Wednesday, March 2, 2011

Change of Plans

So it seems things have changed. We were called in last minute earlier this week because they needed another blood test before he started the diet. We started out being angry that they ordered something so last minute, and the results not coming in extremely early would mean pushing his diet back almost a month. Our anger soon turned to worry because we were told they were looking for something extremely rare that "would lead to a different diagnosis".  Well with lots of phone calls and pressure we did get that result extremely early, and it's not what we wanted. It came out abnormal. They aren't telling us exactly what is wrong. All we know is it has to do with carnitine and long chain fatty acids and we have an appointment with a metabolic doctor next Tuesday. The big downside to this is the diet is now out of the question. He has a problem metabolizing fats, and the diet is made up of mainly fats, the two don't mix! So now we're waiting....

It seems very odd to me that he would have an extremely rare seizure disorder along with an extremely rare metabolic disorder. They HAVE to be connected some way. I'm very nervous about this appointment. I'm terrified I'm going to get some extremely bad news. All I know is I'm sick of seizures. My life revolves around seizures and seizure medication. I was so ready to start this diet and hopefully get rid of the seizures. Now we have a whole other thing to deal with. I was so ready to be done with looking in my rear-view mirror and seeing a seizing child in my back seat. No, he's not gazing off, he's completely unconscious and seizing.

Also, because I have become terrible with communication since this all started, I wanted to thank Great Grandma and Grandpa so much for the cards and the movie today! Ethan LOVES getting mail, and he was so happy to see Elmo today! We have been watching it all evening. Thanks!!!
He loves Elmo!

1 comment:

  1. Im so sorry to hear that Taryn. Praying that God will help the drs figure out exactly what it is that is wrong with Ethan. Praying that there will be a solution to help stop his seizures and any other problems. Im so sorry for all the stress you are having to deal with.