Update Feb 13, 2012

I've been waiting to tell others about Keeg's latest issues until we saw his neurologist again. Today, we saw the neurologist.

Over the last couple of years, Keeg's health has not improved past a certain point. He stays tired and weak. Playing only a short time requires hours of sleep to recuperate. He's also moved from the 36^th percentile in height to the 76^th percentile. He is now 5ft, 81/2 inches at 14 years old.

Over the last year, his emotions have started to suffer. He is unable to identify emotions, unable to control emotions, and struggles with feeling overwhelmed. His social skills have regressed and he was recently diagnosed with Asperger's.

Over the last few months, Keeg has been losing his mental abilities. He had started doing Trigonometry at the end of last school year. Now he struggles with math he was able to do easily a few years ago. His reading comprehension has steadily gotten worse. His speech has started slurring on and off over the last two weeks. Today, he struggled to read a simple devotion. Keeg taught himself to read by the time he was 2 ½ years old.

For 4 months Keeg has had an ongoing headache. The pain fluctuates between a 5 and a 10 (on a scale with 1 being least pain and 10 being most pain). His severe migraines that land him in bed for 36-48 hours have decreased to aprx 4 a month. Keeg was prescribed Depakote to help with his migraine.

Two weeks ago Keeg started having chest pains. With his Situs Inversus (internal organs on opposite side of body) and the possibility of Marfan's Syndrome this requires a referral to a cardiologist.

As for his regression in mental and emotional abilities, I was told that this has been seen often in cases of long term immune system issues. There is no clear answer on how long it'll go on, or even how much worse it will get. Until we get him in with the geneticist, there isn't really much that can be done. We've been on the cancellation list for some time now, but still haven't gotten the call about an appointment.

The doctor did prescribe a medication today that he hoped would slow down Keeg's regression. Vayarin is Omega-3s and Polyunsaturated Fatty Acids. In addition to possibly slowing his regression, it will also help regulate his emotional state. It will help him sleep also. This medication is a good fit for his symptoms and there are no significant side effects. However, neither our CareMark Prescription Drug Insurance or Medicaid will pay for this medication. The cost is $75 a month. There is not an alternative available or a generic.

Right now, I'm completely overwhelmed. I'm supposed to just sit and wait while watching my son fall apart. How do I sit every day and see that he is getting worse and worse and do nothing? This is the hardest thing......not being able to help your child.

As Matthew West said in the song “Strong Enough”, “Hands of mercy, won't You cover me? Lord, right now I'm asking You to be strong enough, strong enough.....For the both of us.”