Seizure

Monday morning literally 5 minutes before the bus came for Jack he had a seizure.  He was waiting by the door with his coat, hat, and gloves on and I was in the kitchen gathering his lunch and bookbag.  I don't know how or exactly when the seizure started.  I heard teeth grinding sounds and thought to myself "uh-oh." and when I walked around the corner I saw a very pale, blue-lipped Jack in the middle of a seizure.  I froze and couldn't make my mind work.  After what felt like forever I took Jack's coat off and turned him on his side.  I was working on his belt and pants (had diastat on hand) and he came to and looked around and very weakly whispered "bus" and I gently told him "Jack, you had a seizure and you're probably feeling sick"  I did not need to use the diastat this time.

I grabbed the phone and called Jason, then I called the school, and then finally I remembered the bus!  I ran out to the bus and explained to the driver that Jack had a seizure and I would be keeping him home from school.  I ran back inside and assessed Jack.  He was really out of it with big pupils and very pale.  I then remembered I had to call his TSS (who meets him at school every day) and by the time I was done talking to her Jack was fast asleep on the living room floor.  This one hit him pretty hard.  He slept from 8:30 am until after 12:00.  When he woke up he was confused and disoriented and very lethargic.  He perked up a bit and ate a late lunch but was very quiet and his speech was slurred (he had a hard time getting his consonants out)...then, by 3:00 pm he totally perked up and was back to being Jack!  He was dancing and singing, hopping around and requested to eat like 5 times before dinner!

He's been fine ever since...no other seizures that we've noticed.

So this isn't the first time and it certainly won't be the last -- but boy do seizures have a way of knocking me for a loop.  It's like we go just long enough for them to creep to the middle-to-back part of my mind, almost a distant memory then WHAM -- NOPE, no relaxing for you!  I know it's out of my control -- and that's probably the hardest thing.  I had a really hard time sending him on the bus yesterday but I know I can't keep him home just in case...ya know?  So he's fine, and I am too -- but I don't like these sneak attacks.

Another Seizure

So this makes two in less than a week. Put a call in to the neuro and they said to increase his Keppra by 1 ml morning and evening. So instead of 4 ml twice a day he'll get 5 ml twice a day. They warned we could see more seizures this week until the new dose kicks in and to call if they increase in frequecy or intensity...let's hope NOT!

Gotta run the kiddos are chasing each other around! Will keep you posted!

11 Months...

11 months without seizures. It was our longest streak since he began having them regularly 3 years ago. On Friday we had a date night set and were going to go to a 4th of July picnic about an hour away. Pa Pa, Jan and Steff were going to come watch the kids but Jason had been golfing all day and I was tired and we canceled our plans and just stayed home. I am sure everything happens for a reason even if we don't know why at the time! Jack had a very minor seizure on Friday night. I am sure everyone would have been fine even if we had gone away! It was a simple partial seizure -- which is how they usually start for Jack, but they progress to complex partial and on occasion to generalized. This one stopped in its tracks after about 1 and a half minutes and he's been fine ever since. No Diastat needed. He had started (as usual) with teeth grinding and chewing motions and his little lips had a slight tinge of blue, and he was spaced out for the duration. He came too and asked to eat...he seemed confused a little and then went to bed for the night. Like I said, he's been okay ever since...and fingers crossed we go another long stretch before we see another.

Jack had Botox injections yesterday under general anesthesia. He did awesome and was such a champ during the process. He remained calm and only got nervous when the anesthesiologist came at him with the gas mask...and he was out like a light! He woke up and asked for fries...too bad it was 9:00 am and no one had any on the way home! He's doing great today and will start intesive outpaitent Physical Therapy next week.

I will keep you posted! Thanks for reading!

Thinking Back...Status Seizures

January has not been a fun month in our house two years in a row.  I didn't realize that I have been sort of holding my breath lately.  In January 2007 Jack had his first Big Seizure.  After that, he had several more and that began our horrid journey into knowing what seizures really are.  There were lots of ups and downs and we had a wonderful neurologist working with us.  I am so thankful he was Jack's dr. during the onset of major seizures.

A year later in January 2008 another call to 911 for a major seizure...So after several more seizures in 2008 -- I am left wondering what 2009 will bring.

They say hindsight is 20/20.  This is true in so many aspects of life.  I didn't know it at the time -- but at least twice Jack has been in Status Epilepticus.  Status can be life-threatening.  It's the suspected cause of Jett Travolta's death.

I don't normally live in fear.  I have come to terms (as much as humanly possible) that we cannot control what happens -- especially when it comes to seizures.  I just have my hope that this January remains uneventful and 2009 is seizure free.

Catching up is hard to do!

Oh, I don't know how to say sorry to everyone!  I've been reading my blogs each and every morning...but just haven't had the, I am not even sure what, to post.

Jack's behavior has been really terrible for the past week.  I now know why.  He woke up early this morning and didn't seem to be feeling well.  I decided to keep him home -- and I am glad I did.

I decided to call the pediatrician because we noticed Jack's pee smelled really, really bad and perhaps he has an infection... 

He was really down and out and slept most of the morning.  He woke up and ate, and then at 11 am he had a small seizure lasting about 45 seconds.

Then he was really pale and sickly looking.  They got us in and out at the dr's office and confirmed (via straight cath) he does have an infection.  They are starting him on antibiotics and will call us when the culture comes back for the lab.  I know some of you remember the ordeal back in 2007 when he went round and round with a nasty kidney infection and ended up hospitalized to finally get rid of it!  I really, really hope this is done after one round of meds!

I hope you're all doing well!  I do have so much else to write about -- especially school!  Jack is doing amazingly well and I couldn't be happier with his placement.  (((hugs)) to you all!

Ups and Downs, EEG Results

I spoke to Jack's neurologist last night. I almost forgot that I had called him at some time during Jack's 48 hour meltdown this past weekend. We have decided to hold tight with any med changes and ride it out, so to speak. Stick to the plan he came up with last week. I told him how we had 48 hours of meltdowns, then two of the best days, even during the EEG. He was quiet for a moment and here, he was looking up Jack's EEG results just to see if that related to the worsening behavior. The EEG showed "Jack has the potential for seizures" basically the same thing it always said. Which is good, it means he didn't have any seizures during the test, not even small ones (that I thought could be happening when he's tuning out or staring off). So some great behavior, no changes in his EEG...we should be good. But we're not.

Jack had a seizure last night and we had to give him diastat (the rescue medication). We waited until the 10 minute mark because it wasn't stopping or showing any signs of slowing up. He came to, looked at us, and went right back to sleep. He had a very, very restless night, lots of little jerks and jumps, thirsty, and over all didn't sleep too well.

I emailed school and called his TSS and made myself a note to call transportation in the morning...so I am finally resting (SLEEPING) well next to Jack who is also resting well and the doorbell rings. I immediately thought of the bus driver. DARN! I answered the door and a man and woman are smiling big smiles and I was soooo confused because I saw the bus in the background...finally after what felt like minutes of staring at them they said they were here to get Jack, his normal bus driver was out sick. I apologized profusely and said this never happens, I always call (read -- I am not one of THOSE people), and I am so sorry, I will call and let you know about tomorrow. They left and I came to blog..still a little fuzzy as I haven't had my coffee yet.

I will keep you posted.

EEG

Jack was so brave and did so well at the EEG this time around. I can't explain how proud I am. He was scared, anxious, and just wanted to go home but he really did well with all of the gluing, taping, strange sounds and lights...I just want to give him the world when I watch him go through this kind of stuff. Not that the test was painful or anything like that -- just imagine though you don't know what's going on and someone does this to you:

(this is OBVIOUSLY not Jack, lol but an image from google image search)

Plus add in all of his meltdown triggers (someone messing with his scalp, being still, being told we can't go home yet) and not a single tear, not a single scream...

We of course don't have the results and probably won't until we see the neuro in October. It's okay though because we do have a plan in place.

Will keep you posted!

Update on Neurology Appointment

We're home now. Jack was so out of it at the appointment -- I am sure he's still post-ictal from last night's seizure.

The doctor is going to change his medications and he ordered an EEG as well. We're doing it in stages -- first wean tegretol at the same time we're going to be starting Keppra...we'll then wait until that process is done (4 weeks), see the neuro again, then start to wean the valproic acid. We also need labs as well. My head is spinning...i left with so many orders and prescriptions...and all I want to do is cuddle with my boy.

Jack has been drooling excessively and we noticed patches of hair missing from the back of his head -- all are signs of too much valproic acid. So basically we need to find a medicine that works.

Jack was so tired and pale I decided not to go to the ortho appointment. The same ladies who checked us in for the neuro also do the check in and scheduling for the ortho and once they saw him they agreed he looked like he needed to go home!

I hate all of this and I hate how utterly drained we all are after these things. We're going to be hanging out in "he could have a seizure at any moment-land" for a while until the meds are worked out. Even then Keppra may or may not work. Let's pray it does!

Anyway, thank you for your thoughts. I will keep you updated!

Seizure...

Last night Jack had a seizure. He was sleeping for about an hour -- Jason went in to check on him and he was fine, sleeping away -- a few minutes later Jason went back to find him eyes open, pale/dusky, grunty breathing, mouth moving, and arm twitching...we waited it out, and it stopped on its own. That's such a helpless feeling, to watch your child have a seizure.How very glad I am that we have a neurology appointment this morning. I am not thrilled to be driving so soon after a seizure...but we have no choice. He had a very restless night but no more seizures that I am aware of.

Will keep you posted.

Seizure Tonight

Just when we seem to get on with life and "forget" about those ugly things, they come out of the blue...we just (after a year and a half) put Jack back in his own bed to sleep...

For some reason he wanted to sleep in our bed tonight so I laid down with him until he fell asleep. Jason noticed Jack was awake about a half hour later. I went in and got in bed with him and he was just staring -- not unusual when he's trying to get back to sleep...then it turned eerily familiar (with some new twists too) he started blinking rhythmically with his head slightly moving and kept pointing to my eyes and saying "eye" over and over again with a monotone voice. He didn't flinch when I put my hand near his eyes and then he lost color in his face and started with chewing mouth motions and wiggling tongue motions, rapid heart beat, and then I noticed his left hand was opening and closing...just when I was going to give him diastat (about the 10 minute mark) he "came to" and said "Night night mom" and "yuv you" and went back to sleep.

He's fine now, sleeping away in our bed and Jason just went back to be with him. Of course there will be a call in to his neuro tomorrow (we just had blood levels done Thursday -- which will be a big help in deciding what to do with his meds) and hope there are NO MORE seizures between now and then.

This is the part that I hate -- do I send him to school like a ticking seizure-bomb? Or was this a once and done thing? How do we decide these things? Where's the manual on this stuff?

I will keep you all posted...hope everyone had a great weekend! (ours was AWESOME up until an hour ago...swimming pictures to come!!!)

Seizure...

Jack was sleeping in my bed taking a nap and I just happened to go in and check on him (mommy instincts maybe?) and I found him with his eyes open and jerked to the right, not blinking and dusky, teeth grinding and chewing/tasting movements with his mouth. Since I had NO IDEA how long he'd been having the seizure I went for the diastat and when I returned he was coming out of it. He didn't really acknowledge me, but I've seen him like this after seizures before. He fell back to sleep and is cuddled on the couch not out of my sight.

I called neuro and am waiting on a call back. He has no signs of illness (yet) so we'll see what the weekend brings...and to top it off his bday party is this weekend. I hope it stays at just one and that he's not getting sick...

Siezures STINK...BIG TIME.

Seizure and 911...

Jack had a slight fever yesterday so I kept him home from school. He spent the day on the couch soaking in cartoons and not really eating or drinking much at all. I knew he was coming down with something but overall just seemed tired. He perked up when daddy came home and got off the sofa for the first time in several hours and played with Morgan while Jason and I watched the news. Jack stood up at the table in our living room with Morgan under his feet and suddenly tensed up and flew backwards a lot like a solid brick of ice -- and landed on the back of his head on the hardwood floor. For a brief second I thought he had just lost his balance, until I realized he was still rigid and turning grey. I pulled him away from the table by his foot and Jason grabbed the diastat and called 911. He wasn't breathing because he was locked in a tonic phase and really turning grey/blue. I administered 5 mg of diastat and his body released from the clenched, rigid tone to loose and floppy and he began breathing very shallow breaths. The paramedics, fire department and police got here within moments and he was coming out of the seizure but was still unresponsive. They took his stats and medical info and loaded him onto a board with a neck brace and secured him so he couldn't move as a precaution for the nasty fall he had. Jason stayed with Morgan and I rode in the ambulance. During the ride to the medical center Jack was coming to and was agitated because he was strapped down. Once we got to the hospital he was responsive and asking for a drink. Jason had called my family to come watch Morgan and he arrived at the hospital shortly after we did. The ER was quiet so we got attention pretty quickly. They took blood to test for medication levels and started an iv for fluids. They took him for a head and neck CT scan and we waited for the results. His blood levels came back low and his CT scan came back clear. We were released after several hours of observation with instructions to increase his valproic acid and follow up by phone with peds and neurology today. Jack went to bed shortly after we came home. Morgan, on the other hand, was thrilled to be spending time with Grandma, daddy and mommy and wondered why we don’t have late night “parties” like this more often. So far this morning Jack is tired and coughing and again, slightly feverish. I will be setting up an appointment with his pediatrician in the next day to make sure he’s getting better and not in need of antibiotics.

There was no warning with this seizure…no twitches, no vomiting or lip smacking…nothing. It came on so quickly and suddenly. I keep replaying the scene over and over and can’t get the sound of his precious little head hitting the floor out of my mind. I have made the executive decision to get carpeting in our living room and hallway. In fact, while I’m making executive decisions, any way we can simply carpet and pad the rest of the world too?

I will keep you all posted. Keep our little man in your thoughts and prayers and send plenty of “NO MORE SEIZURES” vibes our way.

Riding it out...

I spoke to Jack's neurologist this morning...I was so fuzzy headed, Morgan was up until 3:00 am -- (teething woes) and Dr. N. woke me from a dead sleep. What I got from the conversation is that he wasn't happy about yesterday's 4 seizures and we are increasing the rate of increase of the valproic acid after he did some weight calculations (mg per kilo).

He's on call all weekend and we see him on Tuesday. He also said to give Jack his meds as soon as he wakes up in the morning instead of waiting until 9 am -- because his night time dose isn't carrying over 12 hours.

I did ask him if this was "normal" for the situation (as in the bumpy road reference) and he said yes. We are hanging in there, and hopefully the increased rate will help get us seizure free faster!!

Even more...

Jack had a total of 4 seizures today. He's doing okay, but my nerves are shot. Will post an update in the morning....

More Seizures...

Yesterday morning Jack and I were lying in my bed and he had a seizure lasting several minutes. I ran to get the diastat and opened the back door because our dog was barking madly to go out and pee. I ran back to Jack and watched him and he seemed to be coming out of it so I did not give him the diastat. He was out of it for a little while and then was totally fine.

I know we are to expect this to happen until the meds are up to therapeutic levels -- but I still don't like it. It truly is like constantly waiting for the other shoe to drop. I can handle it, but the stress is getting to me. Every time I hear a bump or noise coming from the other room I run in expecting to find Jack having a seizure.

I realized that I had the dog outside and hadn't attached her tie! When I went to let her in she was gone. I called and called. Jack was still post-ictal and Morgan was napping and I didn't feel comfortable putting them in the car to scout the neighborhood...so I went out every now and then to call for her. Finally one time when I was out I saw her head pop up over the neighbor's bushes! She came running back all happy and excited. Poor dog had to take herself for a walk...lol. I am glad she came home!

Later in the morning Jack had a massive poopy that was gross and sticky and went up his back and down his legs...I ended up throwing away his jammies and he had a nice long bath. It was just one of those days.

He went to school and had a great day. This was his first day back since the end of September -- they have weeks off here and there because they are on the extended school year schedule. I wrote a note to the teacher explaining what to look for and I also told Jack's nurse to keep an extra eye on him.

Then, this morning he had another seizure at the breakfast table. I moved him to the sofa and carried the diastat along with us. It was shorter than yesterday's seizure and he's lounging and watching the Backyardigans "The Yeti" episode.

I hope once the new meds reach their therapeutic levels that we can say GOODBYE to seizures.

Seizure in the car this morning

Okay, I am officially sick of seizures...for ALL OF OUR KIDDOS. Morgan had her first RSV shot this morning and on the way to the ped's office Jack started having a seizure. I almost pulled over to give him diastat but we were almost at the ped's office...I pulled in the parking lot like a hot rod driver, parked crookedly and ran to Jack. He was coming out of it when I got him out of the car seat. We went in (I carried both kids) and I told the nurse Jack just had a seizure. She took us to a room right away and by then Jack was fine, just a little shaky.

Morgan had her shot and we're home now. Jack asked for a hotdog for lunch and seems slightly off, but I have seen this post-ictal state before. I cut his lunch into tiny-smaller-than-toddler bite sizes just in case.

I called the neuro and am waiting on a call back. <-- Wow, that was quick, just answered the phone and he said we'll continue on our current med schedule. I knew this would be the answer, but just wanted to report the seizure. The new med has not had time to kick in yet.

I don't like the uncertainty. I don't like being alone when it happens. I certainly don't like driving when it happens. I don't like not knowing what to do in the moment...call 911? Give diastat? Wait and see? I hate not knowing if it's the start of something bigger or if it'll just fizzle and stay a small seizure. As usual, I will keep you posted.

I am off to make a large pot of coffee and snuggle with my darling kids. My sweet babies who should never know any pain or sickness...I need a tissue now too.

Urgent Neurology Appointment Today

I wrote this yesterday:

I am concerned about Jack. As I posted earlier he had a seizure on Saturday. He ended up sleeping for a couple of hours afterwards. He was okay mood wise (we even went for a long walk) but then he went haywire. His mood was all over the place...he cried and raged...I forget when he went to bed but it was close to normal time. Sunday was a lot of the same -- moody, cranky, raging...then he fell asleep at 6pm and only woke up for meds a drink and a diaper and slept all night till 7am. I called his neuro to update on the seizure. He said he really thinks it is time to switch to a new med due to the fact that we increased the Tegretol 10 days ago. He said the mood is most likely from the meds (we've seen this before). He is fitting us in tomorrow at 9am. I have to take Jack for bloodwork in the morning at 6:30 so he can have the levels by the end of the day.I don't like seeing him so upset -- it's like he's possessed. It breaks my heart because I know he isn't doing it on purpose. It has been a "walk on eggshells, waiting for the other shoe to drop" kind of day.I will update when we get home tomorrow afternoon.

**UPDATE**

We discussed Jack at length and decided the best course of action is to reduce the Tegretol slightly and add Valproic Acid (Depokene). He said by using both meds we have more wiggle room and he won't be maxed out on Tegretol and still have seizures like he is now. Instead if the Tegretol covers most of the seizures, the valproic acid will hopefully cover the rest with room to increase the dose. Please keep your fingers crossed that the road to being seizure free and side effect free is a smooth one. Although I know there is the possibility for bumps along the transition...

Small Seizure

When we were on vacation Jack had a small seizure after breakfast one morning. When we got home I called his neuro and he increased his bed time dose of tegretol and said if that didn't work we'd switch to another med.

Well, this morning right after breakfast (10:00 am) he had another small seizure. He started with mouth movements like he was tasting something, grunted like his tummy hurt, asked for a drink and then some food (which I did not give him). I think he was feeling different sensations in his belly. It lasted only seconds and now he's really sleepy laying on the couch.

Another call in to his neuro I guess...

What meds are your kiddos on for seizures? I don't know what he would consider changing to...I wonder why the Tegretol isn't working like it used to? He's been taking it since he was 15 months old with fabulous control until January of this year.

Anyway, just asking for some hugs -- I HATE this.

Neuro Update

I spoke to Jack's neurologist yesterday afternoon. He agrees that the episodes were seizures. He said they were simple partial seizures.

Our plan is to increase his night time dose of Tegretol by 2ml. He's increasing the dose at night because of our experience with complete meltdowns when he has more medication during the day. So now he's getting 4 ml in the morning, 3 ml in the afternoon, and 8 ml at night. In a few weeks we'll have another blood level done and hopefully this will work. If not he said it's time to look into switching to a different medication.

We had a lovely vacation -- I will be adding pictures as soon as I find the bag that has my camera!!

Small Seizures?

Jack's last seizure requiring intervention was June 3, 2007. He had been having one about once per month since January 2007. We then switched his medicine schedule from 2 times a day to 3 times a day and it worked very well.

Over the last 6 weeks or so I've noticed what I think is a small seizure about 4 times. He'll start with what looks like he's tasting something --which is usually what he does when he's about to vomit and then have a seizure. His heart races slightly, his mouth moves like he's tasting something and he looks a little scared. He then smiles like nothing is wrong and moves about his business. These episodes only last seconds and don't progress any further. Afterwards he's a little clammy and pale.

We're still on vacation and he did this right before breakfast this morning. This does sound like seizures, doesn't it? We just had blood work done last week so when we return I will call his neuro and run it by him as well as check his levels.

The kids are having a wonderful time on vacation! If you want to know where we are think "Watch the Tram car please!", aggressive seagulls that steal whole pieces of pizza and chicken legs off of hot grills, Khor Bros. Ice Cream, Mack's Pizza...lol, it's the Jersey Shore!!!!

The sun rising yesterday morning -- beautiful!!