Wednesday, July 22, 2009


I just received Ryan's test results for Alexander's Disease and for Canavan's Disease. Thankfully, both tests were NEGATIVE. Whew!!!!

Tuesday, July 21, 2009

A Good Day

Today started early with seizures, followed by a 7.45 am appointment that lasted till 10.30. Then just as I was leaving that appointment, Dwight called to say that Walgreens had found 2 locations that had Ryan's new brand name drug in stock. One of those locations was about 1/2 mile from where I was at. Wasn't that convenient? I felt quite blessed.

After picking up the new prescription, I dropped Jacob and Deborah back off at home. Ryan and I headed over to the GI Specialists office to drop off a form they needed to complete the "correct way" so that we could get insurance to cover this insanely expensive formula. (Have I mentioned that it's costing $40/day?) Hopefully, we'll be able to get the right prescription in the right hands and get the insurance to cover at least some of the formula.

After a few nights of less than 5 hours of sleep, I was extremely tired. Thankfully my Dad was available to chat on the phone while I was driving over there. (Thanks, Dad, for keeping me awake, and for a great conversation! I love and appreciate all your counsel and your support!) On my way home, I stopped and bought myself a Lemonade from Chick-fil-a. I love their lemonade! Yum... anyway ... I was so tired that I felt myself kind of weaving a little. Thankfully, I wasn't far from home.

When I got home my sweet husband took over Ryan and made sure the other kids were taken care of so that I could lay down. I remember lying down on the bed at about 2, turning onto my side, and then ... well, nothing until after 5. I seem to recall my sister calling, but I can't remember what she said. (Sorry, Sis, I'll call you tomorrow.) It was nice to get a few good hours of sleep.

Tonight I had a great night. I talked with several friends this evening, and had an especially nice visit with a friend tonight, and felt very uplifted and motivated by the conversation. Perhaps I'll tell you more about that tomorrow night. It's late and tonight I'm going to hope for more than 5 hours of sleep.

Thanks for everyone's love and support!

Monday, July 20, 2009

Neurologist Appointment

We went to visit the Neurologist today as a follow up to yesterday's ER visit. We have decided that it doesn't make sense to do any additional testing yet. He's not confident that we would get enough new informationt justify putting Ryan to sleep to do an MRI, and we know he's having seizures. We don't need an EEG to tell us that they are seizures.

So, for now, we will just treat the seizures with a new cocktail of medicines. We're going to continue on with the Keppra, slowly lowering the dose a bit over the next few weeks. We're going to slowly add a new drug called Lamictal.

When I asked about the potential side effects of Lamictal, the Neurologist said it can sometimes cause insomnia or sedation. A little sedation might not be a bad thing. But, oh, my, please not insomnia.

So, we'll try it. But it will have to wait till Wednesday. We were unable to find any local pharmacies that had the brand name drug in stock, and our Neurologist felt strongly that it needed to be the brand name on this particular drug. Walgreens is going to order it for us. So, we'll start on Wednesday. I'll let you know how it goes.

Sunday, July 19, 2009

Another trip to the ER

Ryan's myoclonic seizures have been dramatically increasing all week. When they first started a few months back, we saw maybe one every few days. Then about a month ago, we started seeing them every morning about every 2 minutes for maybe 20 minutes. On Wednesday of this week, he had 31 in just under an hour. On Thursday, he had 43 in 23 minutes. Today ... well, today he had 66 in 22 minutes. (Yes, I documented every single one. Yes, I am that obsessive/compulsive.) Additionally, they used to stop once he was fully awake. In the past few days, they have continued to happen a few times each hour throughout the day.

I called the Neurologist on Wednesday, and his office said he's out of town for 2 weeks. They said if he's having an increase in seizures to either take him to the ER or to the Pediatrician. So, I called my Pediatrician (cause he was no longer having the seizures). He tried to get in touch with the Neurologist, but apparently only the ER could reach him. So he said, they were definitely of concern, and if they continued to increase he'd recommend going to the ER, if for no other reason than to get through to the Neurologist.

So, after today's spike, I took him to the ER. Thankfully, the ER was pretty empty and we were able to get right in. They examined Ryan and found nothing out of his ordinary. So, they called the Neurologist. He asked them to give him a heavy dose of his anti-seizure meds and to send him home with instructions for me to bring him into the office first thing in the morning. Apparently, the Neurologist will be in town tomorrow and will squeeze him in to his schedule.

I really appreciate his willingness to do that. I suspect it will be an exceptionally long day. A scheduled appointment usually takes about 4-6 hours. Tomorrow may be an all day marathon. Maybe I'll take Dwight's cool DVD glasses.... :)

I'll let you know what we learn.