Halloween Fun

Happy Halloween! Sophie’s is greeting everyone coming to the door, but unlike years past, Alex does not want to hand out candy this year. He discovered a video tape from 10-12 years ago and has been watching it non stop for 4 hours. It is call Kid’s Songs: Day at Camp. He laughs at the fish story and’ found a meatball’ song.

Drug change

He is back! Alex is almost ready to go back to school. Maybe Monday. We stopped Phenobarbital Tuesday night, cold turkey. And at the same time put him back on the drugs he was on before going to the hospital.

Within 24 hours he was alert, out of bed and ‘talking’ to Grandpa non stop.

A Little Progress

Still not eating much in the way of solid food. Tonight he did surprise us when he grabbed a box of Cheez-Its and then later enjoyed Dutch Mints.




Too strange. He never has shown an interest in either.

Doctor Visit

Well we are off to see the Doctor. Alex has again gotten a fever. Now at 102. We have given him Tylenol and Bentryl but they have not help.


Alex has gotten a rash. And along with the fever our Doctor wnat to see him. Marycke thinks it may have been the additives she has been putting in the smoothies.

Sleepy Sunday

Alex had a pretty good night and day. His fever is back down but he slept most of the day. Even now, almost time for bed and he has been sleeping all day.

Marycke is hoping it is not the Pehnobarb but something is no sitting well with Alex.

Seizure Saturday

Well from 12:42 Am, 10:27 Am, 4:15 PM and 6:20 PM is seems seizure Saturday is an appropriate name for this post. Who knows why all the seizures. we did have a front move into town and also people are complaining about allergies. we learned early on that Alex is allergic to many things. Maybe that is causing the fever.

Whatever it is it is making for a stressful time. For the last 3 weeks Alex has been sleeping in our King size bed, with Marycke. Then unfortunately, more often then not, when Alex seizes, we pees in the bed.

But we did get a chance step out for an hour or so and attend the Epilepsy 'Day in the Park'. The park is in the flight path near the end of the runway. Alex enjoyed the planes but only for about 15 minutes.

He asked for Mac Donald's and at first said he wanted fries AND nuggets. But by the time we arrived to the drive through he only wanted a coke and fries.


Alex crossed the long bridge to the Park.















Then he 'signs' airplane as one passes over.

Fortune Cookies

Well Alex continues to surprise us. Tonight I got Chinese carry out. At the conclusion of the meal I pull out the fortune cookies. Lo and behold Alex reaches over, cracks one open and eats it. 21 years he has never eaten a fortune cookie.

Then he grabs another and another. Out of fortune cookies Marycke finds a serving of Apple Jacks and another of Lucky Charms. Wow neat to see him eat!

Bummer, time for bed and he has a seizure. Maybe it was not good for him to eat. From Biblical times to the present, epilepsy has been a disease shrouded in mysticism and fear. Seizures, which are now known to be a neurophysiological phenomenon, are the defining characteristic of epilepsy.

It has long been known that starvation is an effective, if impractical means of controlling seizures. There is even a reference in the Bible to starvation controlling "fits." Mark 6:29 "cured by fasting and prayer." The first scientific study of fasting as a treatment for epilepsy was conducted in France in 1910. The researchers concluded that seizures were improved by absolute starvation.

During starvation, the body first burns all of its glycogen. It then begins to burn body fat and protein for the specific purpose of supplying the brain with glucose. As fasting continues, the body shifts into a state known as ketosis. The brain begins to use ketones from the metabolism of fats as energy rather than glucose. This shift in metabolism also correlates with a reduction in seizure activity.

Doctor Visit

Well we are off to see the Doctor. Alex has again gotten a fever. Now at 102. We have given Tylenol and Benedryl but they have not helped.



Alex has gotten a rash. And along with the fever our Doctor want to see him. Marycke thinks it may have been the additives she has been putting in the smoothies.



Yeah! He is over 100 lbs again. Still not eating much more then smoothies and Ensure but at least he is not loosing more weight.



Meanwhile, Sophie continues to be very interested in Alex. Always trying to play with him. And when he has seizures she seems to know something is wrong. She comes over and licks his face or lies on top of him.


She is getting so big. She also is loosing her baby teeth and chewing on EVERYTHING. I always seem to have only one shoe. So Marycke went and got her a BIG bone. She seems to enjoy it!

Little Progress

Still not eating much in the way of solid food. Tonight he did surprise us when he grabbed a box of Cheez-Its and then later enjoyed Dutch Mints.

Too strange. He never has shown an interest in either.

Play time for Sophie

Sophie has discovered the sprinklers. I never knew a dog could have such a fun time with a couple of sprinklers.

Better

Well, a litle sleep (for me and Marycke), Tylenol for Alex, and a 'bath' to cool him down and his temperature is back down to 99.3. If we can keep it under 100 the rest of the day I suppose no trip to the ER - today! Thanks for all the notes and prayers.

Meanwhile, ran across this video from last month. Sophie was trying really hard to wake up alex. But Alex sleeeps... he SLEEPS!

Neal

Still not eating

Unfortunately Alex has developed a fever of 102.4 So we expect to have to go back to university hospital this AM if we cannot get it under control

We are coming up on day 21 of Alex not eating (His only nutrition is Ensure that we giving him 3 times a day squirting it into his mouth with a syringe and hoping he does not spit it back out.) Not eating makes him very susceptible to infection. So Doctor Martin’s office wants to monitor him closely. We may also have to have a feeding tube put in.

On Thursday they determine his medication levels to be 200% of the therapeutic level which may account for his lack of appetite and sleeping 15-20 hours a day. The doctors are now backing off on the drug levels.

On the upside, no seizures for the past 8 days!