What is Leigh's?

What is Leigh's Syndrone? Our Journey Home blog explains it so well: Imagine a major city with half it’s power plant shut down, at best this would cause a major black out. Now imagine your body working only to one half, the brain is impaired, vision is dim, muscles twitch and you are weak and your muscles are too fatigued to walk, crawl, or write. Your heart is weakened and you are not able to digest your food. For a large number of people, especially children, this is a fatal disease. Leigh’s Disease is one of many recognized Mitochondrial Diseases. Leigh’s is a progressive neurometabolic disorder with a general onset in infancy or childhood, often after a viral infection, but can also occur in teens and adults. It is characterized on MRI by visible necrotizing (dead or dying tissue) lesions on the brain, particularly in the midbrain and brainstem. The child often appears normal at birth but typically begins displaying symptoms within a few months to two years of age, although the timing may be much earlier or later. Initial symptoms can include the loss of basic skills such as sucking, head control, walking and talking. These may be accompanied by other problems such as irritability, loss of appetite, vomiting and seizures. There may be periods of sharp decline or temporary restoration of some functions. Eventually, the child may also have heart, kidney, vision, and breathing complications. One estimate of the incidence of Leigh’s is one in every 77,000 births, however this may be an underestimate as mitochondrial diseases tend to be under-diagnosed or misdiagnosed. There is no cure for Leigh’s Disease. Prognosis is poor, depending on the defect individuals typically live anywhere from a few months, to a few years, to their mid-teens

Thursday, October 4, 2012

Whose Got the Button? I've Got The Button

We made our round trip to Children's Hospital Outpatient Services (CHOP).  105 miles round trip.

But I got the button!

And I was excited! See:


The PA said is wasn't going to hurt. But it seems she was a little wrong.  That smile above disappeared. 
The button is in place, but the area is now tender and puffy and red. We were given a special cream for the area that should help. If not, the words "silver nitrate" were used. I don't think I like the sounds of that. 

Tube versus Button? Button wins!


Prayers for our Journey
~ The site of the button will heal with speed (no silver nitrate)
~ Acceptance to the Drug Program/Trials
~ God's provision. Both financial and with wisdom for each day
~ Day's full of laughter and joy
~ God's comfort and peace in the trying moments



Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)