Saturday, July 7, 2012

UMDF (United Mitochondrial Disease Foundation) Symposium Day 2 review- Saturday June 16th , 2012

So after a resting full night of sleep, I was ready for day 2 of the symposium.
Met with some of my new Mito friends from Georgia and Michigan for breakfast, before going to the first presentation of the day.
On day 2, I attended the following:
·         Pain Management for Adults and Children with Mitochondrial Disease: Different options to treating Pain By Dr. Kendall (Virtual Medical Practice) and Angela Fletcher (Psychologist at Children's National Medical Center, Washington DC)
o   Pain is a major Mito Challenge
o   Different types of pain have different treatments
§  Abdominal pain (reflux, dismobility, constipation, gastroparesis, etc)
§  Headache/Migraine pain (migraine disorder, autonomic dysfunction,  other triggers can bring it on such as exhaustion, intercurrent illness, dehydration, etc.)
§  Neuropathic (nerve) pain ( very uncomfortable, usually deep pain in hand and feed, treated with Neurotin)
§  Muscle pain (deep aching pain or cramping. Can be treated with Mito cocktail, low intensity exercises, medication from Over the counter to narcotics)
§  Generalized Pain (hard to treat, best way is to keep under control at all time. Palliative care can help)
o   Alternative approaches to pain such at massage, yoga, meditation, acupuncture, physical therapy, etc. can also help
o   Angela Fletcher, (Psychologist) also talked about the importance to be able to pinpoint the pain for effective treatment and pain triggers such as lack of sleep or sleep problems.

§  I was going to attend  the “gift of the ladybug” presentation, but the author Carole Amber had a death in the family and was not able to make it to the symposium. Ms. Amber lost her son to Leigh disease (same disease that Jagger has) and one day driving back from a doctor office after she got the news that her son had a terminal illness, she came up with an idea and wrote a great children’s book. Some of the profits from the book are going to the UMDF. So if you are looking for a great children’s book about acceptance and being different, make sure to check it out. It is available at Amazon:

§  Living with Mitochondrial Disease Panel with Kristi Cole (RN), Sharon Goldin  and her two sons, Mary Beth Morris (parent) and Devin Shuman (young adult). Video of the presentation is available:
o   The panelists gave tips/ideas on different topics, such as travelling with a Mito child, dealing with Medicaid and disability, being in high school and college with Mito, etc. It was a good overview of several topics but it would be hard for me to describe it all on this blog.

Next was lunch, which I spent talking to the Georgia crew and we brainstormed about activity/events we could organize in the Atlanta region. We have some really good ideas and I am really excited about a few events  we have coming up.
After lunch, I attended:
§  Ask the Mito Doc Panel with Dr. Kendall (Virtual Medical Practice), Dr. Enns (Stanford) and Dr. Kelley (Kennedy Krieger Institute). Video of the presentation is available:
o   Panel mostly took questions that were sent in before the symposium and they had a few minutes at the end to take audience questions
o   Most questions were related to genetics and or gene mutations causing diseases or about the Mito cocktail/drugs available to patients
o   Some questions about Q10 efficiency and panels said it can take 2-3 months to show results.
o   Panel pointed out that even patients with the same mutation of the same gene can be affected totally differently.

I was also able to get another “Ask the Mito doc” time slot, so I met with Dr. Hass (UCSD), we had a good conversation about Jagger and he also believes Jagger should be on EPI (we are still working on that but it should hopefully happen soon) and he gave me advice on some meds that could help with Jagger’s secretions. For about 3 months now, secretions have been one of the daily challenges we face with Jagger (along with pain), we have to suction him at least 15 to 20 times a day and that comes with its share of gagging and vomiting of course and aspiration which is likely the source of his recent pneumonia.
After my meeting with Dr. Hass, I rejoined the summary of the scientific symposium (that was concurrent with the family symposium). It was a great review but way too scientific to put on this blog. If anyone wants more details on the scientific sessions recap, please leave a comment and I can send the audio files.

It was then time to say bye to my new Mito friends and head to the airport. I even had enough time to grab a bite at the airport and the flight home was uneventful (even scored a 1st class upgrade), which is the way  I like it.
I got to the house around 11 pm and it was great to see Annett and Jagger, as they were discharged from the ICU earlier in the afternoon.

In summary, I am glad I went to the symposium, I learned a lot, met some great doctors and amazing mito families.
As difficult and frustrating as the “Mito” journey can be, it feels good to see doctors with such dedication and accessibility , always ready to help in any way they can.
I also wanted to say thank you to the UMDF and all their employees for putting together a great program, very well organized, and I hope I can make the one next year in Cali.

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