Posts Tagged ‘Therapy’

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..


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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Since we’re in therapy and we’ve just started Montessori home preschool work my goal for the basket this year was for everything to be educational towards completing specific goals in his therapy and with Montessori. 

bunny book

Bunny Book – I got out his other Easter/bunny books and plan on talking about Easter with him

easter basket

King Frog watering can – used for Montessori work – gardening, Yellow wiggly worm – used for sensory desensitization, Blue bubble bottle – used for therapy – hand / eye coordination and fine motor skills, Green chick – used for Montessori work, Play Doh – used for sensory desensitization primarily, Echo Mic – used for therapy – encouraging vocalization. 

I should’ve taken a photo of the whole basket because it’s SUPER CUTE. Grandma A got it for him last Easter and had his name monogrammed on it. You can kind of see it in the first photo behind the book. 


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Where we are today

Nasty Neck Node

I do have a couple photos that he’s smiling in but this crying photo shows the ‘thing on his neck best.I call it a ‘thing’ because Im not convinced it’s   lymph node yet. 

So here’s the story: Monday morning we were lying in bed and I felt a bump the size of my knuckle on his neck towards the back. Midday my mom was     over and she felt it and suggested that it did in fact need to be checked out. That shocked me! I thought he was going to give me some story about how it happened to me as a kid. So we made an appointment for that afternoon. We saw the first doctor who could take us at our clinic and she said it was “probably” a lymphatic infection and that we would try a round of antibiotics and “see what happens” 

The “thing” is hard, about an inch to inch and a half across and I can’t tell if it is tender. 

Day two this “thing” got incredibly massive. It looked like a goiter only in the wrong place. It was very scary. We got an appointment for Thursday   morning since he was running a fever with it. By the time we saw the same doctor again it was back to its original size. She wanted us to wait it out and if it got bigger to come back immediately. 

While we were there, I showed her these pimply bumps Luke has all over his legs, diaper area and tummy. He’s had these things for months but they came and went frequently I wasn’t worried. More or less I was curious what it was. She called it molluscum and said he could have it for months. Well, we’ve had it for months! She said that he’ll just have to outgrow it and to not be concerned unless any of the sores look infected. So, now the little man has this strange virus. 


But, on a better note, therapy is going well I suppose! 


Luke has now started warming up to the place and the room we are in finally. Here he’s playing at a toy table before therapy one day. 

Christina is so great with Luke. She’s our speech therapist who is doing the speech and feeding for Luke. First I’ll talk about speech. He came into speech with two sounds – ‘ah’ and ‘da’ – and it was mainly ‘ah’ for everything. It took a lot for Luke to start trusting her since he’s so shy and scared of new places and people but she’s so gentle and patient he gave in and came around. She’s giving us great tips and things to work on at home with Luke that meet his goals for therapy. I really like that we have goals to meet and specific things to work on at home to meet those goals that are specific to Luke. He’s started to make more sounds in general and now has ‘ah’, ‘ba’, ‘da’ and ‘uuuh’ for the word up. He’s making sounds when he wants things, and he’s starting to really catch on to labeling more objects and  understanding more phrases. 

When he was tested at 11.5 mos he tested at a 5 mo level across the board. I was doing everything I could think of to help Luke but Christina’s technique works MUCH better! She’s a pro. Luke is making good advances and we’re modeling age appropriate play for him since he’s behind on that. He still wants to chew and throw instead of inspect and play. Yes, yes, I know kids advance at different paces and “they all catch up by 5” but, when he’s been through what he has you have to keep a close eye on his development. Anyways, enough about speech!

The feeding therapy has BLOWN ME AWAY! Luke went from eating literally nothing, gagging and vomiting to suddenly eating purees and reaching out for different foods. The prescription for therapy was to get him in the high chair three to five times a day. Did you get that?! Yes, it changed our lives, literally. It was almost as if he were a newborn again needing to eat every 2 hours. It was hard getting through daily life trying to make sure he was in his high chair that often. He needed to see lots of different foods to become comfortable with it. Then, the goal was to get him to touch it, then to pick it up, meanwhile I was to cheer at anything new he did. I would also have to take foods and touch his hands, arms, shoulders, face, then lips and mouth. At first he wouldnt let me touch his hands, but he became much more accepting eventually. We still have our bad days and good day with eating. He still throws up, gags, refuses food sometimes but we’re working through it. I’ve learned so much about how NOT to get a toddler to eat, just ask me if you want instructions on what not to do! 



Not happy

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