Sadly, the streak is broken......

Sad to say, just a few days after my last post, Ben had a seizure. It was another large seizure requiring Diastat but it broke almost immediately after I gave the medication. So it seems that the diet has not only reduced the number of the seizures but it may be helping to minimize the severity of the seizures as well. (I'm not sure about that and will definitely ask the Dr's next time we're at JHH).
We had made almost 5 weeks since his last seizure which is the longest Ben was seizure free in over a year. He was sick with a major sinus & ear infection and was having pretty high temps. So, although Ted and I were disappointed, we weren't surprised. We knew that Ben would probably continue to have illness related seizures. In fact Ted and I were more discouraged that Ben was sick already. He hadn't even started school yet and hadn't really been exposed to anyone so his illness was as big a shock as the seizure.
Since then, Ben has recovered from his infection and is doing really well. We were able to continue to wean his Keppra and have finally gotten off the med YEAH! It's a nasty med with miserable side effects so we're very happy to get rid of it. Ben's balance improved significantly since the med stopped and he has continued to improve his vocabulary. He's still speaking in 1-2 word sentences (mostly 1 word) but he's added quite a few more new words. He's latest fad is to bend up his arm and say muscle except he says "musk-cal". It's pretty funny. I don't know where he got it. I'm worried that he's been channel surfing from Sesame Street to WWF!
The diet has been going fairly well. We're still having our battles (mostly in the poultry food group, who hates chicken! it's so bland how can it be offensive ? but Ben hates it!). We've figured out a few favorites (peanut butter balls rule!), we've also found a great "keto mac & cheese" recipe. It's made with zucchini and it ends up being a fairly large portion. Ben really likes it so it's a winner all around. Ben also likes the keto pancakes & waffles but they are a major pain to make. Very time consuming. My friends have been helping with keto cooking sessions. They come over and we cook up batches of some of Ben's favorites. It's been a huge help to me and it makes the cooking a lot of fun. It also gives me a chance to catch up with my friends.
Ben will start school next week. Just 3 mornings a week but he'll be at his local grade school so he'll be close to the house. And he'll have all 3 of his therapists there plus 2 teachers and the school nurse. I've hired 2 UNC students to go with him. I offered this to the school and they agreed to the plan.The students will act a a teachers aide for the whole class but will assist Ben when he needs help and when he needs to go to another classroom. They'll also keep an eye on him to make sure he gets his morning snack & that he's not eating anything else. Ted and I are very glad that Ben is starting pre-school. He is pretty delayed academically and we're hopeful that once he is off the rest of his meds, he may be able to learn a lot.
I'm always amazed at the number of people who have come into Ben's life to help him. I've started writing down the names of all the people who have helped Ben at one time or another. It's wonderful to look at and it makes you realize that your not alone. I'm sure one day I'll show it to Ben.
The list is really long and I haven't even included family and friends. With the start of school, Ben's "helper" list has added 2 more teachers, 3 more therapists (plus the two who already see him) 3 UNC students, and one school nurse. Not to forget the folks who are already taking care of him (1 dietitian, 2 pharmacists (1 regular, 1 compounding), 2 eye Dr's, 4 neurologists, 1 ENT Dr, 1 pediatrician and 1 social worker). They are a group of dedicated and generous people. They've helped Ben so much and continue to improve his life and his future in many ways.
Ted and I know this and consider ourselves very blessed.
Best wishes to you and yours as you start the school year

A hundred years from now
It will not matter
What my bank account was,
The sort of house I lived in
Or the kind of car I drove

But the world may be different
Because I was important
In the life of a child

Happy Anniversary !

Congratulations to Ben (and us), we made it through our first month on the diet! It's been so hectic, weighing food & cooking meals, the days have gone really fast but the past 30 days have also seemed like a lifetime. Ben is doing really well. He's still seizure free and we're thrilled. In the past year, the longest time he's ever gone without a seizure was three weeks, so we are now in uncharted territory. It's amazing and sometimes a little scary. In the past,trips to Costco have usually resulted in a seizure (believe it or not). I think he has inherited his dad's aversion to shopping. Today we went and we had no problem, not even anything remotely weird on Ben's part. We have also gotten into the habit of checking on Ben if he falls asleep when we're driving in the minivan (especially if it's dark). It's always hard to know if he's asleep or if he's having a seizure. Now it's a little less scary driving with him b/c chances are, he's just asleep.
Some things are still a little tough. Ben has had quite a few days when he's really hungry. We had some friends over to swim this week and Ben whined alot b/c they brought food and he was still really hungry after dinner. I keep trying to get him to drink fruit flavored water or calorie & caffeine free soda to help curb his appetite but he really doesn't like it. I also bought a machine to make him shaved ice (alot like snow cones only smoother). He doesn't like the shaved ice either, it's to cold, but I'm not giving up yet. I have to find something else that will work as a snack & help with the hunger.
I've also realized that I've been depriving Grace. Since we started the diet, we haven't been eating any bread, bananas or crackers (all Ben's favorites). Last week, out of desperation, I made a half a PB&J sandwich for Grace. She was so thrilled, she hummed while she ate it & her hands were shaking as she stuffed the whole thing in her mouth. She choked it down & immediately asked for more. I felt so bad, the next morning I gave her a banana. She tried to stuff the whole thing in her mouth and she ended up eating 3 whole bananas for breakfast! (I hope this is just a phase or we'll be entering her in competitive eating competitions!)
We have hooked up with a compounding pharmacy. They will have to make any meds Ben may need if he gets sick (e.g. carbohydrate free antibiotics, allergy meds, motrin). They are a very small,very funky little pharmacy (only 4 staff members and no cash register!) But they are really thorough and go the extra mile (the pharmacist figured out a way to flavor Ben's Motrin & benadryl without adding carbs). The kicker is the expense. $85 for 2 small bottles of Motrin & benadryl. Something most folks get to pick up at any drug store or grocery. And, since they are not perscriptions, I don't think we'll be reimbursed by insurance. To add insult to injury, because they are"custom made" & not commercially manufactured, they expire in 8 weeks, 12 weeks tops! Oh well, the good news is that we are weaning Ben off his Keppra. It should take about 3 weeks till he's off completely. We then wait a week and if all is well, we'll then start weaning the Depakote. So hopefully we'll have less meds and less expense once we get him off his seizure meds.
We've also been able to get Ben a place at the local elementary school this fall. We're very excited b/c the school is very close to us and they have a full time school nurse so I know he'll be in good hands. I will probably still have to hire someone to go with him. Because his time will be split between 2 class rooms and to make sure he gets his snack when he's supposed to and that he doesn't eat anything else, he'll have a care giver/aide to facilitate his transitioning between classrooms and to assist/monitor Ben as needed. I'm totally willing to do it in order to help Ben and his teachers. School start at the end of the month. I'll have to talk with Ben's teachers & the nurse before then to do some staff ed. I also have to interview & hire the caregiver/aide. It's going to be a crazy couple of weeks. But compared to the roller coaster ride that is epilepsy, it's smooth sailing!
Hope everyone is well and staying cool. Enjoy the last dog days of summer!!