We are at the NIH for testing - What other infections have you found w

[jferinga]

Our daughter was put into a study at the National Institute of Health earlier this month. We received a call with an immediate opening; so we are here now. She has tested negative for strep 4 times now.

 

What other infections have you found, heard of, or treated in your child that that developed OCD/tics that, once treated, caused a remission of symptoms?

 

The NIH has indicated we can have additional testing done. These are the current tests:

 

EEG: awake and at night
Sleep study
EKG & ECHO
Brain MRI
Lumbar puncture; Only if we have abnormal sleep findings
throat swab, urine test
Blood draw for research and clinical(CBC with diff, Chem 20, quantitative immunoglobulins, iron panel, strep panel & HLA)

 

We have heard that mycoplasma, coxsackie, entervirus, bartonella, babesia, herpes, erlichia may also cause the development of OCD/motor tics.

 

Any additions?

[JoyBop]

I think that once the PANS/pandas cycle has begun, just about any heightening if the immune system can cause a flare, long after the strep infection (or other offending infection) has resolved.

 

We saw our ID dr yesterday and asked why is he still flaring, even with no apparent infection? His answer was that its not uncommon in these kids. We just had a full immunologic workup done and there were no signs of infection whatsoever. We are fortunate that we did catch that strep infection at onset or we might still be scratching our heads.

 

We are also going to that study at the NIH. The tests you mentioned are to learn more about the child with childhood onset OCD and developmental changes, and to look at a broad range of children that suffer with these problems. The goal is to diagnose these kids, learn from them, and Give their recommendations on treatment. They also do the Cunningham panel which we are most excited to see the results of. The other tests I was told that will be performed that you did not mention is nueropsych testing and Panness testing which looks for soft movement disorder. (Subtle piano finger, chorea form movements, ect).

 

We were told they are making a connection with pandas patients and poor quality rem sleep despite achieving the correct amounts. While all of this info will be interesting and hopefully they will learn a lot from our children, they may not result in more conclusive triggers for the disorder or answer our specific questions. Its a natural history study. Its a win win as far as I'm concerned. We get to be a part of the solution, get expert advice, and access thousands of dollars worth of testing.

 

We are looking forward to our visit at the NIH and hope we are able to learn more ourselves.

[jferinga]

The other tests are being done. I was not aware the Cunningham panel is being done.

[JoyBop]

I had asked the clinical coordinator and she said it was but I'm not sure she was the right person to ask. Let me know when you find out.

[3bmom]

I know you said herpes virus. Make sure they include HHV-6. This was huge for us and has possible implications as a stealth virus in MS and Alzheimer's. Good luck!

[Vbakersimon]

Our daughter was put into a study at the National Institute of Health earlier this month. We received a call with an immediate opening; so we are here now. She has tested negative for strep 4 times now.

 

What other infections have you found, heard of, or treated in your child that that developed OCD/tics that, once treated, caused a remission of symptoms?

 

The NIH has indicated we can have additional testing done. These are the current tests:

 

EEG: awake and at night

Sleep study

EKG & ECHO

Brain MRI

Lumbar puncture; Only if we have abnormal sleep findings

throat swab, urine test

Blood draw for research and clinical(CBC with diff, Chem 20, quantitative immunoglobulins, iron panel, strep panel & HLA)

 

We have heard that mycoplasma, coxsackie, entervirus, bartonella, babesia, herpes, erlichia may also cause the development of OCD/motor tics.

 

Any additions?

Definitely add Borrelia to the list, as this is the bacteria that causes Lyme disease. The others that you mention (ehrlichia, bartonella, babesia) are confections often accompanied by borrelia. Note: ask WHICH test the NIH will use for these tests (i.e. Western Blot, ELISA for Borrelia) as this will tell you how accurate the results may - or may not - be. Testing for Lyme and its confections doesn't always yield a definitive "yes' or 'no' answer, as it is highly dependent upon variables such as: status of the patients' immune response at time of testing, type of test used, strains of organism tested for, etc.

 

Good luck!

[Cleopatra]

Which NIH study is this? Thx!