This last week did not get off to a great start. I’ve mentioned we’ve had some issues with an increasing number of seizures breaking through in spite of the modified Atkins diet. We finally bit the bullet and raised his vigabatrin dose Tuesday night when not only were we seeing him have 2-3 a day of his typical seizures, but then he also appeared to be having some sort of activity with no clear stop and start — he just wasn’t right. His eyes would look unfocused and he was physically weak. Sometimes after a rough seizure he has trouble moving around and his arms can’t support him when he crawls, but that’s not always the case and it usually goes away in 30 minutes. But he was like this for three days. I had hoped the diet would be successful enough to allow him to wean meds, but it appears he needs the combination of a therapeutic dose of vigabatrin with the diet. He had gained five pounds since the last time we adjusted his meds, so clearly vigabatrin is just far too essential to his well being. We have now gone four days without seeing any seizure activity since the upped dose and he’s back to his normal active self — a great relief as the idea of possibly having to relocate to Colorado had started rear it’s ugly head again. We are trying to hold on with traditional medicine until the option of medical cannabis is available closer to home.
After all that, it seemed like an appropriate way to end the week by taking part in the fundraiser for Journey of Hope, a charity started by Rep. Allen Peake (who sponsored HB 885 this past session in an unsuccessful attempt to legalize CBD oil here in Georgia) to help families, who have exhausted traditional medical approaches to treating their children’s seizure disorders, relocate to Colorado to get the medicine they need. It all started several weeks back when Kim Clark challenged Corey Lowe to the cold water challenge, a method of raising money for charity via the Internet that has gone viral recently. Kim (a mom from Georgia treating her son Caden in Colorado) challenged her on behalf of Realm of Caring, the nonprofit that has become famous for providing the strain Charlotte’s Web to sick children at a reasonable cost. Corey (a mom from Georgia who will soon take her daughter Victoria to Colorado) chose to challenge more people on behalf of Journey of Hope which started the chain of events that led to me floundering my way into an inflatable pool ring in an Olympic sized pool Saturday morning in the Hose the House for Hope event.
Several representatives, senators and Georgia law enforcement officers accepted the challenge to raise money and participate, jumping into the pool to swim out to the moms from families that were involved in fighting for HB 885. You could also pay $50 to douse a participant of your choice in ice cold water. Oh, and some of the dads dressed up…but I’ll let the photos do the talking on that.
I am happy to say that this much money has been raised so far:
If you are interested in making a donation, please check out the web site for more information — Journey of Hope.
Most of the photos are mine, but a few are borrowed from Facebook…please let me know if you want credit for a photo. I didn’t pay attention when I snagged them 🙂
Remember that Connor kid I used to write about before politics, politics, politics? He’s still around and doing great.
Connor is getting closer and closer to walking. We can now hold both hands as he takes forward steps to us. At his last physical therapy session, his therapist decided to remove the seat from his gait trainer/walker. I thought she was nuts. I thought he’d slump down with the waist support under his shoulders and refuse to cooperate, but he maintains standing and he’s moving better than ever. We had it locked so he couldn’t turn but could go back and forth in a straight line. On a whim the other day, I unlocked the ability to turn and though he careened a little out of control into furniture and the walls (guess we will paint this room last) like Lindsay Lohan behind the wheel of a Mercedes, he had a blast trying to get around.
The best news is this:
Though I started tweaking his diet back in December, we started the full-on modified Atkins diet around the second week of February. We haven’t seen a seizure since March 7. Today is the 19th.
The magic of some whipping cream and olive oil. If only dietary therapy worked for everyone. Thank God. Colorado looks gorgeous, but I do not want to take on refugee status while we wait for the rest of the country to catch up to 2014.
I have not used our Seizure Tracker app for three days. We have had a few seizure-free days here and there since I started tweaking his diet a couple months ago, but three days in a row isn’t so common and is pretty exciting. I’m not gonna get ahead of myself and say there won’t be future break-though seizures , but I’m so relieved to know diet therapy is truly helping. It does NOT work for everyone, so I’m thrilled that it is working for Connor.
If MAD does do the trick, it saves us from moving on to the more extreme ketogenic diet which would force me to become an organized planner, the absolute antithesis of what I am.
To be honest it hasn’t even been hard due to Connor’s delays. Since Connor is still a bit fickle about textures, he has never developed a taste for a lot of the stuff other two-year-olds have. He doesn’t eat chips and cookies. A good portion of his diet is is still pureed and I rely heavily on baby food portions of meat and vegetables. Since he’s picky about more solid food, I also buy prepackaged portions of chopped carrots and green beans that are soaking in water and softened for him so he can transition to more texture. I also buy boxes of chicken nuggets without breading and meatballs. Basically, everything is already portioned out with all the nutrition info on the side. So it’s easy to keep track of his allotted 10 net carbs a day.
I started tweaking his diet a couple months when we were trying to get in somewhere to start the ketogenic diet–only to discover most hospitals take months to get you in. For a long time I just reduced his carbs, but didn’t stick to a particular limit. I just avoided pastas and gave minimal fruit. It seemed to help a little, but seizures were still almost daily. As I read more about it, I started giving him half and half occasionally instead of milk. Then, a couple weeks ago, after checking in with a nutritionist, I started stirring olive oil into his food, and switched from milk to heavy whipping cream mixed with water. I try to spread his carbs and fat evenly through the day. There is no specific amount of fat required–just “liberal use.” To figure out the 10 grams of carbs, I just look at the nutrition info and subtract the dietary fiber from the carb count because those carbs don’t count. I bought book that goes in my purse listing nutritional content of food for the process of getting him to eat more table food. Then I went to Walgreens and purchased Ketostix. Those are used to periodically check his urine for ketones. If the diet is being done correctly the color of the strip should reflect moderate to large ketones. The first time he had small, so I worked on spacing out his fat intake and his last two checks revealed large ketones in his urine. Ketones are what is left behind when the body starts burning fat for energy instead of the glucose from the carbs most of us run on.
Checking the urine of a kid in diapers is super fun. A book had recommended using cotton balls to soak up urine and squeeze it onto the strip. The writers apparently haven’t had much experience with today’s super absorbent diapers because I have to tear through the lining and stick the strip into…whatever that stuff is that spills out of a torn up diaper. Things that would have made me vomit before a kid.
One of the first changes we saw a few weeks ago was that his random seizures during the day were significantly reduced. But waking up was still a big trigger for him. I knew I would see one almost every morning and after nap. But even those have reduced, and I have seen none for three days. He even woke up twice this afternoon–mid-nap and at the end of the nap. I watched closely. No seizure!
Plus, when he was weighed recently he came in at 30 pounds. Last time any med changes were made, he was 27 pounds. So we are seeing this improvement, even though his meds aren’t calculated at his current weight. It would be so amazing to get him off one, if not both, meds. Fingers crossed.
Here are some photos from Disability Day at the Georgia capitol the other day. Several parents went to represent HB 885, which we hope will pass and move this state toward allowing people to access the medicine they need.
I can’t believe Christmas is over already. Seems like it was Halloween a week ago. Connor had a good Christmas, despite some not so fantastic developments beforehand.
I blogged previously about his bout with bronchitis and I mentioned that instead of an increase in seizures, which can happen in times of illness, he had a major decrease. Turns out many other parents have experienced this when illness causes their child to stop eating much. Hopefully, that’s a sign that the ketogenic diet will work for him. Did I say ketogenic and not modified Atkins diet? Yes, you read that correctly and I’ll come back to that.
Turns out, a week and a half almost seizure free wasn’t worth it because once he recovered and started eating again, they came back with a vengeance. They were longer, rougher and he was wobbly for a bit afterwards. His seizures for the last several months have topped out at 30 seconds. Now they were lasting two minutes. And they looked…odd. I sent a video to his neurologist who called me with the %&*# news that Connor’s seizures had morphed into tonic-clonic (grand mal) seizures. Now, I knew they were rougher than the partials we have always dealt with, but you can read descriptions all day long of seizure activity and it still may not look exactly as expected. So they were rougher, but still not as rough as the grand mals I envisioned. I was shocked and not shocked at the same time.
So damn. A new seizure type. Common in TSC, but we had been lucky to go so long without that turn of events considering Connor’s seizures started at birth. Until now, other than partials, his only other confirmed seizure type was infantile spasms. I have sometimes suspected absence seizures, but those are tough to peg.
Shortly before this development, his neuro had changed his mind about the recommended course of action. As I mentioned in another post, we were trying to get him into the Children’s Healthcare of Atlanta at Scottish Rite or Egleston ketogenic diet clinic for consultation regarding modified Atkins and seizure control. They couldn’t get us in until March, four months out from when we sent his records over. It took a month for them to even make the appointment, and our neuro was quite perturbed that after a month of trying to get started we had gotten nowhere and had three more months to wait. He did not say this, but my guess is that he was on board with MAD when he thought we’d be able to test out the efficacy quickly. Now, that we are facing several more weeks of seizures, I suppose he wants to take a more hardline approach. With the appearance of tonic-clinics, I’m very much on board now, whereas before — I was NOT thrilled with the idea of keto.
So we have continued our efforts to get in earlier at CHOA and they also referred us to Johns Hopkins and UAB in Birmingham, which also has a TSC clinic. Johns Hopkins also can’t get us in until March. So far UAB is the winner with a date of Feb. 4. So unless we get a miracle at CHOA, we will drive two hours to Alabama, which is preferable to flying to Baltimore.
In the meantime, we have upped his vigabatrin, something we were trying to avoid. His seizures shortened again and were less severe, though they still leave him wobbly. Most days he’s had one. Until two days ago when he had five. Yesterday he had one that left his right arm almost useless for 30 minutes after.
But on a happier note, Connor sure cleaned up at Christmas. We opened gifts at home in the morning with Chris’ parents who were in town, then headed to my parents for the afternoon and dinner, then stopped by Chris’ brother’s house where Connor went hog wild with his 10-year-old cousin Cody and their dog.
We can now start a family band, hopefully less annoying than Laughing Pizza, with Connor’s new keyboard, drum and xylophone. I continue to live vicariously through him by getting him a tent for his playroom (I can’t wait until he’s old enough for the Power Wheels I never got in the 80s). One of the gifts my parents gave him is the rideable airplane from Cars. He likes it until he accidentally triggers the mechanism that makes it light up and make noise. He takes off like a bat out of hell, so I suppose I will remove the batteries for the time being so he can play with it without fear of being eaten or chopped up or whatever it is he’s afraid of. He otherwise adores spinning the propeller.
The Christmas gift exchange between Chris and me was rather perilous…for me. Chris is not a “stuff” person. If it were up to him, we’d have a lot more bare square footage in this house. He always makes a list, and I always feel compelled to find at least one thing not on the list. However, I’ve completed his collections (that I started) of Chicago sports team Mr. Potato Heads and garden gnomes. I knew he wanted the Lego Rockefeller Center for his office, so score! An off-list item. Except when I got home, I made the mistake of asking for the updated Christmas list since I had only looked at his November birthday list. Guess what he had added? Dammit. So I gave it a shot by picking him up a button-up shirt at Belk. I stuck to his beloved Izod, but veered from his color palette. I knew there was a 95 percent chance of exchange. Mine’s on the left, his exchange is on the right.
For me he did a good job with three necklaces he picked out on his own, in addition to some Loft clothes I picked. He also got silly with this, which surprised me because my excessive mug collection drives him bonkers.
He also picked up a cow chip clip that moos loudly, as I am obsessed with black and white cows and hold to a belief that if I can get it out of the pantry with no one knowing, the calories don’t count. Massive backfire on his part. The thing is so sensitive, that even after being buried in drawer, open the fridge — MOOOOOOO!. Pour some milk — MOOOOOOOO! Turn on the sink — MOOOOOOOO! Then on New Year’s Eve it went completely batsh** and wouldn’t stop mooing even when we were sitting on the couch partying hard with VH1’s Happy Endings marathon surrounded by laundry (jealous?) I was upstairs when I finally heard Chris lose it and yell, SHUT UP! I heard a drawer being yanked open, so I rushed down to save my cow from possible obliteration.
I’m also thrilled to say we made it through all of 2013 without one hospitalization! Since Connor will be admitted in order to start the keto diet, we will not be able to say that of 2014. 2012 gave us five weeks in NICU, a brain surgery and an in-patient VEEG. Here’s hoping we all have a medically uneventful year.
One last thing — please keep in your thoughts that one of our newer TSC families entered our world of seizures last night and had to welcome 2014 in the ER. I’m hopeful they will quickly find seizure control. He’s doing well I understand.
I was contacted by Dave Terpening Insurance Company to be part of their “I Was Thankful for Insurance When…” post on their blog. I love any opportunity to get the word out on TSC so check it out here.
I had a physical last week. When I got home, I announced that I only had six months to live. My parents laughed and rolled their eyes, a natural reaction from anyone that has known me for 33 years (they were there to watch Connor since Chris was working upstairs). Chris told me to stop it. He never enjoys my macabre sense of humor. I’m not allowed to play games like “What If?” or “Would You Rather?” He doesn’t like hypotheticals, where as I thrive on knowing things like, If I died, would you keep the cats or give them to my mom? Or, would you rather be married to a donkey or smell like a port-a-potty no matter how many showers you take.
My doctor confirmed that she thinks the headaches I’ve been having are migraines — mild as far as migraines go — but still migraines.
I also took Connor to a dermatologist for a wart he’s had on his foot for some time now. One $50 co-pay and $4 for parking later, off I go to Walgreens for standard over-the-counter Compound W. Sigh. I did like the dermatologist, though. He was an old guy that put out the vibe of an old-timey pharmacist. AND he was familiar with TSC! Even though we weren’t there for anything TSC related, he saw his history and asked questions about how Connor was affected, and he was familiar with various organ involvement. It sounded like he had even been the one to diagnose people based on facial angiofibromas, who were otherwise unaware of their condition. It’s always nice to come across a medical professional that actually knows what TSC is, and that he knew about the effects beyond the dermatological made me quite happy.
In other medical news, CHOA is once again trying to give me what I now know is a migraine. We finally got the call to schedule Connor’s first visit to the keto clinic so we can consult about the modified Atkins diet for seizure control. Want to guess when the appointment is? March 18. March. 18. Lots of four letter words when I hung up. I’m still not really clear on how this is going to go. She told me the nutritionist would call me. Possibly to start the diet before that? I couldn’t get a real clear answer, though I expressed my dismay at waiting three months. She also couldn’t tell me how soon the nutritionist would call. So I think we start the diet via phone consult, which is better than waiting three months, but I sure would prefer meeting with the expert before making such a drastic change to Connor’s diet. But like I said, I’m not even sure if that’s the plan yet.
I must also accept the blame for making Connor sick this week. Connor came down with his first normal, run-of-of-the-mill illness. We’ve had seizures, brain surgery and weeks in the hospital…but not one bout of ordinary childhood illness. He woke up late Wednesday night coughing and ran a low-grade fever most of Thursday. No fever this morning, but still coughing occasionally. Fantastically, though fevers typically lower the seizure threshold, I saw no seizures during the course of battling his temperature with Tylenol and Motrin. But why my fault he’s sick? I recently blogged about his superior health and just this week, I thought, man, we might just make it to his second birthday with no viruses! My bad, buddy. I know better. I’ve been sleeping on the floor next to his crib the last couple nights because it makes me feel better mentally — my hips hate me though. Chris would have done it, but Connor doesn’t tolerate snoring.
So it has been a lot of lying around and sleeping, along with more PBS than usual. If I see this Mouse King episode of Super Why one more time, I will scream.
Progress in the eating arena:
On the bright side, it appears we are making progress in the eating arena. His speech therapist has been providing tools to work on his sensory issues with his mouth. He does not appear to have any other sensory issues whatsoever, but try getting him to use a sippy cup or eat food with no degree of pureeing has been about as fun as…as…as trying to make an appointment for anything at CHOA. To eat non-pureed food, it had to be cut extraordinarily small and he would eat in very limited quantities. But this week has been far more successful at getting him to drink from this cut-out cup (which allows me to see how much he’s getting, as well as prevent it from hitting his face making him buck away).
He also ate this whole serving of mac-n-cheese. Just a couple weeks ago, I had to cut the pasta up and mix bites with pureed food so he wouldn’t just store it in his cheeks like a chipmunk. But he demolished the whole thing with no mixing or cutting this week.
He also did well with this, though he didn’t finish due to stubborness. The bites he did take, he swallowed, while before this one was almost inedible because he just built a fortress of peas and meat in his mouth.
These are his other fancy tools:
The blue and orange thingy can hook to his clothes or seat and its purpose is to prevent him from throwing his utensils. Unfortunately, they slide out anyway, so that’s not really helping. The purple and green spoon is bendable to work on getting him to feed himself. Angling it should aid in helping him put the food in his mouth. This is all theoretical as he shows little interest in anything other than being fed or throwing spoons. Or removing food from the spoon with his hand. The purple tool is a textured spoon to desensitize his mouth. He hated it at first, but now it doesn’t phase him. That’s a Nuk brush on the end. He hates that bad boy. It is also to desensitize his mouth. Not just for eating food, but also for rubbing it around in there. The therapist added the rubber grip so he could hold it himself, I suppose not realizing that his complete and utter hatred for it means that if you actually put it in his hand, it will immediately be on the other side of the room.
Now if you’ll excuse me, he just fell asleep and I’m going to check his temperature. He’s made it pretty clear that if I stick that thing in his ear one more time, I get a Nuk brush in my eye, so cross your fingers…
By the way, my blog is nominated for a couple of awards over at WEGO Health. Thanks to those who have endorsed me already! It’s not too late 🙂 to do it here.
Sigh. I really hoped this wouldn’t be necessary, but the last increase in Onfi didn’t make much of a difference and we’re still at 1-4 seizures most days. I e-mailed his neuro and asked if he thought there would be any point to another increase, or should I just bite the bullet and move forward on the diet. I knew when I sent it what the answer would be since he had brought up the possibility of the ketogenic diet a few weeks ago. I was relieved that at least he thought modified Atkins was a reasonable alternative to keto. Not that I think MAD will be easy, but just the thought of keto intensely overwhelms me.
I keep reminding myself that if it works, it’s worth the extra effort, and if it doesn’t, we only do it for a few months. We”ll be meeting with a nutritionist at the CHOA keto clinic to start.
But if it doesn’t work…then what?
We’ve tried seven different medications, and even more effective cocktails only decrease seizures — they don’t stop them altogether. Sure, there are more meds we haven’t tried, but as I shared in my previous post about medical marijuana:
…less than 1% of patients who failed to respond to three anti-seizure drug regimens achieved adequate seizure control on subsequent drug treatments even though some were treated with as many as nine different drugs or drug combinations. -WebMD
I’m going to start this diet fully optimistic that it will work. Because if it doesn’t, the other options are to explore surgery again or live with the seizures. Sure would be nice to have the option of pediatric cannabis in Georgia. Please watch this clip from The Doctors in which Paige Figi explains what a miracle it has been for her daughter with Dravet Syndrome.
I am also seeking guest posts from people who are either legally using medical marijuana to treat their children, or are seeking it’s use — possibly entailing a move to another state. E-mail firstname.lastname@example.org.