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For Maria's Daughter

Posted Nov 17 2008 11:51pm
5-year old Tough Girl:

1) She knew about the sunglasses before even reading about it! Get the darkest ones you can find - they're gold :)

2) Take a nap if you start feeling cranky. Just pass out!

3) Dark, quiet room with a comfortable temperature (if not a few degrees cooler than perfect) is ideal to recharge in.

4) Skip the TV. Not a good idea when you're dizzy/confused/head hurts.

5) Turn off all noise. (I wish I could tell my neighbor this... it's 5 am, and their party is still hoppin'! ugh)

6) Vibration is tough to drown out - mp3 player (creative zen) - with music that doesn't have high or low pitches. Also might be great if your ears are ringing!

7) If your fingers are cold, put them on your temples or cover your eyes. A sleep mask or "beauty mask," on the cooler side would feel great on the eyes.

8) Gatorade or pedialyte.

9) Decrease any stress! ASAP! Save it for another day! Find ways to deal with stress - hot bath, meditation, reading... whatever you enjoy doing that doesn't take much "brain" to do.

10) Hang in there!! It gets better... more comfortable days are ahead! Even though they seem soooo far away!!


That's the beginning of what I've got. I am 11 months post-concussion - and I'm writing this at 5 am, in which my headache has not subsided from yesterday afternoon. However, I can honestly report that I am quite sure the pain and migraine is definitely not as bad as a few months ago. I can honestly say, although not able to estimate to what degree, the migraine gets better as time goes on. My sensitivity to light and sounds has become more tolerable. I have more hope than I've ever had before. And as the fog thins slowly, I find more glimpses of the intelligence I have missed sooooooo much!!!!! That intelligence gives me hope that I have not completely lost the "old me." I'm in there somewhere - and I'm going to pull that girl by the hair until she pops back out of the black hole she fell into!

.......... So Maria's little girl............
I'm going to underline suggestions, I tried to put most at the top - but there are always a ton!

What a smart girl! She should work for me - I have no income of my own to pay her at the moment... but I want her on my team! I remember the day it dawned on me to wear sunglasses; or the day I first wore them inside (back in June). It's like breathing. Like the moment you can't stand to be suffocating in the heat from your shower, you hurriedly open the door of the bathroom, and - ahhhhhh! Breathing :) She's brilliant!

In the first year after a concussion (which I'm still in, so it's based a lot on what I've read...), the most crucial thing someone needs is rest. The first 9-10 months, and I'd like to think a little less often now, becoming overstimulated happened so easily! I couldn't rest enough. I couldn't get enough sleep to deal with anything. The sun was brutal. I eventually completely isolated myself to stay inside with the lights off and all noise cut off. I can handle more sun now, often a few days in a row - I still have some majorly bad weeks, but I think a lot of time and rest has really helped my brain heal and slowly take more stimulation in without killing me.

Lay your girl down with her favorite teddy bear more often than before. If you feel she's getting confused, squinting, getting cranky, blocking her ears, changed disposition (talkative -> really quiet)... it might be time for a nap. The best atmosphere is somewhere dead quiet. I would be more upset from hearing the vibrations of a TV through a wall when I knew I just needed quiet rest. And I couldn't even hear the TV, didn't know it was the TV, and nobody in the world would be able to feel the vibrations I could feel. As parents - try to make an honest, exaggerated effort to be quiet. Put down the dishes, turn off the radio, stop walking around, go outside and clean your car out at the bottom of the driveway away from her window... There is something ridiculous about how hypersensitive someone becomes when they have a headache/confusion relating to post-concussion. For example: I can't stand trash trucks. If there happens to be a national announcement about a strange tire-slicing bandit that targeted all the tires belonging to garbage disposal trucks in the greater Boston area... I may be very grateful. But for the record, it wasn't me... I'm just sayin'. :)

I've read that a cooler environment is helpful. I don't like it too cold; I feel my muscles tense up and I may start to shiver - both make me feel worse. But too hot can also increase blood flow and blood pressure etc, which if her migraines are sometimes vascular related, there's too much blood flowing too fast to her head causing pain... so this isn't good either. For a sure shot, just ask her, aim cooler while arming her with a plush and comfy blanket. Touching her temples and forehead or covering her eyes with a cool cloth can feel pretty nice - again, cool, not freezing!

I went from going to Fenway Park for 20+ games last season... to only being able to tolerate one a month - if that! And two of those games, I saw in RI with the Pawsox because the crowd is a lot smaller. I'm a die-hard sox fan... and I eventually had to completely walk away from following them after the game I saw on Aug 9th. I just couldn't handle it. And I still can't handle too much of watching them or even knowing if we're winning or losing during the game!! I digress... it's ALDS playoff season...

But limiting TV might help. The biggest issue with concussions includes a decrease in processing speed - With television, the frames change so quickly during shows, people talk real fast, and the lighting seems to resemble flashing sometimes - all are not very easy to tolerate after a concussion. You get stuck on one frame, and can't transition throughout the movie/episode/Red Sox game very quickly - causing frustration and more confusion = stress and more headache.

Some weather may exacerbate the confusion/headache cycles. The days that are 'hazy gray,' overcast but bright. Perfect example: The day right after fall becomes too cold to skip the gloves and boots; it's a gray sky full of clouds and it's about to SNOW ANY MINUTE. And then you see that first snow flake. Right before you see that first snow flake - that's the 'hazy gray,' relentlessly mind-wrenching weather that does something to the sunlight that shakes up a brain recovering from a concussion. Sunglasses are very helpful - but there is something unique about the fractionating of light that makes this weather disruptive far after you've invested in the best pair of shades. It's overcast that makes your brain fizzle. Before a thunderstorm, before snowfall, before a light rain shower... I have nothing intelligent to suggest in guarding against this weather phenom!

I wrote about frequency of light being a problem - but I also believe there's an issue with frequency of noise. Turning off all noise, if it can be accomplished, can help settle the brain down a bit. But those trash trucks... when they come around, I'm sure to grab my iPod! Vibration can be very difficult to drown out, but can make someone VERY confused and disorientated in a short period of time. She's young, but there's a small Creative Zen player you can find for cheap at BestBuy. Load some Disney princess songs on for good measure - or something else :)

I had a very hard time getting back into some of my music - and still have trouble, but it's getting better! I had to stick to songs that were relatively even-keeled on the sound frequency/pitch. Dave Matthews (minus extensive violin solos), Rascal Flatts (minus tons of bass), no screaming, no new songs that I did not know the words to... and I absolutely hated listening to "I kissed a Girl" because there's an incredibly high pitch in the chorus that just hurt.

If in silence, her ears ring, listening to an mp3 player might also help distract away from it. Sometimes the ringing can become nauseating. Teach her not to ramp up the noise too high either. There's a theory that the ringing happens from a sudden stop in the stimulation to the hairs in the ear that measure the noise... not sure where that theory is from....

I'm not sure if she's old enough to realize how significantly different her balance gets when she's dizzy... five-year-olds are very observant, but I'd love to hear about how she communicates it all to you. Much of the dizzy issue, for me at least, would be considerably worsened because I was extremely scared. I would wake up to my alarm at 7 am, and on my way to my alarm clock I would get WICKED dizzy. Then around 8:10 am, I would wake up from the floor and realize the alarm was STILL going off. I would get half way up and my vision would just disappear, I'd feel like I need to puke, and I'd become drenched in sweat. And the advice I received from a physician was " take a deep breath." I wish he hadn't been so rude about it - it really is great advice. Let her know that it will continue to happen for quite a while, but it's all part of her brain adjusting and healing. If she stops freaking out about it when she gets dizzy, she'll be on her way to controlling some of the hyperarousability that may be adding another layer to her migraines.

Dizzy upon standing? Get up really slow; my blood pressure still drops 20 points between sitting and standing. Hold onto the wall/door knob whatever is close when she gets dizzy and until it passes. The best advice I ever read in the "Coping with Mild Traumatic Brain Injury" book I invested in: While walking, touch the fence you're next to, continually graze the bushes as you walk - touching something stationary and guiding your path can help to "re-ground" your footing. I do it all the time. I'm awesome at faking 'normal' - but my best friends know when I can't see clearly or walk straight, I'm usually skimming the walls with my finger or reaching my arms out to sweep the fence as I walk. I'm also usually trying to laugh a little about it so I don't stress myself out and worry myself to a point of no return... which still happens and is so not fun.

I drink a ton of gatorade. Staying hydrated is key. For a little girl, there might be too much sugar in gatorade. But in contrast to water, there has to be something positive about maintaining electrolytes. One day I'll run a study and prove it - but you'll have to take my word for it... I feel a little more "balanced" when I drink gatorade; and I'm yet to successfully feel I can switch back to water. For a kid - in the baby section of most retail drug stores (Rite Aide, CVS, and even Shaws, etc) there's a great electrolyte drink called PediaLyte. Highly recommended for children and elderly (and adults of any age) who experience vomiting and/or diarrhea and need to rehydrate. It's a simple electrolyte formula usually in "original" or "orange" flavor; but it doesn't have all the sugars found in gatorade, powerade, etc. And of all those, I prefer the original gatorade - primarily because it's history to make the Florida Gators football team perform better... so it's data based in my head :)

I'm a writer at heart. And when I can't write, I enjoy reading. I also enjoy taking pictures. Find something she can 'mindlessly' do to distract her from the pain and discomfort. If she can't fall asleep, if she's cranky and irritable, if she can't sit still, if she just has to get moving - what could she fall into that she'd enjoy enough to stick with it despite being uncomfortable? Something that might relax her. I REALLY love the way piano keys feel on my fingers. I don't know how to play yet, but I can bite the bullet to teach myself some notes of a simple song in a beginners book. For me, there's something therapeutic about the feeling of making music through my fingers with those cold weighted keys.

Talk to your daughter before she gets into her headache. Stress is a huge factor for post concussion migraines. She's lucky she's not worried about returning to a job and paying for rent on time! But if you're asking her in the middle of the worst, "what can I do to make it better?" or "what will help you?"; it's not the time. The feeling of the migraine is so hard to explain. Especially if she experiences migraines without head pain. But I know the moment my face goes numb, the nausea kicks in, or my arms fall asleep - I need to remember what has made me feel better before. I'm not going to come up with anything while I'm in critical mode and can't answer questions, let alone correctly hear what you're asking. Come up with a plan while she feels good and can think about what she'd like you to do. Come up with a plan how she can tell you to just leave her alone for a few hours if needed. I can't tell you how many times I've belligerently screamed at my mother because she just wanted to help and didn't know how... but I just needed her to stop asking me questions so I wouldn't blow an aneurysm. Your daughter is five, I am twenty-three... big difference I know... but the stress of questions at the wrong time may impact how quickly it's possible to recover from the headache.

Yikes - I've written a lot. And at 6:30 am, the party across the hall has shuffled out.

Lastly, your daughter is very young. Chances are, this is her first big bang to her head. If she has another, the pain and headaches may get worse or take longer to resolve. The sensitivity to light and everything else gets worse and has a higher chance to become permanent with: a) the more injuries/concussions sustained, and b) the older the brain is. At five, your daughter has a brain that will reap the benefits of plasticity! Plasticity is something brains have been seen to do, and recently explored and discussed. It's the ability to change and to rewire. The ability to grow and heal, often remarkably overcoming deficits and injury. Many mature brains have demonstrated this plasticity, but are more 'hard wired' through the years and aren't as pliable as a child under the age of 12 or 13. And she's smart! If she hangs in there, hopefully the over stimulation of lights (and maybe sounds), the dizziness (and maybe confusion), and the irritability will begin to lessen in severity and/or be more tolerable. Take this time to learn relaxation techniques (which I haven't been able to do yet... so I have no real advice...) such as meditation, breathing, etc. Find and abolish things that irritate her - always reaching too far for her crayons, put them down a shelf; always losing her fake-car keys, hang a small bag next to the door where she can always put them the moment she gets home ;)

It's a rough time - but it could be a great bonding time to really communicate with your daughter. She's really lucky (maybe also because she's so young) to have someone who truly wants to do everything they can to help her feel better. You can stop by and make me dinner any night!! haha... I have a hard time eating, I'll write about it later.

Best of luck!! Stop by and let me know if anything helped, or how she recovers. Or if she has some suggestions herself!
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