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Ohhh… the Dentist

I’m so sad! My 2 year old has his first cavity.

We were all hoping he’d have my perfectly aligned, bright white all on their own, pretty teeth but nooooo he got his daddys’ teeth dadgumit! I noticed about 3 weeks ago he had a spot on his tooth right in front on a canine. I tried to brush it off, floss it away, and pick at it but then I realized.. it was a HOLE IN HIS TOOTH! E gads..

We finally made it to Bevans Pediatric Dentistry Tuesday. They said I couldnt go back with him which there was no way he was going to go alone. So, the did the quick look-see in a conference type room. Aaaaaand of course he screamed bloody murder. He has one cavity and one stain. I was scared that stain was a cavity on his molar.

Luke will be getting a filling for that canine cavity. Sadly, theyre afraid to sedate him for it so he has to have a papoose board for it in the ‘quiet room’. Basically.. he’s going to come away terrorized. Greeeaaat.

He will be strapped down onto a board and his arms will be tied down. Then theyre going to try to fill the cavity without local anesthetic if its shallow enough. Theyre worried about his seizure risk with some of the meds they use. I was REALLY hoping they could just knock him out for this. It would be so much easier and far less traumatic.

The big day is next Tuesday but he had neurology on Monday so Im thinking thats a whole lot in one week. Ill just have them reschedule it for the next week I guess.

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Sleep Clinic

Here is a single 36 hr period of wakefulness and sleep that Luke experiences that I recorded to show Lukes sleep doctors, sleep neurologist and clinical psych on 4/15.

Wake 8am

Nap 12:45-2:45pm > 2 HOUR NAP

Bed 8pm

Wake 10:30pm

Wake 10:42pm

Wake 11:25pm

Wake 12:05am

Wake 12:11am

Wake 12:20am

Wake 1:01am > Awake for 5 HOURS

Back asleep 6:16am

Wake 7:13am

Wake 8:10am

Nap 1:02pm

Wake 2:10pm > Put back to sleep

Wake 3:15pm > 2 HOUR NAP

Bed 8pm

Kind of ridiculous right? That night time sleep would be Luke in his toddler bed that is next to my side of the bed so I can jump up and get him to lie back down quickly. Most of those wakings the first half of the night are parasomnias – “sleep walking”. The 1am waking was full on wakefulness. Thats a pretty typical night though. I just don’t sleep since he doesn’t sleep.

(This is our little man.. not being so manly with mamas purse in the ACH waiting room)

The psychologist had said in our first meeting that she thought his sleep problems were behavioral. *insert sarcastic laugh* Yeah. Right. We may have done a lot of things wrong, like nurse to sleep, nurse at each waking as a desperate attempt to get him back to sleep, co-sleep, couch sleep, no routine.. *sigh* When we did implement those thigns and make ALL the corrections that she wanted to.. it STILL didnt matter. CLEARLY there is a medical problem. After a month we saw her again and she agreed that it was infact, -not- behavioral problems interrupting his sleep.

The .75mg of Klonopin wasnt even touching his parasomnia. We did see an uptick in the wakings when we started the med but it leveled back out and we now see that there is zero change in his sleep. Although, it is reducing his anxiety in excellent ways! He can make eye contact with people he doesnt know and even give them high fives sometimes! I almost think we need to stay on some kind of anxiety med so that he can develop faster. At therapy he is making HUGE strides since we started Klonopin.

The regular sleep doctor, Dr. Guillory, just said to finally get off melatonin since we dont even see any benefit from even a large dose, extended release, and the expensive name brand stuff. We have like, 5 kinds of melatonin stuffed in Lukes medicine cabinet. And isnt that sad that Luke has his own med cabinet? And, its stocked FULL of his meds.

(This is Nick and Luke listening to the Toy Story reader on the shiny new iPad)

The sleep neuro said we need to up the dosage of klonpin to 1.5mg over the next 10 days. Dr. Greible said if we don’t see a change then we need to take the next 6 months to wean off that med. We will have to find something else to try obviously. She didnt suggest what we might try. Ive got that feeling that Klonopin isnt going to be the magic drug though. Sadly, Dr. Sharp, the neuro, believed that his heavy sleep that morning after his most recent seizure what induced by the increase of klonopin. Im thinking it wasnt. Lets just call it mommys intuition.

One other point to bring up from that sleep clinic appt was that the Clinical Psych does want us to have Luke evaluated for an Autism Spectrum Disorder (ASD) and Sensory Processing Disorder (SPD). This was not at all surprising to us. Nick had felt like something along these lines were going on since around 6 months old.

I read several books this past summer while I was sleeping on his bedroom floor. Many were sleep training books but I did read a few books on quirky kids and ASD/SPD type stuff. I decided to stop reading them because I really felt like it described Luke but that I was probably reading too much into it. We always had something like this in the back of our minds. Then, we brought up some odd behaviors Luke exhibits and she started asking very pointed questions which we knew what she was getting at.

She said if Luke does have ASD he is VERY high functioning of course. SPD/ASD do go hand in hand sometimes but if hes not ASD then hes probably SPD.

I’m totally ok with this. It would make me feel better to know that THIS is how Luke is hardwired and my parenting style didnt somehow ‘do’ this to him. I just feel guilt sometimes. Like, did something in my pregnancy cause his seizures in utero? Of course thats not the case. Did our (over)reaction to how he was diagnosed with epilepsy cause some of his anxiety and neediness? Probably not.

So, this is where we are now. It will be months probably before we can get into the Dennis Developmental Clinic. They want us to see someone there because they are the best in Arkansas. We dont want him diagnosed with something he doesnt have. And if there needs to be a diagnosis made, we want it to be most accurate and made by the best people. It could be the end of the summer.

I plan on mailing the application Monday first thing. I dont want to sit on this one.

The Purple Gala

I’m going to hit the highlights of the last several months so this one goes allll the way back to mid November when P.E.A.C.E. presented the Passionate for Purple Gala.

I won 2 tickets to attend this swanky fundraiser for my favorite local organization. I saw that the Little Rock Family magazine’s Facebook fan page was hosting a giveaway for a random commenter. I was the 5th person to comment that my child had epilepsy. Apparently, the random number generator came up with 5 and they were looking for a person who mentioned their child. So, the 5th person to mention their child with epilepsy was me!! Lucky ol’ me!!!!

I found an awesome black dress, just my size, at a local consignment store. $35 for a $300+ BCBG dress! I found some amazingly perfect purple pumps (like my alliteration?) at Target for $25 and spent a few bucks on some jewelry. The piece that really set off my outfit was my purple zebra print half jacket or whatever something like that is called. Whatever it was totally pulled my thrown together in a couple days, super inexpensive outfit together. I had my cousin Marilee from Payton Place Salon do my hair and I total felt amazing with my hair done just right and my dress…

Nick and I had an amazing time. We met some really incredible people at the event, saw some young runway models give a fashion show, ate some yummy food from the Peabody (where it was hosted) and listened to Mr. Happy play music! We didn’t dance. Mr. KillJoy does the GOP Shuffle and refuses to dance in public. I also, won something I bid on at the silent auction! I bid on a $100 gift card to Payton Place, where Marilee works. I bid $50 so I was pretty happy about that one.

(This photo was taken by a local reporter for In Sync magazine or something like that. We were in print! People kept saying they saw us in the magazine!!)

After the event was over, a couple we met asked us to meet them in the bar to listen to some jazz music. I think we stayed out there until after 1am. It was the best night we have had in a long, long time. Consequently, it was the first night we had ever spent away from Luke. Now, I don’t mean that to sound like it was the best night because we were away from him! Because that’s not the case!

We spent the night at the Peabody. I was looking forward to getting some sleep but Nick was so anxious to see Luke he woke me up early! He says he was starving but we all know he was ready to get home to see his baby Luke! Mama, .. well, mama could’ve slept like 15 more hours and been ok getting home to Lukie later. 🙂 It’s just how those things go.

Good news and better news here finally!!

Good news:

Luke was just drunk from the 4mL of tripeltal we gave him last night. He got 3mL which is is regular dose. After his seizure, the neuro on call had us give 1 more mL for security. We gave him another 4mL this morning at med time. Apparently, his stumbling, staggering, buckling was my boy being drunk..

Dr. Sharp wants us to increase tripeltal to only 3.5mL right now to ensure seizure control.

BETTER NEWS!!:

Dr. Sharp doesnt think this massive sleep fest was a result of the seizure. Hmm. Interesting, Go on… Right?! He thinks its the larger dose of klonapin. HOLY COW! He thinks that .75mg will be the magic number for Lukes sleep.

To this I want to say..

IN YO’ FACE.. all you doctors who discounted me when I knew there was a REAL sleep problem and sought out your help. You told me to put him in his crib to “CRY IT OUT” and told me it was all a “behavioral issue” to deal with at home. How dare you assume every child is the same and needs “tough love” or whatever it is you want to call what you told us was the only thing that would solve his *behavior*. How dare you look at me and how young I am/was and tell me how I need to parent which was not based on a thing you heard me say had already been done or had been tried. Shame on you.

I want this to be encouragement to ALL moms and dads out there. If you think there is an issue, a problem, a curiosity, anything.. find SOMEONE who will listen. Research the problem. Learn about what the options are. Know what you are talking about. Find someone who WILL LISTEN to yo!!. That is NOT doctor shopping. Persist until you get what you need for your child. I never was mean or hateful though and I learned that sometimes being extra nice is more powerful than being mean and hateful.

*doing my happy dance*

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…

Where do I start?

I haven’t posted in 4 months. I hate that I haven’t posted in that long.

Luke’s development has sky rocketed since November. I like to think I’ve been living in the moment versus analyzing it to blog about. It’s kind of a lame excuse because now I regret not documenting the big thing. Like the fact he started talking -really talking- on New Years Day, or that he can theoretically count to 2.

So, after some friends did some gentle nudging, here I am. I suppose I will catch up on the big milestones, post some precious photos once again and try to stay caught up on his developments and medical news.

Tina Alexander approached me earlier this week to ask if we would allow Luke to be featured this month on the P.E.A.C.E. website. How exciting! 😀

Writing the whole story was hard. I’ve already written – the long story – once and that pretty much sucked the life out of me. I tried to tell the story without getting too dramatic and emotional though I did a little Im sure. Heck! I’m a chick! What can I say?

Anyways… mosey on over to P.E.A.C.E.’s site and read the little special piece (<– click) I wrote on Luke. And, check out the photos Nick chose too.

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