In the history of unpalatable decisions, there is (are?) a host of fine examples: Sophie’s Choice, Scylla and Charybdis and Morton’s Fork to name just a few. To this panoply of dilemmas we can now add “Nik’s Nightmare.”
Here it is:
Is it better to have your child wake screaming in pain in the middle of the night each night —ostensibly from as yet unproven or undiagnosed food allergies —and be relatively happy, energetic and otherwise fully functional during the day? You, yourself, on the other hand are in a constant state of siege mentality from lack of sleep and worry that there’s something you might be missing.
OR
Would you rather have your child sleep soundly in a drug-induced state which does, in fact, relieve all symptoms of the apparent food allergy? This same medication makes your child lethargic, drowsy and hyper-irritable while also dulling much of his cognitive functioning during waking hours. The result is a day full of constant struggle and frustration for both you and your child.
Which would you choose and why? Really, I want to know.
I went with the awake all night option!
It may mean that in 14 years I never got more than a couple of hours sleep at a time…but I couldn’t go down the road of medication.
It was hard, I don’t need to tell you! But it’s the loving stuff during the day, the achievements, seemingly small milestones to other people, where what always made life so wonderful.
I guess we are all different, and until you’ve done the two hour a night thing…its hard to comment, but that’s what I did, and I’d do it again in a heartbeat.
I tried everything from aromatherapy, massage, naturopathy, reflexology to dancing around the room trying to wear Aaron out…nothing worked. So I just somehow learnt to adjust to a ridiculously small amount of sleep! There were times when I literally fell asleep while I was standing up doing the ironing, or once I even forgot my own name. But slowly over the years I just got used to it, and my energy increased. I’m still a four hour a night person now; I can’t imagine it being any other way.
It’s not my place to tell you how to do it, just know you have the strength within you to make the right choices for you both.
I wish I knew what to say.
I wish I could say “you know the answer in your heart” and not feel like a fraud.
I wish I had sound medical advice to offer.
This is a Sophie’s Choice. There is no right answer. I think …. I THINK…. at times I might lean toward the medicine, and at times I would not. I hate the thought of a child in pain, none-the-less my own child. And I know I certainly take medication when I need it to manage my own pain. But it just isn’t that simple. We’re not talking about motrin and an ear infection. We’re talking about a medicine that masks symptoms and dulls Nik’s beautiful spirit. I’m sure that doesn’t resonate with your soul.
I’m sorry you have to make that choice, friend.
xo
This may not be so much a Catch-22, as a careful navigation through treacherous water. The allergies are unproven and undiagnosed. The best way to test for allergies? See if you can take the allergen out. I know that’s really difficult with Nik, but that is probably on your horizon.
So perhaps the answer is to treat the current, say, few days as “sick days” on the medication. Give everybody a break, reduce day frustration by keeping Nik quiet, and letting everybody try to get some sleep.
Then the work for solving the allergy problem can begin with fresh minds and rested Mom. This medication is not a permanent solution.
Neither choice is better. They both rot, and I am sorry you are dealing with this latest chapter in your son’s life. Are there going to be more tests to try to figure it out?
But, you did ask..so, I choose A. For me, it would be more heartbreaking to see my child “dulled” and possibly losing cognitive function/milestones then it would be for me to see him up all hours crying…especially if he is happy and energetic the next day after the drug free night. Yes, it is horrible for you to be so exhausted – but, not sure you would really sleep that much better with him drugged, right? You would still be worrying, you would still not know the root cause of the problem, and then you would add in worry over drugging him and affecting his cognitive functioning. So yea, A.
Such a tough place to be, I’m sorry you are there.
We have opted for nearly ten years of no meds (except a two week trial two years ago). We’ve learned to deal with no sleep and the other stuff.
You just might get off “lucky” enough that his only issue is legumes and once you remove them all is well. Of course, I have dealt with this long enough to know it’s rarely that easy.
It’s not a right/wrong choice…it’s what’s best for Nik AND the family as a whole? I can’t tell you how many nights I’ve spent walking in circles, bawling while holding a screaming child. Knowing the whole time the pain/screaming is because of what I fed them (or what I ate in the case of breastfeeding). It’s heartwrenching for sure. Yet, so is the alternative, a drugged, lethargic child that isn’t himself.
(((hugs))) I know I’m clueless with so many other areas of what you go through with Nik, but this one is one I understand far more than I would like.
Is there any way you can get a few hours of sleep a few afternoons per week with someone else playing with Nik? Even if you can’t pay someone, could a carefully chosen high schoto ol or college student volunteer help you out? Maybe a retired lady from a nearby church? I so wish I could help out. I hate being so far away from my sister, where all I can do to help is listen.
Sister to Mom to JBG
This is not a choice any parent should have to make, and yet, clearly, they do, time and time again.
I think, however, for you, this is the in-between time. Not the permanent it-will-be-like-this-forever time. You will, eventually figure out what is causing Nik so much pain. But for now, yes, maybe a few nights of sleep (even with the ugly side effects of the drug to deal with during the day) is not a bad thing.
Puzzling it out, trying to help Nik, doing all that on little or no sleep—not easy.
Sending you a hug.
Gosh…I feel the same with all medications… For me, I guess reducing pain is first and then tackle the problem at hand. Maybe even the doctor cutting the dose would help? I don’t know anything really. I know I struggle with the stimulant no stimulant question all the time with Bubba. especially because on it he seems more successful (mainly with peers because he is less impulsive) and then happier, but the rebounds are god-awful… I don’t know. I wish I did.
That’s a hard question. I only know that all the people I know that have been on medications that make them drowsy, lethargic and mentally slower, have eventually chosen to stop taking them, and would rather have the other problems that led them to taking the medication (unless they were life-threatening). But they made those choices when they were old enough to choose for themselves. I also don’t know what it is like if it’s your own child, but I do know how hard it is for *me* when I cannot rest at night. Drives me very literally crazy.
impossible question! and that’s why you’re struggling with it because you are a brilliant intuitive educated loving strong mom and you are AWAKE to all possibilities.
there is no answer. really. other than to keep plugging away to uncover more clues and find the soft places for you and for your son.
SELF CARE MY FRIEND is huge and often neglected. i know.
that said, i’d go for #1 because of how much nik’s alert, happy state of mind does for him AND for you.
but the sleep issue? huge.
see. no answer to this.
sending xxx and (((((((((((((((hugs)))))))))))))))))))
I would choose a bit of both if at all possible. If going on and off the drugs wasn’t disruptive to his system.
I’d keep him off the meds during the week to help him function, and then I’d drug his little butt on the weekend to get some catch up sleep for everyone.
And I’d take turns with one parent sleeping in a separate space, with a loud fan during the week, until I figured it out, which you will, because you are Nik’s mom.
: )
Only you can decide, and i know how hard it is.
With C i went with A, and like Sally have learnt how to cope with lack of sleep.
And because C’s night time pain wasnt masked it helped me to push to get it resolved.
Hugs
You might find this link helpful.
http://www.nytimes.com/2009/02/03/health/03well.html?em
Hello my dear kindred spirit! I am the adoptive mother of three special needs children. Our Drew was a 28 week preemie! She lost her twin, but she was a fighter 3 pounds. My children are all three, so we are on the other side of the agony that you are now experiencing with those unbearable sleepless nights that you feel you will never survive.Then the endless long days functioning sleep deprived.
Has your occupational therapist talked to you about theraputic brushing? How about a weighted blanket? Deep tissue massage and joint compresions? I swear the things you have to learn on your own. If you don’t have these reasources, I would be happy to see if I could be of help in anyway I can. I finally got to sleep when our little ones were a year old! People have no idea what you are going through. I do. they compare your situation with the 2 months of sleepless nights when their little ones came home. We know there is so much more to parenting a special needs child then just the long nights.
I would love to speak with you if you would like to talk. My email is knocky70@yahoo.com.
You hang in there! I will say a prayer for you!
Shelley
We are doing option A. Kayla consistently wakes up between 1AM – 5AM. (My Facebook status generally reads at 3AM — “Kayla is awake”) And she functions amazingly well, excelling even, at school. Me, not so much. I’m glad I’m a SAHM. I could never hold a job with her sleep schedule. I remember reading something where a mom of a child with autism likened it to “being in a state of permanent jetlag”. Yeah, that’s accurate.
I would wait an see on the meds. Lower does and Nik’s tolerance may change his response after a while. If it doesn’t get any better with the meds, then they aren’t a good fit. But I’d talk to the prescribing doctor and see if they can say anything about acclimatization, or whatever you call it.