We are the Stow Family and this is our story. Our lives are blessed by Love, Joy and Hope. Follow our sometimes interesting stories on loving our two boys, exploring parenthood, and celebrating a little extra - two parents, two boys and an extra chromosome!

Tuesday, March 8, 2011

Its been so long...

I regret to acknowledge that I have totally neglected my blog these past weeks, and I am so terribly sorry. Not only have I now got a ton of things to say (which makes for very arduous reading), but I have also lost track of my favourite blogs - the reading of which brightens my days and gives me constant hope and reflection.

By way of an attempted apology, I'll use sub-headers in this post, so that you can just skip right past anything that doesn't tickle your fancy!

Work, work, work...
I have been working my proverbial backside to the proverbial grindstone... I have a new editor and she's getting things into the kind of shape she likes them to be, which means working very hard on two week deadlines (that usually take four weeks). This has been the biggest reason why I haven't had any time for anything but work, sleep and kiddies.

Sleep, or lack thereof
The second reason for my lack of time has to do with the fact that the boys are not just waking up at night - they're starting their antics as early as 8:30pm (and they go to sleep at 7:30pm...). Now any self-respecting mother and father will know that this scenario leaves you with... well... no time whatsoever to relax, catch up on emails, watch a movie, or just vegetate on the couch with a good book. It's all work, kiddies, work, kiddies and a few much needed hours of sleep here and there.

Sleep Training
Which brings me to sleep training... aaahhh...
I have admitted to anyone who will listen that I am completely and obviously useless when it comes to sorting out my children's sleep habits - so I've brought someone in. For roughly the price of a four-star hotel per night, she comes in and is sleep training Harlan for me.
So, I've had two good night's rest and Harlan is halfway towards sleeping through, bada-bing bada-boom!

Sleep Issues
Following Harlan, the sleep trainer will move onto Malakai the with singular focus of telling me what on earth is going on with him. I want an expert (and outsider's) opinion as to whether Malakai's sleep issues are behavioural or not. Which brings me to my next point...

Munchausen by proxy syndrome (MBPS)
A condition where mothers often 'create' illnesses for their children (either by pretending or actually harming them) in order to get attention. Not a nice thing, no. But I am at the point with our family doctor where I feel like I'm carrying a big board around my neck that says "Hey, my name is Loren and I have MBPS".
We've ruled out benign joint hypermobility syndrome, we've investigated restless leg syndrome and ruled out 2 of the 3 major causes (iron deficiency and thyroid disease). And now the third, and possibly most relevant cause for restless leg syndrome in terms of Malakai's Down syndrome is a dopamine deficiency (which has been proven in Ds).
But the doctor is just not willing to take the route of treating dopamine deficiency because of the kinds of medication used, although I have read that toddlers can be given the medication if the pros far outweigh the cons (i.e. constant lack of sleep affecting ability to learn, function etc).
And, when I ask him to check Malakai's dopamine levels he looks at me like I have MBPS. And, when I look at myself, I ask that question as well - am I taking this too far? Should I just accept that Malakai will not sleep?

Well that's it for now folks - life is busy and now that we are making progress (for which I promise not to take the credit) with sleep, things just look more manageable. Sleep is an amazing thing, and prolonged lack of it can seriously turn your life grey.

Here's to getting some sleep - for ALL of us!


Ruby's Mom said...

Ruby normally will not go to bed before midnight but she does at least sleep for several hours in a row after she finally does go to sleep.
It does sound like something is going on with Malakai,I would keep following your mommy instincts and try and figure out what it is.
What a blessing that you were able to hire an expert to come and help you!
Thank you for cheering for my Ruby and her new ability to walk. :)

Brandie said...

Do not accept that M won't sleep well! I'm on the iPad so I don't hane all my resources at my fingertips. I'll just tell you what we've done. Melatonin AND fish oil, sleep study followed be removing adenoids and tonsils, and white noise. There is some new research looking at Ginkgo to help our kids get more REM sleep, too. Hang in there!

Jennie said...

THANK YOU for sharing about your (Malakai's) sleep issues. Micah has NEVER been a good sleeper and I've been going crazy trying to figure it out. Most docs have said it's behavioral. But he's not *really* awake when he's moaning and groaning overnight so I don't think he's just trying to get attention.

But I've never heard of benign joint hypermobility syndrome. How is that diagnosed? (feel free to FB the answer to me rather than blogging). Micah does seem to sleep better with a dose of ibuprofen at bedtime. Makes me wonder...

But I'm also interested in the dopamine thing. I'll ask Micah's neuro dev about that when we see her again.

You're not taking this too far! I know I'm a mess when I don't get good sleep. And a lack of sleep HAS to play a role in a child's ability to learn. You're a great mom, Loren. And you're not crazy. :-)

Leigh, Kim and little Natalia Pomario said...

Loren, you DO NOT have MBPS. You are way too busy to make things up and waste your time to get some attention. I don't believe its possible in your case! You are just extra caring and super tired and need to find an answer to Malakai's night wakings. Don't let any doctor make you feel like Mrs Wacko ever! There is someone out there that WILL help you, I know it, and maybe it will help someone else in the process........

Fiona said...

If you feel that your doctor isn’t covering all possible avenues especially if Malakai used to sleep well would you consider changing doctors? I’m of the train of thought that if children used to sleep well and suddenly stop there are either one of two reasons ~ behavioural or health. I really hope you get to the bottom of his sleep issues and kudo’s for sleep training Harlan. I hope everything calms down soon so you can get some needed R & R.

Beth said...

I'm WAY behind in my blog reading, but I don't recall Malakai having a sleep study. I recently met with one of the top Ds doctors in the USA (he's running the Alzheimer's drug study in which Hannah is participating). He asked for Hannah's sleep study results (she's had 3), and said that he believes that sleep is going to be the next big issue to tackle in the DS population. Our pediatric neurologist said that 90% of his patients with Ds have some form of apnea, and the other 10% just haven't been caught yet.

Have you videotaped his sleep activities? His legs? Does he sit up in his sleep with his head back? Is he moving for most of the night? Have you noticed slow breathing or delayed breathing? Take the video to bring to the doctor.

If M. hasn't had a sleep study, ask for one. If the doctor won't go for it, go to a pulmonary doctor,neurologist or ENT to get it scheduled.

You DON'T have MBP--something is going on with your little boy, and there is help.

TherExtras said...

Oh.Dear. Hoping you've had lots of good snoozes since you wrote this.

I'm not qualified to diagnose you but lack of sleep is known to cause craziness.

My favorite panacea - exercise. Of course!

Sweet dreams! Barbara

Kelly said...

Just putting this "out there", but during pregnancy I had restless legs (especially at night!). I complained to a friend who immediately produced two Cal-Mag (calcium/magnesium) vitamins for me to take. The restless legs vanished and I took a cal-mag supplement for the duration of my pregnancy. My friend had bought the cal-mag for her elderly father when he had restless legs.

Just something fairly cheap and easy to try. I know how irritating restless legs are....hope you get things settled and have some quality sleep in your home soon!