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Archive for the ‘Medical’ Category

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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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.

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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*

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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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I have decided to dedicate this month to helping raise awareness about Epilepsy to my friends and family and anyone else I can reach this month. Epilepsy is more prevalent than people realize.

– 300,000 people have a first convulsion each year.

– 120,000 of them are under the age of 18.

– Between 75,000 and 100,000 of them are children under the age of 5 who have experienced a febrile (fever-caused) seizure.

Also,

– Epilepsy and seizures affect almost 3 million Americans of all ages, at an estimated annual cost of $15.5 billion in direct and indirect costs.

– Approximately 200,000 new cases of seizures and epilepsy occur each year.

– Ten percent of the American population will experience a seizure in their lifetime.

– Three percent will develop epilepsy by age 75.

http://www.epilepsyfoundation.org/about/statistics.cfm

Luke’s seizure disorder has given our family a purpose.. we desperately, along with many many other families just like ours, want to see a cure for epilepsy someday. The more we can raise awareness the more funding can be aimed at researching the cure.

Epilepsy awareness month ribbon

Let’s fight this so “that not another moment is lost to seizures”

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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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92% of his life..

We did the math the other day: Luke has been on Phenobarbitol for 92% of his life. We don’t know him without the meds basically. He was 6 wks old when we started the meds. It’s kind of sad to think that just now, at 18.5 mos, we get to see what he’s really like. Don’t get me wrong, he had personality before, but this is just different. He’s *here*.. he’s participating in life. Whereas before, he just seemed… I guess, as high as a kite. He just kind of watched everything. It’s hard to explain the difference we see already. 

Bottom line…  The past 3-4 wks hes really changed. He’s turning out to be really funny.. I mean.. RE-HEALLY funny. The boy has this funny fake laugh he uses to get you to laugh at .. nothing! HAH! He just loves to laugh. He’s started signing *more* this past week which we have been working on for like.. a year now. And he uses it appropriately as well. It’s his own version but it certainly gets the point across. He signs *hat* also but needs more prompting with that one. He has started saying ‘uh huh’ better. It’s not so breathy and paused. He’s showing obvious signs of wanting to know more about the potty. 

Gosh, it’s just so good to see that hopefully, maybe it was the meds holding him back. Even if he has a seizure I’ll be so thankful to be off Phenobarb.. 

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My goofy boy!

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