|Posted by Nicole on May 21, 2014 at 10:35 PM||comments (1)|
Like I promised: Not a blog! But an update for those who are curious ☺ Aiden was admitted to Children’s on Monday morning after a 12 hour fast to start the ketogenic diet. He was already in pretty deep ketosis (where the body is burning fats, producing ketones, instead of burning carbs for energy) thanks to a high fat modified Atkins style diet we’d been doing to prepare him for keto.
Monday morning was fine, until he became hungry. He was allowed half of his normal calorie intake via Ketocal, a formula made to mimic the 4:1 ketogenic diet ratio. He was hungry, tired, and overhydrated (we pushed way too many fluids – who actually takes 64 oz in a day?!?), and got pretty sick that evening. I’m certain he’ll never touch any flavored water I set before his lips again. He seized all night. He was finishing a cluster that started over the weekend, so they were incredibly short and no big deal, but it’s tough to see your baby miserable starting a diet that’s supposed to stop seizures.. AND seizing.
Tuesday was better. He had formula in the morning and keto meals the rest of the day. He was so happy to have food he didn’t mind the odd smelling hospital version of keto meals. His g-tube is now officially my best friend. We were close before, but now we’re true BFFs. Aiden is happy as a clam to dip his veggies and meat in ranch dressing or butter, and have his oils sent through his tube! He was fluttery and his body was still a little stressed out from the fasting and vomiting the day before, but he was doing better. One tiny seizure overnight Tuesday.
Wednesday I was able to prove my competency with the meal planning spreadsheet and make his meals up on my own, ordering ingredients from the kitchen as needed. His body adjusted so well to the diet (thanks, I think, to his starting it early) that we were discharged! Into a tornado! Just kidding, they kept us in the hallway with all of the other patients and their beeping monitors while a tornado passed a block away from the hospital. They take such good care of us ☺
He’s home, we’re happier, and I think the diet is off to a good start. He's tired and scattered - not processing completely normally, but those will both get better with time. It’s too soon to tell if it’ll help or hurt, but I’m so glad we’re on our way to knowing. Thanks for all of your support!
|Posted by Nicole on April 7, 2011 at 10:36 PM||comments (4)|
Aiden had his Vagus Nerve Stimulator (VNS) implanted today. It's like a pacemaker for the brain: It's a small battery operated generator in his chest that sends electrical stimuli up two leads to his left Vagal Nerve in his neck every few minutes. Over the next several weeks we'll go in to the hospital to have the signal strength/frequency ramped up to a functional level.
The constant cycling of electrical stimulation should help prevent a few of his seizures (50% of patients see a 50% reduction in seizures), and when he does have one we can swipe a strong magnet over his chest to activate a longer stimulus that may help interrupt the seizure. If nothing else, it will likely shorten his recovery period and perhaps improve his cognition just a bit.
This incision is "a lot larger than normal," and very different from the two small ones they described during pre-op.
They didn't say why.... I don't want to know.
(And now, a mere 7 hours after surgery, he sits happily on the couch staring at his "owie" covered with a bandaid. Shh! Don't tell him that's just the IV site and the real owie is about 5 inches long and dark red on his neck
This kid endured a seizure this morning to start things off, then fasting, pokes, prodding, intubation (a tube down your throat is no fun at all), a pretty lengthy surgery, and is back to almost 100%. He is full of snuggles and kisses and, bless his little heart, doesn't even understand why. He doesn't even question it, to be more accurate. Now here's hoping he forgets about it soon and most importantly, that it helps!
|Posted by Nicole on March 16, 2011 at 10:13 PM||comments (0)|
Poor guy. Even Lexie, the dog, doesn’t undergo as many experiments as he does despite her ever present willingness to do what I ask. Seriously, I think she’d run into a flaming house to get a sock I left behind if I told her to in my best “sweet command” voice. (Which has made a stunning comeback thanks to dog #2, AKA Scout, choosing us for a family at the shelter a week and a half ago. Scout is an eager learner, but not exactly service dog material. She comes with two accessories: a slimy blue ball and a slightly less slimy red ball. All day long.) I digress.
I’ve graded oh, about 37 lab reports this week from my younger students who were asked to design their own experiment and write a report on it. They think their teacher is totally out of touch – Who does this stuff? I do! Mwahahaha! Here’s mine:
Effects of Almond Oil on Seizures
Purpose: This experiment seeks to determine the effects of fat in addition to a low-fat diet in a 5 year old boy with epilepsy. Specifically, almond oil will be evaluated with respect to myoclonic, complex partial, and generalized tonic clonic seizure control and related side effects.
Hypothesis: Based on a complete review of the current research regarding fat intake and epilepsy, coupled with the boy’s severely fat deficient diet, it is hypothesized that almond oil will improve either myoclonic or generalized tonic clonic seizure control.
Procedure: (Tired of the scientific talk? Me too. I’ll revert to my real life language for both our sakes. Just know I can spew it with the best of them.)
Document 3 days of seizures using the old fat deficient diet and inject emergency meds as necessary.
Next, take said seizing boy, inject with 5 mL of almond oil twice daily, and pray the seizures stop. (Actually, this doesn’t sound that different from my students’ versions of procedure. Hmm..) Add a splash of sugar free Koolaid to wash down the tasty syringe full of oil.
Day1 50+ 1 1 This stinks
Day 2 45 0 1 Still stinks
Day 3 100+ 2 0 Boo.
+10 mL Almond Oil
Day 1 20 0 0 Coincidence
Day 2 10? 0 0 Don’t get your
hopes up –
this never works
Day 3 10 0 0 Diarrhea on the
floor. Shit! Literally. (I
don’t usually swear,
but when the shoe
Day 4 5? 0 0 No poo, no sz.. Hmm..
Results: Who the heck knows? There may be a trend there, but as we’ve
learned been beaten over the head with, it’s never as simple as it seems. It’s great that he’s had 4 good days seizure wise, but a little tiny part of me thinks seizures are preferable to steam cleaning the carpeting and Cloroxing the path between the bedroom and the bathroom, which now sports a toilet faux-finished in brown where a pristine white one sat just hours ago. (I’m totally joking – I learned how to tile and would tile the entire house if it meant reduced seizures. But poo really does stink.)
Conclusion: Darned if I know. (One student wrote this on a report last year. I had to give him credit for the honesty – that’s a huge part of science, as opposed to guessing what should have happened and writing that instead, which is what a lot of them do.) Seriously. Darned if I know. I’m throwing up my hands this week and letting the jury decide.
Since I obviously have no control over seizures, toileting issues, or my other 2 children, I think I’ll teach Scout how to walk nicely on a leash this week. What was the psychological term for that? Displacement, I believe it was.
|Posted by Nicole on December 15, 2010 at 10:27 PM||comments (2)|
And... We're done.
Or "we've finished," though that doesn't sound nearly as final as the grammatically incorrect version. Aiden's been getting steadily worse since the last entry 5 days ago, despite my best attempts to manipulate his diet and calculate/serve exactly what the dieticians tell me to, so we can honestly say his ups and downs were just the natural roller coaster we live called Dravet. The day after the last update he had a big seizure out of the blue, keeping his regular 7-10 day frequency, and over the past nearly 3 weeks there's been more bad than good, more frustration than hope, and more drawbacks than potential payoffs.
The good news? It turns out he was pretty much on the 4:1 (ratio fats: protein + carbs) ketogenic diet for the past week, albeit with too much protein and too many calories. Though MAD is not as restrictive as keto in terms of protein consumption, calorie and fluid restriction, or measuring food, "pushing fats" seems to be the key in reducing seizures, and once you've pushed the fats to the upper limit there's not much room for anything else, which is how we inadvertently ended up at a ratio of 4:1 (fats:carbs+protein). All dieticians are careful to stress that the diets can take time to work, though many of the children who are ultimately successful on them see some sort of progress in the first two weeks despite the lethargy and difficulty.
The bad news? I feel stuck between a rock and a hard place in that I feel like I gave it my best shot this time and it wasn't doing any good. After tearing the candy cane off the card his teacher gave him yesterday, right in front of his face (that's the one thing he's consistently asked for each day: candycanes) and explaining that he couldn't have any sugar or carbs because of the diet that was supposedly helping his seizures as we left the classroom because he was having so many seizures, I realized it was not working.
Yes, we could have pushed through and stuck with it for the recommended 3 month trial period, as any good dietician will suggest. At the same time, he goes through so many ups and downs that who knows if, in 3 months, when he was much improved, it could really be attributed to the diet anyways? Seeing how tired, sad, and still fluttery he was, and how happy, energetic, and talkative he is this morning (though still fluttery), I'm feeling better about this decision than I was last night. It involved a few tears, feelings of inadequacy, and two margaritas.
Feel like you're getting two different stories on this blog? Welcome into our heads and our lives. Chasing seizures is like chasing a fly - you feel like you're about to catch them and then they take a quick turn to the left, leaving you standing thinking, "Was I really as close as I thought? Or did my eyes betray me and I was never about to catch them?"
It's not a science, as much as I'd like to force it to be.
|Posted by Nicole on December 10, 2010 at 11:24 PM||comments (3)|
You know that point when you’re teetering on the edge of something big, and you look back over your shoulder thinking, “What the hell am I doing? Life was good!” and at the same time you glance ahead to the chasm of the unknown and think, “But what if..?” That’s where we are.
After a week of his usual ups and downs seizure-wise, with a lot of added lethargy and exhaustion from the new diet, he seems to have turned the corner, his body learning to process fats for energy rather than carbohydrates. (Disclaimer: It could totally still be his usual ups and downs and another big one is bound to rear its ugly head one of these days, but optimism is precious. I’m sticking to it today. Day 10 and counting.) He’s not complaining of hunger anymore, I don’t feel the need to check his ketones every hour, and he’s developed a few favorite foods we’re comfortable with.
But where the heck does that leave us?? I’ll tell you exactly where: It leaves us ready to head back to Minnesota in 7 days for a good old fashioned Christmas with the best cooks known to mankind: grandmas. Christmas cookies, other people’s kitchens, and cousins – they all spell disaster. Or at least glutton. And a buttload of sugar. (On that note, don’t ask me how we’re planning to get his oxygen tanks, diet necessities, and Christmas presents into the car – the boys and I may be able to get to MN, but Andy is going to have to strap himself to the roof for the way home. I’m totally okay with that.)
I still don’t know if the diet is helping him, but holy cow has he been on fire the past couple of days. Remember that Diego puzzle I mentioned a few weeks ago? Well, he dumped out a similar Cars puzzle today, and proceeded to complete it. By himself. (Okay, so I had to fill in the edges where there are no characters, but he did 80%!)
And school? He’s the model classroom pet. His attention span is, oh, about 16 times that of the fish-like tendency I usually describe him as. The kids there take such good care of him, telling him when to clean up and when to put his books away, and he’s downright calm there. (Does lying on the ground in the middle of group time half falling asleep count as calm? No? Okay, so then maybe he’s a little lethargic.)
I cook. A lot. I throw food away. A lot. But he had one eye flutter today. One! I’ll cook circles around anyone to keep him at that level. There have been some tough, perseverance testing days these past two weeks, accompanied by an exorbitant amount of praying and asking for “signs,” and I will have a lot of explaining to do when we get back to the relatives’ houses. Who knows? He may tank tomorrow and it won’t even be a big deal. But the “Holy crap, what have I done?” feeling is looming right about now. Hang on, Family, Here we come.
|Posted by Nicole on December 6, 2010 at 11:06 PM||comments (2)|
I must have hit some sort of jackpot in my 20’s and just bumped along the road listening to my music completely oblivious to the sudden windfall, because the boys in my life are the biggest troopers I’ve ever met. And they’re all mine! All 4 of them! (BTW: Life out here has made me comfortable enough to finally admit it: I like country music. I hid it for a long time (thank you, Carleton), but it’s “okay” to just tune that radio station to country and bump along the road out here in Colorado. Bliss.)
Anyway… These boys deserve one great big pat on the back, complete with a round of applause and whistles for what they endure. In the past 7 days alone we have seen:
Andy not on board with our new Modified Atkins Diet one bit after the previous failed attempts, but loving his wife enough to know she had to try again. He hopes it fails every day because, let’s face it, life was WAY easier before this and the likelihood of it helping Aiden based on his previous track record is not so hot, but he still eats the meals I make, conforms to it, and doesn’t give me a hard time.
Owen stepping up and acting like a man when even other mothers wouldn’t hold my purse (Thank you Owen!) and the dog at the same time, and eating his food in secret so as not to tempt Smoochie Bear.
Alec not only eating in secret, but actually yelling for me when Smooch stole an animal cracker from him. How many 7 year olds know that one animal cracker can wreck an entire week’s worth of ketosis? And he was smart enough to tell me as it happened so I could fish it out of Smooch’s mouth! Rock. Star.
Last, but not least, the trooper none of us will EVER be able to top: Aiden. It’s been a tough week, but he has weathered every piece in the most graceful, strong, understanding manner. (Well, some things were, um, less than graceful, but we’ll cut him a little slack.) He can no longer eat bread, crackers, chips, milk, cookies, tortillas, pasta, fruit, ice cream, or anything else with carbohydrates in it, but he’s found new foods to love and hasn’t whined or complained when I’ve said, “no.” He has asked for candy precisely once, and even went out to dinner with us on Friday night and didn’t complain that his cheeseburger had no bun, his plate had no fries, and his beloved Sprite was replaced as I poured his concoction under the table. He’s found new foods to love (Fage full fat yogurt, all 23 grams, mixed with loads of coconut oil and almond oil, with the smallest bit of strawberry preserve you’ve ever seen for a grand total of 52 grams of fat - mmm, tasty), and has almost forgotten life before the diet.
I don’t know how long we’ll keep at this - It’s tough to tell whether it’s working, but one thing is certain: it’s not hurting him this time, and who knows? Maybe the fats and oils are helping his brain heal. That’s the theory, and I’m up for giving it some time to work as long as he’s relatively happy. 4 years of daily seizures might just take some time to heal.
I don't think most people are lucky enough to have 1 trooper like my guys, and I have 4. So. Darn. Blessed.
|Posted by Nicole on December 4, 2010 at 1:26 PM||comments (0)|
I sat in the waiting room at Alec’s hip hop class with Owen, Aiden, and Lexie, trying to busy myself and make it look like I wasn’t completely eavesdropping on the conversation between the two moms next to me. One was a homeschooler with 4 children ages 9, 5ish, 3ish, and about 18 months. I listened to her complain about how exhausted she was and how she was having a hard time preparing for the science experiment she and the 9 year old were supposed to run the next day while her 18 month old toddled around happily, playing with her mittens. “Between curriculum development and correcting her work, I haven’t seen my husband much since September.”
I listened to the other mom return the exhaustion complaint, listing her grievances about how everything was just so hard for her 8 year old daughter (in hip hop with Alec.) She has a hard time making friends due to her “quirks,” and her handwriting is not up to par. “Why can’t just ONE thing come easily for her?” was the mom’s complaint. I looked up to see the daughter happily dancing away to Lady Gaga’s “Pokerface” inside the studio, on beat, smiling, and following all of the instructor’s directions. Look at her! I wanted to scream. Pay attention to how happy she is, and what a good dancer she is! I didn’t.
The next week we were settled in our chairs in the waiting room again, the other moms commiserating as we all do. I was watching Aiden, who started a new Modified Atkins Diet (MAD) this week in hopes to help attenuate his seizures. It involves an insane amount of fat, minimal protein, and virtually no carbohydrates, causing his body to burn fat and produce ketone byproducts which are spilled over into his urine. It’s hard on us both, but not nearly as hard as some diets, like the ketogenic diet. We’ve tried this before with serious side effects, but every year or so I get into an obsessive compulsion thinking diet might help him, if I can just do it right this time. He was on Day 2, tired, a little lethargic, but in moderate ketosis and not yet vomiting, so we were doing okay.
I heard a loud “thump,” and looked down at my feet to find Aiden face first on the concrete floor convulsing. For 4 straight minutes he convulsed, Lexie catching his drool on her head as she cushioned him. One other father did offer to call 911, but we didn’t need it.
I had the Diastat drawn and ready to go, but pulling down a 5 year old’s pants in front of an entire room of people to rectally inject Valium isn’t anybody’s 1st choice, so we waited it out and hoped it would end on its own. It did, and he rested peacefully on my coat for the rest of the hip hop class. Conversation slowly returned to normal.
Everything is just so hard for your happily dancing daughter? I’m having a hard time commiserating right now. She chose her foods for breakfast, lunch, dinner, and all snacks, got dressed by herself, came to a fun dance class, went to school, and talks to you about what she thinks. Heck, she talks to other kids, too. She only has 3 friends? She’s lucky as far as I’m concerned. 3 is plenty.
After class, I went to pick him up and nearly fell over trying to get his limp 45lb body up to my arms without leaving him and fetching the stroller. The mom who was complaining looked down and said, “I’d offer to help, but I’m guessing you’re used to this.” I nodded, not quite sure what else to say. How do you accept an offer of help that isn’t really an offer at all? Because it would’ve been great if she could’ve handed me my purse once I was standing. But I guess I’m “used to this.” Does that somehow make it okay?
Update: He’s on Day 6 of the diet and doing pretty well. He’s in moderate ketosis, has some lethargy in the morning but seems to perk up after a good 10:00 meal, and hasn’t thrown up yet. He’s eliminating okay, drinking well, and his eye flutters seem to perhaps be reduced (except for in the morning). I’m not counting the seizure on Tuesday as the diet failing because A. He was due for one, and B. I gave him 3 drinks with aspartame, a known seizure trigger, those first two days because I was trying to make his drinks “fun.” Lesson learned. It’s too early to tell if this is worth it yet, but at least we’re actually getting past the induction phase of this diet for once.
|Posted by Nicole on October 25, 2010 at 10:26 PM||comments (1)|
|Posted by Nicole on December 7, 2009 at 2:53 PM||comments (0)|
As promised, and in honor of the last month of the year, here are theTop Ten things I’ve learned for or from Smooch that I never thought I’d know, somewhat in relative order of importance:
10. How to read a medical lab report. (And request the right tests from the lab in the future, even if the medicine level requested isn’t on their list of possible tests. Just say, “Run it on the HPLC as a benzodiazepine.” In fact, let’s lump “very basic knowledge of how to read an EEG and EKG” in with this one – the more the merrier.) And “very basic knowledge of how to operate home medical equipment.” (IV sites, pulse oximeters, oxygen masks and tanks.) More than I ever thought I’d know!
9. How to calculate and weigh food, supplements, and medication for any diet you might like to try. Want Gluten free? No problem. Dairy free? Here you go! Dye, preservative, artificial sweetener, additive free? Carbohydrate free? (And is that with a 3:1, 2:1, or 1:1 fat: protein/carb ratio?) Low glycemic index? Here’s what you do. We’re changing the medication from 500mg to 400mg but there’s no way for the pharmacy to change the dose? Okay – we’ll just weigh it out ourselves!
A day in the life of Aiden!
8. How to get medication from France and Canada imported through customs, paid for in Euros, and reimbursed by insurance.
7. How to discern between missense, nonsense, deletion, insertion, truncation, de novo, somatic, mosaic, intronic, and exonic mutations. Let’s just throw in discerning between speech, occupational, physical, and feeding therapy. Heck, why not add in all of Aiden’s seizure types: generalized tonic-clonic, hemiclonic, atonic, myoclonic, absence, atypical absence, complex partial, simple partial, etc. And for good measure the syndromes associated with these seizures: GEFS+, ICEGTC, LKS, LGS, DS, etc. Holland really does have its own language!
6. Speaking of language: Regardless of the question, “Guh wahee?” (Aiden speak for “Cause why?” is the perfect answer. This is best expressed with a raise of the eyebrows and a cock of the head. “Aiden, why did you lick all of the dishwashing soap out of the dishwasher?” “Guh wahee?” See? It really is the perfect answer.
5. It’s better to find the nearest exit than to administer Diastat on the side of the freeway. Even better is finding a nice side road on to which you can turn. Any of these options works, however. Make sure you note the street sign, though, as the ambulance will need it to find you. At this point, it works best if you can squeeze yourself into the now-unoccupied carseat. It also makes for extreme confusion and surprise on the face of the person who finds you. Either way, the police are much more understanding after they realize what you’ve done. And don’t worry about siblings being scared – they just love this stuff. FYI: Policemen really do babysit when necessary. They will, indeed, wait with older children for Dad to arrive while you ride in the ambulance with the little one. How many of your babysitters have radios, badges, lights, sirens, and guns? Nope, didn’t think so. And you thought Owen and Alec were deprived. Ha!
4. Though some people may give you a nasty look, on the really bad days it’s best to actually use the handicapped parking tag and get the prince indoors and out of the cloud-ridden light as fast as possible. If anyone asks rudely which one of you is disabled, politely explain that it’s you. That’s how you’re able to carry a 40 pound four year old across the parking lot and still have the energy (and breath) to stop and explain your situation to those who feel the need to ask. If they continue to press, lift up Smooch’s glasses and explain that his eyes rolled up like that is a type of seizure, caused by spending too long in the sunlight while his mom talks to strangers. Thank them for their time and be on your way. Unless there is only one handicapped space left, in which case someone else really may need it more, and running from a regular spot with said 40 lb four year old counts as a workout.
3. 4 year olds still make the short-breathed gasps newborns do as they pause in sleep.
2. Good neighbors who are willing to run over and babysit in the middle of the night are priceless. Their offers to help are not hollow. Family members willing to drive down to relieve said neighbors are also priceless.
1. No matter how hard this is, or how much more I have to learn, there are many grieving parents out there who would give their souls for one more day with their Dravet child, even if it were just one of our “bad” days. And I wouldn’t trade ANY day with Aiden for the world.
A day in the life of me! Getting to see his smile almost every day and feeling his warm hands around my neck make the rest of this crud worth it!
|Posted by Nicole on December 2, 2009 at 10:40 PM||comments (0)|
So I had this whole entry written out last night about the top ten things Smooch has taught me. Unfortunately I have to add one in because I forgot that he taught me how to be flexible!
Today’s concerns have only to do with today. There was a great verse at Moms In Touch on Monday to the effect of “Today’s worries are enough for today. Rest and don't fret about tomorrow's.” It’s my new mantra this week.
Have I mentioned how much I love diapers lately? No, I mean I really love them. I may sometimes look longingly at the other children in Aiden’s class in their well-fitting pants lacking the telltale paper strip sticking out of the back as they drive their trucks around, but my heart belongs to diapers. The good news is that Aiden has an ear infection. Praise the Lord! That means his rough patch last week wasn’t our crash back to reality after a brief honeymoon on stiripentol, but rather just him getting sick. This is his 2nd ear infection in 2 months, but he hasn’t even had a major seizure yet! (I’m now frantically searching for wood to knock on.)
The bad news is that colds bring ear infections, ear infections bring antibiotics, and antibiotics bring… how shall I put this delicately?... constant soupiness. The dog has it too. And Andy’s out of town this week. I was seriously considering slapping one of those babies on the dog last night to get a few extra hours of sleep. But this is about Aiden.
Did I mention my love of diapers? I was reminded again today that Smooch is exactly where he needs to be right now. In diapers. He has so many stresses in his little life, so many bodily things he can’t control, and this is one thing I can help him with. Imagine having your vision go cloudy every few minutes, the world spinning, your entire upper torso being shocked and jerking quickly, and not being able to control it. Poor little guy. So I am toasting Marion Donovan tonight, the inventor of disposable diapers, and thanking her for taking one stress away from my baby and me. If you’re still reading, you are probably a mom. Most dads do not appreciate entire essays on diapers, so I apologize to any males reading this. It may not be glamorous, but it's real. God loves those who roll up their sleeves and do the dirty work
|Posted by Nicole on November 24, 2009 at 8:40 PM||comments (0)|
This isn't a full blog entry, since you've all heard me drone on about how tough Aiden is. But here's a visual testament as he not only endures, but shows off his Holter monitor. The kid was in tears earlier because the stickers are pulling on his skin, but is still able to smile about his "backpack." (Imagine belly diving off the couch with 6 industrial grade stickers pulling on the wires you're trying to leave behind... Now you've got it.) And times like this make us grateful fo his lack of speech - not once has he asked when it will come off, like most 4 year olds would
True, he pulled 3 electrodes off within 3 hours of getting the monitor on, but not one has been yanked off in the 24 hours since... And he only says, "Oww" every now and then. (The skin around those stickers is an awful shade of pink, so I can't blame him there. The tape is no problem - the gel filled stickers under the electrodes are the beasts.)
And, of course, this wouldn't be complete without a shot of his brothers who deserve some attention too. I'd make some lame excuse like "No, he's not in the middle of tackling Owen - they're hugging. Isn't it sweet?" But we all know better, and this is exactly how our last 2 days have gone. They are on their 2nd day of Thanksgiving break and I fear I haven't been giving enough credit to school, gym, and recess. There may be a lack of physical activity in the house...