Last night’s trial of clonidine was, well…
I’ll let my posts on Twitter tell the story:
The aftermath of four consecutive nights without sleep (well, three years, really, but we have a few good nights once in a while) has been brutal today. This is, by far, the worst stretch ever for us. Nik’s ability to handle even the slightest deviation from routine or expectation has led to a series of frighteningly explosive meltdowns. Nik’s sweet little face is covered with self-inflicted bruises and he looks like he was on the losing end of a barroom fracas.
We opted to hold off on the clonidine again until we speak with our neurologist and get a clearer plan in place and set some parameters about how long we need to give the clonidine before we call it a bust.
We’ have gotten some good feedback and suggestions from many sources about possible medications to explore. At this point, though, we are very limited in what we can give Nik because of his swallowing difficulties. If it can’t be crushed or chewed, mixed in with food, or doesn’t come in a liquid form we can’t try it with Nik right now. This rules out some of the medications we’ve heard so many good things about, relatively speaking.
Niksdad and I suspect there is more at play right now than just the sleep disorder and are working hard to get to the bottom of whatever it is. For quite some time now, Nik’s had chronically inflamed lymph nodes, enlarged tonsils (though no sign of active infection), and chronic fluid in his ears —sometimes resulting in infection, sometimes not. We suspect that the pressure, the shifting fluid, the discomfort of swelling in his throat —all of it— is exacerbating the problem by causing some obstructive sleep apnea. Not to mention the intermittent and unpredictable changes in Nik’s eating and drinking patterns. We see the ENT on March 2 and will be discussing a tonsillectomy. Until then, please send good thought and prayers for sleep.
Oh, and send coffee. Lots and lots of coffee!
Offering up prayers for comfort, support and most of all, some much needed rest for my friend. xoxo
Sending many, many sleep vibes your way tonight and wishes for plenty of strong coffee tomorrow.
many many many hugs
R is only sleeping thanks to Melatonin – its sooo exhausting darling sending you so many many hugs
I am sending those good thoughts for sleep. I’m so sorry.
What kind of coffee? I don’t know anything about coffee.
sending lots of hugs and virtual espresso…the strongest kind….
Praying tonight is a bit better and that you get to the bottom of this soon.
I was so hoping that would work out for you guys. Godspeed on getting to the bottom of this.
Are you guys taking turns catching up on sleep during the day so you can function? Are there trusted family/friends nearby that can watch Nik while you sleep? You know we’d all do it if we were near you! I’m so impressed by the fact that you’re still able to THINK!!!
Sending wishes of rest & caffeine…. XOXO R
There are no words— I simply want to say that I love you and pray this eases soon. xxk
Could it also be from whatever other meds he’s on. We’ve been the “rebound” route with my eldest on Risperdal… where it created the symptoms it was to ease.
I admit… waiting for little boy to sleep at night is frustrating… the flapping etc is up… BUT… not seeing 3 or 4am most nights, is worth it. So no more melatonin nor risperdal for him.
Ugh, I’m so sorry. Sleep deprivation is one of the worst feelings in the world. I’m so hoping the doctors can figure something out for him and you both. Sending positive thoughts your way.
I’m so sorry. We had a very rough start to the clonidine too, it seemed to have the opposite effect on John. Our neurologist adjusted the dosage three times, and it does seem to be working at last. I know you are exploring other issues apart from sleep, but I hope it gets better sooner rather than later and you all get some sleep soon.
I’m so sorry you guys are having such a hard time I’m sending gigantic hugs to you and Nik. I will keep u guys in my prayers, it will get better soon.
love.
love.
love.
& sleep.
& coffee.
Sleep deprivation is so hard because you just lose the ability to function. Lost of love, wishes for sleep, and as much coffee as you can handle.
Just wanted to let you know that I’m sending good sleep vibes to you guys! I hope you find something to help. Out of all the stuff we deal with, I think not sleeping is the absolute hardest. Hang in there!
I have adult Asperger’s with some equivalent symptoms to your son’s. (I am 60.) When I am in a state of thrashing, sobbing, hitting myself, etc…it is largely because of what I have eaten. The reaction is not immediate, but can take as long as 24 hours to manifest (more often 12) and does not go away for a good 36-48 hours. So, anything that he eats on a daily basis would not be seen as a candidate for a cause because the symptoms would neither arrive or depart in a timely manner.
I cannot eat the following (and it is a large list, but without these foods I do not suffer the “hitting myself” syndrome:)
Gluten, including oats; see celiac sites for how to avoid gluten
ALL animal protein
the nightshade family of vegetables (most gluten-free products contain nightshades, so beware)
Some nuts, most legumes
Anything that contains protein, either animal or vegetable, that I eat more often than about once a week, I will develop this reaction to.
My personal diagnosis of this is that it is an intestinal permeability problem; partially digested proteins (peptides) leak through the intestinal wall, get in the bloodstream, and travel to my brain, where they inflame it and cause the symptoms that are so similar to your son’s. My physician agrees with me that I have diagnosed it correctly; while I have ASD, my powers of observation and pattern recognition are acute.
While this diet is very restrictive, adhering to it is FAR preferable to the symptoms that I suffer when I deviate from it. I think that many people with ASD have intestinal permeability that is worsening or even causing many of the symptoms. I am personally pursuing finding alternative means of correcting this condition and will advertise when I have found a solution. To date, the only solution I have come up with is the partial one of avoiding those substances that cause me problems, but as I said, the avoidance is far preferable to the consequence of non-avoidance.
I also take gabapentin, tryptophan, and dyphenhydramine at bedtime, in sufficient doses to get me to sleep. That is in addition to avoiding the foods; if I do not avoid the foods, there appears to be no amount of drug intervention that will allow me to sleep. If I had not found this combination, would likely have put a bullet through my head by now.
I have extreme noise sensitivity as well as touch sensitivity. Isolate your son in a completely quiet environment; a pink noise generator can help a lot, as can the hemisync CD called Super Sleep, run quietly in repeat-all-night mode. Trying to “comfort” your son may actually cause him more stress because of the added stimulation on top of what he is already dealing with. I read of one family who put their autistic child by himself in a bathroom, that was painted all one color all over, with nothing on the walls, no sound, no nothing; it was the lowest stimulation environment they could come up with. And it helped immensely. It is not “cruel” to isolate an autistic child as long as he can’t hurt himself; it is kind in that it lowers his stimulation level to one he can deal with. A friend with an autistic daughter learned not to go into her infant daughter’s room after she woke up, for a good half hour after she heard her cooing, because to do so would upset her greatly. We have to be careful to not assume that what comforts a normal child will comfort an autistic one. We must experiment, observe, and act on the observations.
Find a physician who is willing to research testing your son for pyroluira. I had a large improvement upon diagnosis and treatment of this genetic disorder. MDs will not have heard of it (my NMD suggested the test) and may say it does not exist, because it cannot be diagnosed via blood testing. Research it yourself first so you can go armed with data and questions.
Best of luck. It is a knotty problem.
Sorry, mis-spelling: pyroluria. Also known as KPU.
Wow, Beatrice had a lot to say. I was only going to ask if you’ve heard of a natural plant hormone called meltonin which is often suggested for sleeping issues. It can be put under the tongue to be dissolved. My kids use it and it works pretty well. I got it at a GNC store
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