Autoimmune Encephalities

[Rachel]

Found a good resources on Autoimmune Encephalities. It even mentions PANDAS. Thought it might be worth sharing.

 

http://www.ssi.dk/~/media/Indhold/DK%20-%20dansk/Diagnostik/DiagnostiskHaandbog/Autoimmune%20encephalitis%2034.ashx

 

 

 

[MaryAW]

Very interesting! I far prefer the term autoimmune encephalitis to PANS or PANDAS. It's more accurate and better conveys the gravity and complexity of the disorder.

[WorriedDADNMOM]

Read some of it and downloaded it.......... way over my head. But get the Pandas/Pans stuff for sure.

 

It is very interesting how we can find and get this info, but main stream docs can't or won't........shaking my head.

[Hrosenkrantz]

Thank you for posting this. I agree that it is complicated, but I also found it interesting to read

[MMC]

Thanks for posting. I did not read it all, but it encompasses a lot, including PANDAS/PANS. We have seen two doctors at Duke since October 2013, and they have helped DS16 greatly with their treatment, which includes IV steroids and Cellcept. Here is a link to an AE website with a video...

 

https://aealliance.org/

 

Also, Duke had an AE Symposium back in June. I live only 50 minutes from Duke, but was unable to attend. There are video clips on the above website from some of the speakers. Dr Latimer always said PANDAS/PANS falls in the AE category and she is the one who referred us to Dr Van Mater and Dr Gallantine at Duke. They are treating a few other PANDAS kids that I know of. They found a blood auto antibody affecting DS16's platelets...causing them to be low...which gave them evidence of an autoimmune problem, supporting an AE diagnosis. All this outside of PANDAS/PANS post strep infectious issues, so it got complicated...but, we are glad they found some evidence to allow treatment. It is a relief to find a team at Duke who understands the issues at hand, and they take insurance of course. We just pay our copays and deductibles, all in BCBS of NC network...no questions asked.

[Rachel]

Can you share the name of the blood autoantibody that affects the platelet count?

 

I did watch several of those videos. The information given in the PANS video was very interesting. The doctors found other autoimmune antibodies in some of those kids. Sure hope they are keeping track of those kids that come into the clinic and start sharing their research with other doctors.

Edited July 11, 2014 by rachel

[Hrosenkrantz]

I clearly need to watch the videos and do the reading -- but one question I have -- if one is one to have an antipbody in the blood that causes encephalitis -- do those antibodies go away with treatment? Do they come and go with treatment? Sorry I'm asking here out of scientific ignorance.

[Rachel]

It is my understanding that these autoimmune antibodies can be caused by infections or viruses. As far as treatment goes I understand that it can take more than one treatment to get the antibodies under control or gone completely. I am just beginning this journey with my son. Maybe someone with more experience in this area can shed some light.

[Dedee]

We have an appointment there with Gallentine and VanMeter in August. Someone form this site suggest we try it. I am thankful. I really just hope we are able to get some resolution.

 

Dedee

[SSS]

Dedee, if I can ask, since you've treated Lyme, and done 2 IVIG's-

what kind of treatments are you looking for from Duke?

More IVIG's?

We went back to LLMD, back on antibx with improvements,

but have a new PANS Dr. consult next week,

not sure what they can suggest to us. Not interested in more IVIG's, since they were hit and miss, and we have underlying infections, which may never be fully eradicated.

I wonder about glutamate blocking drug, but honestly, am too afraid to give my dd who is only 9 another heavy drug.

Just curious about your thoughts-

[Dedee]

When we did the IVIG's we got good results. It was only after more illness that she regressed. Also, at the time of IVIG, we had not treated Lyme. She has been on lyme treatment for 3 years now. She also does very well with steriod treatment but I generally have a hard time getting someone to give it to us. I usually have to use the prednisone that I have for my gout. I have to keep the dose lower than most would use so as to not increase her tics, but it does help her behaviors.

 

Also, I spoke to a few of the physicians at the conference in California. We discussed how quickly she regresses with illness. Two of them told me that they thought she would be a good candidate for some of the more powerful drugs out there. I feel we need to be seen by some of the more "serious" physicians. If we are told after this that all she still needs is antibiotics and supplements then at least I know I have done all I can.

 

Dedee

[Hrosenkrantz]

SSS-- question -- if the underlying Lyme May never be fully eradicated, is the hope that aggressive abx will at least chip away at it and lead to improvements?

 

(Asking not as an argument, but rather w an eye to understanding the different approaches)

[SSS]

Thank you for sharing that Deedee, I understand.

It was our LLMD when we went back last month (after a very long break in treatment for dd) who asked we see a specific PANS specialist, hence our appt. next week.

Filling out the PANDAS/ PANS packet/questionnaire for the upcoming appt., and looking again at a written history I put together, was enlightening.

My dd also continues to 'ramp up' when exposed to illness, saw it this Spring when her little non-PANS sister kept getting different illnesses from school. But, she wasn't on any prophylactic or treatment antibiotics, etc.

I find one of the most stressful and difficult things about this illness is just how much serious decision making is left on the Mother (and some Dads who guide the treatment decisions.)

[TeamTyrion]

"...I find one of the most stressful and difficult things about this illness is just how much serious decision making is left on the Mother (and some Dads who guide the treatment decisions.)..."

 

Absolutely. The burden of our child's healing is upon us. It shouldn't be! Our healthcare system should be on our side and dealing with this, but Pandas/Pans is still relatively "new."

 

I wish we could fast-forward 100 years from now when (hopefully) the rest of society and healthcare will have created amazing ways to deal with our children's issues.

[SSS]

SSS-- question -- if the underlying Lyme May never be fully eradicated, is the hope that aggressive abx will at least chip away at it and lead to improvements?

(Asking not as an argument, but rather w an eye to understanding the different approaches)

** sorry, I missed this earlier. Some thoughts:

The Lyme and co- infections are eradicated enough so that the immune system can take over/ keep them in check.

Complete lifestyle change probably necessary: reduced/ low stress, very clean healthy diet, w/ no inflammatory triggers, no alcohol, exercise consistently, 8-9 hours sleep at night, rest when needed, perhaps meditation.

Dr. Horowitz's book 'Why Can't I Get Better' talks about all the bodies systems, like thyroid, gut, those need to be working.

That's the idea.

So, you get there, cruising along, and say you decide to take a longer prescription of steroids for some reason, the immune system shuts down,

a sleeping spirochetes wake up. Or you go into major surgery, same thing. Could relapse.

Is it really possible to kill every single tiny one?

I have read a well known Lyme Dr. saying 3 years remission, home free.

Personally, as an infected adult who had this going on for untold years, did heavy treatment,

I will always, always have to take my health seriously, put time and effort into it daily.

I'm still on some herbs, special diet, etc.