am ketones 1.2 8:22 am
We have now been purely on non-sugar based medications for over 10 days now. His l-carnitine and felbamate comes in tablets that we crush and mix in water and his valproic acid comes from a special compounding pharmacy that takes valproic acid and mixes in in water for us.
I have his feeding machine set to 190 ml per hour, trying to increase the flow rate so we can more easily obtain the 35 ounces per day that we are trying to achieve with his KetoCal.
am Ketone 1.3 / am gluc 64 - 11:09 am
I realized that Heavy Cream contains one gram sugar per Tablespoon, and I was giving T.J. a cup at night of Heavy Whipping Cream. No MOre! I was basically giving him 15 grams of sugar with each cup of Heavy Whipping Cream. The KetoCal make a good "milk" so that is what he is going to get next time he asks for milk.
am ketone 4.6 - am gluc 78 9:10 am
pm ketone 2.3 - pm gluc 96 10:09 PM
T.J. now has his "permanent" g-tube in his stomach. On Monday, he is going to Doernbecher for another 24 hour EEG brain scan observation.
He gets pretty much all of his nutrition via KetoCal, a ketogenic liquid formula that we pump directly into his stomach. Our goal is to get 35 oz a day of this formula through 5 feedings a day at approx 8 oz per feeding. He is losing weight, so we need to be very attentive to this right now.
His medications have been changed to get away from the sugary, syrup-based meds he was getting. We have most of this stuff in tablet form that we crush with some water and then administer through the g-tube. The sugar in the old syrup-based medications may have been getting in the way of putting his body into Ketosis.
We let him eat "recreationally" as much as he wants to as long as it is ketogenic. He likes Pork Rinds (his "chips"), cheese, Little smokies, and other high fat, NO CARB, food. But we have to be careful that he eats small amounts and chews his food. He tends to tire of chewing and then swallows food almost whole. The food he takes via his mouth must be cut pretty small so he does not have to do a lot of chewing. His No Carb drinks are Heavy Whipping Cream, Crystal Light, Diet Coke, and water.A previous set of labs showed an elevated enzyme in his liver that we don't like ... one linked to one of his medications, felbatol. So we have adjusted his meds for a bit while we get through this situation. The most recent set of labs show that we are moving in the right direction.
His meds right now are Valproic acid, L-carnitine, chlorzapate, and felbamate-felbatol. If he has seizure clusters or a 5 minute siezure, T.J. gets Diastat.
He had a big seizure last night around 11:30 pm. Lasted about 1 min, 10 seconds.
pm ketones 2.3 - pm gluc 73 10:05 pm
He had two of the biggest seizures our new childcare provider had ever seen with him.
T.J. got back this week from 5 or 6 days with Grandpa and Grandma Cusick, Lillie and Matt on Grandpa Cusick's boat. They went through the San Juan Islands up in Washington. From all reports, T.J. did great. He loved the boat. But towards the end he was missing Dora, Blues Clues, Raffi, and the Wiggles ... his TV friends. He was also asking for Michelle (David's dog) and Dad.
But he had lots of fun.
93 blood glucose 6:56 am
T.J. at 4 chicken stars (10 carbs) with Ranch dressing last night! And he wanted more. He drank Diet Coke and did not gag during dinner. Later he had some more Diet Coke and did gag once. But all, in all, I was surprised at how much he was taking through the mouth. Feedings are now 3 to 4 ounces per feeding, 5 times a day through the nasal gastric tube.
Medications are so much easier with the gn tube.
First Ketone reading using meter. Out of glucose strips right now.
T.J. is taking about 4 ounces per feeding 5 times a day. Medecine and food is so much easier now with the g-nasal tube. We at least know he is getting his nutrition now.
The dietician had anticipated a problem with T.J.'s swallow and so she had arranged for an evaluation by a specialist. The specialist watched T.J. in action and immediately ordered an "emergency" full swallow study.
The full study, complete with x-rays and barium, showed that T.J.'s tongue was not assisting correctly in chewing, that chewing itself was poor, and that swallowing was very poor. He was aspirating on his food and drink, some of it going into this lungs. Eating for T.J. was a very painful and very stressful event. His throat was getting fatigued after only about 4 to 5 swallows. He had stopped eating as a defense mechanism against the pain he was having when eating.
So T.J. was admitted to the hospital.
As of tonight when I left T.J. and Lilieth at the hospital, T.J. was alert and in good spirits. During his 5 hour stay in the E.R. with Lillie, he had an IV in him and that is the most fluid and nutrition he has had in weeks. He now has a tube down his nose for feeding that, at least while I was there for the first 15 minutes of it, he was tolerating well.
Please keep T.J. in your prayers. God performs miracles every day and my hope is God heals that part of T.J.s brain that is damaged, if that is what is causing his swallowing difficulties.
T.J. got up at 12:55 am for an hour and at 4:15 for two hours due to stuffy nose and not being able to breath. He is pretty upset.
Dad gave him 3 medications at various times throughout the night to deal with his nose.
Today T.J. ate almost nothing. He drank only a bit of "juice" - Crystal Light. Dad coaxed him into eating a bit of mayo anc chicken for dinner (3 small pieces) but he threw that up about an hour and half later. T.J. is miserable. Runny nose. Slight cough.
Lillie is waiting for her scale so we can try the KetoCal.
T.J. is not at 100% right now. He has a slight cold. He is not eating and drinking is not going great either.
T.J. was sent home from school. His nose was really runny. The discharge was yellow. He is not eating very much at all.
T.J. did not each much at babysitter, but he ate well for dinner. Introduced .5 ml l-carnitine at dinner (in addition to 2.5 ml at night time medicine time). 2 Digest capsules given with dinner. He is as happy as I have seen him in a long time. Great mood! Singing. Wanted to go outside to look at the birds. We had a great time! Wow ...
Finally T.J. ate tonight. He had 3 1/2 pieces of pepperoni and sausage pizza toppings.
T.J. had a few seizures last night. VNS'd him twice.
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