Genetically Normal Male

>> Wednesday, December 23, 2009

We just received Bug's results. Go ahead and guess what they said. Don't read the title, that's cheating. And yet, I cried. He is genetically normal as far as we know. All the major genetic issues have been ruled out. Oh goodie. I am excited, I really am. I just need answers and so the search continues.

Dr. Rope - the new man in our lives that I am quickly beginning to think may be THE man. Our next test appears to be a 'sequence analysis of SCN1A, the gene associated with Dravet syndrome'. I am positive that this result will be negative for Dravet but let's do what we can to rule it out. Fingers crossed.

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Good nights and easy days

>> Tuesday, December 1, 2009

Bug has had two glorious nights. Not only did he NOT have any events, he slept REALLY well. Which means that, in turn, Glenn and I did too.

We took him to get his blood work for the genetic karyotype last week. He was a trooper, but then again, he always is. Hopefully we will hear back this week. If there is nothing apparent, I will ask to be referred to the NIH program that Glenn texted me about. I just can't believe that with his specific symptoms, there isn't something we can find if we look in the right places.

He has been so charming and fun the last few days too. Happy and playful, seemingly very attentive as well. As I drove him to school today, he was watching the route I was taking. He was watching the buses parked along the street, following them with his eyes and turning his head. This may seem like a small event but it's actually very big. It shows that he is interested in things outside of himself and what he is doing, that he is acknowledging things around him, coming more into the world. Do we evaluate too much? Do we project onto him? Maybe a little, but when he can't tell us what he is thinking, we have to guess and we have to be detail oriented. To look at what is different and what is consistent. When the child can say to you: I have a headache, you give him or her medication. When Bug, hides under a blanket in the middle of the day, or covers his eyes, what would any parent think? We think: He has a headache. And we give him medication.

His entire life is a guessing game. And he smiles about it.

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Back on the horse

>> Sunday, November 29, 2009

Bug has had a bad couple of months. It became depressing to write about all the seizures. 20 in one night...with Diastat in between sets of ten. A night with none and then a night with 8. It became too much. But I need to be more diligent...I need to make sure I keep a record of his events and his day to day activities. Starting tomorrow morning after he goes to school. I will try to catch up and stay caught up. It may become necessary should we change Doctors. And yes, we may change Doctors.

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Hearing Assessment

>> Tuesday, September 29, 2009

Sometimes, when I get really pissed, I get really calm and my arguments are vicious. Glenn told me once he hates to fight with me. I said: Then don't. So that Friday, when I was so pissed, I called all over and talk to so many people it began becoming a blur EXCEPT...

...Tay was being Tay and was whining about going to school. So I said: Fine get in the car and we ended up being 20 minutes early. It was a sign, a big neon sign that said: GET OVER TO THE PEDIATRICIAN AND GET A REFERRAL! The kids Ped, Dr. Knorr, is next door to Tay's school. Well, Duh! So I went in and asked for the referral I needed to the Hearing Assessment Clinic at Primary Children's. They kind of hemmed a hawed a little about has Dr. Knorr treated him for this? I sighed and said this exact thing, remember, I am pissed and have slept for only a few hours: Dr. Knorr and I have DISCUSSED this but he is being TREATED at Primary Children's, I have called them but sometimes they are too slow. You see, he has SOO many seizures, 13 last night, that anytime ANY Doctor has to treat him they referr him away to Dr. Van Orman. I can not get a hold of Doctor Van Orman at the moment and so I am here, BEGGING Dr. Knorr for a referral to just have his hearing evaluated. I have been asking for this for 3 years, and over 1500 seizures later, I am still asking. I watch him seize and then he doesn't say Mamma for a few days. Please, just ask.

And they did. They called a nurse in and I said one thing to her: 13 seizures, each one takes more of his speech away and I just want to know if he can understand or hear at all. She said: No problem, I will talk to him and call you back. I blinked. Dumbfounded. Why the hell isn't SHE on the front desk?

Later that day, she called. I gave them a few days, since I KNOW how Primary Children's works, and then I called and got him an appointment. The lady was so nice. She agreed that the seizures and the speech should be treated as seperate things until someone, or some test, can link the two. I told her I was gonna kiss her when I saw her. She giggled. It was cute and I just might.

He goes in on October 8th and 10am. Prayers are needed. This is a big one.

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Dr. Rope and the powers that be

I got lucky on Friday. REALLY REALLY lucky when I got a referral to Dr. Rope at Primary Children's. He, and his staff, where fabulous! Simply fabulous. We took Tay with us too. When we got there Bug colored on the table. Literally, on the paper and then on the table. Oh yippee.

They called us in and we gleefully went into the exam room. Bug was not too keen on sitting anywhere. He wanted to roll around on the floor so we let him. Like Madonna.

Several people came in before Dr. Rope and did 'things'...checked his height, his weight, his BP, which was wonderful. And then we talked to Julie. She took his history and our history and pictures of the whole family.Tay liked this, Bug did not. THen she left, we waited and Bug pooped. I mention this, not just for my own perverse pleasure of people knowing that he poops A LOT and I change more diapers than a nursing home CNA, but it has a purpose.

Dr. Rope came in, Bug immediately ran up to him and Dr. Rope picked him up. Bug leaned in to him and Dr. Rope smiled: Friendly guy isn't he? Bug got down and Dr. Rope sat on the table crossed legged. I beamed...I had been doing that the entire time Julie was quizzing us. So, of course, I liked him. He began with the questions about Bug's birth and we naturally progressed to his current status. He had decided, prior to entering the room, that he wouldn't do any chromosome testing and, I think I can safely say, that Glenn and I were NOT gonna allow that so we worked him over. A little. VERY little.

We described all that was going on with the little man. His larger than normal fontanel, the seizures from when the fontanel closed at almost 3 years, the interest in dirt and feces, the no talking, the regression, the type of seizures, the size of his hands and the tall instep, he dismissed the simian line...which is unfortunate because he has it on both hands and it's impressive. When he started adding all the details to the list of signs and symptoms, he changed his mind about the chromosomal analysis. Yea our team.

We could tell that Dr. Rope was VERY interested in Bug. We discussed how he appears COMPLETELY normal until you try to talk to him and how he can catch a falling object. I have seen him knock a cup off the table and catch it mid-air. THIS made Dr. Rope raise an eyebrow. One does NOT expect that type of response in someone who has slow alpha waves. It's pretty unusual. And then there are the fingers. He has broad palms and short fingers. At first Dr. Rope thought it was just his pinkie fingers that where short and then Bug rolled over onto his stomach and placed his hand directly in front of Dr. Rope, who had moved onto the floor, and splayed his fingers out for several seconds. It was perfect. It was at that point that he decided to do the testing.

But first, we need a urine sample. Here we are a week later and we STILL need a urine sample...but I will get it today if I have to duct tape a baggie to his body! After the urine sample we will do the chromosome tests..this will take a very long time and Dr. Rope was hoping to narrow it down first but...that probably isn't gonna happen unless his research leads him to something curious. Of course, I am looking up all the things we discussed so that the next time we meet, we can say: check this first.

Here's where the poop happens: as we finished and Dr. Rope was leaving, Bug pooped. I stopped the Dr. and asked him to add this dirty business to the list. He said: It could be he is constipated and the 'stuff' is just leaking around the blockage. I laughed...and he smiled. I said: OK, how can we test this theory? He got out his notepad and said: Have an X Ray before you go! I said: And if that is normal can we add metabolic or calcium issues to the list? Because when I give him calcium he solidifies more and I only change 2 or 3 a day instead of 6 to 10. He said: If it comes back normal we will add it to the list. Hooray!

So we stopped on the way out and they X Rayed the little pooper. Holy crap that is cool, ask for it and get it. Glenn was peeking and said it looked normal to him so I have to email and find out the results and you know, break out the duct tape and get that urine.

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Defining surpise

>> Saturday, September 19, 2009

Got a call back yesterday from Penny. I am now OFFICIALLY in love with her and she will be on the Christmas list FOREVER. She said that the Doctor thinks his metabolism is fine after looking at this tests, BUT he also believes that he should not be waiting another 6 months to be seen by a geneticist. SO, she called one and they are getting him in..get this..on TUESDAY the 22nd of September. I am excited beyond belief.

He had 3 seizures this morning after 6:00am...so either we got more of the XR in him at night or..well..no idea what just had the 3.

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Defining Frustration

>> Friday, September 18, 2009

Dear heaven above there HAS to be a better way. And NO amount of Health Care Reform will help it.

Bug IS on the waiting list for Genetic testing at Primary Children's. Big freaking whoopee. He has been on it for almost 6 months, and still has several months BEFORE he will get an appointment. One year. An entire year is the waiting time. 12 months. 365 days. At 10 a night....3,650 seizures? Even at ONE a night...365? What does it take?

I called all sorts of Doctor's Offices at the U today. I called Genetics, The Metabolic Clinic, Dr. Van Orman, Endocrinology, and The Hearing Assessment Clinic. I left a message with ALL of them. Penny at the Metabolic Clinic was the ONLY one that actually SAID she would get back to me with our possibilities within 24 hours. I like Penny. I like her a lot. Even IF we are spinning our wheels before the Genetic testing, at least we will know and we can add them to the list when it's done.

ENT called back! Hearing Assessment folks. If I get a referral, Bug can get in the FIRST week of October! Holy Hoo Rah! Now, I just gotta find a referral.

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Didn't I JUST close my eyes?

Bug was tired at 7:30pm. Of course he was, he didn't get much sleep the night before, his sleepless nights do not bode well more often than not and in this case, it was a glimpse into last night. SO, Mom fed him, I gave him his meds at 8:30pm and at 9:00 we headed to bed. At 9:20 I turned off the TV and by 9:25 he was asleep.

9:30 he had a seizure. 9:45, 9:55, 10:00, 10:10 and 10:17. I called no joy and broke out the Diastat. He slept. I slept, until the alarm that some little hands set to go off at 12:00am went off. I turned it off, went to the bathroom and snuggled up to Bug who was sleeping soundly and peacefully and closed my eyes.

I was awakened by another seizure. Shit. Yeah, I am gonna curse and swear when I want because I deserve it. I prayed that it was at LEAST 6:00am. It was close: 5:54. But still: SHIT! I hoped it was a fluke and tried to get back to sleep. It wasn't a fluke. And enter me hating the universe, vowing to do something. ANYTHING, find ANYONE that can help him. He followed it up 6 more times in an hour and half. That's 13 total in a 12 hour period, WITH Diastat.

Currently, he won't eat and he wants to go back to sleep. THIS would be bad. VERY much bad. There has to be an answer, there HAS to be someone that knows what to do. I can't do this: Alter the medication by a few mg here and there, all the while watching his body tighten up every fifteen minutes when all he wants to do is sleep. This completely sucks. It sucks more than anything has ever sucked before in my entire life. I am angry, and I am crushed. I want to protect him and I can't. His brain will not let me. No one can tell me how or why to help him and I am beyond destroyed.

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Of all the luck...

>> Thursday, September 17, 2009

Bug didn't get his meds last night before he fell asleep. Glenn and I were at Tay's back to school night and Nana wasn't sure what to give him. He had 2 before 10 and I gave him his meds when we got home at 10:30. He stayed up, refusing to sleep until about 12:00, up again at 5:00 and seizure at 6:00. Crappy, craptastic. I have no idea where to go from here..I suppose it could be a break through event but who the hell knows?

He is very hyper and not paying attention to anything I say to him. He was starved this morning and when I called him in for breakfast...he didn't come. I told him food was ready and he acted like I was speaking a foreign language. Very frustrating.

Going to check out Kids On The Move today or tomorrow. At least he is happy and smiling and giving lot's of love.

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Awww..thanks.

>> Wednesday, September 16, 2009

Monday, Bug came home from school with a bag full of stuff. The ONE thing that stood out and made me teary-eyed was a handwritten apology from the little boy that bit him. Again, my heart sank thinking about that day but how can anyone hold it against a boy that has special needs. We try our best and hope all works out, most times, it does and sometimes, little boys get bitten. Either way, thanks Max for the apology and all my best!

Bug is 3 nights no seizures. Maybe, just maybe that XR is working. All fingers crossed. He sure is happy.

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XR

>> Tuesday, September 15, 2009

The last two nights we have been giving Bug his new meds: Keppra XR. It was fun to get. Expensive, quite but important. The ONLY problem is he chews them. This is bad. he is NOT supposed to break the capsule. Bummer. BUT we get one in him before he refuses anymore, bitten in half, but half is better than nothing and give him some of the liquid still. It has worked. He has not had ANY events. Not early into sleep and not early in the morning. This is good.

So far, we have renewed hope. Once he learns to swallow them whole he only needs to take two pills at night and the Lamictal during the day. This could be really good.

He is VERY happy the last few days, he smiles A LOT and jabbers like crazy. I won't say HOPT but I do want this to be HIM, I want to be seeing who he is, more and more because I love this little man and the person I have seen the last few days has been amazing. Please, let this be good for him, let this be our little boy coming back.

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One Week

>> Friday, September 4, 2009

A lot happens in a week. This week was no exception.

Saturday, we all went to Lagoon and had fun. Sunday, Bug and I got sick. The kids stayed home from school Monday and Tuesday and on Wednesday, Bug got his stitches out, I was tested, and came up positive for Strep Throat. On Thursday, Daddy went to San Francisco and Bug was diagnosed with Strep Throat. He was given Amoxicillin and we all muddled through the day.

That night, just before bed, Bug puked. The sheets needed to be washed already so it wasn't THAT big of a deal, except...

It takes forever to adjust to a puking child. I don't mean, Mom I don't feel well...vomit. I mean, laughing, playing, spinning something...vomit. Anywhere, anytime for no one knows what reason. It happens every few months, sometimes sooner, and when I mention it to Doctors, they say: Kids do that. Oh really? I have never known a child that pukes that much. EVER. He does do it more when he is phlegmy but how often should that be? If he has THAT much phlegm, maybe he has a bad allergy that the Doctor didn't test for. BTW, I hate back allergy testing, I just don't see the same histamine response as on the arm, yes, you can do more at one time, but I want a more detailed result. I digress...Back to regularly scheduled update.

If he isn't phlegmy all the time, and he isn't, why is he puking? He eats a lot. Yes, he eats a lot ALL the time though, but only pukes every so often. The poor kid has been to so many Doctors over the last 2 months but I'm afraid he needs to go see a few more. We need more answers and he can't tell us.

His meds are working for less and less time. Last night, he had 3 seizures right after bedtime and then two after 6:00am.

He had 200mg Lamictal and 10ml of Keppra before bed. Since the Keppra doesn't really build up in the system, one has to maintain a constant dosage through well spaced ingestion. Because it is passed through the kidneys, saving it for when he REALLY needs it isn't horrible. In fact, he is supposed to have 5ml in the morning and 5ml in the evening...he would seize all night. I need to talk to Shari again. Sigh.

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8 stitches

>> Sunday, August 30, 2009


Because I promised to Blog about this, I had to wait a few days to bring the proper perspective. And it's not what you think. I did not need to calm down, I did not need to center myself and open myself up to peace. I needed to be able to not sound so understanding, I needed to actually NOT be able to to see the other side. But it didn't work, I am that person that sees the other side once in a while, when it is important. Boy, was this important.

On Thursday, Bug got on the bus, happily, and went off to school. Glenn was not feeling well, and wanted to sleep it off, but I heard the trash man and made a mad dash to take the trash out, leaving him to attend to Tay and my family that was visiting. While I was outside, the phone rang and I did not hear it. Then my cell phone rang, and I did not hear it because I was talking to the nice neighbor man about backyards. When Glenn's phone rang he missed answering it and immediately checked the voicemail. It's as he was hanging up from listening to the message that I walked in. He said:

That was Dan Petersen, Bug was attacked on the playground and needs stitches.

What?

A million things ran through my mind, but the first was to go get my baby. I didn't care what I looked like, I got my shoes on, called the school from my phone, got no one that knew but told her to tell 'them' I would be there ASAP and when I went to get Glenn, he was on the phone. He was hearing how a little boy jumped on Bug, pushed him to the ground and BIT HIM ON THE LIP. It was bad enough that they were sure he needed a COUPLE of stitches. OMG! My mind raced and Glenn and I left. I pictured my little boy on the ground screaming, all the while, another little boy was sitting on him biting him. It was my worst fear for him. MY VERY WORST. He is a sweet boy and I have watched him, time and again, get pushed away and he just turns and plays somewhere else. He will not defend himself and is not capable of retribution.

I drove. Glenn rode. Only because I got to the car first, and knew where we were going. As I drove I listened to Glenn say things like: Where were they? How did this happen? They weren't watching. I want to know that this boy will be nowhere that Bug is. I want to know that this is not going happen again, I want this boy at home and I want a different staff to take care of him.

I said: Imagine that the phone call you just received said that Bug had just attacked a little boy and that the little boy needed stitches. Imagine YOU are on the other side of that fence. I would be more upset at that than this.

Glenn diverted with other things and we eventually drove the last part in silence.

When we got there, everyone I had met earlier was with our boy. He was sitting on Drew's lap (Drew is his Physical Therapist) and was smiling. His lip was ripped open on his left side, right on the lip line, and was sticking straight out. And yet, he was smiling. This is Bug. He had scratches on his forehead and under his nose. He looked like he had been attacked by a cat.

Jill, his teacher was there, Mrs. Wong, his principal, was there and someone was saying that this little boy has a history of violence. Oh dear heaven. He has done this type of thing before? I watched Bug kiss the towel with the ice pack in it while Glenn tried to ascertain if it went all the way through. Bug didn't have blood on his teeth so we were pretty sure that it was only on the outside. How did that occur is a mystery since it was so bad, but thank heaven for small things. Really, we didn't care, at that time, the details of what happened and the history surrounding it, we wanted to get Bug to the ER. The ER across the street. So Drew carried him out to the car and we drove to the ER in less than 3 minutes.

We got there, signed him in and the Doctor saw him almost immediately. MUCH better than our last ER trip. The Doctor asked if he would sit still long enough to stitch him. We laughed. Not just no. So they gave him Propofol. Yep, the drug that is being widely reported in the media as being to connected to the death of Michael Jackson. Glenn and I both said: Ah, the Michael Jackson drug. The Doctor thought we might be nervous so he started to explain it's properties. I asked him what the mechanism was and he looked at me and said: They think it's a complete central nervous relaxer, or some thing like that. He did say it is an anti-convulsant too. Cool. No seizures were likely. Whew.

They had a hard time finding a vein and he ended up with an IV in his foot. Ouch. he was such a good boy. Hardly cried at all, just expressed his concern a few times and, of course, I was smacked.

In no time at all they began the Propofol and he drifted off. The Doctor said: Let's get started! He injected a local and when the needle hit the lip, Bug woke up pissed. Doctor said: That's the problem, it wears off quickly. I actually said: AH! That explains the constant IV drip MJ was on. He stopped and looked up at me and said: Exactly! Without it, it would wear off too quickly. I guess I was a little too calm and interested. They gave him more Propofol and we saw his O2 levels going down a bit and I heard: He's going down, he's crashing a little. That's when I got nervous and had to walk away from the gurney. I was still in the room but a little further away. His levels came back up quickly and the Doctor started to stitch...and Bug woke up pissed. Every time that needle went in, Bug would wake up and cry a little. More Propofol and more local. Turns out that Bug needed an adult dose.

The Doctor did an excellent job with the stitches. The edges were clean, not jagged at all and it closed beautifully. I commented as much. The Doctor thanked me and said: we got lucky. Boy did we.

Bug was up and out and about less than 15 minutes after the stitches were finalized. He was a little trooper and everyone said so. EVERYONE there fell in love with him. It was typical Bug.

He is doing well, and the injury seems to not have effected him at all. Although he DID point at his lip last night as he was cuddling with me. I told him: Did you get and owie? He looked at me and then leaned into me. All that trauma, and he still is a sweetheart.

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What a morning!

>> Tuesday, August 25, 2009

Bad me, need to post his first day of school pictures but...

August 23rd
He went three whole nights with no events and then began to cluster. He would sleep, then seize, then sleep, then seize. After 5 events in 30 minutes I gave him the Diastat. He slept well and went to school happy. Mrs. Downs said he was a little withdrawn but interacted more in the classroom than the playhouse. This is good.

Last night, he started to do it again. I did NOT want to give him another Diastat. So I gave him A LOT more Keppra and he had one more and then was done. I will call Shari and tell her about this. It's good and it's not so we will have to see.

BUT..the great part of the morning: Bug has been waking up completely dry for a while now. I haven't managed to get him to the potty before he wets until today. And even better than that, he motioned at his crotch. So, I ran him to the bathroom. He sat on the potty for a bit, tightened his tummy and then...he peed. He peed well. He got some on me and the floor, but that's little boys for ya, and he didn't stop for quite a while. I was so happy I did the potty dance. I used to do it for Tay, now I did it for Bug. It made him laugh and I like it when he laughs.

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Valium knight

>> Monday, August 17, 2009

Haven't been updating, everyone was sick, again. Bug did well, even though he was snotty and miserable. He had at least one event every night for a week and then went 4 night after I modified his medication. I began giving him 100mg Lamictal in the AM, 5ml of Keppra, followed it up with 200mg of Lamictal and 7ml of Keppra. Seemed to be working well until last night.

He took a 3 hour nap on Saturday, which is odd and says: be ready for a change. Sure enough, weird seizures last night one after another. Between 10:30 and 12:00am he had 6. I gave him his meds a little late so I wanted to give them time to kick in, when they didn't I gave him Diastat.

He was so jittery and angry after these events. He was constantly slapping himself until he fell asleep, then he would have one and cry. It was the worst. The Diastat brought him some relief but I hate how frequently we are having to administer it. Need to call Shari and see what we can do.

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Long night, bad morning

>> Wednesday, August 5, 2009

Got stuck up at Mom's for the night, I ate something that really hated me. Bug and Tay had played REALLY hard at the McDonalds and I figured they would crash early. At 8:30pm, they were bouncing off the walls so at 9:00 Mom and I turned off the lights and the TV and they were asleep within 10 minutes.

I,however, listened for the inevitable. It didn't come before I fell asleep at 10. I awoke at 12:03 because Bug climbed in bed with me. He tossed and turned and sat up and just couldn't get all the wiggles out. He woke me up at 1:20, at 2:30, 3:00 and 3:30. Then at 4:00 he had his first 15 second T/C. He immeidately fell back a sleep. At 4:30, 5:00, 5:25 and 6:00 he had small events. After the last one, he decided to be awake. I say he decided because I watched him fight it.

He crawled on me and hugged me and tried to play with my glasses. He walked around the room and then layed down, then, he would start to nod off and jump back up. After 25 minutes I gave in and got up with him. It was a rough night. A really rough night, but he is happy and playful and doesn't show any signs of being sleep deprived. I wish I was the same.

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Numb

>> Monday, August 3, 2009

I wonder when I will hit that point where I am numb to his feces eating, wiping, playing and just see the child that does not have the ability to control it. When will I look at that mess and just sigh and put him in the shower? Because I still cry. I still look at him and cringe with disgust when I see that all over his face. I picture him at 15 doing the same thing, and then, I can't do anything about it if he won't let me clean him. Right now, I have to FORCE him into the shower. He will sit in it for hours, gleefully dipping his hand in when the paint material wears off. Chirping his delight that he is happy and playing with something that he made. When will I stop crying?

I took it upon myself to up his dosage of Keppra. It's not insane since he is still on a really low dose. He got 5ml in the morning and 5ml at night. He only had one at 7am so I think he is still burning through it too quickly. I will call Shari in a few days once we get a consistent dosage build up and see where he is. Sigh. Again. Sigh.

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August 1, 2009

>> Saturday, August 1, 2009

I managed to get Bug his medications at 9:00pm, and half hour later he was asleep. I thought he was doing well, until 10:45 when he had a 15 seconds T/C. He fell back asleep and slept soundly, until 4:20am when he awoke for the day.

Or so HE thought.

Glenn and I were not having it. I took away all his toys, forced him to lay down and gave him a Unisom. One. I may not have needed to because after hiding the toys, he was quiet immediately and asleep in half an hour. There really is 'something' and by something I mean, hair pulling, nail grating, what is that noise? annoying about that motor boat sound at 4:30 in the morning. And while motor boat sounds is a very good thing from a speech standpoint...he was lucky.

We thought he was gonna have more seizures after that. Being up and running around like that at 4:00 am is a sure sign that his brain is hyper and he did. Two more, each about 15 seconds and he recovered quickly. Went back to sleep. He awoke at 8:15 smiling.

At the moment, he hates everything. I think he is still tired from the Unisom but he is sick again so who knows? I just hope he stops slapping me for no reason.

Lamictal AM 125mg
Keppra AM 4ml

Lamictal PM 175mg
Keppra PM 4ml

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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

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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.

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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.

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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.

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July 28, 2009

Oy.

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.

UPDATE:
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.

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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.

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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.

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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.

AM
Lamictal - 100mg
Keppra - 2.5ml

PM - 175mg
Keppra - 2.5ml

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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.

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Ugh

>> 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.

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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

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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.

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24

>> 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...

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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?

Happiness.

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.

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July 8, 2009

>> Wednesday, July 8, 2009

Awake
8:30am

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

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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.

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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

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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.

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Morning Update - July 1, 2009

>> Wednesday, July 1, 2009

Awake
8:00

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.

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Morning Update - June 30, 2009

>> Tuesday, June 30, 2009

Awake
8:35

What a night for the poor kid. I think the Melatonin kicks off some of the clusters. He hasn't had a nightful of seizures for weeks until last night, until the 5mg of Melatonin.

He was VERY cuddly and somewhat annoyingly agressive about it all day. It was cute, mostly. He was pretty calm, played with his sister and by himself and gave no indication of the night to come.

I kept to the regime and gave him 175mg before bedtime and he was having a hard time shutting down. I will put him in a dark room and lay down with him when he is like this, Glenn decided to help and gave him 5mg of Melatonin.

Melatonin can cause vivid dreams. Safe to conclude that means more brainwave activity and since he has abnormal sleep patterns on the EEG, it's not a jump to make an assumption about the Melatonin causing the fitful sleep.

At 11:30 he had his first. Straight arm, weak moan, lasted less than 10 seconds. It was so fast, Glenn didn't see it, just the aftermath.

And 12:45 he had another, then 2:30, then 5:30, 7:00, 7:30, 8:00 and 8:30.

All of them lasted less than 15 seconds, but having that many felt like forever. Glenn agrees: No more Melatonin.

He is alert and energetic. Breakfast was small but it'll pick up.

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Updates

>> Monday, June 29, 2009

The last few days were crazy busy...and I have yet another sinus infection, bad one too. Gratefully, Bug and I will be going to an allergy Doctor on Thursday. I am hoping to be able to give him some relief from his congestion and maybe find out if he has a food allergy as well.

He has been having multiple small events nightly. We changed his medication back to 150 at night(accidently Daddy) and he will usually have no events until the morning. I gave him 100 this morning and he will get 175 tonight and we will see if he burns through it before morning.

I will be taking him to get his blood tests to verify that the dosage is correct and that his liver is tolerating it well. He is a healthy, active little guy so I imagine all is well, but we have to make sure.

He is being very vocal and playing independently. He will seek out Taylor once every so often and chase her for a while giggling like a mad man.

He got a haircut on Saturday and did pretty well. He wasn't screaming and kicking so I guess we can say it was great. He is strikingly handsome with his hair short. Cutting off his golden locks is tough sometimes, his hair is so beautiful, but the buzz cut..oh my, does it get attention.

Glenn went to the Gun Show and took Bug to Hooters after(yeah, Hooters, it IS a family restaurant after all) and evidently, our little boy was a big hit. Glenn said the waitresses were fawning over him. Yeah, it happens. And happening at Hooters...that's just a smart play on Glenn's part. Everyone is happy about the attention. Besides, Bug does like chicken wings.

June 29, 2009
Awake
8:15am

Bug had three events this morning. Two that were questionable. I heard a load moan and by the time I sat up he was looking at me and fading off to sleep. The last one was unmistakable, small scream, rigid, non-blinking, less than 15 seconds. After the last one, at 8:10, he walked over to me and cuddled for almost 20 minutes. I could see he was debating going back to sleep, but he fought it off and stayed awake.

He hasn't eaten much. Yet. But I am sure lunch will be hearty.

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Morning Update - June 25, 2009

>> Thursday, June 25, 2009

Awake
7:40?
Hard to tell for sure we were in the car taking Glenn to the airport.

NO events.

Bug slept SO soundly and, therefore, I slept soundly. It felt great until 6:30 rolled into play.

He hasn't eaten as much as he usually does. He is happy and looking at his Dora book quietly. Nice change from yesterday's Mommy mauling.

I like how well he slept on the 175 at night. I will continue this for a bit and see if we can get a good pattern going.

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EOD Rundown

Awake
8:15

Today was a hyperactive day filled with LOT'S of demands for cuddles. I dare say, if I could have medicated some of the energy away, I might jsut have. He would sit on my lap and shake me. Where did that come from and why is he doing it? I have no clue, but it hurts. He smiles and hugs once the shaking is done. Wish I could figure this out and divert him from it.

Bedtime
9:30, 10:15, 10:45 (he woke up a few times)

100mg Lamictal AM
175mg Lamictal PM

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Morning Update June 24, 2009

>> Wednesday, June 24, 2009

Awake
8:15 (not bad)

Bug had ONE event last night. At 11:30 he had a 15 second seizure where he was rigid and yet trying to move his arms and legs. THESE kill me. He struggles against them so much. When it was over, he got up and crawled on my lap and clung to me. REALLY clung to me. I almost cried.

When he awoke he was very energetic and still is. He woke me up by shaking me and then when I didn't move he fell onto one knee that was planted in the small of my back. He weighs almost 60 pounds. Ya, I'm sore and it didn't work. So there.

Even though he has problems with comprehension, the toilet, social boundaries and a list of other things, he needs to learn how NOT to act when people have their eyes closed. He has his moments, when he just watches us sleep, and sometimes it's creepy factor is ginormous. I wonder what he is thinking. I imagine it's something like: If you don't get up and feed me I will kill you.

Glenn woke up when his alarm went off and Bug ran off to follow him. Tay came over to canoodle with me and we tried to get a bit more sleep. Glenn got in and out of the shower, got dressed and snuck out of the house. I resented this.

Bug ate all of his food and some of his sister's. He is all over the place today and I am going to try to get the dishes done and the house somewhat cleaned. Of course I will have to lock him somewhere in order to accomplish this great feat. Or I can just follow behind him picking things up and putting them in their non-appropriate place but out of his reach all the same. And after he climbs up to get it and knocks over all the REALLY important things, like Grandpa Glenn's Transit, then I will throw my hands up, swear a lot, send Taylor over to the neighbors, and go dye my hair. With Bug trapped in my room while I do it. Venting over. Day really beings.

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June 23, 2009

>> Tuesday, June 23, 2009

We had a funeral to go to today and so my posts are not as frequent but to get caught up:

Bug had NO EVENTS last night, I took it upon myself to up his meds a little. His clusters where more concerning than the amount given that the Doc thinks he can have a bit more. And since he was metabolizing it so well. It was nice to hear him sleep so soundly again.

We are home now and he has had the same amount as yesterday:

125mg Lamictal AM
175mg Lamictal PM

Tomorrow I will try 100mg in the AM and 175mg in the PM so that we can try to keep him under 300. The smaller the amount to prevent seizure the better for him in the long run. The older he gets, the more he will need, most likely, and we want to try to keep it as low as possible.

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Morning Update - June 22, 2009

>> Monday, June 22, 2009

Awake
8:10AM

Bug had 5 events starting at 4:00am. All were minor, less than 15 seconds. Rigid, trying to talk.

Woke up smiling and cuddly, was very careful not to wake up Daddy and cuddled with me for a half hour before Daddy took him into the kitchen.

He is quite hyper and will not leave the TV alone when SpongeBob is on. It is causing great consternation with Tay. And giving me a headache listening to her scream. Oy.

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Morning Update - June 21, 2009

>> Sunday, June 21, 2009

A little late but hey, it's Father's Day.

Awake
8:10am

One additional event around 5:00am or so, lasted only a few seconds didn't have time to verify type.

Ate very well. Couldn't get breakfast to him fast enough. Had to pin him in his chair to keep him out of the sink and cupboards.

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EOD Rundown

>> Saturday, June 20, 2009

Awake
8:45

Bug was darling all day. Very vocal and playful. He had distinct facial expressions that tied into how he was feeling or what he was doing at the time.

He played with everyone and stole cuddles and kisses as well. I was pretty sure he said Do Dora (singing the Dora The Explorer song while holding the Dora book). Mom heard it too.

Bedtime
9:45

Seizure at 10:10 was less than 40 seconds, rigid, hard swallowing and tried to fight it. Came out of it quickly and sat on Papa. Should he have ONE more seizure tonight he will get Diastat no matter what time.

125mg Lamictal AM
150mg Lamictal PM

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Morning Update - June 20, 2009

Bug is not awake at the moment which is a bad thing. He has been clustering since a little before sun up and I lost count at 6. They are minor events, as far as his seizures go, so we did not administer Diastat. The severity plus the fact that he would be awake and out of the seizures at any moment delayed that. He was not completely rigid during all of them and he was somewaht verbal, most were under 10 seconds but two or three were longer than 20. It is 8:13 and if he is not awake in a half hour...

We made the wrong call last night. Even though he did not have anymore until around 5am, we still should have seen this probability and given him the Diastat.

It's difficult to know for sure, of course, and it wears off pretty quickly for him now. Diastat used to give him relief for 10 hours but now if he sleeps for 6 after receiving it we are lucky. I will not hesitate again.

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EOD Rundown

Awake
6:30am

Bug was amazing today. He was so calm and cheerful. He carried a Dora The Explorer Book around all day and would open it, turn the pages and laugh. He laughed so much it made Mom and I giggle all day. It was amazing considering the night he had.

He was very verbal and has taken to pulling out the air registers and sticking his hands and feet into the vent. Luckily, or gratefully :), he hasn't been putting toys and food into them.

He went shopping with us and was content to hold my hand and walk instead of tugging on me to go. We took him to the shoe department and he sat quietly on the floor giggling at his book. I was VERY concerned about him all day.

Bedtime
10:30pm

Seizure at 10:40 followed by another at 11:10. We got the Diastat ready but decided to wait until he had one more. He had only had his nighttime meds an hour earlier so we are giving him a little time for it to hit full strength. Both of them were pretty mild and Mom said the last one was less than 15 seconds. Both were over by the time I got to him so they must have been less than 30 seconds each. Not looking forward to tonight. I will sleep with the dispenser nearby just in case.

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Morning Update - June 19, 2009

>> Friday, June 19, 2009

Awake
6:30am

Bug had is first event at 11:30. He slept well until 4:20 when he had another, followed up at 4:50, 5:20, 5:50 and 6:20 by seizures. He awoke with a jerk and then remained rigid throughout the 10-20 second seizure. He was vocal and appeared angry about them. He woke up after the last one and stayed up.

He has been VERY vocal. making new sounds and saying Dada more than Mama. While this is exciting I am disheartened.

He had pizza, late last night along with several fairly high sodium foods, we will be more careful and I will find a Doctor that can investigate his apparent digestive issues. Bug hardly EVER has solid stools and that whole vomiting when he is sick or going through a growth spurt should be investigated.

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Morning Update - June 18, 2009

>> Thursday, June 18, 2009

Awake
8:10

NO Events.

He slept well, we slept well, I can't remember the last time we all slept so well. It's very nice.

Bug woke up smiling. He reached out to Daddy, touched his hand but let him sleep. He patted Tay on the back but let her sleep. He sat next to Glenn for 20 minutes, reaching out to his face and then pulling his hand back. He would not come to me until I left the room.

At the moment, he is playing with his Doodle Pro...viciously.

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EOD Rundown

Awake
8:10

Bug was energetic but not hyper. Very playful but not pushy.

He was with Daddy on his computer and was responding to the music Dad was playing. Glenn would stop the music and Bug would grab his hand and guide him to how he thought the music should start again. Glenn would start it and then stop it a little bit later. After several times, Glenn went to play darts and left the music playing. Bug came out and danced a little, not like he used to but was definitely dancing. The music stopped. Bug went back into the office and Glenn heard him try to start the music. After a few attempts, Glenn went in to help, showed him how to do it and went back to play darts. Bug came out and danced again and when the music stopped, promptly went into the office and started it again without help. This is a good sign that he is able to retain information again! Wee Hoo!

Bug ate A LOT today. Can't even detail it he never stopped it seemed.

He is still not feeling well and his cough sounds bad but productive.

Bedtime
10:30

125mg Lamictal AM
150mg Lamictal PM

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The prescription confusion

>> Wednesday, June 17, 2009

I went to pick up Bug's prescription from Dr. Van Orman and the pharmacy said: We have a problem.

I shouldn't have but I immediately got my back up and braced for a fight.

She said: 9 pills twice a day?

If that is how he wrote it.

But, your insurance says I can't.

Why?

It's not a pediatric dosage.

So we figured it out. 18 x 25 = 450

No wonder they wouldn't. I told her that we were at 275 not 450 so I thought we should call to verify. And she did.

I got a call this AM from Dr. Van Orman's office asking if I understood the instructions. I giggled. I understand that he gets no more than 275 a day, which he has been on for 4 days with no events. She said she spoke to the Dr. and that 9 pills 2 times a day was the highest he would go but for now, the 275 is the cap. She asked if we were building up to it or jumped to it. I told her that he had mentioned if the patient doesn't have an issue by 150 then he/she most likely will not. So, we did it and he has been seizure free since.

We got it worked out. It's these little things ya know? Little things that are so important.

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Morning Update - June 17, 2009

Awake 8:10

NO events.

Bug woke up around 6am and went back to sleep.

He was starved when he got into the kitchen and began scrounging immediately. I fed him noodles and chips (don't judge he LOVES dinner for breakfast) and Mom gave him two bowls of cereal when she got up.

He was brought upstairs by Daddy with his latest snack: feces. I put him in the shower and cleaned him up. Mom wiped down the Tricycle and we began the house search for more stool samples. Sigh.

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EOD Rundown

Awake 4:45 or so

Bug was very energetic and amazingly talkative, a few things we could understand like Mommy and not Mama. He played with his sister a lot, when she was home and seemed to tolerate her constant kissing him the last half of the evening. He loves his sister and it shows.

He ate a lot and because of it, puked right before bedtime. He would not go to sleep and now we know why: he was feeling yuckie.

I put him in the bathtub at 10:30 to clean him up and calm him down. Once he was done, he walked into Nana, climbed up on her and fell asleep.

Bedtime 11:00pm

125mg Lamictal AM
150mg Lamictal PM
50mg Lamictal after throwing up the majority of his 150mg

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Morning Update - June 16, 2009

>> Tuesday, June 16, 2009

Wake Up
4:47 (What's that about? <> Sometimes it happens.)

NO events. :)

Bug woke up earlier than usual and tossed and turned to go back to sleep. He was unsuccessful. I gave him 10mg of Melatonin to try to help since he wouldn't leave Daddy alone (he kept grabbing his face and resting his legs on his back). Didn't work this time.

He laid still for small periods of time, allowing Glenn to get back to sleep but I could hear him rustling so no go for me. Got up with him for good at 5:57.

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EOD Rundown

>> Monday, June 15, 2009

Awake at 9:15

Bug was cute as a button today until....I took him out with Mom and I. He proceeded to voice his displeasure about shopping by smacking me. A lot. He screamed and cried and slapped my hands, my chest and my face. He was pissed. He has NOT acted like this for a long time. In fact, the last time I gave him Benadryl now that I think about it. I gave him some before we left to help dry his nose up since he is still a little sick. Since he kept going to the garage and sitting in my car or grabbing me by the hand and taking me to the door, I thought he would like to get out. He loved the car ride, did not love the Sam's Club. I felt badly.

Aside from the aggression, once he got home Mom reported he was back to being cute as a button. Very cuddly, very sweet and smiley.

Bedtime 10:05

2tsp Benadryl 2pm

125mg Lamictal AM
150mg Lamictal PM

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Morning Update - June 15, 2009

NO events! Dare I get excited? Too late...I am.

Bug woke up at 6:00am looking totally scared and crying. This is the FIRST time that Glenn and I remember him waking up like that. It was very apparently a dream. Dreaming is good. Bad dreams are better. It shows he is storing information and developing scenerios based on them. Of course, we comforted him and he went back to sleep.

Awake at 9:15

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EOD Rundown

>> Sunday, June 14, 2009

Wake Up: 7:02

Today was an energetic, happy day. Bug was all over the place and he was hungry. He ate 4 meals and snacked a little.

Nana and Papa came down and he was very excited! They both commented on his verbalization's. Many new sounds. However, EVERYTHING was MaMa MaMa today. Glenn thought he said: I love you Mom but I missed it. Darn it. Showed him a large SpongeBob pillow and tried to encourage him to say SpongeBob...he walked away. Oh well.

video

VERY playful, running after people and laughing, taking off his diaper and running away laughing, stole food from Tay and laughed. He kept grabbing my arm and tugging, then he moved on to putting his feet on my arm and pushing. All the while, laughing and even snorting at one point. He's very strong, my shoulder hurts.

Still congested but drying up. No events as of posting.

Bedtime 10:00pm (so excited about the folks visiting)

125mg Lamictal AM
150mg Lamictal PM

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Morning Update - June 14, 2009

Bedtime
11:30 (That darn nap earlier)

NO events! (new 30 day record)

Bug is still sick. Before he fell asleep he threw up. It had been almost 2 hours since his medication, no way to know how much he had digested before he puked so we gave him another 50mg just to be sure.

Woke up at 3am, cuddled with Dad, needed a diaper change, went back to sleep with Mom until 7:02am

Glenn reports that Bug said 'I love you' this morning.

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Morning Update - June 13, 2009

>> Saturday, June 13, 2009

Bedtime
10:30pm

Glenn had no events last night. He first awoke at 5:30am and began to play. I told him to lay down and after a few minutes, came over to me, curled up next to me and fell soundly back asleep. I could feel him breathing deeply nestled into the crook of my arm, he was cold and I pulled the blanket up on him. He slept until 9:00am.

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EOD Rundown

>> Friday, June 12, 2009

Bug was still sick, very congested, no fever. He was extremely Daddy oriented and ate very little. Anytime I would make him something to eat he would pick at it but there would be food left over. Must be the illness. Oddly, none of us are as sick as he is. Curious he gets the worst of everything we pass around. Add that to the list of things to check: Immunology.

No idea how much Lmaictal he had total. Glenn gave it to him.

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Backgound activity

Bug's Doctor's, Van Orman and Vincent have both commented on his background activity on his EEG's. While we were hoping the medication would help this, it appears to not be the case. Although, at a non-therapeutic level we have seen some very positive behaviors. We can expect better things from higher levels but we will not set our hopes too high. We will just enjoy what we have.

The background activity which was 'very unfortunate to see' is so because of what it usually means. The first thing Doctors usually run to is encephalopathy. The very best description I have found for encephalopathy is from the National Institute of Neurological Disorders and Strokes:

"Encephalopathy is a term for any diffuse disease of the brain that alters brain function or structure. Encephalopathy may be caused by infectious agent (bacteria, virus, or prion), metabolic or mitochondrial dysfunction, brain tumor or increased pressure in the skull, prolonged exposure to toxic elements (including solvents, drugs, radiation, paints, industrial chemicals, and certain metals), chronic progressive trauma, poor nutrition, or lack of oxygen or blood flow to the brain. The hallmark of encephalopathy is an altered mental state. Depending on the type and severity of encephalopathy, common neurological symptoms are progressive loss of memory and cognitive ability, subtle personality changes, inability to concentrate, lethargy, and progressive loss of consciousness. Other neurological symptoms may include myoclonus (involuntary twitching of a muscle or group of muscles), nystagmus (rapid, involuntary eye movement), tremor, muscle atrophy and weakness, dementia, seizures, and loss of ability to swallow or speak. Blood tests, spinal fluid examination, imaging studies, electroencephalograms, and similar diagnostic studies may be used to differentiate the various causes of encephalopathy."

I will be discussing what he really thinks it is once he has the chance to study it more closely and I will run it by Dr. Vincent as well. We have to get this right. I am focused on helping him once I know what his capabilities truly are. No sense in pushing him too hard if he is functionally not capable of comprehending what I want from him. Doesn't mean we won't try.

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Morning Update - June 12, 2009

Bug had one event immediately prior to the medication, according to Glenn. It was less than 20 seconds, rigid and fell asleep again promptly after.

No more events throughout the night.

He awoke at 8:30 still congested, no fever and smiling.

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EOD Rundown

>> Thursday, June 11, 2009

Craptastic night and morning, won't even think about sleep patterns today.

Bug is still sick, his fever is almost gone and he is a little calm. He follows Daddy everywhere and just sits by him. He does say Mama, Dada and SpongeBob as well as some intersting sentences that Glenn and I joke about their meaning.

We upped his medication tonight. I don't know the dosage, Glenn gave him his meds.

Bedtime 10:30
No events yet.

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The Doctor Visit

I walked to the desk and told the nurse I was here without my son because he was too sick. I had called earlier but Dr. Van Orman was so busy he got the message as I was walking in. There is NO cell phone coverage in the Neurology Department at Primary Children's so it went to voice mail and we were both stuck with each other.

Dr. Van Orman knows his stuff. I simply adore that he listens to me and addresses everything I say as if it was the most important thing he had heard that day. If I am misguided, he gently validates me and then corrects my line of thinking. I enjoy talking to him, I don't know that he feels the same about me, but he seems to pay attention.

I told him that Bug was very sick and we had gone to the ER. He was concerned but I told him what it wasn't and that the Doctor had witnessed a seizure. He smiled. I admitted: It pleases me to get that corroboration. Unfortunate as it is. He agreed and asked how bad it was. I told him that they are not more than 20 seconds, but multiples a night. I told him, we love the Lamictal but just want the seizures to stop. I told him that Bug was saying words we had never heard before. He raised an eyebrow and said: That's great! Something clicked in my brain when he said that, and I asked about his EEG.

Dr. Van Orman had only looked at his EEG for a few minutes. He saw one of the seizures and confirmed: Generalized Seizure Disorder. This diagnosis means: NO root cause or syndrome present. His little brain just reboots all at once. It has no central point. Not a shock. He also confirmed that Bug has underdeveloped and quite slow background waves. Although also not a shock, I was hoping something had changed. I did not want to hear that. But it is better than a lot of alternatives so I went with the positive side. He MAY be slow but he is making progress. The one statement that keeps playing over in my ears is: It's very unfortunate to see.

I queried as to why he is so hyper, we he can't concentrate, why he has fallen down the stairs because he was too excited to pay attention and we were both at a loss for an answer. I asked if any of his patients had every commented on barometric pressure changes increasing the frequency of events. Not only have we seen a small increase when the weather changes, we had also seen differences in seizure types when we would be in Utah or Idaho. He had heard of elevation changes having an effect but no one had ever said when it rains it's worse. He did agree that they would be virtually the same as far as impact. I have heard several people say that when it rains they expect more events. He mentioned that with some of the special needs kids that when they are constipated the frequency increases. This SCREAM metabolic disorder to me, but I'm not a doctor. :)

We decided to take his medication up since he was responding so well. He had his blood draw about 4 weeks ago when he was on 100mg a day. He had 50mg at 10am and by 3pm his blood level was 4. THIS is not a therapeutic dosage. He felt confident that upping the medication to 250mg or even 275mg would get him to the level he needed. I was a little stunned and said so. The research I have seen said that 200mg a day should be the cap for pediatric patients. He reminded me how well Bug is breaking it down, I laughed, this is true, why am I worried? His little body has ALWAYS been exceptional at clearing medications. So he gave me a prescription for more Lamictal, told me that he would be going over his EEG in more detail as soon as possible and would call me about the findings and off I went.

On the way out, he apologized for not getting in touch with me. He said: We could have had this conversation on the phone. I laughed and told him: Yes we could have but it's nice for me to able to talk to big people face to face once in a while.

I walked down that familiar hallway, looking at the faces around me, wondering if they could see the fear and the uncertainty in my eyes. I noticed the long line in the pharmacy and felt miserable for being so self centered. Most of the people there have faced more intense things than I had, they had wept in their child's hospital room too, they had wondered Why? We are united in our struggles, similar in our foundations, nothing is as important as watching out for the well being of our children. And Glenn and I are blessed. Our boy is happy, he is sweet, he is responding to the medication and he is stunningly beautiful. He may not be like other boys his age, but that may be a good thing, a very good thing if you know anything about 6 year old boys.

So my next step is to get some genetic testing done, secure a copy of his EEG (which I did the day of his appointment, I just need to go pick it up) and research how I can help his background be more colorful. But mostly, I just need to be patient and diligent and keep loving him unconditionally. If you have met him, you know that's not hard to do.

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What a Seizure looks like (Graphic Content Included)

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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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