Monday, August 6, 2012

Debra PCC 2012 ~ Integrative Therapies (Dr. Traci Stein) ~ Blog #1

DISCLAIMER – My daughter is diagnosed with RDEB – Recessive Dystrophic Epidermolysis Bullosa. She was extremely severe at birth but has improved over time. Some symptoms typical to RDEB are and will be present. The information listed below is what has worked for us and we will continue to back it up as long as it shows us a positive outcome. I only hope that this information will be helpful to others that suffer with a chronic condition like Epidermolysis Bullosa.
So we're back from the PCC and I’m still trying to digest the information that was flung at us from every angle imaginable – conventional vs. unconventional, traditional vs. non-traditional and so on. The one item I am jumping at to cover for the moment is Dr. Traci Stein’s approach at pain management through hypnotherapy and meditation to help alleviate pain, itch and mood symptoms in patients with Epidermolysis Bullosa. I was pleasantly surprised and elated that this year debra took a risk in introducing such a controversial approach to pain management. So many of those affect by EB (Epidermolysis Bullosa) rely on pharmaceutical prescription drugs to ease the pain and rarely do we hear doctors, patients or their families speak about integrative therapies (i.e. guided meditations, Yoga, etc…). Also the mention of the practice of Yoga to ease the physical and mental pain was very welcoming. Let’s face it, at the parental level we know that our kids are cognitively all there; they are normal in every sense of the word when it comes to their mental state. Some even surpass our pre-conceived notions of maturity – my daughter is one where she will soon be 10 going on 30!

Dr. Stein spoke in regards to pain being a “mind-body” phenomenon. How the two (mind & body) are interconnected and very powerful on their own. Together they can exceed our general expectations of what we are capable of doing. Her integrative approach to pain and itch was broken down as follows:

1. Mindfulness

2. Hypnosis

3. Biofeedback

4. Aromatherapy

5. Cognitive Behavioral Therapy (CBT)/Acceptance

6. Yoga

These fields of exploration for the pain and itching will allow our children to have a “sense of control” over their chronic conditions. The exercise alone done by simple Yoga moves like Anusara (which means Flowing with Grace) integrates our body’s principle forms of alignment with the celebration of the heart and spirit. You can also look up Hatha yoga moves – between the two they are the gentlest form of Yoga practices available.

Dr. Traci Stein has a blog and Facebook page – so become a fan and follow her therapeutic advice! I know we have enjoyed having these types of non-conventional holistic approaches towards EB as part of our daily/weekly routines.

These are some typical poses that can be adapted to be EB-friendly - the sitting ones are probably our best bet. Savasana is - of course - my favorite pose!

Side Note

I am going to refer back to a post I did almost a year ago which includes links and information to a guided meditation Bianca enjoys. I highly recommend it and suggest it to be downloaded into an iPhone or Android for easy access. These have been instrumental during the school year to put her to bed quickly and have a very restful night – something that is needed for our children to heal, grow and thrive.

Bianca's New Found Love for Meditation

I also get lifted by a website called "Tiny Buddha" in which it provides amazing stories that connect to so many other facets in our lives. They also have a Facebook page. I figure if I can read something that feeds my soul then my mind and body will be balanced to deal with the daily struggles that EB brings us.

NASA - Kennedy Space Center - Aug 2012
Bianca has gained self confidence and flexibility just by practicing the
meditation and some simple Yoga poses on and off! :)
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