One step forward, two steps back

Wow....what a long time since I've posted. Chase is weaned off the Klonopin, we've raised the Keppra and he seems to be regressing.

About two weeks ago he proudly showed me his curtains when I was putting him to bed. I guess the heater vent blowing the curtains was bothering him, and I didn't know how much so until he took scissors to the curtains. I was so angry I couldn't even talk - it made me think of what a kindergartener would do, not a 16 1/2 year old boy.

The next day (or two days later), I was working out in the yard and he came out and yelled at the top of his lungs that he had flooded the bathroom, that he had tried user the plunger and that water was spilling all over the floor.

He wants to be independent and wants me to leave him home alone, but he pulls stuff like this. What happens if I'm not home and something sets him off?

We did try letting me go to the Post Office yesterday and leaving him home for 15 minutes - but I had him on my cell phone and he was on the home phone. We talked all the way there and back, except he was using an earpiece that kept falling out of the phone and he couldn't deal with it, and hung up on me 5 minutes before I got back.

At 2:20 this morning, he had a really bad seizure - he was on the floor, his head was banging into the shelf, and his comforter was twisted around his legs. I had to call for help and Mike came and swiped the magnet.

Well, that's it for today's rambling.

Signed - Jedimom2

My post to a news website regarding Jett Travolta.

Jett Travolta passed away the morning of January 2nd - apparently he had a seizure, hit his head on the bathtub or the toilet, and passed away. He was born April 13, 1992 - 4 months before Chase was. I had no idea Jett was suffering from seziures and developmental disabilities, and my heart goes out to the Travoltas.

There has been so much negative news about this incident - and last night I got really mad reading one about the nanny - asking what his qualifications were to care for a person with medical needs. Here is my rebuttal to the newspaper:

There are thousands of children who suffer from seizures - even as devastating as Jett's - that are cared for by "untrained individuals" - their parents. Any individual can be trained to care for a child with seizures - from their parents, to their babysitters, their teachers, and their friends.

Not every seizure medication works - I should know because I have a 16 year old son who has suffered from epilepsy since the age of 3. He has taken every seizure medication the doctors suggested, including at one time a cocktail of 4 different medications - to the point of the doctors calling him overmedicated. Even then, his seizures have never been controlled. I personally know of at least 2 other individuals who were taking seizure medication that had a seizure in a bathroom, hit their head and died from it.

It is entirely the Travoltas and their physician's call as to what medications he should or should not have been on - and whether Jett was autistic or not. I personally have asked for 4 second opinions about my child because I've felt he is autistic - the medical community would not agree with me.

People should never be so quick to judge until they've walked the walk those parents have been through - you just can't know - and it's really no one else's business.

This family and the nanny have had their worst nightmare come true. I personally have spent 12 years listening to my son sleep over a baby monitor- listening for seizures. Trust me - there is no way that I could have heard every seizure once I went to sleep in the last 12 years - it is not feasibly possible.

This poor family needs to be left alone to grieve - and all the attacks on them need to stop.

Oh - and you know what - I am a Scientologist. I have NEVER been told by the church that my son should not take seizure medication - nor that I should not seek medical advice.

Please let this family grieve their loss - and stop the attacks!

It's been a week from hell!

The last pill has been sheer hell! I dropped the final pill on Monday, December 29th. This last week has gone past in a blur of exhaustion.

First off, I found some websites that basically told me that this drug is so physically addicting, that is was like Chase is a junkie going through withdrawal, and that giving him valium to wean him off was preferable, because it wasn't as addictive as this freaking clonopin is! Man on man - had I known when the doctor wanted to put him on this, I would've flat out said no!

The first night - Chase tossed and turned all night and had an outrageous seizure at 12:33 am. I swiped the magnet over his device and his seizure actually got worse - he was jerking and bouncing all over the bed. I game him an Ativan (lorazepam), and that stopped the seizures, but didn't settle him down much for the night.

Night 2 - restless all night again. I added a calcium magnesium drink, melatonin & 5HTP. However, we went to a Mexican restaurant and Chase ate steak again. He woke up with hives again and I had to give him more Benadryl. So I'm thinking - no more steaks - that's it!

Night 3 - New Years Eve - He had a really bad seizure at 11:09 pm and I gave him another ativan. At 12:01 am the fireworks started going off outside and he had another seizure - then another one at 12:49, and another one at 2:09 am - at which point I gave him another ativan. I think that was the worst of the wean.

Night 6 he had another really bad seizure at 11:59 pm.

Now if I can just get him to learn how to go to sleep without the clonopin. I'm no longer automatically giving him 5-HTP & melatonin - but I did give him Emergen-C several times a day for 3 days to support his system. The melatonin or the 5-HTP was giving him headaches, so I'm only giving him that now when he can't sleep. I gave him 1 pill last night.

He is still having behavioral issues though. Last night he chewed me out for reminding him to brush his teeth and put on deodorant. Tonight he argued with me because he didn't want to take a shower. This morning it was none of my business what his body was doing.

Well, the website I found said it could take up to 14 days to get through this pill drop, I'm hoping he'll settle down soon. This last week has been exhausting and I'd like for him to start getting some good sleep soon!