TS not PANDAS

[philamom]

KK- I've not read through all the posts so maybe this was mentioned, but I'm really suprised NO blood tests were ordered. Thats absurd. Not to say that negative blood tests rule out a diagnosis, but I would at the very least check ASO, D-Nase. I would also check for mycoplasma and lyme. Somewhere posted on here is a list of suggested blood tests.

 

I ditto the advice for a second opinion.

Edited September 14, 2012 by philamom

[msimon3]

I agree with the guidance from philamom. You can get tics from neurological infections, and you need to rule out those infections. Lyme and Mycoplasma Pneumoniae need to be ruled out as well as strep.

 

Also pay attention to any other symptoms (mood swings, lethargy, numbness, aches/pains, fevers, rashes, etc) that may indicate infection.

 

 

 

KK- I've not read through all the posts so maybe this was mentioned, but I'm really suprised NO blood tests were ordered. Thats absurd. Not to say that negative blood tests rule out a diagnosis, but I would at the very least check ASO, D-Nase. I would also check for mycoplasma and lyme. Somewhere posted on here is a list of suggested blood tests.

 

I ditto the advice for a second opinion.

[emmalily]

**I'm going to use this doctor's full name so that I am absolutely clear. Chemar, Sheila, feel free to take it down if you're uncomfortable about it, but I felt I needed to use the full name.

 

With all due respect to everyone in this conversation, I need to correct a few things. Possibly you are thinking of the wrong doctor, because Dr. Leckman is in fact a psychiatrist and is very well-versed in childhood OCD. In fact, he is a professor of psychiatry and pediatrics at Yale. He is absolutely not a neurologist. How do I know this? Because he has been the man who has successfully treated me for PANDAS over the last three years, and did so very well, but when I needed a neurologist for help with a migraine condition I had to go see one of his colleagues at Yale because Dr. Leckman simply is not a neurologist. He has specialized in Tourette's as well, but he is one of the experts on PANDAS. In fact, if you look at the bibliographies of a lot of the papers out on PANDAS you'll see him in there. He works at the Yale Child Study, which as the name implies, is pediatric patients with an assortment of neurological and psychiatric disorders.

 

He is one of the good guys who is fighting for us. I don't want to get into details, but I welcome you to look at his Yale biography and see that he is involved with an NIH PANDAS study. There's no middle of the road for him--he believes and he is doing his best to find the right treatment for us all.

 

Also, he is one of the most caring, intelligent, honest, open-minded doctors I have ever met in my life (and you can believe I've met a lot). He has made himself available to me even when he was on sabbatical or in another country, always responding within a day. He has cared about getting me back to school as much as my family has and even takes the time to inquire about my writing and ask for the websites it's hosted on so he can check it out. He has gone above and beyond for me.

 

Kristin, if you still have questions about why he doesn't think your son has PANDAS or if you want to give him new information that you think supports PANDAS, I would sincerely urge you to contact him. He, unlike so many doctors, in interested in what his patients and their parents have to say and I think he would be open to further discussion, and he would be a great doctor to have on your side if you both find a diagnosis that you're comfortable with.

 

Also, the evaluation I had at Yale was incredibly extensive. Hours long, tons of conversation over history and symptoms, and meetings with a tic disorder fellow and a fellow specializing in CBT, both overseen by Dr. Leckman himself. They took all the bloodwork I had done previously and thus did not ask for any more and factored that into the decision over my diagnosis. Yale's prestige, while it can make them appear very snooty, affords them amazing opportunities, and as someone who is treated by two doctors there and spends more than my fair share of time in New Haven, I have to say it's a fantastic university/hospital.

 

I'm sorry if I've stepped on anyone's toes, I know we all have individual experiences with different doctors, but I couldn't let this slide. We have so few doctors fighting for us and we can't degrade the them publicly like this out of ignorance of the facts.

 

http://childstudycenter.yale.edu/faculty_people/james_leckman-1.profile

Edited September 14, 2012 by emmalily

[Sheila]

Hi everyone. I have done a little editing to a few posts and am closing this thread.

 

It has brought up some interesting issues but I was not comfortable with the discussion of Dr Leckman, who is highly respected and knowledgable and very interested in PANDAS. Some comments included incorrect info about him.

 

Emmalily described his background very well and I think gave good advice to Kristin. In discussion with Dr Leckman at conferences, I have always found him to be particularly thoughtful (as in deliberate) and open minded.

 

I agree with LLM on not using full names of docs, though undersand Chemar's point that there are times it is OK. In general we need to avoid it.

 

Though in theory almost everyone on this board would probably agree that we should not make online diagnoses - nor should we insist that a parent "must" do one thing or another like seek another opinion from specifically Dr A, B, or C (especially when it is causing marital disagreement) some on this thread have been doing just that. This type of thing is best left for PMs, and with a qualifier that they "might want to consider." . . or "in our experience we found that"...

 

Thank you for everyone's participation on this! We hope Kristin wil have some good news to post at some point!