Saturday, June 11, 2011

Life is a Whisper

Friends of ours recently had a baby boy.  It is their third child and second son.  The excitement of his upcoming birth was all around them and they were waiting impatiently for it.  But one day he stopped moving in his mother's belly and after being rushed to hospital, he was delivered by emergency C-section.

His heart had stopped, all blood drained from him.  Two transfusions later, he is alive, but with severe brain damage.  The doctors are gently pushing his parents to take him off life support because his organs are precious and could save the lives of other babies in dire circumstances.

Live and be so disabled as to be in a vegetative state, or die and save another.  When he is off life support, he may die, or he may live.  Yet no parent should ever have to make this decision.

Despite the challenges of raising a child with a disability, despite the sleepless nights, the anxiety, the financial and emotional costs, despite all of that, I get to try to be a parent.  Our friends role as parents to their son has been reduced to a single choice.

Would my broken heart still sing...
If I lost it all
Would my hands stay lifted
To the God who gives
And takes away?
If You take it all
This life you've given
Still my heart will sing to you...
- Kutless

Wednesday, June 8, 2011

Biomedical Trepidation

Most of you know that I am a biomedical skeptic.  Alanna is on a gluten-free diet but beyond that, we do not do much in the way of biomedical treatment.

All of that may change next week.  After our failure with clonidine my wife and I decided it is time to give in and go see a DAN doctor.  We feel that we have nothing to lose and possibly something to gain.  After all, the gluten free diet did help with gastrointestinal problems, so perhaps Alanna is sensitive to diet.

I am hopeful because there is some research out there proving some of these therapies can be helpful, but also nervous because of the potential for harm.  However, we have ABA therapy and speech therapy well established now, so any additional huge leaps in progress we would have to attribute to biomedical intervention.

In general I would describe Alanna as generally happy, but sleep deprived and on many days, just "unwell".  She is often lethargic and spacey and I don't know why.  Sometimes she cries for no discernable reason.  I have to wonder if she just feels ill... sort of like I feel when I don't exercise and eat crap for three days straight.

Maybe it will help, maybe it won't.  But before we pump her full of more drugs, we feel we ought to at least investigate it.

Saturday, June 4, 2011

Clonidine Fail

We have tried for months to avoid medicating Alanna for sleep, opting instead for melatonin.  This has worked well generally - in a good week she will sleep through 5 out of 7 nights without waking.  In bad weeks - well, each night is a prayer said before bed that she might sleep.

After seeing a neurologist, we decided to try clonidine, a medication typically used for blood pressure but one that had some good research behind it for reducing night wakings and inducing sleep.  We started it two weeks ago...

... and both Mom and Dad believe it is a failure.  In the last two weeks she has slept worse than ever, waking multiple times at night or waking early in the morning.  She does fall asleep more quickly, but the melatonin did that too.  We kept titrating up her dose until we hit 0.1mg today... and she was a complete zombie.

We are not totally surprised by this.  Alanna has demonstrated this paradoxical reaction before with Benadryl (it made her more excited and hyper) when we tried it before too.

So we are tapering her off this medication and hoping melatonin does the trick until the next appointment.  I hate medicating her but if it will help her sleep regularly, the whole family, including her, benefits.  But it's got to work, and clonidine is not the drug for her.