It’s been a beastly week around here in terms of Nik’s Lamictal withdrawal. As the dose tapers downward and the cognitive abilities soar upward —well, it’s a delicate balance and something’s got to give, right? Nik’s decided sleep is the thing most easily dispensed with; only trouble is he didn’t ask my opinion on the matter. I am firmly in the camp of those who feel that sleep is non-negotiable. Unfortunately for me, he’s a master negotiator.
I’ve been tired and whiny; my body is out of kilter and my moods have been swinging like Foucault’s Pendulum in a storm of magnetic particles. Niksdad has been buried in schoolwork, clinicals, and paying work; on his one day off he is ensconced in books and —much as I love him dearly —utterly useless in providing any sort of break for me.
In a desperate attempt to minimize some of the middle-of-the-night energy surges and sensations which have been waking Nik between one and three each morning and lasting for several hours —or which simply result in starting our day at those insanely early hours— we’ve shifted Nik’s med schedule a bit. Unfortunately, it seems to have a strong impact on either the middle of the night or bedtime; a bit of a watered down Sophie’s Choice, if you will.
Today, with the shift in the schedule and the subsequent slight (and I mean ever so slight) overlap in doses, Nik’s broken out into THE RASH again. Good gracious! It’s getting to the point that I’d be just as happy to stop the meds cold turkey and tough it out for a week or so. At the rate we’re going —given the upsurge of undesirable symptoms which accompany each dose adjustment —this hell could last another twelve weeks. Unless something seriously changes, this mama isn’t going to make it that far.
Of course, the flip side to all of this is the sudden increase in Nik’s appetite, social interactions, blossoming personality, and expressive language. He’s taken to drinking Danimals yogurt drinks in lieu of a snack via his feeding tube; he’s even allowed me to feed him Greek-style yogurt (which is quite thick, like sour cream) with cherry puree mixed in —and let the spoon enter his mouth instead of just licking it. He’s learning to identify colors and shapes and sort things (some). He’s requested toys and his shoes completely spontaneously —and in context; he’s beginning to master the ability to make choices; he expresses “No!” —perhaps not so articulately as I’d like but very clearly; he’s helping to clean up his toys, taking turns, and learning to wait. It seem as if things are happening so rapidly that it’s hard for me to keep up and remember all the changes!
But the greatest gift for me in watching Nik’s rapid development is his sense of humor; he has an apparent love of the absurd. I’d try to explain but I think this will illustrate it better than my words could ever do:
I mean, who knew the letter E could be so darned funny??
I’m so sorry the nights are so difficult. We all need our sleep, and it’s just unreasonable to go without. I wish I lived closer, I would come and give you a night off, though I suspect the wise and wiley Nik would absolutely not settle for anyone less than his dear old mom.
(loved the video!!)
Nik’s grin in that video is just precious! Oh my goodness…
I’m so sorry about the sleepless week. How wretched. What exactly WOULD happen if he went cold turkey, do you suppose? Or perhaps too risky to even think about asking…
Sorry about the sleepless nights. Having gone long stretches (in my much younger past) of working 120 hour weeks (you really appreciate the rest of the 48 remaining hours in a week), I know how essential sleep is to sanity.
We go in spurts of sleeplessness around here at times, but fortunately it’s usually sporadic. Hope Nik settles into a much better routine soon. I assume you’ve tried melatonin for this (I think you have, but I’m too lazy to look back thru your other postings)? It doesn’t have much effect on Buddy Boy, but some people get some sleep out of it. Thanks for stopping by.
Joe
Nik’s smile is gorgeous. Does he give it to you in the middle of the night too?
The things you write about what he is learning and expressing are amazing!
And I wish you sleep. I wish both of you much, much sleep.
Niksmom,
We’re going through sleepless nights over here, too. But I think it’s the diazepam, not the lamictal.
I’m so glad to hear about all the gains that Nik is making! I seem to hear that a lot – that kids improve cognitively or verbally or socially as their weaned from the seizure meds. I didn’t see that for Rhema with Depakote… but then again we introduced Lamictal immediately following the Depakote wean.
I enjoyed the video – it sounded like he was saying “E!” or was he just laughing?
Thanks for all the great info.
Can I just say something? I’ve seen dozens of Nik videos – and I love every single one of them – and I am always struck by your energy and loving engagement with your son.
He thought hard about who he chose, you know?
You have a beautiful voice!
And ditto of the above! =o)
Wow – that sudden burst of development has got to be exciting! I hope you can get some sleep soon. Very very soon!
Ditto everything. You are an amazing mama and Nik is an amazing boy.
Oh, the sleepless nights. Sending you a virtual venti something or other to get you through your days.
(I could totally eat Nik up – what a cupcake!)
xo
Sigh. You know that we had our share of sleepless nights. Here’s hoping that they end SOON.
On another note, I think I was a bit too focused on the fact that you sang the “Ehhh” in relative pitch each time. LOL
Sometimes It is hard to see all the good through sleepy eyes.
Glad things are moving forward.
Hope the rashes stop
I am so glad there is the flip side but so sorry that it is very hard to wean him off of Lamictal. I know how difficult doing that is.
I am worried about how sleep deprived you are. That gets so hard on our systems. I hope you are able to get some rest real soon. Sending prayers and hugs.
I love your boy! His smile and “sense of the absurd” is right up my alley.
I do hope you are able to get some rest soon…I don’t know how our kids go without…
And I am so so so happy to share in all the new and wonderful things that Nik can do! Thank you!
Sesame Street, here he comes!
And hopefully, for you, a nice soft bed, soon.
Hey girl, we are getting no sleep either. I will be adding you to my private reader list..my blog is going private soon.
Sounds tiring, but so exciting too. Love the progress. Just imagine what’s going to happen when you both have enough sleep as well.