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Posts Tagged ‘AED’

Not a catchy title but bear with me. The life has been sucked out of me again.

Lets see.. In just a few days from now it would have been the 6 month mark that Luke would have been seizure free. In the past 6 months Luke started developing so much. The biggest achievement was him talking on New Years Day. What a glorious treat for us. Until then he had 15 words at 23 mos old. January 1 hit, and while at my inlaws he said ‘angel’ and several other random words out of the blue. I was floored. We all were. It was like God finally gave us that sign that he really was going to be ok. He was making this big effort to start talking. Making new sounds with his mouth and it was great! It was all babble but he was TRYING and that was something new. It seemed before he almost didnt know -how- to try.

We’ve had some really bad days at therapy and just a few really good ones. We started trying therapy in home (and at the clinic) after the Developmental Evaluation showed that he basically hadnt developed at all in one year. We all knew he had but he wasnt performing. He had to start participating and showing them what he could do. And also, he just wasnt separating well still. After 13 mos at KidSource he was still crying at transitions and its difficult to learn when you cry the whole time.

We also started fish oil in an attempt to seek better sleep. We knew there were huge benefits in the oral motor dysfunction area too so we were anxious to try it. LITERALLY – within a week Luke wasnt just babbeling.. he was SAYING all kinds of new words, parroting us, making up his OWN PHRASES, saying words we didnt even know who knew!!!!! He’s really quite funny. Hes witty. Smart. He loves to share whatever he has with you.. he loves everyone.. he really does. Ahh..

Anyways.

At the beginning of March he had an overnight sleep study complete with EEG and all kinds of electrodes attached head to toe. Literally. He didnt let us down. He woke up 19 times during the night and I was there to console him each time. Sadly, we came out of the mess with petichial hemorrhages around his face where he had screamed so hard he broke blood vessels. That was a tough night. Waiting for the results was tough too. After a couple of weeks we got a letter with results to which we googled every last number and word. Luke had mild central apnea which is the brain tell you to not breathe vs obstructive apnea which is plain not having a clear pathway to breathe. Also, he had shown signs of having parasomnia events throughout the night. The EEG showed good brain waves that reflected no seizure activity while sleeping.

After the initial sleep clinic meeting we moved Lukes bed into our room in an attempt to get him to sleep in his bed. Pretty much I became so exhausted I stopped being able to get up at each waking and keep him in his bed. It became that I could keep him in his bed the first half of the night then my body would shut down and I would find him on top of me in the wee hours of the morning nursing. Whatever. As long as he slept and I slept we made it work. Although, it wasn’t ideal. Its been all out survival mode since the beginning so what’s new, right?

Sadly, his first night he climbed out of bed and fell on my bed rail and cut his eye brow open. He has this nice scar that doesnt grow eye brow hair now. Check out his 2 year photos. Ill post some soon. He will defiantly have a scar for life there.

Fast forward > We are now on Klonopen which is an anti-epileptic drug (AED) that can help with sleep issues. We started on a low dose and began melatonin. Upping levels repeatedly over a months time has proved zero affect on his sleep. He wakes up in a confused state constantly, 6-15 times a night. Those are his parasomnia events.. sleep walking in a way. Sometimes he gets out of bed and walks around looking for us, asleep. Other times he just sits up and waits for us to lie him down again, but asleep. When he wakes up fully though, he was up for 2 – 6 hours in the middle of the night. Imagine how that begins to affect his day time mood, development, ability to learn, cope, play, grow. Hes stifled by his lack of sleep.

Dr. May Greible, the sleep neurologist who we’ve been working with and emailing back and forth set a new plan up for us on April 5, Monday. That was yesterday..

The long and short of it: The plan was to sleep deprive him to get his circadian rhythm back on track. Theres more reasoning and details behind the scenes.

  • Wake up at 6am no matter if he only got 15 minutes of sleep.
  • No nap until 1pm. Wake up at 2:30pm.
  • 3mg regular melatonin to tell body to begin getting tired at 6pm.
  • 7pm shut down all electronic devices
  • 8 PM – Bath, dim lights
  • 8:30 – 8:45 PM – Melatonex and Klonopin (.75 mg), 100 mg B6 (try)
  • 8:45 – 9 PM – Book, prayer, song
  • 9 PM – Asleep

If he wakes, put him back in his bed!  He stays in bed until 6 AM, no matter what.

So, we tried it. He was slobbering tired. Nick had gone to a town hall meeting and literally moments after he walked in and scooped Luke up he began seizing. It’s such an ugly thing to see. It lasted 2 1/2 minutes and we thought it ended. Then as I picked him up he started seizing again so we timed it as one seizure lasting  at almost 4 minutes. I had the emergency meds, Diastat, ready to be administered but he started slowing right then. He came to briefly and he understood that Dada was home and he seemed to want to see him. After he was less confused he began screaming this low, painful, guttural scream. I cant imagine how his head mustve wanted to explode with the pain and his muscles ached from the repetitive tightening and relaxing for almost 4 minutes. We somehow managed to get the rest of his meds in him that were due based on the sleep plan and got ibuprofen in him also.. He quickly fell back asleep at 9pm.

He didnt wake up until 5am. You can guarantee I was watching him half the night. I pretty much lost myself in facebook and talking with friends to keep me distracted so I didnt let my mind wander too much. He was awake from 5-7am and then said “I ti-add” and wanted us to lay him in his bed. He was out like a light again. Nick stayed home and let me sleep while he watched Luke. Nick woke me up after a while and went into work. I sat in bed and watched Luke til 10am when I woke up and wanted to get in bed with me. He stayed asleep until 1115am.

He seemed alert and talkative in his normal manner. Nothing out of the ordinary other than he wanted to lie in bed instead of following me to the bathroom, two times.. I just thought he was tired.

Finally when we got out of bed I carried him because I felt sorry for him. When I finally sat him down in front of his closet to play with shoes while I got him clothes he fell over. I thought he was just tired but then immediately realized maybe I needed to make sure. I went across the room and got his Mickey book. He took one step and fell over again. I went across the room.. again. He fell and couldnt catch himself. He was walking around falling, flailing, staggering and tumbling everywhere.

It was scary.. like something was wrong kind of scary. I called Nick and he wanted to get video. Nick packed up and came home then and by the time he got home Luke was doing better but his knees were buckling under him. It wasnt AS BAD as earlier.

Tracy, our nurse contact in the ACH neuro dept, said she thought that the dose of Klonopen was too high and was basically making him drunk. She said she would talk to Dr. Sharp (neuro) and get back with us. If the Klonpen was too much for him, that means we will more than likely have to wean off that and try a new drug for sleep issues. If its not too high a dose, there could be nerve damage OR it was just the after affects of the seizure.

As I type Tracy is speaking with Dr. Sharp so there will be an update very soon…

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That’s how long Luke went with out any seizure activity.

After our vacation in July Dr. Sharp recommends we start the systematic process of weaning Luke off Phenobarbital, much to our dismay. I had taken Luke in earlier in June and he gave us written instructions on how to do the wean and at what week we drop to a certain level and how long to keep that level there. We had many reasons to not do the wean and the doctor said if we wanted to badly enough he could just switch him to Keppra and wean the Phenobarb but he didn’t want to try that just yet. He thought Luke was good to go since it had been a year without any seizures. The doctor also was going to allow me to do the 4 month wean instead of the 2 month process.

But, right before we began, I decided on my own that I would do the 2 month wean. I realized I would rather it be ME that deals with the seizure IF he was going to have one during the wean. It was the end of my summer and if he was going to have it happen I would rather just get it over with before he starts being out of my care more at night. It was a tough decision to make but both my mom & Nick were very relived to hear my reasoning behind it.

We were scared to start the wean but we knew it was for his best interest. We knew the Anti-epileptic drug (AED) he was on now made him high as a kite, and developmentally, it was slowing him down. Dr. Sharp wanted him off the meds regardless. If he needed an AED it would be Keppra. But with a new med comes the uncertainty of it working for Luke and how it reacted with his body. Phenobarb worked so well for him. He only had breakthrough seizures in July of the previous year so that seemed to be *his* drug. But man, it really had it’s side effects.

The upside to weaning was that Luke would possibly begin to develop more without the barbiturate in his system. Dr. Sharp couldn’t guarantee he would take off like a rocket but that, hopefully, slowly he would begin to gain progress. We’ve been waiting so long for certain developments so we were ready to see improvement in that area. But one thing I was certainly looking forward to was seeing who my Luke was off mind-altering drugs. Luke began Phenobarb at 6.5 wks. At the time we began the wean he had been on it for 92% of his life by then. I just felt like I didnt really know Luke. I wish so badly sometimes I did get to see what Luke was like and I wonder if he would generally be the same or if he would be very much different?

When I’ve mentioned this before people try to convince me that Luke is Luke no matter what. Heh, true, but just seeing his personality change from one drug to the next has been drastic (in our opinion) so what would he be like without EVER having been on these drugs? Around family he’s typically more outgoing than any other time so I kind of feel like those family members don’t see that Luke is so delayed in some things. They’ve got those sweet rose colored glasses on. This isn’t bad though (since we love y’all so much).

Overall, people that meet Luke in the grocery store just assume he’s pretty shy because he looks so normal. If you didn’t know he couldn’t talk and saw him play a little you might think he was totally normal and was just taking in his surroundings. It’s easy to be with Luke and see him play and fall into a comfy little bubble involving his much needed routines, his excellent non-verbal communication (without signing), and his mediocre skills and that’s you’re normal. Then, you get around his age peers and it blows you away. Every time.

We’re so happy to watch Luke’s friends advance and display all these cute, impressive new skills. It’s such a joy to see the new things they like to do. I have to admit, when Luke does something age-appropriate it’s all I can do to not jump and scream for everyone to look at him just so they can witness him doing something appropriate.

It may sound like I’m stuck on milestones or development … maybe I am? At any rate… check back soon for Part 2.

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