It. . .might. . .be . . .working. .

We started the Clonidine a while back. The first doses didn't work, at least not enough to get him through the night. I added a child proof door knob cover. It didn't work (b/c Sam wouldn't give up and door sucks). I took a long hard look at our medicine experience and decided it was time to re-evaluate. I do not feel that any of the manipulations of the Risperdal have helped Sam. I have weaned him off. I DID see some minor effects from the Clonidine. It helped him throught the first half of the night and it seemed to affect his mood during the first part of the day as well. He was a little calmer and happier. I spoke to the neurologist yet again and she gave me the go ahead to try slight increases in the Clonidine. Last night Sam got 1 3/4 tablets (.1 mg tablets) and he slept soundly until 4:15 am. It was great ( Of course, Maya still woke up but she usually just needs to check in). Tonight we go to 2 tablets and that is our limit. We are going to focus on this for now and just worry about getting Sam's sleep under control. Two people with no knowledge of his medication have commented on how happy he seems lately so I think that is a good sign. If it works, I will just have to re-train MYSELF to sleep through the night.

Obviously, wallowing in self-pity is not a long term solution so I have to make another plan. A reader suggested a child proof door handle cover and to be honest, I never thought of that. I bought one this morning and I am going to try it tonight. If Sam simply tries to turn the door knob, he will not be able to get out. The problem is, most of our house is absolute crap due to years of not being able to properly maintain it. The basement is gross, the windows are drafty, the back room is barely insulated. Along with that, none of the bedroom doors close properly. I have slowly been trying to replace the doorknobs that are so old they no longer turn. The doors also need planing since they don't quite match up witht he frames anymore. Sam's room has a door I fixed up a while ago but it doesn't quite latch close as securely as I would like. All it takes is a good shove and you don't need to turn the door know. So, if all Sam tries to do is turn the knob, it will probably stay shut but if he pulls, even without turning, it may open and then I will be back to hold the door closed. I bought a lock I can put on if necessary but I would liek to try all options that don't make me feel like a horrible person first.

I also bought Sam a long body pillow to try to make his bed more cocoon-like. I don't think that will have any major effect but the pillows were on sale.

Wish us all a good night's sleep.

No Sleep 'til Brooklyn

So it is not working. At least not yet. Sam has regressed back to where he was a while ago. He wakes around midnight and wants to sleep in my bed. I take him to the bathroom and put him back in his room. He yells and cries and tries to leave. I hold the door shut until he settles down. Repeat every 1/2 hour to hour for the rest of the night. At around 5 or 6 he will end up in our bed so he can grab an hour or two of sleep before school. It is too late for me at that point. He manages to stay awake with 2 meds that should make him sleep and melatonin. That is one messed up brain.

A friend at work suggested that I might have to put a lock on his bedroom. Then I wouldn't have to stand by his door most of the night. I know many families have had to do so for safety reasons. I just hate the idea. When I became a parent I never imagined locking my child in a room. But I know I may have to. If any of you have had to secure your child in a room at night please share.

I don't know what to do next if this doesn't change. Sam is holding it together since he gets that nap before school. But how long can a little boy last on so little sleep? I am trying to function on about 2 hours of sleep a night and I feel horrible. So far, I don't think it is affecting my job or the preganancy but how long can that last? I sort of snapped at my mom that other day because she said, " you really need you sleep; you're pregnant." I know she was just showing concern but in the moment it just made me mad - as if I don't know I need sleep? As if I am not getting any on purpose? If I had a solution I would go for it but I don't.

Sam has continued to have sleep issues this week despite my manipulating the things he already takes. I spoke to the neurologist again today and we are adding Clonidine. I have no idea if it will work. I am pretty much assuming it won't. Even if it does I am pretty certain it will stop working a few weeks after we start.

Sam continues to have episodes of chewing/lip smacking/teeth grinding in his sleep. My husband now thinks it might be seizures too.

I want to have hope because we are trying a new med and Sam is starting a new school but I really don't feel any. AFter a day of pulling rocks out of Sam's mouth, trying to stop him from throwing things at the ceiling, narrowly avoiding a major accident when Sam threw a boot at the dinner table missing the light fixture and my husband's plate by inches, and trying to explain to Maya that her brother just doesn't understand b/c he threw a shoe at her face, I don't have much positive left. He isn't being aggressive, it is all stim. This was all after a day in which he had lots of attention and lot of chances to work out his sensory issues. We played outside for hours - he went on the swing, jumped on the trampoline, and ran. Nothing turns down the stims.

Hopefully it will get better but here's the thing - the problem with throwing all your energy into trying everything is that eventually there is nothing left and you are really really tired.

I miss the little boy I had 3 years ago, before these stims came out, more than I can possbily describe.

Seizure?

Sam had an odd episode last night. He woke up wet, which hasn't happened in a long time, at about 1am. I took him to the bathroom and changed his clothes. I put him back to bed but he couldn't sleep. He hummed and bounced for about 2 hours. During that time Maya woke a few times (she tends to wake up hungry because she refuses to eat dinner - seriously, I can't get her to eat after 5 o'clock). I am sure all Sam's noises didn't help her relax. At about 3 am Sam came out of his room and I broke with the behavior plan and let him come to our bed like he wanted. Pregnant me was just to tired to fight him the rest of the night. He fell asleep in the middle of our bed and rested very well. It wasn't exactly comfortable for us but at least no one was crying. At about 4 am Sam started making an odd noise in his sleep. My husband thought it sounded like chewing but to me it sounded like lip smacking. Either way, it went on for a few minutes then stopped. Then it repeated a few times. He didn't wake at all.

I looked that up this morning because I thought I had read something about odd motor movements being connected to a certain type of seizure. Lip smacking in sleep or along with zoning out can be a sign of Partial Complex Seizures.

I called the neurologist about the sleep issue and to ask if the lip smacking sounded like a seizure. As I expected, she can't say for sure. We would have to do a video EEG to learn more. I am thinking about it but I have no idea if Sam could tolerate it. As for the sleep, she advised increasing the Risperdal slightly for the next few days to see if that helps. If he is able to establish a good pattern, slowly lower it again. IF it has no effect, reduce and try Clonidine.

I hope one of these options works but I suspect we will battle to insomnia demon for the rest of our lives. I am trying to see if I can spare a sick day from my maternity leave to take a nap.

The Monster Returns

Over the past two weeks Sam has started waking at night for increasing amounts of time. Last night he woke up at 11:30 pm and he has been awake ever since. We have not changed medications or supplements and we have not changed his routine. I knew we would be back here again. Every night since the behavior plan was put in place I have been going to bed with my fingers crossed. It started with middle of the night wake ups. I would take him to the bathroom just in case and then put him back to bed. Each day his level of protest grew. As he became more upset during the night it got harder for him to go back to sleep. Last night he went to bed at 8 and woke up at 11:30. Then he tried to come out of his room every 30 minuted or so. Finally, he gave up trying to come out at about 3 and settled for making noises and kicking his wall. At 5 he came out again and he was done for the night.

I am pretty much out of ideas. We have a routine, he gets lots of outside time most afternoons, he had plenty to eat, his room is a good temperature, he has a white noise machine. . so now what? I really am not convinced it is worth continuing to give him risperdal if is isn't going to help him settle down when he really needs to. I am going to call the neurologist but I don't know if this is one of her Saturdays at work. Not sleeping is not an option - for him or me. Clonidine? more melatonin?

Signs?

Do you believe in signs? I don't know what I think. But today I thought I was being pointed in a certain direction when I visited the new program Sam may attend.



Many months ago, one a particularly bad day I sat on my deck with my head in my hands and cried (this happened many times but this day was important to the story). My nearly 90 year old neighbor spoke to me a little later in the yard. She asked about Sam and about me. I don't remember how it happened but somehow in the conversation she offered me one of her statues of "the blessed mother". I think it came up because I mentioned that one of Mark's patients gave him a saint card for Sam and I asked what she knew about that one. How do you turn down the offer of a statue of one of your neighbor's most sacred figures? SHe gave me a very simple white figure of Mary. It is in my dining room and when I walk by I am reminded of all the things mothers go through. WHen I arrived at Sam's new program, which turns out to be housed in a Catholic School, th, essentially living with our hearts outside of our bodies. There was almost the exact same statue right out front. I realize that is not huge but it struck me as I saw it.



In a previous post, I mentioned hearing about an Episcopal church that has a service for families who have members with Autism. When I visited Sam's new program I found out that the church is about a block from the site and, in fact, they rent 2 classrooms there as well. I accidentally drove by in on my way home. Another sign?