appt with stanford next friday - any recommendations?

[anonymous0121]

hi all seasoned parents, we finally have an apt with Stanford PANS clinic after 8 month wait next week. Wondering if anyone that has gone there can share good or bad stories with me. My son has been in severe flair for almost two years now. The violent episodes happen almost hourly on the dot, tics severe, OCD, anxiety, panic attacks etc.... I have been to almost every westcoast and eastcoast doc out there in the last 10 years. some treatments help short tem but always falls back. we have lyme too and he has been through multitudes of lyme and coinfection treatments too. Nothing is helping, he continues to spiral downhill and we just cant live like this another day.

 

wondering how long the apt is at Stanford, what to expect, trying to not get my hopes up but praying they will atleast investigate autoimmune piece since no docs have done much in that area. he did IVIG last nov, did one LD, 2 HD and each time he got more psychotic and tics insane, was horrible. no one can tell me why it made him so much worse..

 

antifungal treatments use to help but nothing is helping now, he has white tongue and roof of mouth and seems to be resistant to everything, anyone have any big antifungal treatments that have helped?

 

so have tried to call Stanford for weeks to get them the huge amnt of paperwork they wanted us to fill out, and also find out how long the apt is etc, but not getting a return call. if anyone wants to share their experience with me I would so much appreciate it...

 

deborah

[MaryAW]

Has he been on longterm antibiotics? Have you tried prednisone? What about vitamin D levels? Getting your child's level to 50 to 80 ng/ml helps the child's immune system. We also had great success with omega 3's. Before we could get our DD into a doctor, ibuprofen helped tremendously. If your child is PANS, ibuprofen should help with the inflammation in the brain. God bless you and guide you

[anonymous0121]

maryyaw, antibiotics make his rages worse, mess up his gut and neurotransmitters more and fungal overgrowth and hard on adrenals/liver, make matters worse for him. we have done pred taper two times and both times he got so sick with a virus it lasted 6 weeks, he has common variable immune disorder and I really think autoimmune something, hoping Stanford will test for all autoimmune whatever...

omega 3, vit D, a etc make him or agitated, I did a lot of research and I think they raise dopamine, he has high dopamine sensitivity and docs say high crazy catecholamine surges.

ibuprophen and benedryl for so many years where our go to for flairs but do not help anymore, benedryl actually makes the rages more violent too. it is just so scarry. we need a miracle.

[mama2alex]

What's making you think autoimmune since IVIG and steroids have made things worse? Or did the pred make the psych issues better, but he caught a virus?

 

I don't know anything about Stanford's clinic except they are not really considering Lyme as part of the picture (last I heard).

 

What LLMDs have you seen in the Bay Area? We are here too and we have a wonderful doctor who uses an integrative and comprehensive approach (looks at all possible issues involved and uses all the tools) - Dr. P in Redwood City. He is good at figuring out complex cases and has seen a number of PANS kids now.

[sf_mom]

I wouldn't get your hopes up too much.

 

As far as I know, Stanford PANS Clinic doesn't even support Igenex testing, understand Lyme nor did they support or understand more extensive testing with speciality labs like MDL, Metametrix, Genovia, Fry Labs, extensive parasite testing, chronic yeast, mold, environmental toxins, etc.

 

If you are looking for more aggressive immune suppressing therapies Stanford may be able to help.

 

In our situation, the chronic yeast pointed to a mold and parasite issue. Dr. P would be the best in assessing your son for those issues.

 

Have you considered anything like HBOT with him? There is a clinic in Los Altos. HBOT will help with both infection and inflammation.

Edited July 21, 2014 by sf_mom

[tj21]

I am thinking of you - good luck w/the appt. Sorry I don't know much about the clinic, other than what I heard at the last PANDAS conference here (long wait to be seen, as you've mentioned, and mostly focused on research).

ds14 suffered hourly/clock-work rages/tics also, for a couple years (all on video tape b/c no one believed me), causing us to place him first, in-patient psych. hospital, then in an out-of-state therapeutic school. FINALLY started PANS treatment in March 2014 and his tics have almost disappeared since treatment started, but we have a lonngggg road of healing ahead of us.

 

Next up is probably Lyme too since I have it. And maybe gallbladder disease for ds14.

 

HBOT - good idea, that's on our list too.

 

Keep us posted re. Stanford.

[Rachel]

Did you see the video on PANS from the AE website? A Standford doctor talked about their current PANS program. It's the 6th video down in " Under our blog".

 

https://aealliance.org/

Edited July 21, 2014 by rachel

[anonymous0121]

Thanks that was a great video to watch

That is the doc we are seeing Friday... We have treated on and off Lyme and coinfections since 2005... Same with parasites, not getting anywhere but worse. Since 2007 we both had a bad virus and since it has been downhill and no fevers or regular responses to virus, flu, cold. I want to rule out autoimmune so hoping Stanford will help, none of the Lyme or integrative docs or pandas pans docs I have consulted with have done this. The fact that the two times we did steroid burst we got sick with real cold symptoms but haven't any other time. Makes me wonder about autoimmune and why we can't kick the parasites, yeast, Lyme etc....

[Rachel]

I would not cross off autoimmune off your list. Lyme and other viruses can be autoimmune if they cross the blood brain barrier. Has your son had plasma exchange? Hopefully you will get some answers when you go to Standford. It sounds like youre son has been sick for a very long time. Started out mild in the beginning and then eventally got worse. Getting to the right doctor can make all the difference in the world. Keep us posted on the out come of the appointment.

[Vbakersimon]

hi all seasoned parents, we finally have an apt with Stanford PANS clinic after 8 month wait next week. Wondering if anyone that has gone there can share good or bad stories with me. My son has been in severe flair for almost two years now. The violent episodes happen almost hourly on the dot, tics severe, OCD, anxiety, panic attacks etc.... I have been to almost every westcoast and eastcoast doc out there in the last 10 years. some treatments help short tem but always falls back. we have lyme too and he has been through multitudes of lyme and coinfection treatments too. Nothing is helping, he continues to spiral downhill and we just cant live like this another day.

 

wondering how long the apt is at Stanford, what to expect, trying to not get my hopes up but praying they will atleast investigate autoimmune piece since no docs have done much in that area. he did IVIG last nov, did one LD, 2 HD and each time he got more psychotic and tics insane, was horrible. no one can tell me why it made him so much worse..

 

antifungal treatments use to help but nothing is helping now, he has white tongue and roof of mouth and seems to be resistant to everything, anyone have any big antifungal treatments that have helped?

 

so have tried to call Stanford for weeks to get them the huge amnt of paperwork they wanted us to fill out, and also find out how long the apt is etc, but not getting a return call. if anyone wants to share their experience with me I would so much appreciate it...

 

deborah

Hi Deborah,

 

I'm hoping that you were able to get some definitive answers, or at least good guidance from the PANS clinic yesterday! How did it go? What did they recommend for your child? We just got our referral to see Dr F, so I'm really curious to what she recommended and what her attitude is towards patients with Lyme (my son has congenital Lyme and has been on antibiotics since it was discovered at age 2).

 

Thanks!

Vanessa