Talk About It...

It's been a while. I know. I get reminded every time someone asks me how my brother is doing and I say "Oh, yeah, I need to update his blog.". I believe that the last time I posted we were waiting to his appointment at Rush in Chicago and had last been to IU Med Center. At IU they diagnosed him with psuedoseizures. We questioned the doctor about this for several reasons. The entire family felt that the doctors were looking not to find out what was wrong but instead to prove that he didn't have Epilepsy. We also didn't want him to have a serious medical condition, but were afraid that in trying to prove he had psuedoseizures that might possibly be overlooking other issues. I know my mom was very afraid of this. We asked his doctors if it was possible that he was experiencing both seizures. In some of the literature they gave it said that 30% of people with Epilepsy experience both types of seizures. We left IU without feeling comfortable with their diagnosis. They really stressed that the psuedoseizures usually cease after a diagnosis is given and Dustin's doctor also reminded him at each visit that he couldn't drive if he was still having the seizures. I think he thought that by reminding him of this it might stop the seizures. The seizures didn't stop. He was having one every week to 2 weeks. He and my mom did start to pick up on a pattern. He constantly seems to have a headache, but before each seizure it would be between an 8-10 on a pain scale with 10 being the worse. My mom also came to believe that he was having seizures at night while he was sleeping. There would be days where he would sleep late and wake up feeling awful and just 'off'. He would look and feel terrible and feel unrested.

Finally, his appointment at Rush came. We felt we had waited forever. It was the last week of July. We first met with a nurse practitioner. She sat with us for almost an hour as we went through each seizure and experience and described everything in detail. She listened intently and we instantly felt as though she was truly concerned with Dustin's case. The neurologist came in and we again felt as though he was really listening to everything we said. It was so comforting after our experience at IU. This Doctor does believe that Dustin has epilepsy but is also having psuedoseizures. He he came to this decision after reading the report from his video EEGs, and listening to my mom and I describe his seizures and to Dustin describe how he feels during and after the seizures.

He put Dustin back on Depakote(which we did try before, but now it is at a much higher dose). When he was previously on Depakote he felt his best . It is also used to treat headaches so hopefully it will help with his constant headache pain. He has to have his liver enzymes checked regularly since he is on such a high dosage and so the doctor can make sure that the levels of meds are where they should be. So far, he has still been experiencing the seizures. Some may have been psuedosiezures, but others we are pretty sure are epileptic. We go back to Rush on the 26th and will discuss if he will keep the meds the same or take a different route for treatment.

If you are wondering what to pray for I guess it would be that the meds do control the seizures and for guidance and wisdom for the doctor. Also for discernment for my mom and the rest of the family. It can be difficult to determine what type of seizure he is experiencing and how we an help him in school and in just being a normal teenager. Keep Dustin in your prayers as well. It can be scary for him. I know he had a seizure at football practice and woke up afterwards to one coach rubbing his chest over his heart and the other standing there with a defribillator! That could have been scary. It can be scary to see him experience a seizure and especially to not know what to do in the time immediately after the seizure when he is unconscious. Having seizures will be part of his life it seems and because of this it's easier to simply educate ourselves and others about why it happens and what to do. It may impact some of his activities, but I think he's doing a great job of not letting it define who he is and what he does.

Heidi did find Dustin a dog...Jersey. She is a very sweet dog and actually came and got my mom one night when Dustin had a seizure after she had gone to bed. That is exactly what we were hoping she would be able to do. She isn't trained to detect seizures, but our hopes were that as she got to know Dustin she would be able to detect the seizures or get help when he had one. So far she has done a great job! Dustin loves her and I think she misses him since he's been so busy with school and football.

I found this site TalkAboutIt.org. It's really interesting if you have a few minutes. It was created by Greg Grunberg(from Heroes). His 13 year old son has epilepsy.

Thanks again for your prayers and support and just for caring! I'll try to update a little sooner next time we go to the doctor!