Mystery Diagnosis...DISCUSS

[kimballot]

My son has documented bilateral brain damage. This was evident on eeg after what we thought was his first episode but in retrospect most likely was not. Dr.K says he has not seen this before but I am here to tell you it happened to one of my three. We know that he had normal eeg before this as it was checked when he was younger

 

wow - I am sorry to hear that about your son but glad that the show was accurate in portrayal. We have so much to learn about this condition. Thank you for sharing this information. It will push me - even harder - to get treatment.

[peglem]

My son has documented bilateral brain damage. This was evident on eeg after what we thought was his first episode but in retrospect most likely was not. Dr.K says he has not seen this before but I am here to tell you it happened to one of my three. We know that he had normal eeg before this as it was checked when he was younger

Can you clarify? I thought an eeg recorded and measured electrical activity in the brain. My daughter does have an abnormal eeg, (no seizures found, though) but no structural damage seen on 2 separate MRIs.

[P_Mom]

UGH......!!!! I agree with Jill! Sammy had over a year of continued, untreated "assault" on his brain and suffered no damage..........please no brain damage.........worrying about that mght be the proverbial "straw."

[becjonz]

I thought the episode was good. I think it accomplished the goal of bringing awareness about PANDAS but it did that in the framework of Mystery Diagnosis. This show's purpose is to showcase an individual's medical mystery and make it as dramatic as possible in about 20 minutes worth of time. Yes, they do also bring awareness to little known medical conditions but it is not the primary focus to educate on all aspects of the medical disorders or diseases.

I'm happy that this episode has and will continue to act as a catalyst to bring awareness to the uninformed and understanding to our families and friends even if it was not a one size fit all situation.

Looking at the big picture...guys, there was finally a nationally televised show about PANDAS! We spend our lives immersed in this...reading, meeting up on this board, educating doctors , explaining to and negotiating with schools and trying to weather the storms of exacerbations but the rest of the country is ignorant to all this. Well, maybe tonight there are that many more people who are now aware that PANDAS is not just a bear.

[JAG10]

UGH......!!!! I agree with Jill! Sammy had over a year of continued, untreated "assault" on his brain and suffered no damage..........please no brain damage.........worrying about that mght be the proverbial "straw."

 

My dd10 went untreated for 7-8 years and had 3 normal EEGs (ages 5,7,10)

 

I'm not saying brain damage isn't possible, unfortunately a few parents have sadly experienced this with their children. But, it seems unfair to definitively declare PANDAS causes permanent brain damage without having the research to back that up. We all don't need anymore straws or cliffs!!!

 

I would definitely agree untreated PANDAS can appear similar to brain damage in cognitive decline and loss of skills.

[dabel]

Okay....I am sorry for freaking everyone out here. I just wanted to address the mention of brain damage on the show that some were questioning. All I know is that we took him to a neurologist who did a work up on him which included eeg, physical, mri, etc. He concluded that my son had suffered bilateral brain damage due to encephalitis. This is not the same son I have wrote about before. This one actually lost his speech and failed to progress in both his fine and gross motor skills. This was after an illness which I took him in for a few of times. The second time was due to the fact that he was no longer my child. He had become very aggressive, crabby, slamming his head on the floor etc. He had been my absolute angel child before. Does this sound familiar? The doctor said that strep could cause behavioral problems (although she never mentioned PANDAS) and she decided to switch his antibiotics at that time. He has never been quite the same and has since been diagnosed with PANDAS. I don't want to scare everyone here any more than they already are. I do not think this is common as Dr.K said he had not seen this before. This was about seven years ago now and PANDAS was not really known but I have never forgot what the doctor said about the connection between strep and behavior because I found it strange at the time.....I don't find it strange anymore!! I have three of them. I should mention that my son received occupational, physical, and speech therapy for years. He has greatly improved in those areas but is still not quite there yet. The damage does not appear to have affected his cognitive abilities much if at all (we have no way of knowing what his IQ would be if this had not happened). He did have a neuropsych eval and scored quite high. As a matter of fact, he has been identified as a gifted and talented student. I am just grateful that he pulled out of it as well as he did. I hope with time and proper treatment he will get even better!

[dabel]

I also want to add that my older son who is considered a pretty severe case of PANDAS has no eeg abnormalities. Just thought I would add that for what it's worth.

[tantrums]

I caught the two week thing. However, what was said was that that is what Sammy needs NOW when he sees any symptoms creep up. That doesn't seem too off base to me. He is "back to baseline" so to speak. So he knows what his immediate symptoms of a strep infection are and is able to treat it immediately and I'm guessing prevent the auto immune response?

[dcmom]

While they certainly did gloss over the needed treatment, even for Sammy-

 

the show was excellent! It certainly captured, what we and our kids go through- plus adding a little science! I don't think we could ask for more!!!

[saidie10]

I also want to add that my older son who is considered a pretty severe case of PANDAS has no eeg abnormalities. Just thought I would add that for what it's worth.

 

Thanks for adding your story. Sounds like your children and your family have been through a lot. I hope there continues to be improvement. Keep fighting!

[airial95]

Couple of points:

 

The show mentioned 2 weeks of abx as what he needs NOW if he is exposed/gets strep. I don't think they specifically mentioned how long he was on the abx initally

 

As for the brain damage comment - this was something that our Dr brought up to us in our intial dx as well. He told us that they have no idea if this condition (if left untreated) would cause permanant brain damage, but it is a possibility. He also mentioned that many adults who have OCD, tics, etc could have been undiagnosed PANDAS children that suffered permanant "damage". Yes - this is scary, but our dr put it as best as he could - the research is still so young that they don't really know what the long term effects or prognosis is.

 

Another thing to remember, that both our Dr and behavior therapists have told us - OCD in children can become a "learned" behavior. The way it was explained to me is that since their neural pathways are still being constantly formed, if the OCD goes untreated, even if the irrational fears go away (by treating the PANDAS for example) the ritualistic behavior and compulsions may still remain since their brains are now "trained" that way, and they need to be "reprogrammed" (Not that I like to use words better suited for animals or computers to describe my child). This may be another form of permanant brain damage that's not purely physical.

 

Just a thought - but overall I thought it was well done. I agree, I saw more similarities to our case from this episode than from the book. Even though it wasn't perfect - it was great for 20 minutes of national expsosure!

[Kayanne]

Well, they also glossed over the blood work...and no mention of the strep titers as being a test for PANDAS...it is a baby step in the right direction...

[thereishope]

Did anyone say if there's a way to view it yet online?

[saidie10]

Did anyone say if there's a way to view it yet online?

 

Full episodes are supposedly available on iTunes, search Mystery Diagnosis. I didn't see full episodes on the website for the channel though, just clips.

[bubbasmom]

I just added this response to a different post as well, my son's first DOCUMENTED episode of PANDAS was cured by only antibiotics. And I will say, even though he was on 3 different antibiotics, once he got on the one that cured his strep, it was only a matter of 48 hours before symptoms began to go away. You follow me? The first two antibiotics didn't cure the strep, therefore didn't change the PANDAS symptoms. But the 3rd cured the strep, therefore the PANDAS stuff went away.

HOWEVER...... that was 2007. fast forward to Sept. 2009, where we did every antibiotic my doc was willing to give (5 or 6) IVIG was the ONLY THING that worked. Much better in December. Got strep again in February, got IVIG again in March and apparently we're good to go. Not only did we have many antibiotics, we had to do Risperadal for violence, Zoloft to keep depression like stuff under control and Concerta to help with the learning that completely shut down.

Same kid, two (or three) episodes, totallyl different treatments. Go figure!!!