Sunday, March 23, 2014

Hope

Went to my first ever diabetes expo today.  It was informative and interesting.  I keep looking at pumps and continuous glucose monitors and I even got a demo pump for Sugar Bear last week.  I know in my heart these two things would give more freedom.  Sugar Bear doesn't want to even consider them.  After the expo today I don't think we're ready either.  I felt like the odd man out.  It seems that the majority of type 1s use the pump.  It was quite evident in how the expo breakout sessions did their explanations that this is more the norm.  We do MDI (multiple daily injections) which is less freedom and harder to get better control.  But it works for us at the moment.

Lot's of discussion at the expo about how great diabetes camp is for the kids.  Sugar Bear is definitely a homebody.  We homeschool and his preference would be to never have to leave.  He's comfortable here.  He's had overnights with his brother at family and friends' houses without us before type 1.  But he's never gone away by himself and he's never gone to camp.  He says he's not interested.  But we are.  I want him to gain confidence.  I want him to have adventures and exciting experiences in a
safe environment. I want to sleep for a week through 3am.   I just don't think I can force him to go even though other diabetes parents have suggested I do just that.

Some things I learned--seashells, seaweed, and reflux drugs are all being used in research with type 1.      With seashells they are working on drugs to help retrain the immune system.  Seaweed plays heavily in the encapsulation research.  And reflux drugs may be helpful in restoring beta cell functionality.  The encapsulation gave me much hope.  An implantable device that just goes under the skin and regulates insulin and glucagon without being destroyed by antibodies and not needing immunosuppressant drugs is exciting and has to be changed out every two years not everyday!  They are planning on doing clinical trials soon!  Another discovery going to clinicals is using Prevacid and a type 2 medicine to restore pancreas function in people with markers for type 1.  Or using a leukemia drug with newly diagnosed type 1s to help retain the beta cells they have and halt the progression.  So much information.  So much research.  So much hope.

One of my favorite Guided by Voices songs has played in my head since diagnosis.  I can't help that it popped in my head today.

"Every street is dark
And folding out mysteriously
Where lies the chance we take to be

Always working
Reaching out for a hand that we
Cant see
Everybodys got a hold on hope
Its the last thing that's holding me"



2 comments:

  1. Don't worry about not wanting a pump... You are so early on in your journey. It took us over three years to make that decision. You will know what works best for you and your family when the time comes.

    I actually got to hold an encapsulation device in my hand at a JDRF function. It was so cool!

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