Wednesday, December 30, 2009

EEG in a few hours

It is 4 am and in a few hours I will drive Sam to the hospital for his EEG. I was supposed to do this a while ago but the whole idea made me want to pass out in horror. Keep Sam up most of the night? Put electrodes on his head (still don';t know how they will do that)? I gave myself a kick in the pants a few weeks ago and so we are getting it done on our break from schooll/work. I got 3 different sets of directions on when to wake Sam so i went with the set that allowed me to sleep until 2 am (well, sort of since the baby woke at midnight). Sam wouldn't wake at first, he just slept on me for a while. It has been so long since he snuggled like a baby that I let him stay for about 20 minutes.

Then he started to wake. Oh boy. He wanted "night night". He hasn't slept without melatonin for weeks and TONIGHT he wants night night. He cried, he yelled, he hit me, he threw things. He even tried to lift me at one point to get me to take him back to bed (he is 4 1/2). This went on for nearly an hour and a half.

Finally, I calmed him down with a waffle. I hoped it would trick him into thinking we were doing our morning routine. It seems to have worked.

At 8 am the hospital staff will attempt the EEG. I am trying to have confidence that the staff are used to special needs kids. They must have methods to get them to wear the electrodes. RIght? I will be royally pissed if they can't do the test.

So what makes a good outcome? If he has seizure activity then the poor guy might need meds and we have to worry about these seizures. If he doesn't have seizures going on then we have no new options. Nothing to add to what we are doing (which seems to be getting us nearly nowhere). I honestly don't know what I am hoping for. From what I understand the mostly likely outcome will be that the test is inconclusive and we will just (still) be tired.

Has anyone out there learned anything interesting from an EEG?

Thursday, December 24, 2009

ZZZZZZZ - for Sam, at least

We changed to different Melatonin and upped the dose a tad. That seems to have done the trick. The type we tried came in a little glass bottle with a little dropper. 4 dropper = 1mg of melatonin. The dropper did not have a measure anywhere on it so there was no way to know if the dose was accurate. I switched to a different bottle (from the same company). The dosing is 2 tsp = 2.5 mg. Since 2.5 mg was our next dose, I gave it a try. Sam has slept through every night this week. He wakes early but I would rather have hims up at 5/6 each day than up racing around for hours in the middle of the night. The only problem is that Sam HATES the taste so I have to force feed it to him with a dropper every night. I have now ordered capsules that I can mixed with fruit puree.

Sleep seems to be benefitting Sam in a number of ways. The dark circles under his eyes are much better. In addition, his personality seems a bit different. He is more emotional but in a good way. He actually seems to feel it when he is scolded these days. He is more social as well. Even though he still doesn't play appropriately, he wants company; someone to sit near him while he stims. He also asks for "gickle" constantly (chase and tickle).

Now, if only I could get Maya to sleep soundly I would be one rested mama. Maya wakes at least twice a night and need a lot of comfort to get back to sleep. I would gladly bring her into our bed and just co-sleep but she doesn't want that. She wants me to hold her or to bring her downstairs to cuddle on the couch. The doctor told me to make her "cry it out" but the doctor hasn't seen Maya turn herself blue holding her breathe. I just don't have the heart. Maybe when I meet a deeper level of desperation.

Tuesday, December 15, 2009

A flicker then - snuff!

I felt a flicker of hope last week. The melatonin seemed to be doing the trick for Sam. He was sleeping beautifully. I began to imagine the possibilities - an overnight at my mom's or some other place. A vacation is still out of the question as Sam has no appropriate interests and he would run away if we were out in public but an overnight somewhere? With Sam able to fall asleep in a strange place? Not waking up and trashing the place and keeping us (me) up all night? The thoughts were uplifting. If we coulld get that far at 4 1/2, where might we be at 8?

He took a night off the melatonin on Saturday. He slept pretty well. I thought maybe his circadian clock had been reset. Sunday, he did not do well at all. Monday night I gave him the melatonin again. It didn't work. He was up from 2 - 4:30 hyper as ever - bouncing on his bed, yelling, laughing. He woke the baby multiple time and eventually he ran out an had to be taken downstairs. Neither Sam nor baby want dad when they wake at night so the burden is not shared. Light snuffed out.

I am giving him a higher dose tonight. If it doesn't work I am going to harass the neurologist. I am making it through work on very little sleep but I can't do this long term. I am wiped out, teary, and generally fed up.

Sunday, December 13, 2009

Curcumin - Straws - Melatonin

The newest addition to our supplement routine is Curcumin extract. I read a number of positive reviews of it so I checked with our doctor. She thought it would be a good addition. Supposedly it is anti-viral, anti-yeast, natural chelator, blah, blah, blah. I read a lot about it before making the purchase and it is very safe. In addition, it has been found to help a number of other medical conditions.

It is not a particularly expenive supplement but, of course, I had to buy the one from Lee Silsby that is supposedly formulated in a 'special" way so it cost a bit more. It is amazing how easy it can be to get the parents of autistic children to spend money.

Sam had a little trouble with bowels movements the first few days. It seemed to make him go and go. Not loose or anything like that, just frequent. He had a couple of accidents but he bounced back soon. I can't say I have seen any major changes yet. He has had good reports from school and his speech therapist said he seemed more emotionally connected. I am reluctant to attribute that to a supplement without giving it more time.

I am giving biomed a little bit longer. Sam will be 5 in April and if I haven't seen any major changes by then I am begging for meds. I never thought I would even have to consider medicating my child but here we are. He can't stop stimming. It is so distracting and addictive to him that it prevents learning and appropriate behavior.


Sam's current obsession is straws. He chews them, bends them, and drops them into various cracks. If it is warm enough to go outside, he drops them through the deck boards. If he is inside, he goes upstairs and drops them down the sides of my sweater trunk on the upstairs landing. I wish he likes something more appropriate but that doesn't seem to be happening anytime soon. Hours and hours of home therapy and the kids still won't play with a friggin' toy. Unless of course he is throwing it. He is happy to throw toys.


Two years ago, the developmental pediatrician recommended melatonin for Sam's sleep problems. I know it is natural and safe but I couldn't bring myself to give it too him. I was petrified of giving him anything that induces sleep. He often wakes and bounces on his bed for hours. Usually he eventually goes back to sleep. About 2 weeks ago he started running out of his room and wanting to "play" at 2 or 3 in the morning. That, on top of the fact that the baby hasn't slept through the night in over a year, wore me down. I gave him melatonin last week and it worked like a charm. He slept peacefully all night. He woke early but well-rested. I hoped a week would re-set him and so I didn't give it to him last night. He woke up briefly but overall he slept well. I didn't give it to him tonight either so I am a little anxious to see how he will do. I don't know whether he will need melatonin most nights or just every so often like a reset button.