The Witching Hour

It's 11:30, do you know where your little witch is?

One of the little gifts of autism that keeps on giving for us is the insomnia and bad sleep patterns.

We've been through it all in the middle of the night:  sleep apnea, night terrors, infantile spasms, teeth-grinding, bed wetting, seizures. 

Sleep is no longer restful for me; not when you wrestle a 48 pound back-kicker all night to give you an inch of your pillow back.

It's hard to get this little guy in bed and asleep by 11:00pm.

The 7:30pm and 8:00pm catnaps don't help either.

If he goes to bed, say 9:00pm, he's up at 11:00pm and it's even worse than keeping him up late.

"He walked into the party, like he was walking on to a yacht.

His (witch) hat strategically dipped below one eye, his jammies were apricot.

He's so vain.  He probably thinks this post is about him, he's so vain."

All Jacked Up and No Where To Go

Not sure what to do about divvying up the dosage of the Doodle's medication. When I give him the larger dose in the night, he won't sleep for HOURS. He lays in bed thrashing around, kicking, crying, screaming. It's not so bad when I give him the morning dose because, well, he's busy being 3. But at night, within 5 minutes of giving it to him, he's climbing the walls and he doesn't come down off his Depakote/Keppra Cocktail High for at least 2-3 hours.

Tonight around 8:00 pm I had to drive to my bosses house which is about an hour away. My mom drove with me and we brought the Doodle since I had just given him his medicine and we knew he wouldn't be going to sleep anytime soon--he was freaking out in his car seat; doing a weird scream, covering his ears and shaking his head back and forth so fast I thought he might jar something loose. My mom got in the back seat with him and tried her best to entertain him. She fed him and played with him. I couldn't get home fast enough. What was I thinking? I keep having these moments where I can't believe I brought him somewhere and regretted it but it was too late to un-do it.

I've read on the Epilepsy.com website from real people with epilepsy how mind altering these drugs are; that they cause ringing in the ears, anxiety, irritability, insomnia, blurred vision and many more side effects. How can I possibly begin to tell what the Doodle is feeling or which side-effects are affecting him? I know they make him crazy. I know they make him anxious and unable to sleep. But what else?

I've talked to the Doctors about spreading out his dosages, so that I am not giving it to him all at one time but they don't think that is a good idea. I could try switching his medication to a different one...but the side effects of those are said to be even worse and could be more life threatening.

His seizure activity has been much less than usual. We had a few completely seizure free days and then just a few break-through seizures here and there on the other days. Today he only had one that we know of. Much better than the previous 40-60 per day we were seeing.

Although, I'm still waiting for that other shoe to drop.

A Shit Sandwich for Breakfast, Lunch and Dinner

Are you comfortable?

Get a cup of coffee and sit back this is going to be a long one.

11:00 p.m. last night and the Doodle was still wide awake. He had just had another seizure so when I say wide awake, please don't confuse that with being alert, aware or with it. He was just very awake. His eyes were heavy and you would think that he might fall fast asleep at any moment. He looked drunk. Just as he would start to dose off, he would startle himself back awake or a Nurse would do that for him.

They wanted to try more Benadryl. I said no. The first two doses had not worked and now we were just overdosing him. He'd been so pumped with sedative and anti-seizure medication that he was freaking out. In the Doodle's 3 years on this planet, I can honestly say I have never seen him behave that crazy or yell that loud. He was kicking, screaming, biting his hands, hitting himself in the head and thrashing his body around the hospital bed while I tried to hold him. They had to remove his IV.

So they decided to try a sleeping agent, Chloral Hydrate. The name reminds me of Chloroform that you always see the bad guys use on a cloth to knock out their victims in the movies. It just sounds toxic like something you should not give a three year old. I was so nervous that it would have the paradoxical effect on him. But, at this point I was willing to try just about anything. I have to confess when they brought in the sleeping medication, I had thoughts of how nice it would be if I could have some too. At this point I would settle for a Tylenol P.M. and some bad chamomile tea.

So the Chloral Hydrate worked, kind of. He slept pretty soundly from 11:30 p.m. to 3:00 a.m. and then he woke up screaming. He was awake but still pretty out of it from 3:00 a.m. to 5:00 a.m., and he had seven of the little head drop seizures during multiple reruns of Dora and the Wishing Star. I had some wishes of my own for Dora.; like shut the &^%$ up! That little girl can talk.

He fell back to sleep until 8:00 a.m which was great except it was hard for me to get any real sleep; I never knew my body could still contort that way. The Doodle likes to sprawl out.

He woke up a little cranky and hung-over and had another grand mal this morning. After 45 seconds the Nurse was screaming for someone to bring her a shot of Ativan STAT!!! I kept waiting for her to grab the crash cart and paddles like I've seen in my doctor shows.

Then he came out of it. This one barely lasted a minute. He was laying on his side, coming out of the seizure and she was still asking for the shot. I was like, "Uhm excuse me? You are not going to give him that are you?" And she said, "Yes." And I said, "NO! He stopped seizing. He doesn't need it." She said, "No, he's still seizing and it's almost been two minutes."

"No. He's not. I've seen him have almost 100 of these now and he's done.", I snipped.

She said, "No. He's not responding..."

And then I lost it a little bit. Shame on me.

In my best, most stern and tactful voice I could muster without being the Bitch I'm known for I said, "No! You don't get it. He's always out of it after a big seizure. He's postictal. It's what happens after he has a grand mal."

I couldn't believe I was talking to a Nurse.

She told me since his eyes were rolled back when she lifted his eye lids, he was still seizing. Then we argued some more. I told her we needed another opinion.

She put the syringe down by her over-zealous side and called for the other Nurse. A nurse I actually know outside of the hospital and trust. The Trusted Nurse came in quickly and asked, "What's going on?"

The Other Nurse, still armed with the shot, said, "He was still seizing and I need to give him this Ativan but the mother doesn't want me to."

The Trusted Nurse looked at him.

"He's not seizing anymore." she said.

I just looked at her and said, "Thank you. She wanted to give him more narcotics that he doesn't need and I can't have another day and night like yesterday unless it's going to save his life."

The Other Nurse immediately got defensive; trying to explain why she thought he was still seizing. I just held him and told him it was going to be alright, even though I know it is not.

Hospitals are pretty good for the most part. It's the closest thing I've been to a Bed and Breakfast in a while so maybe my expectations are little high. And I'm not just talking about the bad food. I see the bill and it's the most money I've spent for a nightly stay anywhere in my life time so I guess I want it to be the best it can be. You want to at least feel like you got the best care possible.

My biggest complaint with hospitals, and if there are any nurses out there please listen. This is just my feedback but have you ever heard the saying, let sleeping dogs lie? Well, if you have a wound up insomniac Doodle Bug who has not slept for 24hours, it might be a good idea to tread a little lightly. You don't need to enter the room every 14.5 minutes like gangbusters-- marching around, flipping on lights. If at all possible, do everything you need to do at once--take the vitals, change the IV bag, give the medicine, reset and reprogram the really loud beeping machines, take out the trays or what-have-you and GET THE HELL OUT and stay the hell out unless it is absolutely necessary to come back in. I'm not sure why all of that needs to be spread out so much. Multitask.

Every time the Doodle would finally fall to sleep, the nurse would barge in. I know she was just doing her job but it seems like it could be done more respectfully and mindfully.

Late morning came and all I could wish for besides and improvement in the Doodle's health was to get the hell out of there. There was nothing that they were doing for him that I could not do at home. I can just as well watch him have seizure after seizure and save the $2687 per day ++ in the comfort and privacy of HOME.

The worst part about epilepsy is that it is individually based. It affects each person differently and to varying degrees of severity. There are different causes and triggers for everyone. Each individual responds differently to the medications. Each epilepsy case is different. Like finger prints, no two are exactly alike. Doctors do not know much about it. There is so much to learn.

So we're home. The Doodle has not had another grand mal since this morning but he continues to have the head drops and now he's severely constipated to top it off. He was always a pretty regular kid when it came to pooping. Now, with all of the influx of sedative and anti seizure medication, it has slowed down his system. His stomach pain and discomfort is just one more thing we can add to the Doodle's list of health issues. He's so backed up that even a glycerin suppository did nothing last night.

Two steps forward, three steps backward. We're back to square one, hoping he doesn't hurt himself on the tile. Praying he doesn't have another 10 grand mals in a row. Looking for answers. Relying on doctors and medicine. And, my favorite one...

Waiting.

The Calm Before the Storm

I'm sitting in a hospital bed right now holding a very sick little Doodle. Things went from bad to worse last night after his second grand mal seizure. He had seven more. This is the Doodle's record. Nine big ass-kicking grand mal seizures in 12 hours. He is fried.

We called UCSF and they told us to bring him to our local hospital's emergency room so that they could give him a sedative drug meant to stop or interrupt the seizures. They were coming almost every hour and they were horrific.

The Doodle is very sensitive to sedation drugs. They have the opposite effect on him. Valium hypes him up. So now we sit here, watching the Doodle bounce off the walls not sleeping. Our little insomniac is screaming, totally freaked out yet so tired he can't stand it. All he wants to do is pull his IV out. He didn't sleep all night. None of us did. The irony is being tired can bring on seizures...

The last week he had virtually no seizures. It was awesome. We had our baby back. His entire mood and spirits were up! He got a taste of what it must feel like to feel good.

I thought the medicine was finally working. Part of me, the wishful part, thought maybe he had outgrown them. It's possible right? Possible but not likely.

It's as if the anti-seizure medicine had been suppressing the seizures but then pissed them off in the meantime. Hell hath no fury like a pissed off seizure. Now they were catching up. Never, ever, has the Doodle had this many grand mal seizures in one day. His high score was 4 in one day and that was rare and then he didn't have another one for a week and a half.

The two doses of Ativan have done nothing. You would think they would have knocked him out. Nope. Wide awake. They even tried some Benadryl. Nope. Still awake. Every time he starts to fall asleep, he jolts himself awake and then screams. Almost like he's getting an electric shock or having another seizure. We can't tell and they do not have him hooked up to an EEG; so we do not know.

They told us they were going to transport us to UCSF because they do not have a Pediatric Neurologist here and now our nice new doctor is there anyway. But UCSF declined. They said there is nothing they can do for us there that they can't do here. Basically, there is nothing you can do for seizures except watch and wait and then throw medicine on them and hope for the best. I'm not going to take this personally.

I wish they could at least tell us why this is happening. What is causing these seizures? There is something very wrong with the Doodle and we do not know what it is. The seizures are not the disease but a symptom of another disease or so I read.70% of epilepsy cases never learn the why...it just is.

They've once again increased his medication dosages, so we will have to wait and see. As for how long we will be in here, I do not know. He's already had two grand mal's here at the hospital. I'm not sure the pissed off seizures are ready to stop any time soon.

They are talking about doing a spinal tap. I can't imagine that so I am trying not to think of that right now. This would be to see if he has Meningitis. Wouldn't he have some other symptoms? He has none. Just seizures. I had Jim google Meningitis. It's a pretty scary viral infection.

Please say a prayer for the Doodle. He can use all the prayers he can get right now.

Thank you.

Our Little Insomniac

One word to describe last night. BRUTAL...

I truly felt tested and punished all at the same time. Dominic would NOT go to sleep. We went to bed at 9:00 and he was wound-up to the point of madness. The anti-seizure medicine is making him crazy. One of the zillion side-effects is insomnia. Great. We tried everything: the bottle, the chewey, the blankie, the hand in my shirt, the deep-pressure knee rubbing, the Backyardigans, nothing worked. He cried and whined and kicked and screamed, completely inconsolable. Completely insane. I put the pillow over my head and he thought I was playing peek-a-boo. Throw in our meowing-in-heat-whore-of-a-cat, Coco, and you have the makings of One Flew Over the Cookoo’s Nest Part II. 4 1/2 hours later, he was finally asleep.

The Doodle has never been a good sleeper. He has always been somewhat of a cat-napper. Even as an infant, he would always startle himself awake. Now, looking back, I wonder if those levitating startles were some type of seizure…

Those who know me, heard me say a million times over that this time around I was going to do things differently. This time, the Baby was NOT going to sleep with me until he’s 6 years old. This time, the baby was sleeping in his own crib whether he screamed or not. After all, it gets much easier the second time around right?

And so it went, Dominic being the lightest sleeper in the history of babies would not fall asleep on his own. I breast fed, so he would fall asleep on the booby and then wake up the minute I tried to lay him down in the crib. I could sometimes get him to sleep on his own in his swing. So for the first 15 months of his life that is where he would “nap”.

Dominic was always a loud snorer, one of the characteristics he picked up from his father…we used to think it was cute how loud he would snore and then he would stop breathing and it stopped being cute. I noticed throughout the night how he would stop breathing like he was holding his breath for 10 seconds or more. I did my Web MD self-diagnosis and determined that the Doodle had (severe) sleep apnea. As he got older and his tonsils and adenoids grew, the sleep apnea got worse and worse. I would sit and count the seconds he wasn’t breathing and then shake him awake so that he would breathe. This went on all night long. No one was getting any sleep with this routine. Remember the part where I earlier swore this one would not sleep with me? Well, that went out the window. He has always slept with us and basically, I have not had any good sleep in almost 3 years now.

After the seizures started in January, we thought it was a possibility that the sleep apnea and lack of oxygen could be a potential cause—so we had his tonsils and adenoids removed. In the hospital after his surgery, I had to lean down and put my ear next to his mouth in order to hear him breathe. No more snoring like a tractor from the Doodle. The surgery completely worked! I could now cross Sleep Apnea off of his laundry list of medical issues. Yay. But, unfortunately, the sleep apnea had nothing to do with the seizures. The seizures kept coming, more and more and continue to come with a vengeance.

I took this picture of Dommy today sitting still for a minute wearing his “helmet”. He doesn’t cry and fight me anymore, he’s completely used to it now. I ask him when he wants to get down and play, “OK, what do we have to put on first?” and he points to his head. This bike helmet didn’t used to be white. It used to have a blue plastic coating all over it until he’s fallen and hit his head so hard, so many times, that the plastic has busted off.

I used to wish the Autism away. Now, in retrospect, I would gladly trade the autism for the seizure condition any day. So if you see me, be gentle. The Doodle and I have matching dark purple circles under our eyes for a reason. They tell a special story.