Keto diet change week 1

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Ryan with his friend Camber.

In the last few months, I’ve changed his diet to include more fruits and vegetables in a smoothie through his PEG Tube (gtube) in preparation for the doc recommendation of the Keto diet, and the changes I’ve seen in him through just doing that much have been amazing. He’s had more balance, has been more regular than he’s been in a long time, he seems to have more clarity – reacting faster to things the less carbs he had during the day.

The last 7 days have been a whirlwind.

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“Look mom, Dori!”

We were inpatient starting Tuesday of last week – April 18, 2017 – to start the Ketogenic Diet to help with Ryan’s seizures. It’s not that his seizures were coming on more frequent (that we know of) we just got to a point where the EEG still showed activity and we really didn’t know when Ryan was having the seizure activity because we didn’t see it clinically (physically in his body) when he was awake. There were times that we saw seizure activity when he would fall asleep on the couch for a nap or before bedtime and we made our way to the bed room….wake him up and the clinical seizure activity stops.

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Manny came to visit Ryan on Tuesday!

So here we are. Today being the best day ever – so far of the last 6.

Tuesday morning he was able to eat whatever he wanted before being admitted. We were admitted about 930am and that’s when the teachings started. Ryan would only be able to have 10grams of carbs per day. To my surprise, even the fruits and veggie smoothies I was giving him by tube had LOTS of carbs in them. Hah. Well crap.

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McNugget visited us on Wednesday!

First things first – we needed to wean him off of the smoothies (you bet I brought some to the hospital with us! It was our norm for the last few months instead of formula!). Lunch consisted of LOTS of meat and cheese, 6 oz of smoothie and 2 oz of the new KetoCal formula. Dinner was 4oz smoothie and 4 oz of KetoCal, more meat and cheese…which Ryan started not liking. He missed his pretzels, french fries, chicken nuggets….all things we used to get at Children’s the MANY times we were there. He’s just not a meat and cheese guy! But thankfully, we’ve got the tube to make up for that! We just needed to get home where our blender was, I thought.

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Sweet Abby loved on Ryan on Thursday before going home.

Wednesday morning he didn’t eat much! We were down to JUST the formula by lunch…which didn’t sit well in his tummy and he vomited a few times throughout the afternoon. Ryan was in Ketosis by Wednesday afternoon/evening….and still is. We ended up doing a formula feed about bedtime and held off on any real food – hoping it would keep him feeling well enough with just the formula. As long as he was vomit free for 24 hours, we’d be able to go home after dinner on Thursday….which happened.

We got home about 730pm on Thursday evening and had a pretty low-key evening. He slept through the night and woke up on Friday morning pretty lethargic and kind of out of it…the keto fog they talked about, maybe? Mid morning – he was throwing up again. Boo! And continued throughout the afternoon – double boo!! And then woke up in the middle of the night…..triple boo!

Saturday was a great day. I didn’t force any foods or any smoothies – focusing mostly on keeping him hydrated with the formula and water. Sunday was another uneventful day…no smoothie until about 2 hours before bedtime.

wp-1493059801462.jpgToday started out like any other Monday – Kinda. Ryan slept through a feeding of smoothie and formula and woke up with a HUGE smile on his face – at the time we were supposed to be OT – so we called for an appointment later and were blessed with one just an hour later. He so enjoys going to therapy and playing one on one with the ladies that love him, and get him and allows him to melt in their laps after they’re done “working”. We came home and he was full of energy and ready to actually try and eat something! We did another round of smoothie and formula – and within 30 minutes he threw it up and took a nap.

We’ll try another schedule tomorrow of just 2 smoothies and instead of back to back meals, we’ll try breakfast and dinner to see if we have more luck with that. I’m hopeful that his energy will return even more tomorrow and with every day after that – that he’ll start doing more than we have seen thus far, and he’ll have more mental clarity to enjoy doing things we all love doing with him….among the obvious of taking the seizures away!

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May not feel 100% but still LOVES clownin’ around to make others smile and laugh.

 

 

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