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: http://www.amazon.com/The-Gift-Ladybug-Carole-Amber
§
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: http://vimeo.com/44904380
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:http://vimeo.com/45101031
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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