Tag Archives: Atkins diet

Merry Christmas! It’s a tonic-clonic seizure!

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.

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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.

The hubs prefers a more subtle earthy hue...unless the Bears are playing.
The hubs prefers a more subtle earthy hue…unless the Bears are playing.

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.

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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.

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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.

Clapping with Grandma (Chris's mom)
Clapping with Grandma (Chris’s mom) and remembering Lost back when it was good.
My brother came in from NYC and refused to change a single diaper.
My brother came in from NYC and refused to change a single diaper.

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Mommy is so awesome, i even lover her Mii.
Mommy is so awesome, I even love her Mii.
Christmas Eve bowl-off.
Christmas Eve bowl-off.
Mommy has lost her mind. I'm not getting in that.
Mommy has lost her mind. I’m not getting in that. Mommy is also questioning why her footwear looks so orthopedic here.

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Flying with Uncle Carey.
Flying with Uncle Carey.

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Connor loves Cleo the dog.
Connor loves Cleo the dog.
Dining out with Cousin Cody.
Dining out with Cousin Cody.
Escape at the bowling alley!
Escape at the bowling alley!
A cool cousin is one that gets down and crawls with you.
A cool cousin is one that gets down and crawls with you.
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Medical maladies and eating strategies for the picky eater that will eat anything — sort of.

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).

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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.

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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.

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These are his other fancy tools:

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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…

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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.

Relieved after talking to the neurologist.

Feeling much better this morning after an appointment with Connor’s neurologist. We were dismayed to hear about changes on the ERG, but I really freaked out yesterday when his medical assistant mentioned in an e-mail that he wanted to discuss the ketogenic diet. The ketogenic diet is no joke–read here–it involves hospitalization to start it, measuring everything he eats and it’s more extreme than Atkins. I have never wanted to do the keto diet and have always hoped it would never even be a consideration.  Don’t get me wrong, it’s not off the table and I understand why people do it, and some have great success, but it just seems like a nightmare to me. I hope to find seizure control another way.

I was really freaked thinking we were going to be told Connor MUST come off the vigabatrin immediately and that the keto diet would be on the immediate horizon. Thankfully, not the case. While a change on the ERG is reason for concern and close monitoring, our doctor said to also take it with a grain of salt. Many parts of the country, people aren’t even doing these because it’s somewhat unreliable at this age. It can’t tell you how much vision is being affected, if at all, only that the retina isn’t responding quite the same way with one of the wavelengths or something–honestly I don’t understand it well enough to explain it. Sometimes, later tests go back to normal and it was just an anomaly, and yes, sometimes the peripheral vision is affected, but the positives of the meds outweigh the negatives. In his experience, most of the time a kid has gone off due to changes on the ERG, they ended up back on it because it was simply the most effective med for them. Unfortunately, keeping the seizures at bay must take precedence over perfect vision. If it was an issue of blindness, I’d be much for freaked out, but hopefully, if he does suffer any loss to peripheral vision, he will learn to compensate.

We do have to decide if we go back for another ERG in a month, or wait the standard three months. He didn’t seem to think it was worth the sedation to go back in a month, though. Obviously, we could have to face decisions over again if we continue to see changes, but hopefully that won’t be the case.

As far as the keto diet goes, he brought that up more as a possibility, and he felt the modified Atkins diet was equally good (and less insane–my words, not his). We will revisit that in a few weeks after we see what happens with the increases in Onfi. We are also finally weaning Keppra- the drug that has been the unchanging constant through all this. We’re not sure it’s really doing anything, so we’ll monitor and see what happens.

He also said down the road, there are other drugs we haven’t tried, though he can’t vouch for them when so many have failed. And we can also revisit surgical options as well as VNS. VNS doesn’t thrill me, as I haven’t seen as much success with that online as I would like for such a major surgical/implant intervention. What is VNS? Read here. That being said, like any treatment, one person’s fail is another’s miracle.

Please cross your fingers for the vigabatrin/Onfi combo and no further change on the ERG!

Last night, we attended a meeting with a Met Life rep regarding financial planning for special needs. The truth is, we don’t know where TSC will have Connor as an adult. Maybe he’ll be doing great and self-supporting, but we just don’t know at this point. So it was time to look into how to plan for the possibility that he may not live entirely independently, possibly because of cognitive issues, or maybe because of health/epilepsy issues. Thank goodness, we did! It’s pretty easy to complicate your child’s situation and have no idea you are doing so. If you have a child receiving any government benefits, such as Katie Beckett or if they are over 18 on SSI, if they inherit anything adding up to over $2,000 they can lose their benefits! Who came up with that number as a cutoff? Seriously? And can so easily happen by accident–savings bonds purchased for them by a relative, naming them directly on a will, putting them as your life insurance beneficiary, or just not having a will and they automatically inherit. Once those assets are spent, they can reapply, but those of us who have applied for such things know how nightmarish it can be. And losing them even temporarily can wreak havoc. The presenter shared a story of a woman in her 50s or 60s living in a group home supported by Medicaid. She had been there for a long time. When her parents passed, they had no will and she inherited what they had, which wasn’t much. She had to move out of the home, and within a few months the assets were spent. She could then reapply, but her spot had been taken. She lost her parents and her home.

We will have to have a special needs lawyer help us with a special needs trust that will protect him from anything like that. Anything that he inherits must go to the trust. That way, if he’s receiving any benefits they won’t be affected. Don’t worry, the government gets theirs. This kind of trust is taxed at one of the highest rates, in case you were worried they’d run out of barricades for our national monuments.

 

 

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Join us for a meeting with new Atlanta TSC clinic director, Dr. Wolf!
Sunday, November 10, 2013
2 – 4 p.m.
Mount Vernon Baptist Church
850 Mt. Vernon Hwy NW
Sandy Springs, GA 30327

Dr. David Wolf will be spending his afternoon meeting the local TSC individuals and families of the TS Alliance of Atlanta/North Georgia. Join us for this valuable opportunity to meet both Dr. Wolf and other local TSC individuals and families!
There will be light refreshments available.

RSVP to Becky pin.the.map@gmail.com