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Sunday, May 16, 2010

Migraines and Ceiling Tracks

Ellie was up all night with a migraine that was manifesting as massive clonus in both of her feet and a bad headache. Imagine having a foot cramp so bad that your foot vibrated like electricity was running through it and there was jack you could do to stop it. I spent the night holding my 7 year old on my lap and reaching at the awkward angle required to touch the tone inhibiting points in her feet that Ellie's PT showed me. It worked but I had to keep her foot in the hold for minutes to keep the clonus at bay. Every time I would release the clonus would come back. Clonus does feel like electricity because it is. It's a result of the neurons firing but ending up in a loop that does not go back to the brain but gets stuck in the spinal column so there is not shut off valve for the muscles to stop contracting. It's funny, you would think that brain injury would shut things off, and maybe it does in some cases, but in Ellie's, and anyone with high tone, it turns things on and keeps them on.

AND I was out of Motrin. Tylenol seems to do little for Ellie's migraines, though I gave her some anyway. That is how I spent the wee hours between 2 and 5 am last night, finally going in to wake Dave up for shift change. Ellie was up again at 7:45am. She wanted to sleep on me. Sometimes it's the only thing that calms her and I sit up and hold her on my lap as she buries her face in my shoulder. I love holding her and am glad it is soothing to her. The clonus is much less but my lower back suffers as it gets compressed under her weight which after hours of this has got to be 40 pounds.

When I was 21 I backpacked around Europe and my pack weighed 40 pounds and Ellie feels about the same. That's pretty heavy when it's just solid weight on you, like a 40 pound back pack resting on your stomach and thighs for hours...

Ellie has been up and tossing and turning and complaining all morning. I gave her some coconut milk and tried to get her to eat but it's a no go. Dave went out and got some store brand motrin (because the name brand has been recalled because of dosing issues - great - another thing to worry about) and we are waiting for that to kick in. I really wish I knew the trigger. It's hard to pin point. We did take her out for ice cream and she had some vanilla yogurt and she had chicken soup last night for the first time... We are going to give her Zofran now to stop the nausea so she can eat. Did I mention how much I hate these migraines?

Dave and I also finally came to some conclusions about the accessibility of our house and what to do. We were considering a stair lift so that Ellie could keep her upstairs bedroom but decided in the end to build out our back covered patio. It'll be as big as her bedroom now but a better layout actually. With her room there, we can put in a ceiling track and Ellie will have access to the whole first floor which will also have the accessible shower. I will not miss carrying her up and down the stairs. The room will have big windows and face out toward our rock garden and back hill, which is wild now but will have to be tamed. And if there is ever an emergency it will be much safer, faster, and easier to get her out of the house. It's nice to finally decide. The weight issue of this whole situation is number 3 behind death and lack of sleep. I have worried about it so much. But with things like ceiling tracks, it may be manageable. Ceiling tracks and back boot camp stretching and weight lifting. Taking care of yourself is important anyway for anyone, but seems to make all the difference in my situation thought not fool proof as the pain I am feeling now is evidence.

It's so hard to know what to do. Our house is this living constantly morphing thing.

I don't think we will make it to T-ball today. Oh, and Google's spell check, should know how to spell clonus!


Candace said...

Oh poor baby girl! What a rough night. I think the house idea sounds great! It sounds like it sure has given you a fit of worry...I hate that feeling.

Rick said...

Sounds like a great plan, make sure to buy some furniture that allows you to have ellie sleep on you but supports your back in a better fashion that whatever you are using now. Maybe consult with an orthapedic person for info on what to get. I had a reclining arm chair with wings and wide supportive arms that let me put the twins off of me a little while they slept on me, but this was before they got to 20 pounds each.... Beautiful Pic of Ellie in her baseball helmet on May 14! She looks like a serious MVP ;^)

Anonymous said...

So sorry to read about her recent migraine and the stress on you, too. Glad your PT has given you some means of mitigating the clonus, but like holding her for hours at a time, it is not a complete solution. Weight-bearing can reduce clonus, too. Wondering if a lumbar support to your back would help-?

Sounds like a very good house plan.

BusyLizzyMom said...

You are the second person today that has said their child was not sleeping due to clonus (one of the families I saw at work). Elizabeth does not have clonus but twitches to the point she could bounce out of bed, most often the only way to deal with it is almost lying on her to keep her still. Elizabeth has her twitchy nights after a busy day. Have you tried putting her AFO's on to stop the clonus on her feet, they should stop it for a bit.
Sounds like you have some big plans for your house, giving her a room on the main floor is a good idea in so many ways.

Kathryn said...

Hi everyone - thanks for the supportive words!! Busy Lizzy's mom - ugh - that is hard going!!! We can't put Ellie's afo's on because she got a pressure sore from the serial casting. i wish we could! When they are not rubbing some bony bit of her ankle - I know they help the clonus a great deal!

Weight bearing will certainly help too - but right now her ortho doc says no weight bearing (because Ellie requires AFO's to do that and it's still too risky). Such a bummer.

Anonymous said...

A true Catch-22. :(

BusyLizzyMom's comments made me think of the diagnosis 'restless leg syndrome' - usually experienced by persons without developmental diagnosis. Not an expert in RLS but sometimes if you ask a physician in faux-ignorance, the MD will think outside of the box, too. Or, give information that he would not otherwise. Barbara