Friday, September 3, 2010

How do I Bribe the Sandman?

We are back in territory I had hoped we left long ago - sleepless night. Sam used to wake frequently as a baby but he went back to sleep pretty easily. He also went through phases when he would sleep through perfectly. Just before he was 2 1/2, he began having a lot of trouble sleeping. He insisted on my staying with him while he fell asleep. Then he would wake in the night and want the same thing. Eventually he stopped going back to sleep for HOURS. At the time I was pregnant with Maya. I was beyond tired. One night I never even go to go to sleep because he woke so often. Then I taught the whole day. At that point I decided Sam had to cry it out. It worked like a charm. THe first night was tough but by night 4 he was right to bed on his own. He still woke in the night but he stayed in his room and on his bed until he fell back asleep.

At 3, Sam began waking more and more. He would stim on his bed for hours and look like a zombie the next day. On occasion he would get out of bed and I would have to settle him back down but usually if I repeated the bedtime routine, he would go back to bed. Even if he couldn't sleep, he would stay in his room. At that point, Maya developed sleep issues. It was pretty much my fault. When I went back to work, my milk supply dropped (for my body, pumpin gjust doesn't keep my milk flowing the same way nursing does. Plus, as a teahcer, I can't always take a break and pump when I would normally nurse). I insisted on nursing at night because I wanted to give Maya all the health benefits for as long as possible. Since she wasn't getting a great feeding from me in the evenings, she would wake a feed at night. She continued long after she was weaned and really only started sleeping well a few weeks ago.

I don't remember exactly when I started Sam on melatonin but it brough some peace to his night. Every so often he had a rough night but not with the same regularity we used to see.

At the beginning of the summer Sam began waking again despite the melatonin. It sook my nerves and sent me into a panic - if the melatonin stops working will we have to turn to a medication to get some sleep? When we did the Adderall experiment, things seemed to even out. He slept better in July. Of course then we had the side effects and stopped the Adderall. The first few days off he still slept fine. Just over a week ago he began to have some problem. he went to sleep well but woke sometime between 2 and 4wanted my company while he stimmed for a few hours. Most time he wouldn't go back to sleep.

This past week Sam also began having trouble falling asleep. He screams if I leave the room before he falls asleep. Luckily this seems to only take 20 minutes or so. Then he wakes around 1 or 2 and cries for me to come back. He then proceeds to NOT sleep until morning when he falls back asleep for a couple of hours. I have to go to work at that point (or take care of Maya depending on the day) and try to function feeling like a zombie.

I don't know why this is happening (besides the obvious "autism" answer. Has he built up a tolerance to melatonin? Has being out of a routine (no school in August) been too much for him? Is he going through something physically that he can't express? I just don't know. What I do know is that I can't do this much longer. I need to be able to do my job well and Sam needs to be able to start school again next week with the ability to learn to the best of his ability. I don't know what next steps to take. Slow release melatonin? give it time and see if he does better once school starts? Beg for Clonodine? I don't know but I need some kind of plan. Letting him "cry it out" is no longer an option because he can get out of his room (climb the gate).

Any suggestions are welcome.
-We have a bedtime routine
-he takes 3-4 mg of melatonin
-he is still on Risperdal

3 comments:

AutisticWisdom said...

As sad as it is, it is somewhat comforting to know we are not alone in this problem. When we switched Alanna from a crib to a toddler bed, her sleep was terrible. She was up bouncing and screaming, waking Tyler and us and then exhausted the next day.

A few things helped:
- Stronger bedtime routine
- Removed the toddler bed and replaced it with foam mattress on floor - still comfortable but no bounce so she can't stim with it
- Eliminated refined sugars out of her diet - this seems to be a huge trigger
- Increased melatonin - our pediatrician told me up to 20 mg is safe. Alanna takes 9 mg most nights and sometimes up to 18 mg.

She sleeps through the night 3-4 nights out of 7 and 3-4 nights out of 7 she wakes and needs melatonin to go back to sleep. We go in, give her the melatonin and leave. She is quite happy to stim on her own. We have never slept with her though so it has probably never occurred to her this might be an option.

As for clonidine, we also asked about this and the pediatrician was willing to give it but urged us to try the melatonin one last time with increased dosage. This schedule is tolerable so we are not going to medicate her.

The other thing I found tends to work although is not always possible to physically exhaust her. She wakes and stims because she craves stimulation. If we stimulate her a lot before bed with vestibular play, lots of touch, bouncing, running, etc., she tends to sleep better. However this is somewhat exhausting for us and just isn't possible every night. Maybe we need to hire a personal trainer :p

Don't beat yourself up if you need to go to medication to get a good night's sleep. I know Sam has had a lot of meds lately but the reality is, if he needs it to sleep you need it for your sanity. Plus, he isn't going to be able to learn if he is tired.

MJ said...

We have had some of the same issues with our twin daughters (but strangely not the youngest). They will normally, with the help of melatonin, sleep relatively well. But then there are the times when they go to sleep only to wake up hours later, screaming and stay up the rest of the night. And these episodes can last for weeks or months at a time.

We also had the crying at bed time problem for a while but fortunately we haven't seen that in the past year or so. Instead they seem to be into delay tactics as they try to ask for everything possible to postpone going to bed.

When the twins are up during the night or when they were crying at bedtime, we basically just get them to to stay in their rooms and leave them alone as much as possible - even if they are screaming and/or crying. It sounds harsh but it seems to be the best action to discourage the behaviors over the long term.

The trick is trying to tell the difference between something that is bothering them (teeth coming in, stomach hurting, etc) and just behaviors caused by autism. The behaviors can be extincted given enough time but distinguishing those from other problems can be very difficult - especially when your children are mostly non-verbal.

I think it is best to go with your gut here. If something seems to be bothering him, try giving his some motrin right before bed and see if that helps. Or try switching what he eats for dinner and make dinner either earlier and/or later to see if something with his stomach is bothering him. Make a list of what might be bothering him and then systematically go through the list and try to address each point, one item at a time.

It isn't a quick solution but it has worked for us in the past. For example, one of our sleepless incidents was caused by a supplement that we were giving the children before bed. This particular one has the ability to make kids irritable and hyper and, even though they had been on this one in the evenings for a while, something changed and it was giving them problems falling asleep. We started giving it to them first thing in the morning and the sleep issues disappeared.

But overall, I think the secret to overcoming the problem is to tire them out - mentally, physically, and sensorially (not sure that is a word). The problem, of course, is that each single child can have twice the energy that we do so by the point that they get tired, we are exhausted. In the summer, a combination of all day ABA, swimming, and having them outside seems to do the trick for the twins. I don't know what we are going to do this winter.

I believe that you can go higher with melatonin (as AutiscWisdom pointed out) but that can sometimes be a double edged sword, at least for my children. If we give them too much it makes them too tired too quickly and they get cranky and fight going to sleep. If you give them too little they shake it off and then they will be up for hours. We started out with about 1/4 mg and have slowly gotten up to about 1 mg but have never gone above that level. We have not had much luck with giving more melatonin during the night.

I know there are some other things you can try with lighting, but my knowledge in that area is limited. You may want to look up some of the lighting tricks used with seasonal affective disorder (low lighting in the evening, simulated dawn in the morning, natural lighting during the day), as these SAD treatments try to deal deal with a related problem (disruptions of circadian rhythms / biological clock).

I don't know of anything else that might help besides remembering that these sleeping behaviors will eventually pass. I know that is a very, very small comfort when you are utterly exhausted from not sleeping (been there quite a few times), but something will eventually change and you will get sleep again.

KAL said...

I am really sorry to hear it. Maybe talk with his neurologist again. When ours put John on the risperdal he had us keep the clonidine dose too. It's been working like a charm (knock on wood) for more than a month now. He still wakes up around 1 or 2, but falls immediately back to sleep until morning. Good luck, I know how very very hard this is!