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I'm new to the forum, and we're desperately trying to find drs that treat PANDAS/PANS in the Bay Area. We on a wait list to see someone at Children's Hospital Oakland in 6 months. Our Ped doesn't believe in PANDAS/PANS so we can't get the needed referrals to see the group in Stanford. Would you mind PMing me the name of the 5 MDs you know of.

 

thanks.-

 

I am not sure if I mentioned this previously but we have at least 5 Dr.'s in the Bay Area that treat PANDAS/PANS. 4 are extremely versed at looking for all of the potential chronic infections (definitely the rage component), understand mold, environmental toxins, heavy metals, detox, methylation, genetic testing, implications of yeast/gut issues, etc. 4 of them are considered integrative and 2 of those Dr.'s will prescribe hdIVIG if needed. The other Dr. treats similar to Dr. B in CT but also has an interest in the inflammation aspect for PANDAS/PANS.

 

I am sure you have a comfort level for Dr. B but it is a long flight to CT. If you ever need a second opinion or would like to save the time, energy and money from travel back east please feel free to PM. I can also connect you with others seeing these particular Dr.'

 

For me It's a red flag when you can't get an appointment for 6 months. It can be worth a trip to the actual clinic for some face time with the appointment assistant when your working on a medical problem. This way you can be adamant about getting a realistic schedule rather than than one designed for moving patients through the office. With out medical group the primary is not the only one that can make a referral. DD's psychiatric doctor was the one that referred us to UCLA for an assessment.

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  • 7 months later...

I know we are talking about treating the infections on this thread, but what led me to

pay cash for 2 high dose IVIG's, administered 6 weeks apart,

was the very real component of 'PANS'

that was the

'Exorcist Rage Episodes'

Before our IVIG's,

it was this issue that scared me senseless.

If I was home alone when these rage episodes occurred, my dd was out of her body and mind,

and I came very close to calling an ambulance more than once. I instead called my 77 year old father-in-law who lives retired in the same town to rush over ASAP.

At the same time, my dd would suddenly start walking lines in a busy parking lot, then take off running through traffic.

I would catch her, man handle her somehow into a car seat, her physically fighting me, just waiting for police to show up that someone was sure to have called.

After this happened twice, I refused to leave the house with her without another adult.

Shortly after, we did HD-IVIG.

I was desperate to somehow re-set her immune system to stop this. (We had high PANDAS range Cunningham results)

I won't go into detail about what IVIG's did and didn't 'fix', or the fact that what some things were 'fixed'

wore off when the IVIG wore off (6 weeks later)

BUT, after our IVIG's, I never had a rage episode with her again where I was about to call an ambulance, because she was so far gone I thought brain damage might be occurring, or I was scared for our safety. Nor did I ever have her run off from me again, her having left her senses.

wow, your describing my 13 year old son. these last three years have been some dark years, with the last 10 months so scarry I am afraid to be alone with my son. the rages happen every three hours now, sometimes they are so long they just run into each other with continuous exhorcist rages attacking me with kill in his eyes, so out of control it scares him to death also. he has punched me in the head, kicked me in the chest beat me so hard I am covered in bruises, not to mention the beating himself so bad it is scarry. the episodes come on with him going OCD too, then he has a huge panic and tells me a rage is coming, he says his legs hurt, stomach nauseous and he turns beet red all over with overheating and freezing cold hands and feet, this is also described in a book I got called help for the violently aggressive child, where the author calls it beta and alpha rage, adrenergic crisis, adrenaline overreactivity. we are about to try some alpha blockers while we are waiting for our HD IVIG, would love to hear more about your experience with the IVIG and the rages and other symptoms and what dose you used.... I am scared to death this isn't going to help and then what... we have driven to emergency room so many times I lost count but I chickened out and drove home.

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Removing Dairy for us helped significantly with rages while we waited for blood work results. We were also put on medication one at a time. An antiviral was first before abx since our DS titers for HHV was very high. 48 hours later the rages subsided. That was just our experience. In my prayers and stay safe.

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I know we are talking about treating the infections on this thread, but what led me to

pay cash for 2 high dose IVIG's, administered 6 weeks apart,

was the very real component of 'PANS'

that was the

'Exorcist Rage Episodes'

Before our IVIG's,

it was this issue that scared me senseless.

If I was home alone when these rage episodes occurred, my dd was out of her body and mind,

and I came very close to calling an ambulance more than once. I instead called my 77 year old father-in-law who lives retired in the same town to rush over ASAP.

At the same time, my dd would suddenly start walking lines in a busy parking lot, then take off running through traffic.

I would catch her, man handle her somehow into a car seat, her physically fighting me, just waiting for police to show up that someone was sure to have called.

After this happened twice, I refused to leave the house with her without another adult.

Shortly after, we did HD-IVIG.

I was desperate to somehow re-set her immune system to stop this. (We had high PANDAS range Cunningham results)

I won't go into detail about what IVIG's did and didn't 'fix', or the fact that what some things were 'fixed'

wore off when the IVIG wore off (6 weeks later)

BUT, after our IVIG's, I never had a rage episode with her again where I was about to call an ambulance, because she was so far gone I thought brain damage might be occurring, or I was scared for our safety. Nor did I ever have her run off from me again, her having left her senses.

 

wow, your describing my 13 year old son. these last three years have been some dark years, with the last 10 months so scarry I am afraid to be alone with my son. the rages happen every three hours now, sometimes they are so long they just run into each other with continuous exhorcist rages attacking me with kill in his eyes, so out of control it scares him to death also. he has punched me in the head, kicked me in the chest beat me so hard I am covered in bruises, not to mention the beating himself so bad it is scarry. the episodes come on with him going OCD too, then he has a huge panic and tells me a rage is coming, he says his legs hurt, stomach nauseous and he turns beet red all over with overheating and freezing cold hands and feet, this is also described in a book I got called help for the violently aggressive child, where the author calls it beta and alpha rage, adrenergic crisis, adrenaline overreactivity. we are about to try some alpha blockers while we are waiting for our HD IVIG, would love to hear more about your experience with the IVIG and the rages and other symptoms and what dose you used.... I am scared to death this isn't going to help and then what... we have driven to emergency room so many times I lost count but I chickened out and drove home.

** hi- your response to my old post, of course, is tugging at me.

Let me be clear, I do not have the PANS answers or cure knowledge.

But let me also be clear on this:

I am fearful for you.

You CANNOT be the victim of violence.

So whatever you have to do,

physical violence MUST stop.

IMO, if that means you get your son on a trial of

Risperadone or Abilify,

that is what you do-

I am not sure of your previous bio- medical treatment history,

or medication trials-

of course, we all want to fix the root of the problem.

However, if there is physical violence happening to you,

you are bruised, attacked, afraid to be alone with someone that overpowers you,

please, please get help.

Sending you support in my thoughts-----

S

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