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My kid has PANDAS, AMA
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amother




Gray


Post  Thu, Sep 19 2019, 3:49 pm
amother [ Bronze ] wrote:
Which doctor are you using to treat it?

I use a Dr. in Beit Shemesh
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amother




Apricot


Post  Thu, Sep 19 2019, 7:56 pm
amother [ Bronze ] wrote:
Thanks OP for starting this thread! I feel like PANDAS is so isolating. I tried making an appt by Dr. Vargas but she’s not taking new patients. They had me schedule an appointment with another doctor in the group who they claim deals with PANDAS too. We went yesterday n I can’t stop feeling down since then Crying This doctor was so nasty, didn’t let me talk, he basically interrogated me for an hour n then claimed my DC just has Tourette’s. He didn’t let me explain why I feel the tics are from PANDAS! I know that not all tics are PANDAS but he should have at least listened to what I have to say n rule out any brain inflammation. Instead, without asking me if I’m ok with the plan, he wants me to keep track of DC tics and come back mid November.
I feel like if it’s PANDAS then why not treat the brain inflammation n not just treat the tics! Get to the root of the problem and not just put a band aid on it Banging head I am soooo frustrated
We had a similar experience with Dr. Vargas. She did let me talk and listened politely but then she said it's not pandas and wouldn't let me discuss that with her at all. I think Columbia is like that, they recognize that pandas/autoimmune encephalitis is a thing, but unless you have a very very classic textbook case (sudden overnight onset, classic ocd rituals) they won't diagnose you and refuse to treat. 2 months later we paid oop to see a pandas neuro in NJ and got a diagnosis on the spot.
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amother




Bronze


Post  Thu, Sep 19 2019, 8:10 pm
amother [ Apricot ] wrote:
We had a similar experience with Dr. Vargas. She did let me talk and listened politely but then she said it's not pandas and wouldn't let me discuss that with her at all. I think Columbia is like that, they recognize that pandas/autoimmune encephalitis is a thing, but unless you have a very very classic textbook case (sudden overnight onset, classic ocd rituals) they won't diagnose you and refuse to treat. 2 months later we paid oop to see a pandas neuro in NJ and got a diagnosis on the spot.


Which neurologist are you seeing in NJ?
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amother




Chocolate


Post  Thu, Sep 19 2019, 8:58 pm
I wanted to hear from others experiencing this. I feel like besides being terrified of losing my child to terminal mental illness, the worst thing about this whole PANDAS experience it the burden it places on us to educate and help others who then think we're crazy. Having seen first hand how it can happen to anyone, how it looks absolutely IDENTICAL to psychiatric illness and then witness a complete turnaround, I feel compelled ethically to share with others. Although, truthfully, it would be much easier to keep quiet and let those who don't want to hear it flounder through it. I just find it too hard ,unkind and not in line with Torah to stand by while kids and families suffer when there may be a possible cure that can prevent a lifetime of illness and anguish. Does anyone else feel this way? What's the best way to handle? What does Hashem want?
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amother




Apricot


Post  Fri, Sep 20 2019, 9:25 am
amother [ Bronze ] wrote:
Which neurologist are you seeing in NJ?
Dr. Trifilleti.
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amother




Bronze


Post  Fri, Sep 20 2019, 9:59 am
amother [ Apricot ] wrote:
Dr. Trifilleti.


Who recommended him?
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amother




Slategray


Post  Fri, Sep 20 2019, 1:45 pm
I'm finding that a lot of the PANDAS doctors listed on the PANDAS websites are like alternative medicine specialists that don't take insurance, my pediatrician is not buying into my concerns about PANDAS and I think my kid has only had strep once (but we've only met with this pediatrician once since we moved). I want to look into this, but I'm concerned about paying a lot out of pocket for a "red herring".
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amother




Bronze


Post  Fri, Sep 20 2019, 1:54 pm
amother [ Slategray ] wrote:
I'm finding that a lot of the PANDAS doctors listed on the PANDAS websites are like alternative medicine specialists that don't take insurance, my pediatrician is not buying into my concerns about PANDAS and I think my kid has only had strep once (but we've only met with this pediatrician once since we moved). I want to look into this, but I'm concerned about paying a lot out of pocket for a "red herring".


I had that too when I switched pediatricians, in beginning the doctor didn’t want to believe it but then after getting to know my kids he actually does believe in PANDAS (at least in my kids). Maybe you should find a pediatrician in your neighborhood that would listen to your concerns.
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amother




Apricot


Post  Sat, Sep 21 2019, 9:33 pm
amother [ Bronze ] wrote:
Who recommended him?
other parents in the trenches
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amother




Chocolate


Post  Sun, Sep 22 2019, 7:48 am
amother [ Bronze ] wrote:
I had that too when I switched pediatricians, in beginning the doctor didn’t want to believe it but then after getting to know my kids he actually does believe in PANDAS (at least in my kids). Maybe you should find a pediatrician in your neighborhood that would listen to your concerns.


There's no harm in doing blood work. Did you ask about this? I would be very wary if he would refuse.

Also some doctors would try a couple weeks of antibiotics to see how child responds and then extend if child seems responsive. This is the same as the trial and error method of psychiatrists. Honestly, it is only sensible to first trial and error with antibiotics that can potentially cure, than with a brain altering psychiatric medication that may be required for life or may even be harmful to these kids.

Also, having one child already with serious pandas and another with mild, I am terrified of having another. I have learned ways to recognize and describe symptoms of sinus or strep infections better with refraining from saying pandas (many pediatricians are scared away from it). I once shared my concerns with my doctor about one of my kids who had been congested with a stuffy and runny nose for a long, long time. He actually wrote a script for antibiotics and bh all symptoms (including slight anxiety ones) resolved. So sometimes unfortunately with this illness you have to be creative in getting the medical help these kids need. So unfair but true.
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amother




Pink


Post  Wed, Oct 30 2019, 9:04 pm
Is Pandas over once it's treated or is it a life-long issue? Can it re-occur and if yes, what triggers it? TIA.
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ra_mom




 
 
 


Post  Wed, Oct 30 2019, 9:18 pm
amother [ Pink ] wrote:
Is Pandas over once it's treated or is it a life-long issue? Can it re-occur and if yes, what triggers it? TIA.

If it's caught quickly and treated aggressively it can be put to bed. But it's hard to diagnose and hard to treat so if it becomes a prolonged thing, that makes it more complicated.
I don't know if it's known yet how it works into adulthood, since it's only been recognized for a few decades, but someone who is going through the ups and downs of PANDAS definitely is triggered by exposure to the infection.
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amother




Apricot


Post  Wed, Oct 30 2019, 11:51 pm
amother [ Pink ] wrote:
Is Pandas over once it's treated or is it a life-long issue? Can it re-occur and if yes, what triggers it? TIA.
It is considered a chronic condition. Dr. Susan Swedo, primary pandas researcher at the NIH who "discovered" pandas in 1990 recently did a q&a on fb. She said they did long term follow ups on her original research cohort, 10% of them still had symptoms, others were on psychotropic meds [for life] to manage ocd. (that's why many, many parents take a functional, holistic approach to treating pandas rather than strictly mainstream, focusing on the root causes and "terrain" that allowed pandas to happen in the first place rather than just going after the infection and autoimmunity). After onset, pandas symptoms can flare from anything that stimulates the immune system, ie bacteria, viruses, allergies, bug bites, loose teeth, vaccines, etc.
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amother




Pink


Post  Thu, Oct 31 2019, 4:00 am
Thank you ra_mom and apricot for your responses.
Can pregnancy trigger PANDAS as well?
(Seems like it from your response, imamother apricot)
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amother




Apricot


Post  Thu, Oct 31 2019, 9:40 am
amother [ Pink ] wrote:
Thank you ra_mom and apricot for your responses.
Can pregnancy trigger PANDAS as well?
(Seems like it from your response, imamother apricot)
What in my response made you think pregnancy can trigger pandas? Pregnancy is actually usually a state of immune suppression, many people with autoimmunity experience abatement of symptoms or remission. That being said, I don't think there is enough research to know for certain with pandas. Hormonal changes can exacerbate things, and pandas kids often have issues detoxing excess estrogen, etc. We do know however, that for people diagnosed with sydenham's chorea, a disorder very similar to pandas, and that pandas was based on, that has been around since the 1800's, it is a known thing that chorea can come back during pregnancy. The mechanisms for this are not well understood.
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