Dr. Harvey Singer @ Hopkins

[kimballot]

Have to say that the Thryroid info is so valuable-THanks you. MY daughter just had this rechecked by Dr. B, b/c what do you know, it was off last time he checked it. I can't remember if it were hyper or hypo, but will be calling to check those results on Monday. Thanks for the info on Dr. Latimer's feeling on this (of course if it's not related to thyroid) b/c I thought we should at least go see her for a re-visit.

 

I treat Parkinson's Patients everyday (I have a special certification in a voice therapy program for them), so I literally look at tremors in these individuals every day & can't help thinking about my daughter. I remind myself that this is the basal ganglia in both these disorders, and maybe that's why their movements are somewhat similiar. BUt now I worry will my daughter have an increased chance of PD. Just got a new referral of a woman in her late 40s-she will be the youngest PD pt. I ever treated. Scary with an onset so young.

 

when my son was in exacerbation last year he started to develop a parkinson -like shuffling gait. It was scary. It did go away after treatment. I also worry about Parkinson's later. That is for future research studies to determine....

[tpotter]

PD is my fear too, because my dad just passed away from it (PD and dementia.) But, after I found out about PANDAS, I spoke a lot to my dad about it, because he had sudden onset of depression and other symptoms. He grew up without abx, and his sister died from probable ARF. I suspect he may have had it. And, who's to say that Parkinson's doesn't have something to do with this.

[AmySLP]

Have to say that the Thryroid info is so valuable-THanks you. MY daughter just had this rechecked by Dr. B, b/c what do you know, it was off last time he checked it. I can't remember if it were hyper or hypo, but will be calling to check those results on Monday. Thanks for the info on Dr. Latimer's feeling on this (of course if it's not related to thyroid) b/c I thought we should at least go see her for a re-visit.

 

I treat Parkinson's Patients everyday (I have a special certification in a voice therapy program for them), so I literally look at tremors in these individuals every day & can't help thinking about my daughter. I remind myself that this is the basal ganglia in both these disorders, and maybe that's why their movements are somewhat similiar. BUt now I worry will my daughter have an increased chance of PD. Just got a new referral of a woman in her late 40s-she will be the youngest PD pt. I ever treated. Scary with an onset so young.

 

when my son was in exacerbation last year he started to develop a parkinson -like shuffling gait. It was scary. It did go away after treatment. I also worry about Parkinson's later. That is for future research studies to determine....

 

Never saw anything in the Lower extremity with my daughter, always upper. I think all this comes from my father's side of the family. I think my Grandmother (now 85) has a mild OCD, but no s/s of PD. My Dad in his late 50s, probably definitely had PANDAS as a kids. SIck all the time per my grandma with sore throats, wouldn't step on the cracks and had to do the whole sidewalk again if he did (nearly fell off the couch when she told me this casually a few months ago), and now my Dad with residual OCD his whole life (not terribly severe, he is functional but has some very interesting compulsions). Oh I hope these kids are not more susceptible to PD, they are spending so much of their childhood fighting for normalcy, it would be a tradegy if they had to spend the last part of their life suffering from PD

[tpotter]

I think we all need to write up something about our parents/grandparents, etc. I know that Diana Pohlman did something along these lines when she made up a chart about autoimmune illness in families.

 

But, what I'm thinking is that we need to take it one step further. AmySLP is finding evidence of possible PANDAS/PITANDs in her father. I suspect that I might have had it. My Dad, who just passed away from Parkinson's and Dementia was highly suspect (once I found out about PANDAS.) In fact, I had asked him to do a test kit with Cunningham (she wasn't officially testing it, but was going to keep it on file for the future...he ended up not being able to, because he couldn't afford to give extra blood.) In fact, his sister died from probable ARF, and apparently there were 4 generations (that he knows of) of "mental illness" in his family (he suffered from terrible depression that started suddenly when he was 20 years old, and although he was on psych meds...they didn't help much.) As a research scientist all his life, he was terribly thrilled that I may have found the common link to all the psych illnesses, and I also think I may have put to rest that he didn't cause his mother's heart attack, but that based on other symptoms, it may have just been very weak due to possible ARF previously.

 

Some of the PANDAS docs think our kids are going to "grow out" of this (I've been told that,) and I just don't believe it. I think we need to do something along this line. Any ideas how to do it?

[AmySLP]

I could go on in my family. I was diagnosed with Pediatric fibromyalgia at a young age, 12ish, with no symptoms now-it was a diagnosis by exclusion at CHOP after months of seeking a dx. In the midst of all that, I hade strep problems my whole childhood and a year after this dx., I was having tonsil abcess issues, that my tonsils had to some out. Don't recall any problems after that. My sister had some compulsive behaviors as a kid (Blowing on her hand excessively & some other OCD behaviors) and my other sister, as an 8-9 year old had arthritic like symptoms in her legs. My parents took her all over the East coast. The only thing that coincides with that was lots of URI and strep issues. Now, still has a mild vocal tic and mild OCD. I do believe there is something to this. My own health history for strep is significant. Tonsils out-still get strep myself. My daughter was diagnosed with strep at 7 weeks old for the first time by rapid test. Again at about 3months, 9 months and so on. So much for antibodies that are supposed to be passed in utero and breastmilk. I wonder if that is the link here. Is it that I do not have those antibodies to strep? She does not get titer rise---at all! Tested 3 times throughout her 6-7 months of strep tests that were positive in the midst of her onset of PANDAS-No rise on with either at all. I do rise titers, just leared that my ASO was 715 and am being treated.

 

I know of another local family who is not on this forum, who has a history of mental illness in her mother's family. Her daughter was diagnosed with PANDAS 6 years ago and displays several of the same symptoms as her grandmother and great-grandmother before her.

 

Should we start a thread on here for people to just write their family histories if they think it's significant. Diana did include this in her chart. We had her indicate that we felt there was a familiar link.

[tpotter]

I have a small caseload in my practice, and a fairly large number of kids who are suspect for possible PANDAS/PITAND (one is definitely positive, I'm quite certain her siblings are, too, + another whole family as well.) Every child I suspect turns out to have significant family history of psychiatric problems and/or strep issues and/or OCD and/or tics. I don't think this is by chance. I'm not just talking, at this point, about autoimmune illness...I'm talking about a specific infectious trigger.

[Rojoha1991]

Dr Singer has not changed his opinion at all!  He hurts our children in stead of helping them!  Sadly, he doesn’t know what he is talking about! My daughter had sudden on set debilitating anxiety and OCD. Some rages and age regression.  This went on for a year!  Her whole 8th grade school year.  She missed 265 classes.  Finally dx Pandas almost exactly a year ago.  IVIG will be a year ago August 10th.  Finally, with that, antibiotics, therapy, all her supplements and cbd, she only missed about 20 classes this year!  She is now in remission   If she gets an infection or virus and has a flare, we know what to do  

 

Dr’s singer, Mink and Gilbert should seriously consider if they should continue practicing medicine! They do remember ... do no harm! 

[pepper1]

rojoha1991, can you tell us which antibiotics were successful? We're they started after the IVIG? IVIG was not helpful for us, Im looking into subQ Ig now.

[Rojoha1991]

Hi.  My daughter was put on amox clav 500 mg daily.  what supplements are you using? Vit D?  Are you using K2 with it?