A bad reaction in Arbuckle, CA on 12/23/08

We were driving down Interstate 5 heading to see family. We had lunch at Applebee's in Redding. Chase had a steak burger with cheese & bacon & fries for lunch. He fell asleep in the back seat (late night), and then woke up. Then he started freaking out saying he needed some air and some space. We stopped at a Chevron Station in Arbuckle. He tore his shirt off and we walked around looking at things (I gave him a locational). Then he went to the restroom, and then walked the dog. We wound up buying some Benadryl and having to give it to him after we got back on the road, because he still wasn't doing well.

We're in the middle of the clonopin wean, but it's been over a week since we dropped a pill. He was on 2 pills and I dropped 1 so cut his dose in half. So I don't know if this was from the clonopin wean. Or it could've been a seizure, because he had this reaction right after he woke up. Or it could've been an allergic reaction to something he ate at Applebees.

I was scared to death he would try and run out in the middle of the road, because he really was going nuts. I talked to a family doctor (yes, we have a doctor in the family), and she thinks the next pill drop should maybe be just 1/2 pill or 1/4 pill. I'd just like to get the wean over with though and see what happens.

He has had a couple of behavior incidents while here on vacation - once at IHOP. But he's also been off schedule alot since we headed out - so maybe when we get home things will settle down. The next pill drop was originally scheduled for 12/30/08 - after we get back home

We dropped 1 more pill 1 week ago!

Wow! I can't believe I haven't posted since December 3rd!

I took a gamble and dropped 1 pill on December 14th - hoping we wouldn't have school all week! My gamble paid off and school was called off every single day due to bad weather. Luck us! Chase was SO happy he gets another week off for winter break.

The wean has gone pretty well - although this last drop was by half and there were more seizures this time. The improvement we saw the drop of pill #2 was an interest in improving his reading skills. This last pill (#3) has seen him getting himself fed in the morning and taking his meds on his own. Plus - drum roll please - he's starting to learn how to do his laundry! Wowser! He did most of his own laundry this weekend - from loading the machines to hanging up & putting away his clothes. Also - last night he started cleaning up his room without being asked.

What did we do with no school this week? Mostly watch TV - Chase browsed Flair on Facebook, and played World of Warcraft - I renewed his subscription and he's paying for it with his allowance.

Oh - he also shoveled the snow - the front sidewalk & part of the driveway. He says he wants that to be his new chore.

I'm posting pictures of the snow shoveling & the snow we got - just since Thursday we've gotten about 18".

So far so good!

It's now been a week and 1 day since I dropped the last pill. The seizures haven't been any worse than usual, although he did have a hair raising scream in his sleep. There have been other changes as well - he decided to cut his hair when we went for haircuts on Saturday, and he had his beard, mustache & sideburns trimmed. He looks really good, but wouldn't let me take a picture.

Our next pill drop is scheduled for December 19th.

Signed - glad to be getting sleep at night.

Dropped another pill & we have an appointment!

I dropped another pill of clonopin Monday night. We have 6 days off of work & school and I'm going for the second pill. Fingers crossed all goes well. This is Wednesday night, and so far only 1 seizure since Monday. So far not much behavior issues that are any different than any other day.





I spent pretty much all day Tuesday on the phone with the doctor's office complaining. Today I got a call and they've made a special appointment opening for Chase on January 15th. I took it. Woo hoo! I guess being a pain in the rear and complaining paid off - as they say - the squeaky wheel gets the grease.





Seeing as tommorrow is Thanksgiving, I've decided to look at what I'm thankful for:

• I am thankful that Chase only has 3 - 5 seizures a week, and that he only has them in his sleep at night.


• I am thankful that Chase has fairly good health and can feed himself, wash himself, and dress himself.


• I am thankful that Chase has learned to read.


• I am thankful that I have a good husband who is providing for us.


• I am thankful we have this wonderful house.


• I am thankful that my father gave me a truck and that it is still running.


• I am thankful that I have a job, and that Mike has a good job.


• I am thankful that I have friends at work.


• I am thankful that I have a large family (even though I don't get to see them often enough) and that we are all so caring.


• I am thankful that I have my health.

Disturbed about Vagus Nerve Stimulator

11/15/08 - As I put Chase to tonight, I realized after the night was through, he'll have made it through week one of the wean off clonopin. He's had 3 big seizures, but it hasn't been as bad as I thought it would be.


On the other hand, I've discovered that his Vagus Nerve Stimulator can have an adverse side effect of stopping his heart from beating. It can also apparently make his seizures worse. I'm now wondering if the worsened seizures episodes are from the VNS, and if we made a right decision implanting him with it. Will I wake up one day to a dead child? Could his heart stop beating at school and they won't be prepared to deal with it. This all started by searching for a doctor who supports the device. I can't find the company's website any longer.



11/16/08 - As I was typing this blog entry - my husband came in and told me he could find the company's website just fine, and that I was overreacting. All the bad blogs on the VNS were coming from one person. I stopped working on my blog.



11/21/08 - I called and talked to the pediatrician's nurse asking what I should do about not being able to make an appointment with the neurologist. Hopefully the good doctor will be able to help me pull through this. I have no idea if he will be able to help or not, but I would like his opinion about the potential death side effect on the VNS.



The next drop for the wean is Monday night - 11/24/08.

Can't even make an appointment with the neuro!!!

After leaving a message on the neurologists nurses voice mail on Monday, and playing phone tag - we finally spoke about the clonopin wean. She wants me to make an appointment for late January when we plan on having the wean done. Guess what?????? The receptionist says there are no apointments available, would I like to put him on a waiting list. What? Not even the end of January? No ma'am. What about February? No ma'am. What about March? I'm sorry, my template doesn't cover March. What the heck? I don't know who I'm going to complain to at Dornbecher Children's Hospital, but you can't tell a patient they can't make an appointment - so sorry. It makes me feel like staying home tommorrow and burning up the phone lines with my anger.

Other than that, he had seizures on Tuesday & Wednesday night. Tonight - so far so good.

The wean begins

Well, I removed one clonopin pill last night, with much trepidation. I know the medicine isn't supposed to be doing anything for him now, but I'm worried about his response. It's supposed to be a really hard med to wean, since it's so addictive. The doctor seems to think it should be no big deal, that I can remove 1 pill at a time, but I've read on the internet from people who've weaned this that it's pretty hard to do, and that I should remove 1/4 pills at a time. I'd rather do this when I have a few days off work, though, so here we go.

Last night was seizure-free, as far as I know. He seems to be in a normal mood today, so hopefully this will continue to go well.

Seizures

Chase woke me up at 3:48 this morning with a seizure. It's made me really tired today. He, however, got out of bed as soon as his alarm clock went off. Earlier this week he had a seizure at about 10:30 at night, and was across the room banging on the floor, he had almost pulled something off his toy shelf. Last week, he had a seizure where he had gotten out of bed and was banging on the wall. I'm worried about keeping the dog in his room with him. Will she get hurt eventually? His seizures never used to be this bad.