Question Page for Dr L and Dr T

[kc35]

I noticed that Dr L and Dr T have a contact page where you can ask questions. Has anyone ever tried this and gotten a response? My child is not one of their patients. I am just trying to determine whether my DD has Tourettes/OCD or PANS/PANDAS. I want to describe my situation and see what they think but I don't have any test results yet. I will be doing strep titers, mycoplasma and basic lyme test (not WB) this coming Saturday. I have to ask the pediatrician for another test suggested on this forum being mycoplasma IgM. My DD freaks out about blood work, so I have to wait till Saturday so my husband can come with me.

 

While my DD was on azithromycin for 5 days for walking pneumonia her whole body tics were diminished. In the last week since she finished the az, her big tics are back but more disturbing there are lots of OCD things where she has to touch things a certain way etc. It is really stressing her and me out. I know that OCD and Tourettes can occur together, but I thought OCD developed later. My DD is only 6 and didn't have anything but a few simple tics in the last year. I feel like things are going to spiral out of control soon. I am so worried.

 

[szcasey]

I have not... Who is Dr. L and where is s/he located? Thanks!

 

Good luck!!

[LNN]

The average age of onset for OCD is between 9-13. 6 is too young, IMO, for a diagnosis of OCD without first exploring an infectious trigger. And it sounds like you have anecdotal evidence to support a Pans diagnosis. But I doubt any doctor will make a diagnosis via an email (and I'd run from anyone who did).

 

At the top of the forum, you'll find an assessment questionnaire prepared by Yale, which authorized ACN to post it. It's similar to the YBOCS scale Yale developed for OCD and it's used by Dr L and maybe others to support a Pandas dx. You can start there and also do regular dosing of motrin (2-3 times/day) while you wait for testing. Or perhaps ask your DH to take some time off work to get it done sooner? The thing with motrin is you need to dose at regular intervals in order to keep inflammation regulated. Sporadic dosing isn't nearly as effective.

 

When you say "basic lyme test but not WB" - what do you mean? All commercial labs other than Igenex or StonyBrook rely on standard WB. Curious what test you're doing. If it's an ELISA test, please realize that ELISA is even less reliable than a WB and is basically meaningless. You can read about the tests and what they look for, how reliable they are etc under the pinned threads for lyme. Very helpful.

 

It sounds like you're thinking it could be Pandas but want 'evidence" rather than just jumping in with both feet. Review all the info on Pandas on the OCFoundation website. This article is also very helpful http://thewalrus.ca/a-feverish-debate/ Then trust your gut and if you feel it could be Pandas, make an appt with one of these doctors to explore it further. I suspect you'll be glad you did.

[Aggie103c]

Dr. K replied to my emails by asking that I make an appointment for telephone consultation. I had to send payment (check) before the consult. They do not take credit cards for phone consults. He was very thorough on the phone.

Good Luck!

Aggie

[pr40]

Both OCD and PANDAS run in families. look at yourself and previous generation, were there auto-immune disorders or OCD? that should give you some answers.

another way to figure out if it is OCD or PANDAS is to start treating the condition as if it were infection triggered auto-immune disorder. If you get results in 6 months, you'll have a better understnading what is going on. if you are wrong and it is not PANDAS, you'll understand better your kid's organism.

[beeskneesmommy]

Both OCD and PANDAS run in families. look at yourself and previous generation, were there auto-immune disorders or OCD? that should give you some answers.

another way to figure out if it is OCD or PANDAS is to start treating the condition as if it were infection triggered auto-immune disorder. If you get results in 6 months, you'll have a better understnading what is going on. if you are wrong and it is not PANDAS, you'll understand better your kid's organism.

Agreed as my family is riddled with Strep/Rheumatic Fever on my mother and father's sides. However, it is important to note that some kids with PANDAS appear to have little or no family history....

[kc35]

The Lyme test is called LYME IGG/IGM w Reflex. What test is this ie)ELISA or WB or something else? It is all the pediatrician would agree to. I have called to ask for Pneumonia Mycoplasma IgM since he didn't write a script for that. I am waiting to hear back if he will write this.

 

As for the OCD, I also thought it occurred later in the course of TS. I'm not even sure if it is OCD. From what I've read it seems like it. She has feelings to touch things a certain way until it feels right. If it doesn't feel right, she has to start over and freaks out until she gets it right. Does that sound like OCD?

 

What effect will the Motrin have? Will it reduce the inflammation and then reduce the OCD/tic symptoms? Is this then a sign that it is autoimmune. Is it safe to give it to her 2 times a day? For how long? I've only ever given her tylenol maybe once or twice in her life since she never really had high fevers for very long.

 

As far as TS in the family. There is a close relative who has eye blinking. There are some relatives with mild OCDish behaviors. There is no one with autoimmune disorder that we know of.