Pain & Fatigue & Seizures & Dysautonomia - Oh My!

Mitochrondrial Disorders have so many signs and symptoms. 

There are so many causes of PAIN of SEIZURES of FATIGUE yet sometimes we know that our child or loved one has something and are frustrated that no-one is finding what is at the core! This is one of the many times we may wish to look for a mitochrondrial disorder. To be clear, this is not the only way mito shows up and mito is not the only thing that can explain these symptoms, but if the medical community seems to be saying "its a functional disorder" or "likely they are too stressed" or "we are ruled out everything" - then ask to check for treatable conditions like mitochrondrial disorders. 

Diane Stein MD 4/9/2017

Here is one of the many videos I have found: 

https://youtu.be/RoH-ujJPRMk

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism. 

Image of Epilepsy Awareness Day at Disneyland Crowd Info

The header image was taken by a participant at Epilepsy Awareness Day 2015 with over 700 people seen in the signature purple shirts. This image is to raise awareness for the event which is ongoing every November to raise awareness, stomp stigma, provide a day of inclusion and hopefully will bring more attention to epilepsy in the years to come.

Image from: Keren Greenberg  Image not for sale or profit.  

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism. 

Diane Stein's Private Practice Closed as of May 31, 2017

A note from Dr. Stein:

As of May 31, 2017 my solo private practice will be closed.  See FAQ below for details. 

Many people have asked what has lead to this. The greatest reason is my inability to run the business profitably enough to afford the level of support staff needed to give excellence in care while managing the burden of submitting claims to insurance providers. This continued to be true even after I simplified by moving to a subleased single room and minimized staff. There are benefits for me in closing my doors however the heartache I have when saying goodbye to so many families that have become friends over the years is very heavy.  

FAQ

Is Brad Levy's EEG To Go staying open now that your practice is closing? 

Brad Levy's business and Epilepsy Awareness Day at Disneyland / The Epilepsy Expo (EADDL) will not be affected by my actions as both were completely independent of my practice and my efforts since early April 2016. Of course I whole heartedly support the EADDL, which started through my private practice and will always be happy to volunteer again to support EADDL. 

How do I contact you now that the practice is closing? 

My contact information will not change: email: office@SteinNeurology.com or fax: 949-743-5682 or leave a voice mail 949-743-5678.  Mailing address: Diane Stein MD 14252 Culver Dr A345, Irvine, CA 92604-0314

What if I want another appointment before you close the practice? 

Contact the office for Brandy to assist in making you an office visit. I have very few days in the clinic left with open appointments. 

Do I need to hurry to get my medical records? How do I get my records? 

There is not hurry to get your records! Records will be kept for the next 20 years are so. Send an Authorization to Release Medical Records to the office by email or fax or mail.  There will be no charge to send records to providers or to send records by fax or to upload them to a cloud storage. Requesting hard copies: paper or electronic media to be sent to you directly (not to provider) will require payment to cover mailing cost. 

What if I need care before I can be seen by another neurologist? 

I am available without delay until the end of May 2017. Thereafter please ask your primary care provider for assistance if you have an emergency. You may also contact me via above contact information for assistance with non-urgent matters. 

Who works with you now? 

I will be managing telemedicine practice directly. Currently, Brandy Lewis continues to work remotely, part time providing office "support," assisting in releasing records, finishing up billing from practice.  To contact her (the office) email: office@SteinNeurology.com or fax: 949-743-5682 or leave a voice mail 949-743-5678. 

Why can't I get through to a live person at the office?

With limited remote staff my office phone number goes immediately to voice mail. Messages are checked daily (often a number of times a day). The message includes how to get in touch with me directly.  It is not appropriate to call me for directions, to schedule an office appointment or discuss billing or a non-urgent question.

I need help immediately, what do I do?

If you have a medical emergency call 911. If you have a urgent problem after 5/31/2017 and can not promptly reach Dr. Stein directly, please see your primary care provider, urgent care or contact your current neurologist. 

I need a refill on a prescription, what should I do?

%/31/2017 or sooner: have your pharmacist send a fax to the office. If the request is after 5/31/2017 I hope you can defer to your primary care provider or new neurologist.  The pharmacy can call Dr. Stein's cell if needed.

Will you be billing insurance providers after 5/31/2017? 

No, all services will be offered after payment or credit card authorization has been received. Billing has been a very big part of the reason to close my medical practice.  

How do I schedule phone or TeleMedicine Secure Video real time visits with Dr. Stein? 

Please see the home page for TeleMed information.

What will you do now Dr. Stein? 

Now Assistant Clinical Professor of Neurology at UC Riverside, I  look forward to  teaching medical students and residents, I am also enjoying my work as a "locums tenens" or Per Diem traveling doctor covering inpatient pediatric neurology needs for large teaching hospitals and outpatient work at various clinics as a "locums tenens" or Per Diem traveling doctor. It is a joy to be meeting so many new providers and medical group support staff. I am licensed in California, New Mexico and Illinois. And of course branching into TeleMedicine with Secure Video face to face visits is great. A further treat is having the time to consult for companies as well as participate in Clinical Advisory Boards such as that for Up To Date while continuing advocacy. 

 

 

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism. 

Epilepsy Awareness Day at Disneyland 2016

I am so pleased to hear that so many friends and patients are going, again, to support Epilepsy Awareness to the Epilepsy Awareness Day at Disneyland. I am so proud of this event starting from a beautiful mother asking me how to give back now that her son is so much better. 2013, that first year, we have no expo, no financial support, and about 750 participants...how far it has come!


Our original mission: to unite the epilepsy community, to bring epilepsy out of the shadows, and to stomp out epilepsy stigma is not complete.  I so hope all of you participating or learning about the event use images and stories of the day to "inspire a nation in which 1:26 people will have epilepsy in their lives by bringing awareness while bringing stories of wonderful people working and playing together."


Please continue to stomp stigma my telling your story. Please continue to raise awareness by sharing stories and images on social media now, during all of November - Epilepsy Awareness Month, on International Epilepsy Day (February) and everyday. 


I am saddened that I will not join you this year, however I know each and every one there will be part of making the day and the year great and helping to stomp the stigma! 
Diane Stein MD
11/2/2016

Immune response may cause harm in chronic epilepsy

"Could the body's own immune system play a role in memory impairment and cognitive dysfunction associated with conditions like chronic epilepsy, Alzheimer's dementia and concussions? Cleveland Clinic researchers believe so, based on a study published online by PLOS ONE.

The study focuses on the role of a protein known as S100B, which serves as a biomarker for brain damage. Normally, S100B is found only in the brain and spinal column. However, following a brain injury, it can leak through the blood-brain barrier into the blood.

Once S100B enters the bloodstream, it is identified as an intruder by the immune system, which releases antibodies to attack the protein.

"Our results show an unexpected role for S100B in the regulation of a neuro-immune response, connecting the function of the brain to the immune system," said Damir Janigro, Ph.D., senior author and molecular medicine researcher at Cleveland Clinic's Lerner Research Institute. "Uptake of S100B was prominent in cells that are known to be involved in regulating immune responses. Repeated increases of S100B -- whether due to epileptic seizures, Alzheimer's disease, or repeated hits to the head in sporting events -- may thus become boosters of an autoimmune response against the brain, which may slowly but inexorably result in chronic neurological disease."

These findings are the first to report a connection between a brain-derived protein and an immune response in the context of normal immunological function.

"Prior to this research, S100B autoantibodies have been described in a variety of diseases, primarily in Alzheimer's dementia and chronic epilepsy. More recently, repeated subconcussive episodes in football players included a post-game increase of S100B, followed by an autoimmune response against the protein," Janigro said. "Therefore, it appears that autoimmunity against brain proteins may be one of the initial steps in the progression towards posttraumatic cognitive decline."

The study tested the hypothesis that the presence of S100B in extracranial tissue is due to the production of antigen-presenting cells in the blood, which may induce the production of auto-antibodies against S100B. To test this hypothesis, researchers used animal models of seizures, enrolled patients undergoing repeated disruption of the blood-brain barrier, and collected blood samples from epileptic patients.

If further research confirms the study's findings, treatments for brain injury may include anti-inflammatory therapy or immunomodulators to decrease the autoimmune response, as has been done in the treatment of multiple sclerosis and myasthenia gravis."

Follow the link for more. This is certainly interesting in a day when I am seeing a huge increase in percent of my patients with immune issues.

https://www.sciencedaily.com/releases/2014/07/140724134033.htm

Diane Stein MD

Epileptologist

Child & Adult Neurologist

Having a Relative with Epilepsy May Increase Your Risk of Being Diagnosed with Autism

This new article is an interesting insight into a relationship between autism and epilepsy... Clearly they are both brain related conditions with more genetic causes being found every month. We already knew that many of the epilepsy genes are seen in those without epilepsy and especially in those with autism. What we didn't have was a good study showing that both autism is more common in families of those with epilepsy.

BTW all persons with developmental disabilities and/or migraine have an increased risk of developing epilepsy - not just those with autism. If you see someone stop activity, especially a preferred activity, to stare off blankly or have other types of seizures, please encourage them to be evaluated for seizures.

Link to the article: https://www.aan.com/PressRoom/Home/PressRelease/1472?utmsource=Informz&utmmedium=Email&utmcampaign=AANe%2Dnews+June+22&zs=7cNlW1&_zl=vwvA3

[image1.PNG]

June 22, 2016

Diane Stein MD Child Neurologist, Epileptologist Co-Founder Epilepsy Awareness Day @ Disneyland 4482 Barranca Prkwy #130 Irvine CA 92604 www.SteinNeurology.comhttp://www.steinneurology.com Office 949-743-5678 Fax 949-743-5682

Conquer Epilepsy With Food - here in OC

Carly's Carbless Kitchen now in OC: [image1.PNG] A place where dietary therapy is used as an option to help end seizures.

From their website http://www.carleyeissmanfoundation.com/about/ 'Our mission is simple: Food brings communities together and evokes an emotional connection. This connection, at Carley’s Carb-less Kitchen, helps individuals and families feel they are not alone in this difficult battle called epilepsy. The program is an educational culinary adventure that provides awareness, emotional support and learning on how to master carb-less cooking for those dealing with epilepsy. This program is the first of its kind in Southern California. It teaches families that dietary therapy can be a delicious style of eating that also works to minimize seizures and for some, even conquer epilepsy......Changing the world one kitchen at a time!"

Diane Stein MD Child Neurologist, Epileptologist Co-Founder Epilepsy Awareness Day @ Disneyland 4482 Barranca Prkwy #130 Irvine CA 92604 www.SteinNeurology.comhttp://www.steinneurology.com Office 949-743-5678 Fax 949-743-5682

Assistive Communication and more

This website offers so many resources. I especially like the webinars on assistive technology. I recently had a patient with Retts Syndrome who was using assistive communication device which used her eye movements to activate her specific wants and needs. Like any of us, when her wishes are known she is calmer and has an easier time focusing on the good parts of each day.

http://www.parentcenterhub.org/repository/behavassess/

Diane Stein MD June 1, 2016

Child Neurologist, Epileptologist Co-Founder Epilepsy Awareness Day @ Disneyland 4482 Barranca Prkwy #130 Irvine CA 92604 www.SteinNeurology.com Office 949-743-5678 Fax 949-743-5682

National Organization for Rare Diseases excellent website!

Have you ever wondered if there are other patients with the same unusual disorder? There probably are and to learn more about it go to the rare disease network. http://rarediseases.org/

Here you can learn about all sorts of patient organizations of support for families and patients and advocacy. You may even find a site where you can refer your doctor so he or she can learn more. [cid:9C7F50C2-1305-4DF0-AE2B-D531D8B34739]

Diane Stein MD Child Neurologist, Epileptologist Co-Founder Epilepsy Awareness Day @ Disneyland 4482 Barranca Prkwy #130 Irvine CA 92604 www.SteinNeurology.comhttp://www.steinneurology.com Office 949-743-5678 Fax 949-743-5682

Off to the American Epilepsy Society Annual Meeting 2015

I am soon to be on my way to the American Epilepsy Society Annual Meeting to start: 12/3/2015. Looking forward to learning even more new ways to break old patterns (of treating epilepsy) and starting something different! Too bad I do not expect a Miracle Cure. I look forward to posting throughout the meeting! if you wish to see what all the fuss is about, follow the link to our brochure: https://www.aesnet.org/meetingsevents/annualmeeting/program

Diane Stein MD Epileptologist, Child & Adult Neurologist Stein Neurology & Full Spectrum EEG Co-Founder Epilepsy Awareness Day at Disneyland

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism. 

End of 2015 update

An end of 2015 update: Let me introduce myself, I am Brandy Lewis, Dr. Stein's practice manager.

Great news! Dr. Stein and her EEG lab are now IN NETWORK with Blue Shield.

As of December 15th, 2015, we will be out of network with AETNA, a voluntary business decision. If you have Aetna health insurance we will work with you, call to learn more including how you can receive authorization from AETNA for "continuation of care" as a covered benefit.

If you have any billing questions let me know: Brandy@SteinNeurology.com

As I have received many questions about Brad Levy, Dr. Stein's prior practice manager, who voluntarily left his position with us. He continues to do an outstanding job managing the Epilepsy EXPO and Epilepsy Awareness Day At Disneyland every November. Brad's businesses, including EEG To Go, are not overseen by Dr. Stein or associated with our practice. Note: this business is legally owned and operated by a businessman, no special training or license is required to own or operate an EEG business or to setup or perform EEGs.

Dr. Stein continues to provide EEGs, closely medically supervised, with technologists who are Board Certified and Registered with ABRETs. To verify credentials of an EEG technologist you can look here: http://www.abret.org/employers/credential_search/ If you have more questions about EEG services with Dr. Stein or Full Service EEG, do not hesitate to call.

Let me know if I can be of further assistance.

Brandy Lewis Practice Manager for:

Diane M Stein MD Stein Neurology, Full Spectrum EEG Co-Founder Epilepsy Awareness Day at Disneyland Board Certified Child and Adult Neurologist, Epileptologist Specializing in Autism, Epilepsy and Adults with Childhood Onset Disorders

4482 Barranca Parkway #130 Irvine, CA 92604

Phone: 949-743-5678 Fax: 949-743-5682

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism. 

Upcoming Events

Upcoming events: 12/ 4 - 8 / 2015 - American Epilepsy Society 69th Annual Meeting Philadelphia, PA. I look forward to catching up with old friends, keeping up on the latest research and best practices for epilepsy, and meeting more epilepsy specialists. To see more about this international event: www.aesnet.org/meetingsevents/annualmeeting/general_infohttp://www.aesnet.org/meetings_events/annual_meeting/general_info

11/5/2015 - Epilepsy Awareness Day At Disneyland 3rd Annual Event - See you at Disneyland to raise awareness about Epilepsy, stomp stigma, unite communities and for a day of family fun. I Co-Founded Epilepsy Awareness Day at Disneyland and could not be more thrilled that it continues! www.epilepsyawarenessday.orghttp://www.epilepsyawarenessday.org

11/4/2015 10am to 5pm - Second Annual Epilepsy Expo at Paradise Pier Hotel, Downtown Disney. This free event is held to bring together many of us in the Epilepsy communities for education and fellowship and to pick up our Epilepsy Awareness Day shirts so we will all make a statement at Disneyland! Over 80 individuals, hospitals, companies and non-profits will be there.

Dr. Stein

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism. 

First Ever International Epilepsy Day was February 9, 2015

2/5/2015 - I am thrilled that the International Epilepsy communities launched their first ever International Epilepsy Day - which was a product of years of effort. We spread #EpilepsyDay images throughout social media on 2/9/2015. Hopefully will we see an even bigger response on International Epilepsy Day 2/8/2016 - the first Monday of every February! www.epilepsy.orghttp://www.epilepsy.org [cid:image001.jpg@01D11576.C7BA88F0]

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism. 

Annual American Epilepsy Society Meeting December 2014

12/2014 - Annual American Epilepsy Society Meeting is always great, I have been going yearly for years, but this year was more than just catching up with friends and other Epilepsy experts! I admit I was a bit over the top with spreading enthusiasm for raising epilepsy. This enthusiasm lead me to push the international appeal of Mickey Mouse and Disneyland with Dr. Moshe and Dr. Perucca. In 2015 working with many others, the International Epilepsy Communities joined with 2015 Epilepsy Awareness Day Board to create an alliance with hopes of using EADDL to forward international epilepsy awareness. AES website is also a great place to find a physician who is an epileptologist or member near you. www.aesnet.orghttp://www.aesnet.org Anyway, here I am with my hero: Tracy Salazar-Dixon PhD - mother, doctor of genetics, VP at CURE Citizens United for Research in Epilepsy. I enjoy seeing Tracy Salazar-Dixon every year. She used to work with me on the Professional Advisory Board of The Epilepsy Alliance of Orange County and now she has her PhD in Human Genetics with a focus on epilepsy. IF you want an inspiring video, check out: https://www.youtube.com/watch?v=iz6mZ1NhY4o She is central at CURE's Epilepsy Genetics Initiative. To learn more: https://www.youtube.com/watch?v=zeYi9CpHDAk [cid:image003.jpg@01D11576.9CED0BC0] Dr. Stein

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism. 

Sankar and Stein and Holder, Oh My! Epilepsy Awareness Day 2014 link to images and more....

11/6/2014 Epilepsy Awareness Day at Disneyland 2014 Dr. Sankar (UCLA) and Dr. Holder (CHLA) are some of the senior pediatric epileptologists who joined us for the second annual Epilepsy Awareness Day. Read more about our day on my face book page from 11/2014 https://www.facebook.com/epilepsyawarenessday . Kudos to Dr. Sankar for bringing the Pediatric Neurology Department from UCLA both years and to Dr. Holder for having Brainworks, her 501c3 for Epilepsy Education co-host the Epilepsy Expo. [cid:image001.jpg@01D11574.BA60A2E0] Dr. Stein

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism. 

November 2014 The First Ever Epilepsy Expo

11/5/2014 - The Epilepsy EXPO was an amazing day. I worked with my co-founder of Epilepsy Awareness Day and the EXPO to create a day of education and fellowship. We had a number of adult and pediatric epileptologists speak in our Doctor's Corner, had 60+ booths with non-profits and companies and so many of you!! Brad and I juggled the various aspects of putting on the first event like it with a lot of help. We had over 60 exhibitors: non-profit - partner groups, sponsors and epilepsy centers were there to learn from each other and to educate anyone with questions. Best of all, it was a free time to get our shirts for Epilepsy Awareness Day and to chat with friends new and old. [cid:image001.jpg@01D11574.520194C0] https://www.facebook.com/events/777735328969959/ Dr. Stein

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism. 

Published in Epilepsia the American Epilepsy Society's Academic Journal 10.2013

October 2014 in time for November as USA Epilepsy Month and to get ready for the first ever International Epilepsy Day, Epilepsia, the Journal of AES, had a number of articles, editorials and commentaries on the need for a WORLD Epilepsy Day - what an endeavor Dr. Mathern and the other leaders in the international epilepsy communities under took! Thanks Dr. Mathern and all who decided to print my little commentary. [cid:image001.jpg@01D11573.D038F0F0] Dr. Stein

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism. 

Hemispherectomy Foundation and The Brain Recovery Project Conference - Diet and The Brain

What a treat it was to have a large round table presentation on Diet and Brain Health for the Hemispherectomy Foundation and The Brain Recovery Project 2014 Family Reunion and Conference at Disneyland Resort's Paradise Pier Hotel no less. Hemispherectomy is the removal of ½ of the brain generally done for Epilepsy and specifically Rassmussen's Encephalitis.

Hopefully I will voice over my slides and post a video some day.

I so strongly recommend going to conferences and other events like this one!

Dr. Stein MD

Diane Stein

Pediatric neurologist, epilepsy advocate, mother, wife, sister, friend. I opened a solo peds neurology practice to give excellence in medical care especially to those children and adults with epilepsy and/or developmental disabilities / autism.