So we're back from CHOP

[tantrums]

It really wasn't all bad. We saw Dr. Finkle, Chief of rheumatology. I liked her. She seemed very well informed. She feels he has Tourettes rather than PANDAS and honestly, I'm willing to accept that possibility. He isn't responding to pandas protocols. However, she also questions as I do, why does he get a little better on abx? I questioned if it is because he has a subclass deficiency. So if TS is aggravated by illness, is the abx preventing some illness propholactically and keeping some of it at bay? She says she doesn't know and refers me back to immunology. But I have to say - I've wondered myself over the past few months WHICH is this??? Basically that is the question Dr. Finkle shares although her general opinion is TS.

 

She suggests we go to Yale! Or contact Dr. Swedo. I told her I was concerned since I have read that if it is pandas and you treat with TS meds, it can make it so much worse - and vice versa

 

So basically - we took a day, went to CHOP and got nowhere. Much as everyone predicted Now I'm just once again, not sure which direction to go in.

 

So DH and I are considering dropping all the ABX right now and letting our psychologist refer us to the psychiatrist and attempt some anti anxiety meds for him.

[norcalmom]

Have you had Cunningham tests done? Cunningham uses both classic tourettes and classic OCD (as well as normal human sera) to compare to the pandas sera (results are drastically different, except for one sample - probably a misdiagnosed pandas kid!). So, I think it might help you decide what camp your ds is most likely in. Best of luck.

[mama2alex]

Don't forget about the steroid burst you just finished. I'd watch him for the next couple of weeks (without making any other medication changes), and if you see significant improvement, that's a good indicator that you are dealing with PANDAS. We saw minimal improvement on antibiotics, but lots of gains with prednisone. I agree the Cunningham test could also be a good indicator.

[tantrums]

I had no idea the cunningham test could show me if it may be TS or pandas! That will definately be a route to take then! Not knowing which it is for sure is just the worst! And I can't take the bouncing back and forth

 

Will watch closely the next couple of weeks to see if the steroids had any impact. His morning was off the charts and I was dreading the trip (90 minute each way) but he actually was quite good. He was ticcing all over her office which was interesting. I'm glad she saw it though. Funny how he does that at the doctors. I thought most kids were the opposite. He rarely tics anymore, but bring him to a doctor and he's one tic after another.

[tantrums]

Wow! It must have been a really good thing for DH to come with us to the doctor for once! I told him about the cunningham test and he (who usually gets ticked off at spending that kind of money for things he questions) said "lets get it then!"

 

Will be working on that asap

[tpotter]

[Make sure she knows about the recent steroid burst, and any other meds you have taken. It might affect the test. She'll let you know.

[mama2alex]

Not sure what the effect of steroids is on the Cunningham results. We did the steroid burst about 2 weeks before we did the blood draw and still came back with a score of 153. Defintely let them know though.

[NancyD]

Steroids will definitely skew results of CaM Kinase test. I called Kathy asking her this question in April.

 

Nancy

 

Not sure what the effect of steroids is on the Cunningham results. We did the steroid burst about 2 weeks before we did the blood draw and still came back with a score of 153. Defintely let them know though.

[nevergiveup]

I guess if the scientist knew what causes tourettes, then maybe you could separate it from pandas. However, TS is a syndrome with no real cause and no real treatment except numbing drugs. That's the part of TS which is so confusing to me, Funny how TS is a diagnosible, treatable disease, however no test definatively diagnosis it, not even an mri. No drugs eliminate it, and the exact gene cannot be found to call it genetic, even though all scientist say its genetic. Hey pandas is genetic too, all autoimmune conditiond have some predisposed genetic condition. I think underlying cause is key to determine treatment. Since TS has no cause, there is no treatment..