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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A long night

Bug went to bed last night congested, coughing but otherwise fine. At 2am, Glenn and I heard his breathing change. It was shallow and very rapid. He was panting. We checked his temperature, 102.6 and he was shivering uncontrollably. Usually, that's a good indicator that the rapid onset of the fever is only beginning and it is working on getting higher. We gave him some medication and decided to take him to the ER, with the Swine Flu in its second round in Utah, we wanted to be safe.

As we were getting him dressed, he threw up the medication. THAT cemented his need for an ER trip. If we couldn't medicate him to bring the fever down, it could be very bad.

So, we grabbed Tay and headed to Alta View in Sandy. He slept, she slept. Then we arrived and they BOTH woke up with a vengeance.

Bug started to heave again so they rushed him to a room with pink plastic bucket in hand. I walked in with Tay just as he had finished. My first words: Awww, look how pale he is.

Glenn said: He just puked again.

The nurses looked concerned and I reassured them his stomach was fine, he was vomiting because he was gagging on mucus. It happens a lot when he first gets congested. Of course, no one believed me, I'm just the Mom, I only have spent EVERYDAY of his life with him. They gave him some meds to calm his stomach (even though his stomach is FINE) and we proceeded to detail all about his sickness and his Epilepsy.

It is important to know as much as possible about the Epilepsy our child has, we can help the medical personnel define his course of treatment. I have a folder with almost ALL his medical documents in it. It is in our bedroom by our bed in case we have to grab it and run.

The nurse entered all his info into the computer and we waited. We only waited about 5 minutes before the Doctor came in. I liked her immediately. She had a manner about her that projected: I am a part of this and I am in control, tell me how I can help. It may seem odd to sum up a Doctor in such a short amount of time, but, they are people first in my eyes, and their body language, the way they look at a person and how they respond to your concerns shows their humanity. If their humanity is as developed as their Medical Doctorate then they, most often, are great Doctors. I digress.

Doctor came in and told us that they would be running an IV, not just in case he needed fluids but to help cool him off. They would take a few vials of blood, give him some Tylenol and swab for Influenza. OK, cool.

We did tell them he would NOT like the IV and be prepared for a bit of a battle. So she called for back-up. As soon as she called for someone to hold him, Glenn and I both told her: Oh you won't need that, we can hold him, we just wanted you to know not to be shy.

At that, I climbed up on the bed/gurney, sat on his legs and leaned over his chest with my right hand holding his left elbow to keep his arm straight. Glenn held his right arm and chest. Bug looked completely unfazed by this. And she started to look for a vein. And kept looking, looked a while longer and declared: I'll try this one. Did not fill us with happy feelings. In fact, Glenn asked her if she needed to look at the other arm. She ignored him. He asked if she was sure. She ignored him. I looked at him, he looked at me and another nurse told her to use the back of his hand instead.

The first poke made him flinch, but it was the pushing through the vein that made him cry. They put another catheter in above the first one. And he was greatly pissed off at this one but we held him and talked to him and he was really good about it actually. He even smiled once or twice.

They got the IV in, took three vials of blood and gave him the Tylenol...he was throwing up remember? Had to go south for the delivery method on that one.

While we were waiting for the results, I crawled in bed with him and we snuggled. I love snuggling with the child...he puts his arm around me and whenever he looks up, he grins and touches my face. He didn't do that this time though, he pulled my arm around him and fell asleep. It was nice, until my arm fell asleep.

Glenn went out to move the car since we aren't physicians and it was turning light out. At about 5:30 the Doctor came in. No Flu she declared, BUT they were sending his blood out for more tests. His white cell count was down indicating this was viral and his chest X-Ray should no pneumonia. She told me this was her first night since November that she didn't have a pneumonia case. And she thanked us for that. I had to grin. I listened to her, took in everything she said especially the no holds barred give him any drink he wants to keep him hydrated speech. About half way through he started to lock up. I said: Op, seizure. In the time it took her to turn around I was by his side. His face was buried in the pillow and so I gently pushed the pillow away and moved him a little bit, reassuring him it would be over soon and he was OK. As the seizure released it's grip, I notice Glenn was by me now. We both kissed him and held his hand and the Doctor said: Yep, I'll give you that one, that was a seizure. They really never believe until they see it for themselves.

She gave us a Phenergan suppository and cautioned us on its use. It seems it can lower the seizure threshold. Oh goodie. I assured her that we would be hesitant in its usage. She said: I would normally be concerned but I have seen that you know what you are doing when he does have seizures so I will just say we will call you if his blood results are weird.

With that she wished us a good day and good luck with his seizures and left us. I liked her a lot. I don't say that about many Doctors.

They came and removed his IV and we took him home, stopping for a Slurpee at the local 7 Eleven.

Glenn, Tay and I were exhausted. Taylor had refused to sleep while we where in the ER, she insisted on Daddy explaining everything. It was good to see and she was fabulous the whole time. The staff commented on how cute the kids are and wished us the best for Bug. It was, by far, the best ER run I have ever experienced. As soon as we got home we all slept. Glenn and I were concerned that, since the sun was up, we may have sleepless children but that was not the case. They both slept for a few hours.

Bug had one more seizure at 11:00am and after that, we were awake for the day. He was supposed to go to see Dr. Van Orman at Primary Children's but without a real diagnosis and still running a fever, we opted to keep him from the other children (some of which would NOT do as well as Bug did) and I went alone. I had his chart in hand as I walked into the office, tired but ready for some answers...

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EOD Rundown

>> Wednesday, June 10, 2009

Wake - Up
6:50am

Bug was fairly docile today, mostly because he was sick. I watched him progress as the day wore on. Congestion, cough, runny nose. We will keep a close eye on this as he can not actually tell us how he feels, we have to watch him for any small change.

He was my little buddy today. I held him quite a bit and he just laid beside me. he did enjoy the car ride to get Dad. He was thrilled to see Glenn and smiled anytime their eyes met.

He did not eat much lunch or dinner.

Bedtime
10:30 (Picked up Daddy from the airport)

75mg Lamictal AM
100mg Lamictal PM

2tsp Tylenol Cold and Flu

No events as yet.

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Understanding

I find that when most people hear: He has seizures. The first thing they ask is: Does he have Epilepsy?

Simply put, Epilepsy is the occurrence of more than one episode. People get caught up on the Epilepsy label when really, the label is an umbrella term for a lot of different neurological events. Any Doctor will call it Epilepsy if the patient, or in our case, the patients advocate, declares that more than one event has occurred.

People talk about a 'Diagnosis of Epilepsy', but, that is the easy part. Finding out the TYPE of Epilepsy is the same dog, different spots. With Epilepsy, the spots spell out the breed. The location of the spots, how dark they are, or how light they are, all tell where, in the brain, is the epicenter for the seizure

Bug's spots were never seen before this last EEG. His Epilepsy is curious, he has had EVERY type of seizures that a person can have. He has NO known triggers, there is NO family history. He has fabulous bilateral strength and motion. He can use his right or his left hand. He runs well and can kick a ball while doing it. He has the balance and reflexes of a fighter pilot. One CAN NOT get the child dizzy. He has spun in a circle for as long as I can remember and yet, I have never seen him dizzy. Neurologically, aside from the seizures and lack of speech, he is exceptional.

AND yet, he has NO sense of ICKIE. Things that would gross most people out...Bug will eat if we let him. He is pretty.

It was the notice of how lovely he is that made more than a couple Doctor's think Fragile X. This is one that would not really surprise me but it would be atypical given his symptoms. For the most part, all known types of Epilepsy are atypical in Bug. With as profound as his events are, he has no outward appearance of any type of neurological impairment. This is the hardest part. He looks completely perfect, but he isn't exactly.

Because of his physical appearances, getting those seizures on EEG were the most important thing that we could have captured. And that makes tomorrow...nerve-wracking! Downright sick-to-my-stomach nerves. Tomorrow, we may have the understanding of what is happening with him, or at least what part of his brain is overreacting or malfunctioning. If not, we go back to blood work and genetic screening and over analyzing his almost perfect simian line on both hands. No one else in the family has that. Makes him super special.

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Morning Update - June 10, 2009

Following his 10:10 seizure were 4 more events, all similar to the first one.

At 11:20, 4:40, 6:02 and 6:20 Bug had 20 ssecond seizures. Rigid, had some control and verbalizations. No blinking.

Woke at 6:50 for the day.

I noticed after the 4:40 seizure that Bug was congested. This morning he is coughing and has a runny nose. Additional medications will be given to him throughout the day as warranted. Still, he is smiling and cuddly. He was very careful to not wake Taylor or myself up once he was up and roaming around.

He is VERY verbal this morning.

I didn't feed him soon enough and he decided to eat whatever he could find, which at the time, was only what he had made. Turns out I was too slow changing the diaper too. One shower down. And a dry heave for Mom.

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EOD Rundown

>> Tuesday, June 9, 2009

Wake Up
7:15

Today Bug was playful. Taylor and Cassie were watching a movie and Bug kept trying to give Cassie loves and kisses. He would run after them, surprise them and then laugh.

He had 3 meals and various snacks including pretzels that he got himself. He ould not use the utensils.

5 soiled diapers, one shower and one bath. Spun a necklace whenever he could all day.

Not as aggressive about attention but still very attentive. He would lay next to me and then sneak up on me and give kisses. Very cute. Still needed to be calmed down and got upset and slapped himself. I tried to calm him and he would head butt me.

Bedtime
Fell asleep at the table after a late dinner. 9:30 moved to couch. 10:10 partial seizure. Rigid but still could move his arms and legs. Reached out for me and tried to touch my face but wasn't quite successful.

Back asleep at 10:30.

75mg Lamictal AM
100mg Lamictal PM

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Mam

Morning Update

2 events. First one at 6:15 am and last one 7:00am. Both events had a duration of less than 20 seconds. Rigid, non-blinking, clicking noises. Awake for the day after the second one.

Mam

While updating my Facebook and personal Blog, Bug saw my Picture. On my blog he pointed to it and said: Mam. And then turned to me and smiled. The pointing is big deal. He stopped pointing after the seizures started, so for him to be pointing at things is great, but to also assign them proper sounds is better than great. I can now say that some of his babbling is intentional.

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EOD Rundown

>> Monday, June 8, 2009

Wake-Up
6:30am

Today was an ADHD and OCD day.

No daytime events.

Wanted to be held and cuddled,became agressive when I would not let him sit on me. He wanted to play with Tay and Cassie and got VERY upset when they would close the door and scream, pretending he was gonna get them. Some independant play but mostly tried to engage others to play with him. Pulled curtain down 4 times to look out front door.

Sat on the deck and played with the vertical blinds.

Would not use utensils, spun noodles, ate 4 real meals and a few snacks. Spilled A LOT of water today. Water was the running theme. Two showers for leaking diapers, followed by one bath. 4 spilled water glasses and intentionally dumped water on the floor at McDonalds.

Waited for me to go to the car, and got out of the car himself but made me put him into it. Kicked off my knees while riding in the cart and grabbed for people and things.

Said Ma Me and grabbed my face. Kissed my arm when it was on the back of the couch. Held Taylor's hand several times and smiled at her when she smiled at him.

75mg Lamictal AM
100mg Lamictal PM

Bedtime
9:30pm

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Brainwaves

On Thursday, June 4th, 2009 we opened the door to a new possibility: we caught 6 seizures on 24 hour EEG.


It's an unimaginable dichotomy. Wanting a seizure to occur in your 6 year old. Praying for the very thing you pray against every night before bedtime. But it is the single most important event in our struggle to determine what is causing his Epilepsy. No test before has been as crucial. We were almost sure he would have multiple events that night, he has been having nights like that for weeks. One a night, at least, for over a year and half. I don't like to actually do the math but that's over 400 seizures. That will suck the fun out of the room.

It was his 5th EEG and the first to catch an event.

We checked in at 10:30am (give or take) to the RTU at Primary Children's Hospital and had originally requested sedation to keep him calm while the leads where attached, but at the last minute we decided to try it Au naturale. Annie and Dennis took their time setting up for the 'great taping' and because of this, Annie wired him up VERY quickly (SHE IS THE BEST!). She taped all the leads (this would become a battle later), wrapped his head as tightly as possible, put the lead box in a bag and, with Bug's Murse tossed over his shoulder, we were off. I had bought him new toys to attempt to keep him interested and somewhat calm. He picked out a few of his new favorites, played with them off and on sporadically, which really meant I spent my day keeping him away from the door. I noticed that the chart said: Absence Seizures and POSSIBLE Tonic Clonic. This pissed me the hell right off. We NEVER said that. He first seizure was a FULL Tonic Clonic and he has had EVERY type since that time. You name it...he has had it. So to see POSSIBLE T/C....yea, did NOT go over well with Mom. But he showed them.

Daddy was working remotely and had several long calls over the course of the day. I found myself resentful at times. It was a childish emotion and I pushed it aside almost as quickly as I conjured it up. Still, it was a long day of Bug sitting on my lap, pulling my hair, giggling and then kissing me. He is a sweet boy and yet a very tiring boy all the same.

I called my parents and asked them to bring Papa down to entertain Bug. Bug adores his Grandfather (and his Grandmother) so I thought it might give him something to take his mind off of the head wrap that was driving him slightly mad. They came down, ate dinner with us, played with Bug, Mom insulted the Doctor (not her fault, she didn't know there was AUDIO and VIDEO), and he tired himself out.

I was dreading sleep for him. As much as we needed to get them recorded, I still do NOT want him to ever have them again. But, this is the first really useful step, so Glenn and I hovered as he drifted off. He woke up abruptly a few minutes later and we thought we might have one..but no..he wandered around a little bit and crawled into my lap. He was asleep for about 15 minutes when I felt him tighten up and heard that little partial scream. Before Glenn could notice I told him: Seizure. I moved Bug to the bed so the video camera could capture the whole thing and Glenn called out the time. His new seizures last less than 20 seconds. A far cry better than the 3+ minute full T/C of the past but still makes a Mom want to cry. We were happy, at last, to see the pattern on the EEG machine and we breathed a collective sigh.

Now, everything about being a parent screams: protect him and the logical creatures scream GET SOME SLEEP. So I tried to sleep on the sofa sleeper while Glenn slept next to Bug. The problem with sleeping in a hospital, for those of you that have never done it, is the vitals check every hour. EVERY hour the nurse, or her minion, enters, not always quietly, and checks the patients vital signs. Yep, when we were asleep it was not long before a door opening would awaken us. Even more troublesome for me were the other crying children. Every little noise would startle me awake and I would look over at Bug, sleeping contently. Glenn would smile at me and say: He's fine. We did this every 20 minutes or so for the first few hours he slept. This is our life.

By 7am he had had 6 large events and 1 small...and we got them all. It was very exciting, as much as it can be. Mike the pediatrician visited us and gave him the thumbs up to go home. Asked us if it was eventful and we both beamed: yes! He congratulated us and wished us the best. THIS is why we LOVE UTAH! After a while, his Nurse came in and told us the EEG tech had told her to remove his leads so we didn't have to wait anymore. Oh, OK. I started to film the event but had to stop because the tape was pulling Bug's hair. And he was pissed. It took all three of us to remove it. I haven't seen him cry like that in a long long time. When we were finally successful and he was freed, Glenn let him go and Bug promptly smacked ME! I take it he thought I wasn't supposed to hurt him but the other two could. No idea but it's over.

We left before 10am on the 5th, tired, VERY tired, and postulating about how much this would help in the long run. All the while, Bug was babbling MaMa MaMa in the back seat.

I have spent my time searching the Internet for a similar EEG seizure pattern and it's diagnosis. At one point, I thought it looked like temporal seizures but alas, I was wrong...I think. This is what we do, we get the tests and then we search for our own possibilities. It is important to be a partner with the Doctor, to participate and not just react. To be able to say: Wait a minute, when caution is called for. And we wait. We wait for his appointment on the 11th with Dr. Van Orman at Primary Children's. And we pray that someone recognizes the pattern and that it can be addressed more aggressively without losing our little boy again.

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About Bug

>> Sunday, June 7, 2009

I was 32 when Glenn told me I was pregnant. Of course, after 7 years of trying to conceive with no reason we had not, I didn't believe him. Sure, I felt 'off' but it was just allergies and a bladder infection. Oh, how it wasn't. When the test came up positive immediately, I was numb. Shocked, stunned and scared. How had this happened? And then, I didn't care. I was finally pregnant and all would be well.

I was stunningly sick for the first 20 weeks. Every other day was a puke-fest, I had a tough time enjoying being pregnant. In fact, I hated it. I couldn't eat, I was dizzy all the time, I was exhausted and really tired of our bathrooms. At 20 weeks, we had a scan and saw we would be having a boy and all things looked perfect. My misery had value.

The last 20 weeks were considerably easier than the first. He was very active, and I mean VERY. He woke me up almost every morning at 6:20AM for the last 6 weeks. This part, I did enjoy.

Our week 38 checkup showed that we were almost there. Almost to the point of delivery, or so we all thought.

My due date arrived, I went to the Doctor. We were told that if I went the weekend it would be a shock but today did not look like the day. We went home and began hanging Christmas lights. We were about half done when I had to go sit down, started getting very tired. I went in the house, sat on the floor and did some coding on my computer.

When I stood up, my water broke. Well now, right on time! I liked this boy already! I got Glenn and we headed to the hospital.

I had gained 23 pounds and at just shy of 5'10" I didn't really look like I was ready to deliver. But boy, was I. When they checked me I was at 4cm and he was at -1 station. He had moved a lot in the 9 hours since my appointment! I was hooked to the machines and they confirmed my contractions where in fact productive and that placed me in active labor.

However, I stalled at 5. For 4 hours. And I had continued to lose amniotic fluid so we all decided that Pitocin would be best. At 2:20 am I got the Pit drip. At 3:30 I asked for pain medication and received Nubain. This was worthless, it just made me dizzy. At 4:30 I was told I was at 7cm and could have a Epidural if I wanted and I wanted. At 4:45 I got my epidural and it was heavenly. At 5:00am my blood pressure dropped and the nurse rolled me on my side and called the Doctor. They removed the Epidural and gave me something to counteract it.

By 6:00am the drama was gone and I was ready to push. So I did. And I pushed some more. I pushed for an hour before my Doctor walked in. She took one look at me, made a small snip while I pushed and Glenn David Maughan was born. He had great lungs. He let the world know of his immense displeasure and I was stunned. She placed him on my chest and I took one look at him and said: Oh, there's my little Bug. And a nickname was born next to him. He weighed 6lb 13oz. I was scared that he was so small but I was barely 7 pounds and Glenn was under so he was right in the middle.

More importantly, Bug was perfect. Completely bald except for a little patch of strawberry blond hair on the back of his head. He was strong and very happy, we also called him Smiley. He ate ravenously and we had to supplement from day 3 of his life or he wouldn't sleep longer than 45 minutes. The sleep deprivation was intense.

At 4 weeks, he had more than doubled his birth weight and we both got the flu with a 104 fever. Tylenol did not work well for him and we got the thumbs up for Ibuprofen which broke the fever nicely. It made my heart ache to hear him so congested and I hardly slept for a week, but then again, neither did he.

He did that cute baby thing while he ate, sticking his fingers in my mouth and smiling. It made me feel complete.

At 4 months old he began sleeping for 4 hours at a time and started to refuse breast milk. Not just breast feeding but any breast milk. We had no real choice, I cried and he started baby food. He adapted to that like a champ! He liked to sit in his swing and stare out the window until he fell asleep. When he wasn't in his swing, he was on the couch, propped between two pillows, watching the people in the room.

At 6 months he was sitting on his own and babbling. Almost every night I would hold him in my arms and he would smile at me. I would say: Stop smiling and go to sleep and he would giggle. We were sure he was saying Hi to people. When someone would walk into the room, he would look at them and the person would get a smile and a Hiya sound. More than one person commented on it.

He was a Daddy's boy. When he was upset, which was not often, only Daddy could comfort him. He loved to be tickled and cuddled. He would wake up with a smile on his face everyday, even when he was sick. I have never met such an agreeable infant.

At 9 months he could feed himself with a spoon and a fork and laughed about it. At 11 months, he decided to forgo crawling for walking and has been running ever since.

By 18 months he still hadn't talked but he would shake hands, follow simple directions and point to what he wanted. He loved to dance and listen to music. He would sit on Uncle Jason's lap for HOURS and watch him play video games wearing headphones listening to music. He had no stranger danger and would walk up to anyone and give them a hug. He loved to watch Rolie Polie Olie and would dance to the theme music UNTIL he found SpongeBob. When SpongeBob came on he would sing the Ooooo part of the opening song. It was hilarious! He would stop in his tracks, throw his big golden-haired head back and say: Ooooooo at the top of his lungs. And when the Oooo was over, he would dance the rest of the song, then climb up in his High Chair and watch until a commercial. At that point, he would come over to give me a hug and a kiss until SpongeBob started again.

Since Daddy didn't talk until he was 4 and his Paternal Grandfather was 5, we weren't too concerned about his lack of speech. At first. Until...

Two months shy of 3 years old he had his first and second seizures. I always thought his Grand Mal (New term is Tonic Clonic) seizure was the first. It started with a horrified look on his face. He was looking over my shoulder and began to scream and go rigid, the look on his face was sheer terror, I thought he had seen a ghost. No kidding, I turned quickly expecting to see something behind me but when I saw nothing and turned back, I realized he wasn't scared, he was having a seizure.

As terrified as I was, I knew what to do. I placed him on his side and knelt close to him, reassuring him that he was gonna be OK and I hung up the phone (I was talking to Glenn who was on his way home when it happened) and called 911. He was seizing for a little over 3 minutes and by the time they had dispatched the paramedics, he was coming out of it. He curled up and slept. We readied him and headed to the hospital. The paramedics moved in slow motion. I was trying to hurry them, thinking he could be dying, he could have something REALLY wrong with him and they took their time. I was anxious, I had just experienced the worst moment of my life. Watching him have that seizure that shook his whole body, I couldn't help but think: I am watching my son die and there is nothing I may be able to do about it if there is something wrong.

I rode with him in the ambulance, constantly turning around to check on him. He was so small on that big gurney. So small. The Paramedic sitting by him taking his vitals, fell in love with him. Everyone did. He had hair that was spun gold, he looked like sunshine. The Paramedic did what everyone did: He pet him. And he held his hand while he slept.

When we got to the ER, Glenn was already there. The same hospital he was born at. They tested his Blood Glucose and did a CAT scan. His tests were 'unremarkable'.

I remember sitting next to Glenn while the staff was with Bug. I leaned on him and told him this was all wrong. It felt all wrong. We weren't supposed to be here when he was 3. The first time we were supposed to come to the ER with him was when he was 8 and had fallen off his bike, not 3, not because of a seizure. It was all wrong, I didn't know how wrong at the time but I knew my world had changed.

We found a different pediatrician and he looked over the ER reports from the previous day and he seemed unconcerned. He told us: I give everyone ONE. IF he has a second we will track down the cause. I didn't think about it at the time, but the Grand Mal WAS his second.

We had been taking a shower together that day. I had his baby sister in my arms and he was next to me. I was rinsing her when I heard him fall. I turned and saw him on his back a little rigid and staring. I placed Taylor on the carpet outside the tub and grabbed Bug's face and started talking to him. Bug? I queried, Bug are you OK? He gave me no response, and I thought he had slipped and was dazed. I held his hands and listened to his chest, his heart was beating quickly and I surmised he had slipped, hit his head and was maybe a little shockey. He came out of it and smiled at me, then began to get up. I picked him up and carried him into the bedroom. I went back to get the baby and when I returned he was asleep. THIS scared me. I put Tay in her crib and called Glenn while I fetched a flashlight. Still thinking he had hit his head. I checked his eyes, there were equal and responsive and his position in the bathtub made me think that he was just tired and laid down too quickly.

He slept for 3 hours and I brushed it off.

Less than an hour after he woke from his nap, he had the T/C and our lives turned upside down. He went 4 more months without another and we thought it was a fluke. But then he had the second one and then 4 weeks later a 3rd. Every four weeks.

He VERY slowly, started slipping into himself. He smiled less, he hated to be tickled, he wasn't dancing anymore.

We made an appointment at Primary Children's in Salt Lake City. California has NO Pediatric Neurologists that take insurance. Yeah, California, the touchy feely state doesn't care that you have to pay your Child's Neuro and then bill the Insurance Company yourself. So, not only were we gonna have to go through all the testing and the months of regulating drugs but then I would have to argue with the Insurance Company. So we called Primary Childrens, met with Dr. Susan Benedict and began our journey of discovery.

We thought he might have BRE (Benign Rolandic Epilepsy) but his EEG did not show it. In fact, his EEG, which was done almost 10 months after the first seizure, was not abnormal. His brainwaves where within adolescent limits although a little excited. He IS ambidextrous and we thought maybe he was just having a tough time building those amazing amounts of neural pathways. We talked about the possibility of Landau Kleffner Syndrome.

And we waited. Although he was having T/C seizures, most AED's (Anti Epilepsy Drugs) will hinder development in such a small child and we all agreed to wait to try any and see how the seizures developed.

A few months later, it appeared we had made the right decision. He moved to Absence seizures. These are not as intense and last a lot less time. A few months after that, he had Drop Seizures intermixed with the Absence's. But still, the frequency was every few weeks.

November 24Th, 2007 Bug began having T/C's every night. We got in to his Doctor in December who referred him to UCLA. Even with the referral, the earliest we could get in was the end of April. 5 months! Over a hundred seizures! I was pissed but we went. It was a complete waste of time.

The first Doc he saw at UCLA took his medical history. She asked: Has any medical professional confirmed these? THIS will rip your heart right out. I know, she needed to ask, but the very thought that we would be manufacturing our despair for our son was shocking. Even more shocking was the Doctor we were actually scheduled to meet. He sat with Bug for ten minutes, refused to let him hug him, shoved him away every time he came near and declared: It's JUST Autism. But we WILL test him for genetic markers. Things such as Fragile X, and the Trisomy.

This got my back up and I actually flinched. Not at the thought of Autism but at a ten minute diagnosis with no testing. The Doctor looked at me and I raised an eyebrow. I said: Wait a minute. I don't want us to be so certain of this label that we neglect looking at anything else. I want to make sure we don't put him in a place where we forget to look around.

The Doctor ignored me, turned to Glenn and said: I am the preeminent Doctor in the country for Seizure Disorders and I will stop the seizures but his obvious behavioral issues need to be referred to the Behavioral Department. Glenn saw me open my mouth and spoke for me: He is not always like this, what IF whatever is the catalyst for the seizures is also responsible for his hyperactivity and lack of focus?

Again, Dr. Fullofhimself reminded us that HE is the leading...yada yada yada and HE will yada yada. Bug wasn't a person to this man, he was a diagnosis and another case to add to his resume. WE weren't logical, reasonable, people we were stupid, emotional parents who had to have a firm hand. He did give us a prescription for Depakote and Diastat(for when he clusters or has a T/C over 4 minutes) and he said the ONLY redeeming thing he had said: There is no reason we shouldn't try to get him some relief immediately.

We got out in the car and both tried to be upbeat. We said things like: This Doctor must be good, he seems to know what he is talking about and he has a lot of experience. We lied to each other to make us feel better.

When we got home and actually talked about it, we realized the man was an ego maniac and we wanted nothing to do with him. He didn't even order an EEG! He told us he wanted an MRI and blood work. We got the blood work before we left and were told that it would take upwards of 2 months for the MRI. The statement was: If you haven't heard from us in 2 weeks to schedule it...give us a call. I asked: Why can't we schedule it now and they ignored me. K. Done with UCLA.

At that point, we knew we might be moving to Utah and so we decided to wait until we knew for sure. UCLA never called. I did call them, so that I could at least get some testing done and they told me they had to call me back, which they never did. Wow.

He was on the Depakote for 2 months before we had to stop it. He was too hyper. He was playing with his feces, climbing in the fish tank, smacking the walls, eating weird things ALL the time, and he never sat down, except to sleep, which was fitful and gave him no relief from seizures. 60 days was 58 days too long. When we called the Doctor after the first 30 days, we couldn't even leave a message. So we had to call back and we never talked to anyone, or were able to leave a message.

When we found out we would be back in Utah we both almost cried. We cried because this is what our boy needs. This was so right. I made an appointment as soon as Glenn's insurance kicked in. It was 4 weeks away.

We were there for 3 weeks when Bug started having MULTIPLES a night. The third night he had 6, I called around to find a Doc that could get him in immediately. I look for the personal response when I talk to a Doctor's staff. In a case like this, I look for: Can you hold while I ask the Doctor if he/she is available. And I found it in the third Doctors office. Dr. Pamela Vincent in Provo doesn't usually take pediatric cases but she told her receptionist to get us in the next afternoon.

When we met Dr. Vincent I immediately wanted to hug her because she picked Bug up and held him on her lap. She ordered an EEG and told us to be strong until she can see his brainwaves so she knows what medication to give him. I almost cried, I can't wait Pamela, I said. I hear death creep at night when Bug screams before his seizures, I rush to him, and comfort him and pray his heart slows back down and that he takes another breath. I feel helpless and he hasn't smiled, really smiled in over a year. Please, I begged we can't wait months. She looked at me and smiled. Annette, we will schedule it before you leave and if they tell me it will be longer than a week I will be surprised. I held my breath. A week? Really? Yep.

A week later he had his EEG and a week after that she prescribed Lamictal. And the Lamictal gave us Bug back. That happy boy, that playful boy, that smiling boy. He had some relief from his seizures but recently is back to multiples. Dr. Vincent referred him to Dr. Van Orman at Primary Children's Hospital and she told us that his EEG pattern showed 4 possibilities: West's Syndrome, Myoclonic Juvenile Seizure Disorder, BRE and MAYBE Landau Kleffner.

We got in to Dr. Van Orman a few weeks later and more testing began. He had an MRI within 2 weeks, he had more blood tests and we scheduled a 24 hour EEG.

The last 6 months have been unreal, eventful and educational. We have come a long way and are finally getting someplace. Most importantly, we have Bug back. He may still not talk, and is not potty trained but he laughs spontaneously again, and he is investigating the world again, something we thought was gone forever.

Update:
Bug took several bad turns and almost didn't make it a few times. He was in Status Epilepticus and before we knew it, he was on so many heavy benzo's to stop his seizures, we completely lost him again. He stopped smiling, eating, walking straight, it was a nightmare. And then...

Bug's FIRST diagnosis came after his second Status and a lumbar puncture, the test we begged 4 years to get. It took another year for us to get the results: Cerebral Folate Deficiency. His brain wasn't getting enough 5-MTHF, a major neurotransmitter.  After doing more research, we found and had him tested for Folate Reductase Autoantibody. He was VERY positive for both blocking and binding autoantibodies. Bug doesn't like folate, he doesn't produce it well and when he gets too much of it, the autoantibody goes wild. His treatment has helped him greatly, but as he gets older it has been getting tougher to treat.

Now he is on an experimental drug: Epidiolex and doing much better. He is engaging more, making eye contact, no longer toe walks, and is happier overall. We are still working on an official genetic diagnosis, we know he has something going on, but no one has found it. And with his brother's cord blood banked...we have some next-level options. So step up Geneticists...impress me!

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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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