Anonymous
Post 08/08/2018 22:49     Subject: Re:Gettnig evaluated for PANDAS/PANS

To the people who feel bad about not being able to see Latimer because of high costs, do not feel bad. We paid and took our child. She barely examined him. She recommended some totally baseless treatment so we would come to her office for IV treatments and be further cheated out of more $. My husband and I totally mistrusted her and her awful staff after much misinformation on their part. She was not accessible despite us paying her exorbitant fees. Save your money and avoid her. This is just my experience and my opinion.
Anonymous
Post 07/23/2018 22:53     Subject: Gettnig evaluated for PANDAS/PANS

Anonymous wrote:
Anonymous wrote:Thanks. We’re in western Fairfax. Anyone closer?


no


Dr Zackrison in Fairfax understands this quite well.
Anonymous
Post 07/23/2018 20:51     Subject: Gettnig evaluated for PANDAS/PANS

I’m not the skeptic poster but part of what makes it so hard to get treatment is that latimer charges so much money and won’t take insurance. My daughter suffered terribly with PANDAS and we were unable to get any help. Pediatrician was nearly useless, couldn’t afford Latimer, tried CBT with no success, got bamboozled by a psychiatrist claiming to treat PANDAS. It was a devastating experience and I can’t believe how alone we were throughout.
Anonymous
Post 07/23/2018 20:40     Subject: Re:Gettnig evaluated for PANDAS/PANS

Anonymous wrote:
Anonymous wrote:Treating a mycoplasma infection with an antibiotic is not questionable. Treating treatment resistant strep with a 30 day course of antibiotics is not experimental. Identifying a subclass immune deficiency (in addition to underlying PANDAS/ PANS) and treating both with HD IVIG is controversial.


Treating an actual strep infection with an antibiotic is not questionable. Giving long-term or prohylactic antibiotics is questionable. And, the first line approach after an infection has been treated is CBT and and SSRI anyway ... basically same as any OCD treatment.


To the person who keeps posting this stuff. If you haven't been in our shoes then you don't know what it is like so keep your opinions to yourself. The long term antibiotics help keep the pandas kids from picking up other infections or getting re-infected with strep, which if happens their bodies go haywire and their immune system starts attacking their brains. My kid went from a normal 7 year old to overnight having huge tics, and other issues. My kid is doing better, but even with meds whenever she is exposed to sickness her tics return or get worse, then comes the difficulty performing academically, sleeping, etc. If it were only as easy as treating with CBT. My kid doesn't have OCD symptoms. Remarks like yours make it so hard for us to get treatment.
Anonymous
Post 07/22/2018 09:38     Subject: Gettnig evaluated for PANDAS/PANS

ABC news was having a special on PANDAS
Anonymous
Post 07/22/2018 07:57     Subject: Re:Gettnig evaluated for PANDAS/PANS

Anonymous wrote:Treating a mycoplasma infection with an antibiotic is not questionable. Treating treatment resistant strep with a 30 day course of antibiotics is not experimental. Identifying a subclass immune deficiency (in addition to underlying PANDAS/ PANS) and treating both with HD IVIG is controversial.


Treating an actual strep infection with an antibiotic is not questionable. Giving long-term or prohylactic antibiotics is questionable. And, the first line approach after an infection has been treated is CBT and and SSRI anyway ... basically same as any OCD treatment.
Anonymous
Post 07/21/2018 17:22     Subject: Gettnig evaluated for PANDAS/PANS

Anonymous wrote:
Anonymous wrote:Why doesn’t she take insurance? Her fees are prohibitively high.


likely because her treatments are considered experimental and not covered by insurance.


More likely because she has a waiting list of people willing to pay out of pocket. Most doctors who can get away with it don't take insurance.
Anonymous
Post 07/21/2018 17:13     Subject: Re:Gettnig evaluated for PANDAS/PANS

Treating a mycoplasma infection with an antibiotic is not questionable. Treating treatment resistant strep with a 30 day course of antibiotics is not experimental. Identifying a subclass immune deficiency (in addition to underlying PANDAS/ PANS) and treating both with HD IVIG is controversial.
Anonymous
Post 07/21/2018 14:50     Subject: Gettnig evaluated for PANDAS/PANS

Anonymous wrote:Why doesn’t she take insurance? Her fees are prohibitively high.


likely because her treatments are considered experimental and not covered by insurance.