July ’15 seizures

Two weeks ago today, we were at OT when she asked when the extra right eye blinking started. I watched closer and then started noticing it myself. At home, it was then that it was more noticeable. It would happen most often in the morning. A week ago, at OT, I took video of it and sent it to the neurologist. That Friday, I called and talked to the nurse on what the doc wanted to do about it. Start another med for 2 days, a very small dose (.25ml) – see if the extra blinking/twitching goes away and call in Sunday if it continues.

By Saturday afternoon/evening, Ryan was walking around like a little old drunken man. The Neuro on call was phoned where he said asked many questions. The blinking/twitching had gone away for the most part… He said to update if its worse, in the morning.

Sunday morning, Ryan crawled into bed with me and the blinking/twitching was back, even worse. I again paged the on call Neuro and he said to come into the ER where we would be on the expectant list and probably admitted right away for LTM (long term monitoring).

Arriving at the ER, the parking lot and waiting room were almost empty. We were seen immediately, blood was taken, and Ryan was monitored by nurses and docs in the ER until a room was ready on the EMU floor. A new unit. Brand new wing. New gowns, beds, high chair, couches, chairs, TVs. New. New. New. All of that was great but it reminded me so much of the PICU when Ryan had his brain surgeries…

He was hooked up to the EEG leads and we were starting to settle into the routine of EMU living yet, again. In my head, I was on autopilot. Press the button for any seizure activity. Press the call light if you need a nurse. Keep Ryan safe and settled so he can be relaxed and peaceful. Keep him busy so he doesn’t get cranky. Cranky boy equals an even crankier mommy. The good Ryan appropriate toys and books from the playroom made it into our room and he was set!

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With no nap on Sunday, he was cranky when we didn’t have any visitors. Aunt Beth made it up almost immediately, which I am so grateful for! We are so blessed to have her on our journey…walking and doing this special needs life without her wouldn’t be the same.

Ryan experienced lots of twitching Sunday afternoon, which we pushed the button for several times (30 times? 40 maybe?). The doc reviewed the EEG and couldn’t corelate anything specific…

Sunday night Ryan was asleep by 1030pm waking Monday morning really early (6am in a hospital is too early, people!!). We relaxed (and fell back to sleep) in Ryans bed until 815am when I woke up to his right cheek/eye twitching and lip smacking. After pressing the button, I just knew it had to show SOMETHING on the EEG!

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The doc came in about 11(I think) and watched the EEG until 645 that morning totally missing the event at 815. He said he would look back and let us know what we saw. By lunch, Ryan didn’t want to eat and was super cranky so we laid down to rest. Not able to close my eyes, not even 10 minutes later, Ryan was seizing. Right hand clenched, right eye twitching, even a little right lip Elvis action… The button was pressed right away, nurses flooded in, I reassured Ryan I was there and he was OK I love him very much and is in good hands. After 4-5 minutes adavan was given via IV and the seizure stopped.

For the rest of the afternoon and evening, Ryan slept off and on. He was awake for about an hour the afternoon and evening of Monday and slept until Tuesday morning about 9am.

The news the doc had for us on Monday afternoon was new information I wasn’t really ready for. News I should have known, and maybe that I’ve heard before but didn’t really hear…

Ryans brain activity is always active. He always has spikes going on which could always lead to seizures. The doc said Ryan will most likely always have this activity and not grow out of it…so we can only hope to find the magic medication to stop the seizures from turning the spikes into something. The doctors words were heart shuddering. Needless to say, as Ryan slept, I did a lot of crying, processing, and thinking.

Between two meds, Ryans dad and I needed to make a decision. Do we go with one that could make him drowsy to start alone with some possible imbalance issues or do we go with another that causes appetite issues.

Together, we decided to go with the one with possible imbalance and drowsiness to start. Ryan is already 42″ tall and still – 3 years and running – 32-35 lbs and his appetite isn’t the best due to another of his meds…so we’ll be on this new med for a few months and as long as he doesn’t have any clinical (what we see) seizures, well start to wean off another of his meds to see where that gets us.

We were discharged on Tuesday evening. Ryan was pretty imbalanced from the new med and also still having ativan in his system…but since then has been much better. I still see that he’s experiencing some eye movements (which has been common for the last month or so), but no twitching or other seizure activity. Everything from the last few days will be reported to our neuro by tomorrow morning and we will go from there.

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If I could ask for anything from you, the one reading this, it would be prayers. Prayers that this new medication is the miracle magic we need for Ryan to eventually only be on this med. For all side effects to allow Ryan to have a good quality of life so his personality and comical nature isn’t masked. That he grows and learns and shows us more than we ever realized he could do, say, or become.

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