Read the post below this one first.
So just the week before seizure day I was thinking, "gosh, things are actually normal around here." HA! I don't think I will EVER say that again!
We were told at the hospital Eric will need to be seizure free for either 6 months or a year before he can drive. And to schedule an appointment with a Neurologist. Pretty tough pill to swallow for your 19 almost 20 year old. Talk about stripping his independence from him.
I have a co-worker with a son that has seizure like activity who has seen neurologists in Fayetteville, Rogers and Joplin. He said his son is being treated by a neurologist in Springfield, MO and recommended not wasting our time around here. I read the reviews and I concur!!
I emailed our nurse at the Oncology clinic at ACH advising her of the situation and mentioning Eric had an MRI at ACH when he was a year old in 1997. The next day Dr Saccunte called me and I filled her in with all that had happened. She said she had pulled the file and the report said there was an "abnormality" in the brain. She said the technology from 1997 was a magnification of 1 and now the magnets are 3.5 in the MRI machines so it probably wouldn't show much. Since they stop seeing patients at 21 it would probably be just as well for him to get with an adult neurologist. She suggested getting a referral from his PCP to get him in sooner.
So that is what I have been trying to do since June 27th. I finally got a response back from our PCP nurse on July 5th. (Eric's birthday) I know it was a holiday weekend though so I didn't expect to hear from them till then. She said she would send in the referral and we should hear back pretty quickly. A week went by so I called the neurology clinic in Springfield and she said they hadn't received it and was given the fax number just in case. I contacted the PCP nurse again, heard from her the next day and she apologized and said she had sent it again along with his labs. Doug had an appointment with our PCP (we all use the same one) on Friday the 22nd so I thought I'd call Springfield again. She said they still had not received the referral. However, there was a file started for Eric and I gave her address, contact phone number, etc. We took advantage of the situation and let the doctor know and he put in a referral right then. Hopefully we will hear from them this week! He also said he wouldn't go to any of the neurologists in NWA and recommended Springfield as well. :)
A little background on Eric. He has been having what we thought were anxiety attacks, but they were just at night, usually just as he was going to sleep. He would come in and wake me up and I would pray him through it and he would go back to sleep. He didn't have to work on June 23rd and was home, bored as our internet line had been cut by the contractors putting in a new water line. (Again, 2nd time.) I got home from an appointment and he was very concerned because "it had happened again." He wanted to know if we should go get checked out. I already had an appointment scheduled with our PCP for July 28th and knew we couldn't get in sooner. I was going to request an MRI at that time. He had bought an Xbox and we honestly thought that had something do do with it as we didn't allow video games (other than the Wii) growing up. Also that he does only see out of one eye and that could affect the thumb twitching. Our research suggested thumb twitching could be a sign of dehydration, lack of vitamin D, and other controllable things. Don't get me wrong, I was extremely concerned, but you can't just walk in to ER and ask for an MRI without good reason.
So then June 23rd happened. And you can read below how that day went.
Eric was extremely anxious at first, and with good reason. Doug and I told him we were going to be "helicopter parents" for awhile and honestly he was ok with that. I slept in his room and still am some. His anxiety has gotten better but just last night he struggled again so I stayed with him. We've gone back to the pre-driving ways. Actually, it's been good for all of us. On the days he has to be to work at 5:30am I take him and Doug picks him up when he gets off, usually at 11. He goes back to the hangar with Doug and when I get off (usually at 12:30) I go pick them up, we eat lunch and he goes with me. He spends more time with Doug than he has in a long time and it's been good. He and I have always had some of our best conversations while driving so, it's been a blessing in many ways. We are expecting to find out the driving restriction timeline when we see the Neurologist. He's had a bit of thumb twitching but he was stressed when that happened, and he is very conscientious about staying hydrated, mainly water and gatorade. Still not consistent with the vitamins but honestly what man is? :) He is however very good at consistently taking the seizure med.
Seems like I don't update the blog much until "something" (usually not so good) happens!
I'll see if I can get better at that.
The Dorothy's especially Eric, would appreciate your prayers as we adjust to this new lifestyle.
Jan, Doug and Eric
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