PANDAS, TS, OCD...New w/ questions need doc...

[vermontmoms]

My name is Jen and my son is 6 he has been dx w/tourettes, mild ocd and some sensory issues. His tics have gotten worse since his first episodes at 3.5yrs. Over the past 3 years we have been dealing with his TS, no one has mentioned PANDAS to us. He has had a strep infection at 4yrs 10mths that was confirmed by a strep test in the docs office. His strep titers were never run before or after that infection. This past year his tics have increased 10 fold and we are really going crazy with his constant vocal tics.

 

We live in the DC metro area and would like to see a specialist that can help us. Can anyone recommend a doc that understands TS and PANDAS? Also, what type of tests will be run on my son to determine if he has PANDAS? How will these tests be run, stool, blood work, etc.?

 

Thanks for your help,

Jen

[EAMom]

Lots of people see Dr. Elizabeth Latimer (neurologist) who is in DC. There are lots of threads on her. You should also contact Dr. Cunningham (or Kathy Alvarez) at Univ. of Oklahoma to get bloodwork done. http://www.latitudes.org/forums/index.php?...gham+blood+test Dr. Cunningham's lab is closing mid Nov-mid Jan...so it may be too late to get a sample in b-4 the holidays, but you could send an e-mail to ask.

 

You should definitely get a current throat culture (do family members also to check for carriers). Do the 72 hour culture is the rapid is neg. You could also do ASo/anti-dnase b although beware that they may be negative in PANDAS kids and some docs will use that as an excuse to say your kid doesn't have PANDAS.

[matis_mom]

My name is Jen and my son is 6 he has been dx w/tourettes, mild ocd and some sensory issues. His tics have gotten worse since his first episodes at 3.5yrs. Over the past 3 years we have been dealing with his TS, no one has mentioned PANDAS to us. He has had a strep infection at 4yrs 10mths that was confirmed by a strep test in the docs office. His strep titers were never run before or after that infection. This past year his tics have increased 10 fold and we are really going crazy with his constant vocal tics.

 

We live in the DC metro area and would like to see a specialist that can help us. Can anyone recommend a doc that understands TS and PANDAS? Also, what type of tests will be run on my son to determine if he has PANDAS? How will these tests be run, stool, blood work, etc.?

 

Thanks for your help,

Jen

Jen,

We see Dr. Zackrison in Fairfax. (703) 359-9300. She has been very helpful, but still we are going to see Dr. Latimer in Nov. for a second opinion.

I would say contact Dr. Cunningham asap to see if you can get their test done (we just asked for our kit today), as it seems to be the most definite diagnosis.

Call Dr. Latimer's office and set up an appointment (301) 530-9200.

 

Other than that, try to get your pediatrician to test for strep (rapid and culture), do the titers, and also have them run a stool analysis and check for strep there.

 

Hope this helps!

 

Isabel (in Warrenton)

[EAMom]

If the rapid throat culture is positive you can believe it and you don't need to do the 72 hours culture. But, if the rapid is negative, you should follow up with the 72 hour culture.

 

BTW. even throat cultures aren't 100% (eg. if strep is elsewhere, such as the skin/sinuses) but it is good to check. Also, do throat cultures on family members...our younger dd turned out to also be positive (assymptomatic carrier) when our older dd was diagnosed with PANDAS, clearing younger dd was very important in getting older dd's symptoms under control. We find that when family members are culture positive, our PANDAS dd reacts even though she is on abs.

 

Also... www.pandasnetwork.org has lots of good info.

 

Does anyone know if Dr. Latimer will do an immune workup or if Vermontmoms should do that separately?

[matis_mom]

Does anyone know if Dr. Latimer will do an immune workup or if Vermontmoms should do that separately?

 

I don't know but when I called they said to bring anything we thought might be helpful. I think it would put her ahead to bring some tests result with her to the first consult if she can get someone to write the lab orders. The first consult for PANDAS patients with Dr. Latimer is 1 1/2 hours, so the more info you bring, the more bang for your buck...(and BTW, the first visit is $580, which seems like a lot but I think it is reasonable for her level of expertise and the time spent.)

[vermontmoms]

Thanks for all your help!!! We have contact Dr. Cunnigham and Dr. Latimer's office. We are transferring over my son's files and have an appt. scheduled for a PANDAS consult...

 

Now another question this is about my other son (TS child's twin)...

My other son has also had a strep infection but does not have tic symptoms like his twin brother. He did have mild tics (2 tics - one a pushing up of the bangs on his head and the other a vocal swishing noise). His tics went away 3mths after his Strep infection, however, he does still show some OCD behaviors (need to change outfit if drop of water gets on clothing, etc.) and some ADHD tendencies (ie. can sit still, sometimes he eats standing up or walking...getting him to sit still consistently in a chair to eat dinner is a task in itself), he also has difficulty focusing when external noise is present, etc.) Should we get the tests run on this twin also? If yes, how do we get this testing approved since his is not symptomatic?

 

Finally, has anyone had success with getting insurance reimbursement through CIGNA with Dr. Latimer? The $580 is hard enough to swallow if we have to double that it will be almost too high for us to do w/out hope of reimbursement.

 

Thanks again for all your help...

Jen

[sf_mom]

Jen,

 

It sounds like PANDAS to me. With the Cunningham kit you will receive two tubes. They only really require 10 cc of blood, one tube. So what I would do.... is test both your kids at same time, same kit. It won't be a problem.... just Kathy at Cunningham's office know you are doing this when you send kit back. AND, I say bring both your boys to Latimer consultation. She will understand.

 

-Wendy

[EAMom]

Jen...

 

This sounds just like PANDAS!

His tics went away 3mths after his Strep infection, however, he does still show some OCD behaviors (need to change outfit if drop of water gets on clothing, etc.) and some ADHD tendencies (ie. can sit still, sometimes he eats standing up or walking...getting him to sit still consistently in a chair to eat dinner is a task in itself), he also has difficulty focusing when external noise is present, etc.) Should we get the tests run on this twin also?

 

Get both tested as SFmom recommended...there are 2 of each type of tube, so you should be able to do both with one kit.