forum. I think the brain can also re compensate- I remember reading about a girl who had a seizure disorder and doctors at Johns Hopkins literally removed half her brain and she is completely functional today. The brain can do some amazing things that I don't think science fully understands.

 

I would really recommend having Cunninghams Test done though- that decipherers between an immune related neurological disease or a chemical imbalance.

Edited April 16, 2011 by pandas16