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| Bubba at his Great Granma's house for Easter & Elena's Birthday Celebration |
I know I am not the only one who enjoys being right especially when it comes to important issues regarding our children. Well today I was proven right. Correct. Sure. I love it when I'm right! Don't you?
Today we had our long awaited appointment with his Pediatric Neurologist and it's nice to know my suspicions are finally being recognised. Since Hayden's first seizure back in 2009 I have believed his seizures are sleep related. Prior to him having seizures when he didn't get a nap he would have a night terror that night. It was inevitable. Well the night terrors went away but the seizures started.
I journaled and I found his seizures always seemed to happen when he didn't get enough rest. But his Dr. said there really isn't any correlation. :-| um, really??? Well alrighty then. The seizures slowed and eventually stopped. We went almost a year and a half seizure free.
Then the kids got the flu and things changed. We were really busy with all of our activities. Soccer, School, Volunteering, not getting enough rest and not recuperating from the flu. It got so bad his seizures were almost a nightly occurrence. Then there is no sleep for the household. His seizures always hit him when he's sleeping. So, we purchased a baby monitor and listened for those strange guttural sounds he emits when seizing. I'll tell you what, it was like having a newborn all over again. What with the waking every few hours, and the panicked run across the hall. Our appointment was set but the earliest one we could get was a month away.
It was a viscous cycle. He was experiencing his seizures because he was exhausted but he couldn't get any sleep because of his seizures. The poor boy didn't have any good sleep and once his seizures returned they wouldn't let go of him. It became an almost nightly occurrence. He had headaches all the time. He couldn't concentrate on anything. He hated school because he couldn't focus. He wouldn't sit still because if he did he would fall asleep. It was too much for the poor guy. Everything was a challenge. I was exhausted. His dad was exhausted. Hayden was exhausted. Elena was the only one who got any sleep around here. Lucky girl!
An interesting tidbit of info; Whenever the boy would have a seizure we could always tell. The circles under his eyes would be red. Not black. Not brown. Red. He of course had headaches and on a few occasions he bit his tongue or urinated. Every single time he woke with no memory of his seizure but ached all over and was a super emotional cranky boy.
Suddenly and without warning (that's the way my brain works) it dawned on me, why don't we try Melatonin? To be honest I don't even remember what I was doing. Probably mundane things like showering or brushing my teeth. I thought to myself if it can help insomniacs get some rest maybe it can help the boy. So I called up his neuro and was given the green light to try the Melatonin and to keep our scheduled appointment so we could discuss. I found some 1mg Melatonin at GNC and was more than ready to begin. The first night we gave him some it was a new experience for him. A cherry flavored pill under his tongue that would slowly dissolve. A half hour later; miracle of miracles, HE YAWNED! There is one thing you should know about my boy, I have never seen him yawn. Ever. That first night he slept like the dead. He didn't move for a solid 5 hours. Once he did move it was to get up and go potty, then back to bed.
For two weeks now he has been on Melatonin and seizure free! I cannot begin to tell you what a joy that is to say. It seems as though the Melatonin is working for him. So, today was our scheduled appointment. This appointment was long awaited. Long over due. When it got here let me tell you I would have run you over if you got in my way, I was getting my boy to that appointment for sure and no one was going to stop me. It's a good thing no one had to hu?! Sitting in the observation room and waiting for his Dr. to arrive didn't take long.
We went over his case history and brought Dr. up to speed on what's happened since the last we saw him. Discussed our current use of the Melatonin and us hopefully avoiding prescriptions if at all possible. We talked about the boys sleep schedule and what he ate and his daily activities. I really like his Dr. btw. After a short amount of time Dr. confirmed my thoughts this was a sleep related seizure. His trigger was exhaustion or lack of sleep. It really helped the boy was yawning (he didn't get his nap today.)
The meeting was a very good meeting and I'm glad we were able to strategize what to do with the boy in future. For now he wants to keep him on the Melatonin, it's working and there is no reason to change something if it's currently working. If in future it no longer works then we will increase his Melatonin. If that begins to fail then we will put him on Atavan. He said the pill is helpful for those with sleep disorders and can be an anti seizure med in some cases. So now I have to read up on Atavan so I know what we are getting into, if we go in that direction. He doesn't want to rule out Epilepsy just yet, he said the sleep disorder and the epilepsy can be dual problems. Let's just pray it isn't and that it's a simple case of when he's not rested he will seize. I make it sound so easy.
Well it's not going to be easy. Along with the Melatonin suggestion Dr. wants us to remove all stimulants at 5pm daily. No TV. No Music. No Playing. No Sodas. No Sugars. Start our bedtime routine a little earlier. He wants him to have his Melatonin by 7:30 and in bed by 8. We also talked about diet. While Hayden isn't a candidate for the Low Tyramine Headache Diet he did give me a thumbs up for The Mediterranean Diet we have used before. So I will be happily using that book and a different book called The MediterrAsian Way. I am contemplating another book purchase just so that I have menu planning down. That's always been my downfall and the main reason why we slip away from the Mediterranean diet as often as we do. Once I get my hands on a copy and if I like it I'll pass along the 411.
So for now everything is Status Quo. We have our marching orders regarding the boy and all of us will happily get with the program. I'm going to be doing a lot of reading in the very near future regarding the Atavan, Diets, How to naturally boost Melatonin and how exactly Melatonin works. Vitamins. Exercise. Rest. The whole shibang! I won't become an expert that's for sure but I am already an expert on the boy so who knows. I think the diet is going to be the hardest part though...Just kidding we love everything about the diet it's just easier to hit a drive thru. On the upside you guys will be getting my favorite recipes...well after I change them up to suit my taste buds. I did so enjoy this diet before and I even lost weight (they condone the drinking of wine and eating of bread too, in moderation of course.) ;-)
Dear Reader, thanks so much for being there and being such a good support. Without your support and Gods strength in us, we would not have been able to survive this long!
Until Next Time, SoCal Marisa
was so much fun to read. I read it cover to cover in two days. I could have finished it sooner but I didn’t start reading until late at night and had to take a sleep break but I picked up the book right away the next day. I have to say I haven’t been this excited over a paranormal book since Twilight or even Vampire Diaries and can’t wait for the next installment 
which according to amazon is not until August of this year. Come on August!