July 31, 2009

>> Friday, July 31, 2009

No events. Yippee.

Asleep at 10:45 (what was that about) awake at 7:30. Very happy. Let's hope today isn't the visciously happy day yeasterday was. Still, really cute watching his sister sleep and smiling at her. I think he likes her.

Lamictal AM - 125mg
Keppra AM - 4ml

Lamictal PM - 175mg
Keppra PM - 4ml


July 30, 2009

>> Thursday, July 30, 2009

Bummer of a night man. 7 seizures. None where very long, less than 30 seconds. But it still sucks. One more night and I will call Shari and tell her about his clusters. I sense another dosage increase.


July 29, 2009

>> Wednesday, July 29, 2009

One event. Right after he fell asleep. Less than 30 seconds but Tonic/Clonic. Once his meds kicked in, he slept soundly until 6:30AM.

We also noticed that he has been on the Generic Keppra. According to several parents online, the generic had a higher incidence of break-through seizures. They said the real Keppra worked better at controlling all of them. So we will see.


Can you hear me?

>> Tuesday, July 28, 2009

Every night, before he drifts to sleep, I say a prayer. I say to the heavens: Please let him have a good night. Please let him not have a seizure. I offer my soul, I offer whatever I can offer to make this happen. I plead and I beg. I would give anything required of me to make him whole. To help him be at peace. As he falls to sleep, I pause whatever I am doing, and I watch him. I watch his barrel chest rise and fall peacefully, I watch his large hands relaxed and closed.

Lately, I watch his arm go above his head and his leg stiffen and I know that my pleading has done nothing. My words have fallen silent in the space between all things known and unknown. They have not been heard. Do not pretend that this is meant to be, it isn't. This sweet little boy is not SUPPOSED to tighten up and turn blue, he not supposed to grasp at me pleading: please make it stop. This thing, is an anomaly. It happens to almost 8 million Americans, but it is NOT SUPPOSED TO. It is not his, mine or your test of our character, test of our faith. THIS is not how one tests faith.

When he seizes, I roll him on his side and I wrap my arms around him. I can not help it. He is my heart and I have to let him feel some kind of protection.

Last night, as he seized, I grasped his head and kissed it and I begged: Please don't do this to him again, please no. Taylor was there and she came over and placed her tiny hand on his back and said: You'll be OK Bug. I tried not to cry but I did a little. I kissed his head again and held him tightly and he began to relax. I told Taylor: he's coming out of it. Then, after his whole body relaxed and he began to breathe normally again, he wanted to stand up.

This part is so painful. He wanted to stand, but he couldn't. His frustration got the better of him and he became combatant. It hurts to see, and it hurts to try to contain him. But I held onto him and I told him he needs to be calm, it will be OK, he needs to wait a few more minutes. He eventually fell back down and cuddled with me, he put his hands on my cheeks and kissed me. He was swallowing hard, rapidly. It sounds like he is choking but he isn't, it's a reflex reaction, his seizures cause it. After a few minutes, he was swallowing normally and his eyes began to blink longer and longer and they didn't open as widely. Gently, he fell back to sleep in my arms. I held him tightly and smelt his little boy smell, his smell that should be dirt and sweat and outdoor smells. But he smells like grape. His medication is flavored. I kissed his head and held his hand and I knew that there was a 50/50 chance of another very soon. So I waited, holding him, feeling every little twitch, every breath and I found myself expecting what came next, it was no surprise.

15 minutes after the first, he had another Grand Mal. Just as bad as the first. So, I gave him the Diastat.

It's a simple statement, easy to dismiss. I gave him the Diastat. Let me rephrase it before I detail it: I rectally administered the Valium. When a person seizes, you can not put anything in their mouths. Most often, once they are done, you still can not put anything in their mouths. You have a couple choices: vein, nose, rectum. There is a nasal anti-seizure medication but he will not inhale it. What I mean is, as soon as anything is up his nose he tries to get it out. Even when he is almost asleep. It's a crap shoot to get his Nasonex into the nose and not the eye. They do not prescribe shots so we get the syringe and administer it.

You may ask, why are you telling me this? It's simple, most people have no experience with seizures and what they do know is uncomplicated and they brush it aside since it doesn't happen to them or while they are around. So I want people, who would normally NOT think about it, to read this and actually think about it.

If you look at the picture, you will see a silver packet to the left. This is lubricant. One grabs the Diastat syringe, tears off the top of the silver packet, takes the cap off the syringe, dips it into the packet, makes sure it is well lubricated, just to be polite, and then inserts the syringe rectally and pushes the plunger to inject the medication. A few minutes later, the victim, I mean, the patient, hopefully drifts off to sleep. In a perfect world, that is. In my world, he clenches as soon as I go near his fanny, and then he rolls onto his back. He does not get the Diastat because he won't stop seizing, he gets it because he won't wake up long enough to stop them. He sleeps, and seizes, then sleeps and seizes. So he is somewhat coherent, most times, when he gets it. He just doesn't care. I have been, occasionally, swatted at but usually, when he really needs it, he doesn't move at all. Last night, he didn't move at all.

Once the violation was complete, I laid back down next to him. He rolled facing me and smiled. Only my boy smiles after such an event, the seizure and the medication. He sat up and looked around for a bit, then laid down and went to sleep. I didn't worry too much after that. Diastat usually gives us a day or two seizure free. Not this time. This time he woke me up a little after 7AM having another seizure. Another first. A bad first as far as I am concerned. At 7:25AM he was awake for the day. He was smiling and happy. I was not. Or at least, when he wasn't smiling at me I wasn't. I can't help but grin when he smiles at me. It's infectious.

All my pleading, to the heavens, to Bug, all of it, went unheard. If not unheard, ignored. And ignored is worse than anything.


July 28, 2009


He didn't want to fall asleep until someone was laying beside him. So I did. And ten minues later at 10:45 he had a seizure. A grand mal, long. He fell back asleep and fifteen minutes later he had another. I debated giving his medication time to work, but really, I held out little hope it would and I gave him Diastat. He slept.

At 7:15 he had another. Today I am calling his Doctor's again and giving up the pleading and the begging for something to change.

Talked to Shari, bless her for calling me back so quickly, and we are upping his dosage to 4ml 2x a day. I think this will go higher but hopefully it will give him some relief for a few days. Fingers crossed.

For the record, Keppra dosage is done by Kilogram. He can have 60ml per Kilo if needed. Hoping it's not needed.


July 27, 2009

>> Monday, July 27, 2009

Bad night. Really bad night.

At 11:09 Bug had a 2 minute grand mal. It was devastating. Tore my heart out. I gave him another 2.5ml of Keppra and he slept well until early morning. Beginning just before 6 he began clustering. He clustered until he woke at 8:00, every half hour, some long ones, some minor ones. It really was the worst moment in a long time. That'll teach us to get excited.


July 26, 2009

>> Sunday, July 26, 2009

Bug had a little trouble getting to sleep. Probably something to do with Nana and Papa, he really loves to play with them. Once he was asleep, he slept really well. Tossed and turned a tad but, at least he slept with No events.

He is a little aggressive this morning, but he wanted food. He was slapping and head butting me like crazy until Dad fed him. We will be working on that behavior, when he gets to school, that will get him sent home. Maybe. I will find out tomorrow when I visit.


July 25, 2009

>> Saturday, July 25, 2009

We drove up to Mom and Dad's on the night of the 23rd so we could go to the parade on the morning of the 24th. Bug was excited, too excited to sleep so at midnight he got a Unisom and by 12:30 he was out. By 8:00am he was awake with no events.

No events.

He was a good boy all day, at the parade, in the car, at the ReAl Soccer Game. His FIRST and hopefully not his last game. The game was amazing, both embarrassing and redeming, he watched 30 seconds of it. The fireworks after the game were pretty darn cool too. He watched them only a little.

We got home a touch before Midnight and he really was too excited to sleep. I banished the spinning toys, turned off the lights and the TV and he was out within a half hour.

At 9:00am he was awake and the streak continues. No events.

Lamictal - 100mg
Keppra - 2.5ml

PM - 175mg
Keppra - 2.5ml


Morning Update - July, 23rd 2009

>> Thursday, July 23, 2009

Awake 7:30am

Bug slept really well. No events. This is beginning to get exciting. Although if he head-butts me anymore I won't be able to use my arm.



>> Wednesday, July 22, 2009

As if 3 poopy diapers in as many hours wasn't enough...bathtub events as well. Important to note? Doubtful, but important to bitch about? Oh heck ya.

AND it gets better. I missed the Cubs 4 runs while I was cleaning the boy. Nice.


Update for...oh why not the entire week?

July 22, 2009

What a week! Bug started the Keppra the early morning of Tuesday the 14Th. Since then, he has been seizure free! It's a new 60 day record. So to recap:

Monday day - nasty ones
Monday night - none (Keppra)
Tuesday night - none
Wednesday night - none
Thursday night - none
Friday night - none
Saturday night - none
Sunday night - none
Monday night - none
Tuesday night - none

He had a rough couple of days at the beginning of the Keppra. Very emotional for no apparent reason. When he was hungry, if we didn't feed him in time, he would cry and hit himself. He even went so far as to bruise his thighs a bit. It was tough to watch, but nothing would calm him until he ate. Once he ate, he was fine.

He had one event that wasn't food related. He just cried and cried and slapped himself. He did this until we got him home and gave him his nightly dosage. An hour later, he was asleep.

One morning he awoke crying. THIS was completely new. He was weeping and wanted to cuddle with me. I held him and kissed him and he eventually went back to sleep. When he woke next, he was his normal happy self. We suspect he had a bad dream. Not to sound harsh but that would be cool. We aren't sure he has ever dreamed.

He seems to be less emotional now. His appetite has decreased some and he no longer scrounges for food.

On Monday, he had a half hour EEG and follow up appointment. The EEG showed that the majority of his brain appears to have more normal waveforms, but his frontal lobes are still erratic. This could account for his lack of speech.

He is more focused and watches TV, he hasn't watched TV for years. This is encouraging.

AM dosage
100mg Lamictal
2.5ml Keppra

PM dosage
175mg Lamictal
2.5ml Keppra


24...the continued part

>> Wednesday, July 15, 2009

We got upstairs into a room at 1:45AM. So, if we count backward we see that we were sitting in the ER for 7 hours, 2 in the waiting room and 5 in the exam room. Really, it didn't seem like it and Bug was so cute the entire time. He was a really good boy and enjoyed all the attention from the 3 Doctors, 2 Nurses, 1 Admin, and the various other folks that popped in and out.

As far as hospital rooms go, this one was nice. They had the 'bed' pulled out for us already. That's the thing with Children's Hospitals, there are plenty of places to sleep. They suck for comfort but at least you can be there.

Duane settled us in and told us what Bug was in for. Tests. Some yucktastic ones and some not so bad ones. He was going to get a catheter for a urine sample and a nasal swab for respiratory and meningeal viruses (now, I am not sure about the meningeal, but the test was not pleasant).

Bug was given his first dose of Keppra and I prayed it would work. Duane said we had a hour or two before he got everything ready and we all tried to sleep. Glenn had gone home to pick up his phone (I packed a bag earlier in case we stayed the night, mostly because I am brilliant but for sure because I know how Hospitals work)and he got back just in time to catch some sleep. It was 2:20AM.

At 3:30AM Duane walked in. Head to toe in gown and mask. This did not bode well for Bug.

He did the catheter first, Bug woke up. Curious, he usually sleeps so soundly (read that with the most sarcasm you can muster) but was really good about it, fussing only slightly. Once Duane had recovered the liquid gold, Bug went back to sleep. Cool. For a moment it was cool, then it got ugly. Duane pulled out a catheter the length of my hand from wrist to tip of middle finger. He measured Bug's cheek and calculated the length he might need. Uh oh. After he was ready he placed the catheter in Bug's nostril and kept going...and going and then suctioned it to get the sample. So, yeah, Bug woke up and was not happy. He began to cry and Glenn and I did our best to comfort him, but most times, he will not be comforted. We try anyway, just in case it helps. Duane removed the first sample and went in for the second. This one was not as easy, Bug was awake this time and aware of what was going to happen. He put up a little fight, not much, and then it was over. Bug looked at us like we had betrayed him and was praying for our deaths, and just like that, he was back asleep.

It was 4:00AM.

24 hours was complete. A very full, very emotional 24 hours and Bug was none the worse for wear. He was sleeping soundly and without incident. I looked at him, so beautiful in his peaceful slumber and my mind played out all those things that are best not to think about. I thought about what could have changed, about what could happen yet, and I thought about life without him. I pushed those thoughts away and focused on our chance, this chance to actually get something to help, to really work. To bring our little man all the way back. And I curled up on the plastic couch and went to sleep.

At 8:20 the door opened and in walked a different Doctor. Glenn answered all his questions and I tried to go back to sleep. But it didn't work and I jumped in the fray. The one thing that played in the back of my mind was: Glad I left my bra on. Far cry from my early morning thoughts. Go figure.

At 8:45 the Doctor woke Bug up, he apologized as he was doing it and we acted like it was OK, but really, it sucked. Once Bug woke all the way up, the Doctor REALLY apologized. He could see the energy that we had to try to contain. He told us, we would be getting an MRI and an EEG today. Big sigh, gonna be fun. Because of that, Bug had not been fed last night, nor would he be until the tests were complete. Lack of food will piss him off. And it did, but only kinda. He wasn't too bad. The IV was getting in the way but other than being tethered to that, he did really well.

Another Doctor came in. He was not as cheerful as the first. When he asked how Bug had done and I told him he no events. He said good. I said: Looks like the Keppra worked. He corrected me: It's premature to say it was the Keppra. Most likely it was the Lamictal. Glenn smiled and I told him: Yeah, no. He has been on the Lamictal with not only almost nightly events but clusters too. Not break-through events, it wasn't controlling all of them. We liked the Lamictal because it brought our boy back, and we do not want to stop it. But in the past 3 YEARS only Diastat has ever stopped his clusters. ONLY Diastat when he is in Sleep-Seize-Sleep-Seize mode. So I have NO qualms with making the statement that the KEPPRA stopped the clustering.

The Doctor agreed it looked good for the Keppra then. Uh huh. He said it shut me up. I'm no fool. OK, I am little fool. Not a big one though.

Glenn and I turned on the TV as we waited, because we were tired, we didn't realize how loud it was. After a few hours, and a few more times telling people his story, Dr. Morita came in. I liked her immediately. She was followed by 5 other people, mostly Doctors but one sign interpreter. Didn't get any other names. Who would?

We talked, she talked, we listened, she listened and she examined the boy and he smiled. A LOT. He smiled a lot. And everyone in the room smiled too. He does that to people. It was then, that she asked if we could turn the TV down. For the first time that day I felt like a BIG fool for not noticing that we were all raising our voices to hear over it. Oopsie poopsie.

She told us she saw no need for an MRI or EEG since he had them in the last 6 months. We agreed they were not critical and we talked about the medicinal routine. When she asked if there were any other questions I looked at Glenn, he looked at me and I spoke: I would like to revisit an EEG. SOMETHING obviously changed. He has not had seizures like this in over 2 years and I will not risk losing my boy again. We have seen so many small, but good, advances in him, I want to keep a VERY close eye on what is happening so he doesn't begin to regress again. Since he can't talk and tell us, we have to search for it. I think another EEG is good idea.

I braced for an argument. Didn't get one. She agreed and all the other Doctors agreed too. Cool. They left the room and Glenn and I where thrilled. I had to run back out and ask about a low sodium diet. She suggested that when we see a change with him when we cut back his sodium we should talk him to his pediatrician and have blood work to see where he is at. To make sure he isn't crashing. I said: Brilliant! She smiled. Feeding a Doctor's vanity can work out well. I asked her: Could it also cause a Lamictal overdose? She agreed. Lamictal may be a sodium blocker, so we reduce the sodium, Lamictal blocks the sodium and we have a problem. It was nice to be validated. One does not usually find Doctors like that. We were blessed as much as we were cursed that day.

We arranged for the EEG to be done a week later. I called while we were waiting for our discharge paperwork and scheduled the EEG and follow up with Van Orman's office. When Happy-Morning-Waker-Upper-Doctor came back in, he told me they had scheduled all of it. I laughed and said: I already took care of that. Sorry, I am not used to someone doing it for me. He laughed: We got an appointment for Sept 14. I smiled: I got one for Monday. Not with Dr. Van Orman, but it's a follow-up so we asked for his P.A. is that OK? He smiled: Sure it is! You did better than I did. I apologized. He brushed it off.

He made sure we had the prescriptions we needed and bid us farewell. We got Bug ready and an hour or so later, the nurse came in with his discharge information and prescriptions. We politely nodded and told her we had been through it all before. She asked if we wanted to fill the Keppra downstairs or take it with us. I said: Hmm, maybe downstairs. Glenn said: We have to transfer it then. I said: Yep, we'll just take it with us. She said: OK I will tube it down to them and it will be ready by the time you leave. ??? So let's go then. Um, one problem. His IV was disconnected but the IV catheter was still in place. Oops. She removed it and we put him in the stroller and headed off. He was so relieved. So were we. She walked us to the pharmacy and then took her leave. Glenn and I looked at each other and smiled.

The Keppra wasn't ready so we took him to the car and brought it around to the South entrance.

I waited in line to get his meds. Not something I want to do everyday. I heard: this is to help him feel a little better until he starts his chemo. I began to cry, when in walked a little boy with his Grandmother and Mother. He walked passed me, I smiled and winked, and stood in front of a lady sitting with her baby in a stroller. He said: Hi! She said: Hi! He said: I have a brain infection. I am getting medicine to help me. We don't live here. His Grandmother heard him and turned, I met her eyes and smiled. It was that: he's OK, we are all watching out for him smile. And she grinned and turned back to her business with the pharmacist.

You see, in a place like Primary Children's, all strangers are part of a big family. That family that notices the sign above the door when you walk in: The Child First - Always. And thinks that these people will understand and will help my child. They get it and I love them for that. This family that looks at all the children running, riding or crawling in those rooms and thinks, I wonder if he wants a cookie?

And we went home.



>> Tuesday, July 14, 2009

Sunday, July 12 - Monday, July 13, 2009

It all started with Bug not wanting, or not able to, go to sleep. At 10:30pm we pulled into the garage and it appeared Bug was tired. It appeared that way until he got out of the car. He was hyper but not running around. He would lay down and then get up. He would spin whatever he could find (glad we no longer have the cats). I gave him a Unisom once I recognized he could not shut down. And I waited for him to drift to sleep. It didn't happen.

At 2:30am I took him into the family room and watched TV, making him lay on the couch, this pissed him off in a BIG way. He was slapping his thighs and screaming at me. I would try to calm him down and whenever I got close, he would pull my hair. Something was going on. It brought back a very vivid memory of another night a long time ago.

When he was 4 months old, he had a full 24 hours with no sleep. Anytime I laid him down he would scream and scream like we had never heard before. He had no fever. He was still breastfed and I hadn't eaten anything abnormal or out of the ordinary. He just COULD NOT shut down. If I even tried to sit down, he wailed. Not even to feed him, he would not have it. I had to breastfeed while walking, and that takes skill. I had to walk, to pace back and forth and around the kitchen island and I cried. I remember it vividly. As I walked, he would look at my face and smile at me. I could not garner my standard: Stop smiling and go to sleep, I was too tired. I tried to wake Glenn but he would sit up and then fall over. So, I walked alone, and I cried I was so frustrated.

Nothing would help him. Glenn got up once about 3am and said: Just put him down. I looked at him, most women KNOW this look, it's the 'YOU are an idiot, of course I tried that, do you think I LIKE walking at 3am? Do you THINK I am SO NEW at this that that thought never occurred to me? Why did I procreate with you? When are you gonna die?'. But I didn't say that. What I did was look at Glenn and placed Bug down on the couch. The noise that came from the kid sounded like he was being tortured. And I sat down on the opposite couch.

Glenn and I watched him, and listened to him flail and wail. Glenn looked at me every so often. I closed my eyes and tried not to lose it. After a lifetime of about 6 minutes, Glenn said: Has he been doing this all the time?

This time I did say: No, Glenn he started doing this as soon as you got up. I just wanted to hold him all night and he got used it.

Glenn started to get a little mad at my response but all I heard was the baby screaming and I went to pick him up. Glenn got to him first. He held him while he sat. Bug still screamed. He tried to calm him, which usually worked, but not this time. Glenn reluctantly stood up and as soon as he took ONE step, Bug calmed down. Glenn looked at me like: See? He's calm. He walked around the island and then sat back down. Bug began to scream as soon as Glenn stopped to sit. I gave him the look like: Uh huh, didn't I SAY that. So I went to our bedroom for a break.

He was quiet for a bit and I began to nod off. Then as quickly as he stopped he began again. I thought: Glenn is a dead man, and then I heard the toilet flush. Oh. But the screaming continued. After 20 minutes I went downstairs.

Glenn said: I got this, it's my turn.
I said: Thanks, but do you think I can sleep through this?
Glenn: You can hear him?

I said nothing. Mommy hearing is stellar of course but in our family, it's legendary.

Glenn said: Well try to get some sleep.

I said: That's like saying, don't breathe and let's see how that works out.

We both sat there while he screamed and I picked him up after a few minutes. He calmed down immediately, Glenn got me a drink and then went to bed. We had arranged that he would spell me in 2 hours. 4 hours later the sun was up and I was still walking with my baby. Two days later, he started to refuse breast milk. It was THE longest 24 I had ever had.

Until Monday July 13th, 2009.

At 2:30am I gave him another Unisom. Usually, he will be asleep in less than an hour but this was not a normal night. At 4:00am he FINALLY fell asleep. I wasn't relieved. I was terrified. And I was right to be. At 4:07 he began to seize. He began to seize like I had not seen him seize in over 2 years. I leaned over and tried to console him. I watched him begin to turn blue. The expletives that escaped my mouth at that point, would pale a truck driving navy seal. I was devastated. I picked him up, rigid and seizing and took him to our bedroom.

Glenn! Bug is having a 3 minute Grand Mal. Glenn got up and said: What?

I said: Over 3 minutes and laid him down.

Glenn and I both watched him begin to rhythmically contract and we knew he was coming out of it. His eyes rolled into the back of his head. His arms began to reach for me, he pulled his legs up toward his chest. I held him. I kissed him. I prayed this was the only one. My prayers where not answered the rest of that night, or the next day. After the first one, I got the Diastat.

I laid down next to him and held him, trying not to cry. At 5am I fell asleep, listening to Glenn snore. At 5:15 he had another. Glenn and I leaned over him. I said: Diastat? Glenn said: Probably. I got it ready and then didn't give it to him. We were less than 2 hours from his regular wake up time. Maybe he would wake up and they would stop. So I held off.

At 6:30 he had another, I thought I had made bad call. I was crushed. He stopped and went back to sleep. At 7:45, I was awakened when he had another. This time, I did cry and I tried to keep him awake. But he slept. At 8, Glenn went to work and told me to call him if he was acting strangely when he awoke. I agreed and at 8:45 he had another. This time I was able to keep him awake.

He barely ate breakfast, and I was barely functioning. I gave him 125mg Lamictal at 11:30 and he went into my bedroom and fell asleep. I cursed as I watched him. At 11:45, he had another. I got the Diastat and told myself: I will give it to him. He slept until 1, when he had another much milder one. Less than 30 seconds. At 2:30 he had another mild one. I thought he was getting over the cluster and began to breathe easier. I was so wrong. At 3:45 he had another Grand Mal over 3 minutes. I got the phone number for his Doctor. At 4:55 he had the worst one yet, I called Glenn, close to tears. I told him I was taking him to Primary Children's ER and we are gonna get some tests done. Glenn agreed we needed to do something. These were so intense and something had changed. In a bad way. I called Dr. Van Orman at 5:02 and the office was closed.

I waited to talk to the on-call Neurologist. She agreed we should bring him in immediately. That it sounded like something had changed and we needed tests. I waited for Glenn and we went to the ER.

2 hours later, we were sitting in the exam room and Bug was happy as ever. The resident came in, we told her his story, beginning to present, and she said: I can't even imagine what it is like. I said: I hope you never do. I also told her that I will not watch my boy slip away from us again. That NOW was the time to be aggressive with tests, that I wanted a spinal tap, a CBC, an EEG, MRI, everything. She agreed about some of it, but still, no spinal tap. She did a physical exam and it was apparent that he had no deficits. He was walking fine, he was smiling. She was amazed he was doing so well.

An hour after that, another Doctor came in and told us that she had consulted with the Neurologist and read through Van Orman's records. She told us we would be adding Keppra to his routine. She also asked us if we would want to be part of a study for emergency AED's since he had NOT had the Diastat. We said sure. And asked about Keppra, what was the mechanism? What were the side effects? She smiled and said: Dunno, I'll send the pharmacist over. And she did.

30 minutes later we were talking to the Pharmacist and reading through literature. 30 minutes after that we were being admitted. Bug was spending the night...


Sometimes the sister helps too much

>> Thursday, July 9, 2009

July 8th
It was 9:30pm, Bug was winding down and I was talking to a friend. He was laying, quietly, on the floor on a pillow. Occasionally he would throw out a DaDa NoNoNo but for the most part, quiet. It was nice.

And then the Sister comes barreling into the room, tickle fingers at the ready and wiggling. She pounces on her unsuspecting victim and he SQUEELS in delight. It is too cute to stop, he is laughing. Bug's laughter is contagious. His entire BODY shakes with glee and his smile..well, it's a Mother's dream. So I, foolishly, enjoyed the sounds of the children playing and laughing, throwing out a: Hey, too loud, calm down. But for the most part I just listened and Kate listened. She did say: Wow, what is going on there?


For a while. Then he couldn't shut down. At 11:00pm Tay was sleeping, Bug was not. At 12:00am too. At 12:45 I took him out of our room and pinned him on the couch. He was given a sleeping pill, we ONLY give those when he is like this. Once Bug hits a certain point, there is almost NO chance he will fall asleep on his own. Medication is his only hope. When he is sleepless, he is more likely to have seizures. Some people question this practice, I tell them: I'll send him over next time.

Daddy came out and laid on the floor by him. By 1:15 he was sleeping soundly. He slept really well all night, getting up at 9:00am. No events. I was surprised. I was counting on him clustering after being so hyper but...he slept peacefully.

Although, I have learned my lesson. No playing after 8.


July 8, 2009

>> Wednesday, July 8, 2009


No events last night either! Whopppee.

Not to say that yesterday wasn't eventful. It was. It was gross.

July 7th

Bug was very cute all day, very cuddly and smiley. He sat by me and was watching TV, when he saw something he liked, he would grab my neck and shake me. Yep, it's as painful as it sounds. He's 60lbs and strong. Having as many seizures as he has, will tend to strengthen the muscles. Sounds crappy but it's true. It's a work out.

After, oh, all day, of this joy, he started getting a little whiney. Now, he doesn't do this much anymore and I knew something was wrong. Like a fool, a fool with a certain amount of hope that he will, one day, just spout out: Mom shut the hell up, I asked him if he was sick to his stomach. He looked at me and whined. Bad sign.

So I watched him. He sat by me for about a half hour and I eyeballed him. He went upstairs, whining as he went, laid down at the top of the stairs and took a nap. This was a good test. He had taken a nap a few days earlier and had a seizure, but not this time. He slept for half hour and woke up smiling. I thought he felt better and cuddled with him when he came downstairs and sat by me on the couch.

All I really should say is: Thank God in his heaven that we bought a Pleather couch. He just sat there and then began to wretch. I grabbed the diaper wipes container, opened it up but missed a majority of the first wave. I got almost all of the rest though, yea me. Small victory. I hurried him off to the bathtub just as Tay walked in sunburned. I was already crying...I will detail why in another post...and seeing her burnt, having ignored me, yet again, and having not come in to get sunscreen on, well it sent me into sobbing hell. With new allergy meds, it was interesting.

He didn't want a bath, at first. Tay did though. I told her through my sobs, that she wasn't getting a bath at the moment and I was very disappointed with her. She cried. She apologized. She apologized while crying. Bug began to cry. My shoulders slumped, I stopped crying but was still gasping (you know what I mean) and made sure the water was cooler so he would be happy.

I dunno if he was happier or if he was just humoring me, because when I washed my hands, arm, leg, and shorts and grabbed for the towel, he stood up. The towel is his signal to get out of the bathtub. He does NOT always want to get out of the bathtub and will ignore me but this time, I wasn't even near him and he stood up. When I dried my arm and leg, he sat back down. I giggled and walked toward him and brought the towel up...he stood up. I put it down, he bagan to sit back down and I starting feeling badly so I held it back up and got him out. It's not in my nature to tease him too much, it's taking advantage and I don't do that.

He got out, we dried him off and he sat with me until Daddy came home, only a few minutes later. Glenn saw me and said: Ummm...how's it going? The end part of that question went up an octave or so. Glenn suspected I was gonna tell him the kids were on eBay or something. I wouldn't do that to anyone.

125mg Lamictal morning
175mg Lamictal night


Morning Update - July 7, 2009

>> Tuesday, July 7, 2009

Two good nights. No seizures.

I changed his medication a little. 125mg in the morning and 175mg at night.

His therapuetic level has to be constant or it does little good. It appeared to be wearing off by the early evening, since he would have seizures immediately after falling asleep. Once the medication kicked in, he would stop clustering, then as the morning approached and his meds wore off again, the clusters would start up. The therapuetic levels was not reached and constant throughout the day.

This new regime seems to be working, I have my fingers crossed.


The rest of the 4th

>> Sunday, July 5, 2009

We all went to Layton park to celebrate. Bug walked around on the Monkey for a bit and then both he and Daddy got tired so we put him in the stroller. It's fabulous to be back in Utah. In California, they have a parade and fireworks. That's it. And we watched the fireworks from the Target parking lot. Shot them off the top of the mall they did.

But not in Utah. In Utah, they party all day in some areas. No coin-diving in saw dust anymore but plenty of things to jump on, in and over. It was great. Bug loved watching the people and, occasionally, he would reach out for someone passing by. They would stop and hold his hand and, not just acknowledge him, but try to interact. It was great.

By the time we were doing the 'blowing up' portion of the evening, he was very tired. I left him in his car seat, playing with his book and eventually he fell asleep. This scared me and I hovered. He had one 40 second one and fell back asleep in Daddy's arms. Right before we were getting ready to go, he had another. Daddy has handing him over to me so I could put him in the car and he felt him begin to tighten up. It lasted 30 seconds.

We ran back to Mom and Dad's to check on Dad (who had some teeth pulled...8 to be exact) and pick up the stuff we had left earlier. Both kids were sleeping so we brought them in and laid them on the couch while we gathered our belongings. Bug slept for about 45 minutes while we got everything and filled Dad in on the night. Just as we were going to pick him up...he had another. This one was over a minute. Papa and I comforted him as best we could and tried to make him comfortable. Glenn and I decided that if he had one more, he was getting Diastat as soon as we got home.

I didn't take his meds with me, so he hadn't had any Lamictal for hours. Bad Mommy. Gonna buy a pill case today and carry at least a days worth of his meds. Also gotta find my Diastat case that I usually have with me. No idea why it wasn't there.

We got home, got to bed and when he had a seizure at 4:50, I gave him the Diastat and he slept well. We slept well. Sleeping was nice.

He got up around 11:30 and flashed me a big grin when he saw me. He was verbal and VERY active. Very. The house is a mess.

125mg Lamictal AM


Morning Update and catch up - July 4th, 2009

>> Saturday, July 4, 2009

We were religious about Bug getting 175mg at night. It seemed to work. He had one minor event, which may or may not have been a true seizure since it was so rapid and not as intense. He did have one in the car on the way to get Nana yesterday. He fell asleep and right before waking, he had 'startling' type of event. He awoke as if he had been startled and had a look of 'what is going on' on his face. I reached back for him and he grabbed my hand. Even though he had complete control, I believe it was a small seizure.

Last night...sucked.

Glenn and I attended the Utah Symphony Independence Day Celebration at Sundance and Mom was watching the kids. She said Bug was VERY active but not annoying. He had many soiled diapers and would NOT go to sleep. It was 11:15 when I laid down with him. At 11:40 he had is first, it was fairly mild, he was rigid and gasping but still able to control his arms and legs. It lasted 20 seconds.

At 5:40 he had a big one. A really big one. He hasn't had a long seizure in months but this one was almost a full minute. He has rigid, swallowing hard and trying to move his arms and legs without success. At 6:30 he had another one. This was over a minute. Rigid, hard swallowing, couldn't control his arms and legs effectively but was able to try to reach for things. He never fully awoke and immediately drifted back to sleep.

At 8:20 he had one more. This one was milder, thank heavens. He was rigid but could control his arms and legs, he was gasping and it lasted 15 second.

I have no idea if this was a fluke or not. He woke up smiling and happy and very verbal. He went upstairs to fetch Nana and is now pounding on the bathroom door trying to get her to come out. Kinda cute.

Not a way to start the 4th of July. We missed breakfast and the parade but what can you do? A night like that needs as much sleep as possible.


Morning Update - July 1, 2009

>> Wednesday, July 1, 2009


One minor event in the evening. Rigid, less than 10 seconds immediately following his medication. Slept soundly once he went back to sleep. Bug did not want to sleep after his seizure. He was bent on staying up for a bit. We turned off all the lights and the TV and listened to his DaDa DoDo for about half hour before he drifted off. I started out annoying with me contributing a fair amount of SHHHH!!!!! But after 10 minutes it just became funny. Ba, Da, Do, Ma...his sounds are fun to hear.

I thought that maybe he had a couple small events but Glenn assured me that was not the case, he was just settling in. So no Melatonin and 175mg of Lamictal seems to be a great thing. I need to be sure to give him is pills a little earlier in the evening.

Morning was NOT fun though. He ate his cereal and we left him in his chair while I showered. When I got out, he had decided he was still hungry and ate the only thing he could get his hands on. One guess: he made it himself and I had to shower him and sterilize his chair after. Sigh.

He is running around the house turning lights off and on and spinning deftly on his Sit and Spin. Not so much Sit as an amazing amount of Spin while kneeling. I will try to get a video of the Sit and Spin. It's totally cool.


What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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