Gettnig evaluated for PANDAS/PANS

[Anonymous]

Also, it wouldn't hurt to ask at Dr. L's for a pediatrician you could see while waiting for your appointment.

Did you get strep titers tested? If so, what were the results?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:What treatment is being given for the mycoplasma pneumonia?

5 days of azithromycin. Not going to cut it.

Yes, I understand that I can drive in from Fairfax. I was just hoping for gap coverage - someone who would prescribe 6 weeks of antibiotics or something while I wait to get in to see a true specialist. Our pediatrician gave us no additional instructions or even a follow up appointment, so I'm a bit lost. I actually wonder if the pediatrician we saw went on vacation, because it was someone else from the practice who called in the 5 days of azith. I wonder if she even read the file.

Latimer's office is closed for lunch, but I will try again in a bit.

Do NOT leave a message at Dr. L's. Keep calling until you reach a person. Get your initial appointment but indicate that you are in the area and wish to be put on the cancellation list. Because so many come from so far, there are often cancellations. Do not rely on being on the list for getting in on a cancellation. Call once or twice a week to ask if there have been cancellations.

I'm on hold right now. Before I was put on hold, I was told they are scheduling in October. Great tip, re: calling for cancellations.

By some miracle, I was just able to talk my resistant pediatrician into another 30 days of antibiotics, so hopefully that will help.

Only mycoplasma and ANA were run. DD has a negative strep swab a few months ago. I understand why you'd still check strep titers, but my ped was conservative. Sigh. The positive mycoplasma was enough to get us started, at least.

[Anonymous]

I was just going to post a suggestion - so glad you got 30 more days. It will take more than that most likely so keep that Latimer appt once you get it.

[Anonymous]

Thanks. I have an appointment for October, and I will call for cancellations.

Btw, for others, she is fee for services. $1200 for initial appointment, $475 for typical follow ups. I'm thankful I have a supportive spouse and some financial resources.

[Anonymous]

Sometimes you can be successful in getting a script for strep titers from the CVS. Be sure to ask for both ASO and anti DNASE B.

[Anonymous]

Since the appt isn't until Oct, I'd start a spreadsheet of symptoms right now and note changes/improvements or not while on meds and then continue until your appointment. It will be useful to see how things are progressing. Just jot a few notes down daily.

[Anonymous]

Anonymous wrote:I would get another opinion before going to an "expert" on PANDAs.

Why? If you had a very specific type of cancer or neurological disorder you would seek out that specialist wouldn't you? A parent who is concerned about possible PANDAS/PANS SHOULD seek out an expert in order to RULE IT OUT! The 2-3 national experts are professionals (trained at Georgetown, Johns Hopkins, Columbia, etc...). None of them are going to falsely identify a patient as having a disorder if they don't have it. Jeez DCUM. PANDAS/PANS is diagnosed by multiple data points including at a minimum blood serum results and observable symptoms. A motor tic could be Tourettes, it could be PANDAS. A specialist will help figure it out.

[Anonymous]

OP Dr. Trifilletti is much more thorough and accessible then Dr. L. We’ve seen both and are thankful we switched. He is worth the drive, PhD and MD and was previously affiliated with John’s Hopkins and Columbia University.

[Anonymous]

Is mycoplasma symptomatic?

[Anonymous]

This Friday, July 20, the 20/20 show airing at 10 will have a segment on PANDAS for anyone who may interested.

[Anonymous]

Anonymous wrote:Is mycoplasma symptomatic?

There were symptoms but now that it's almost under control he just uses an inhaler during sports/extreme heat days. He had so many infections it was very hard to figure out which infection caused which symptom because a few overlap with each other - eg he had 2 infections affecting mainly the lungs. I hesitate to list them because they wouldn't be useful to you. Hopefully someone with a kid with just myco will reply. You can also look at the Pans discussion boards.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I would get another opinion before going to an "expert" on PANDAs.

Why? If you had a very specific type of cancer or neurological disorder you would seek out that specialist wouldn't you? A parent who is concerned about possible PANDAS/PANS SHOULD seek out an expert in order to RULE IT OUT! The 2-3 national experts are professionals (trained at Georgetown, Johns Hopkins, Columbia, etc...). None of them are going to falsely identify a patient as having a disorder if they don't have it. Jeez DCUM. PANDAS/PANS is diagnosed by multiple data points including at a minimum blood serum results and observable symptoms. A motor tic could be Tourettes, it could be PANDAS. A specialist will help figure it out.

Obviously, because it's not clear that she acually has PANDAS; or that she needs long courses of antibiotics or IVs. The fact that there is one single cult PANDAS doc that people fly to from England actually suggests fringey practice. Take your kid to a regular neurologist and infectious disease doc.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Is mycoplasma symptomatic?

There were symptoms but now that it's almost under control he just uses an inhaler during sports/extreme heat days. He had so many infections it was very hard to figure out which infection caused which symptom because a few overlap with each other - eg he had 2 infections affecting mainly the lungs. I hesitate to list them because they wouldn't be useful to you. Hopefully someone with a kid with just myco will reply. You can also look at the Pans discussion boards.

who diagnosed him with all those infections?

[Anonymous]

Anonymous wrote:OP Dr. Trifilletti is much more thorough and accessible then Dr. L. We’ve seen both and are thankful we switched. He is worth the drive, PhD and MD and was previously affiliated with John’s Hopkins and Columbia University.

I would never take my child to Dr Trifilletti.

Take your kid to one of the many many regular and excellent neurologists in this area.

[Anonymous]

There is one poster here who dismisses the entire notion of PANDAS. As I recall, her child was misdiagnosed with it.

However, apart from Hopkins, there is pretty widespread acceptance of PANDAS. Harvard, NYU, Yale, Duke, and Stanford, not to mention the NIH, all have specialized practices for this. It could well be the case that many children are misdiagnosed with it. However, if your child has PANDAS, it is devastating. Pediatricians and non-specialized doctors are pretty helpless in addressing it.

My child has PANDAS and I have every reason to believe that is the correct diagnosis. His is a very classic case and he was diagnosed at the NIH. Moreover, we have a strong family history of rheumatic fever, an illness that is very closely related. There is also a family history of other autoimmune disorders for which studies have shown have a high association with PANDAS.