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.

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2 thoughts on “Medical maladies and eating strategies for the picky eater that will eat anything — sort of.”

  1. Endorsed you and shared on fb , i love your blog and want to write one myself as a retiree ,granma,, mom to adult children , former teacher health activist too since ive fought tsc all my life and ow fighting my own CLL battle and just living the thrills of fighting insurance cos and pharmacies too. Just havent sat down and concentrated on doing it and figuring outhow to be a blogger… First ill have to stop typing typos on this ipad. Getting a new computer for xmas so i will do it for new years. And maybe get the three books ive written published somehow. Youve inspired me and you do make me laugh . I think you must have my sense of humor if that isnt an insult coming from an almost 66 yr old but my secret ambition was to be a comedienne once …instead i became a standup comedy act teaching high school for 19 yrs before i switched to sh sped where the real drama is hah! Miss it all but i must confess sleeping in IS all its cracked up to be … Stacia was up by 6 am every day for 30 yrs and of course i taught full time so sleeping is my great pleasure now! Youre doing such a good job with connor ,,, just remember not to let tsc consume your whole life .. Or your marriage.Glad you have family support.Sometimes i think i did but having other kids helped me to stop spending all day counting seizures.. Luckily i wasnt a carrier and my other three kids are unaffected and not carriers. Keep writing ! Xxx xx

    Happy Holidays! Susan(mom)

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