Ben slept fairly well last night, but did have another partial complex seizure this morning. It was very short, less than a minute, but he looked up and to the left, when usually he looks up to the right.  We don't know what this means, but the neuroligists always ask because it tells them where the seizure started. The good news is his recovery time is much shorter than it was, and it seems to affect him less during the day than it used to. (poor kid is getting used to this).  Dave and I are feeling pretty anxious-the doc said if he had more seizures before Sunday, we would bump his meds up again to the highest dose.  We are torn between trusting this guy who has done this a zillion times, and "Mommy instinct" which is telling us this is not the right medication for Ben.  We really feel God brought us to Dr. V, but we also feel like we have to advocate for Ben. What we don't know is where that line is. And does the extra four days really matter?Yeah, I could go round and round about this...if we change meds he has to wean off the Trileptol while raising the dose of the other one. My poor baby.  I really don't know what this will look like. Sometimes they put a kid on more than one medication-ugh! It's crazy making.

Dave is taking the big kids to a bowling birthday party today-(Happy Birthday Avery!)  Ben was invited too, but we are opting to keep him home because it is blackout bowling-complete with strobe lights.  All of the neuros have told us that is not Ben's issue, but while we have no siezure control, we figure why risk it?

Once again I have to thank you for all the supportive emails, phone calls, and especially all the prayer.  So many people are praying us through this, and that is incredible comfort. Only the Great Physician can heal our little one.  Thank you for asking on his behalf.  God has chosen to comfort us by using YOU, so thank you for being willing to be used!

Last night David made the connection that Ben seizures changed after we added CLO back into his diet.  We usually give that in the evening, so last night we skipped it. Ben slept through the whole night for the first time in we don't know how long!  And no seizures this morning.  So-are the meds finally working, or is it the CLO? No idea, we are just so happy to have slept well and to have Ben be himself today!  He is complaing of headache, and is still very clingy, but no crying and in general he is cheerful and very tuned in to us.  We were so missing his gorgeous smile! It is also a miracle he slept well, because he ate a great deal of vaseline yesterday.  As the yeast grows unchecked in his body it makes him crave foods like crazy, and Ben will eat anything.  Petroleum jelly itself isn't so bad, but this particular kind had scent in it, and we weren't sure how that might affect Ben.  We had some Nystatin compounded yesterday to pick up today(our bottle in the fridge was expired. AARGH!) and we'll start that.  I am also going to make some garlic/carrot juice because that combo is a great yeast killer.  I am looking into either Candex or Candidase-both are enzymes that kill yeast.  I'm going to have to add that to Ben's repertoire of supplements.

today we rejoice!

Teena

Ben is having a really tough day. It seems he is finally having a reaction to raising the meds. We are back to uncontrollable crying and serious hyperactivity. He is so very, very tired but will not sleep no matter what i do. he is having headaches and I think stomach aches as well.  We're going for a drive in the hopes that he might sleep a few minutes, anyway.

Please pray for patience!:)

Teena

yes, its the tummy too, he just threw up

Thanks for your patience as we list the seizures that Ben has. We use this blog as a reference to go back to when the doctors need information about what happened and when.

This morning. He had another seizure. Just like yesterday, he didn't sleep very well and at 7:30 he woke up. We played and read books for about 30 minutes and then we were just about to leave the room when he screamed and his whole body went stiff and he had a tonic clonic seizure. This one lasted longer than the previous two, it was about 90 seconds. We have been trying to shelter the older two kids from seeing what Ben goes through, but now that it's been going on so long with no end in sight, we opted to bring them in and let them see what Ben goes through when he has a seizure. It appeared to be eye opening for them and hopefully puts a less scary thought in their head about what he goes through than what they've built it up to be in their minds.

We're a little anxious because yesterday when Teena talked with the doctor's assistant, she said that if he had any more seizures that we would be bumping up his medication to 8ML per dose starting Sunday.

This whole thing is just so discouraging. We want so badly for this to be over for him and it feels like we're back to where we were 2 months ago as we cycled through a period of "less dangerous" seizures back into having the more dangerous ones.

David

Last week we added Cod Liver Oil back into Ben's regimen.  A, D, and E are all so important to brain development, we felt this one was one we didn't want to do without any longer.  He hasn't reacted to it all, which is good!  We also realized after talking with the doc yesterday that Ben is having what is called a "yeast flare" meaning that Candidas is rearing it's ugly head again.  So we started him on prescription Nystatin today.  It may make him feel a little crummy-I'm not sure.  But we have worked so hard to get rid of yeast, we don't want it to get comfy-yeast is the worst offender in interfering with language development.  We figure this is happening because Ben has ingested so many "illegals" i.e. things he's not supposed to have on the diet.  We just couldn't get through all this without yukky stuff in his meds-sugar, milk, dyes etc.

On a funny note, I called the pharmacy today to see if there is a drug interaction between Nystatin(prescibed before this started) and Trileptol.  As soon as I started speaking the pharmacist asked "Oh, is this for Ben?"  He's gonna be famous one way or another!

Teena

Yesterday Ben had two seizures in the morning. The first one was the typical, as of late, partial complex seizure, but he was awake this time when it started which was atypical. He then went back to sleep and about 50 minutes later, had another one. This one however, was of the tonic clonic variety. It didn't last very long only about 60 seconds for which we were grateful, but he appeard to have trouble breathing. So, we contacted the doctor and he got back to us later in the day. His decision was to raise the dosage of Ben's meds from 600MG / day to 720MG / day. The problem was that Ben had some kind of rash on his neck and shoulder. Before doing anything with the medicine, they wanted to have him seen by a pediatrician. Unfortunately, Mark's office was closed and Dr. Wu was not available, But we were able to get him in to see another doctor later that day. And he said that the rash was not due to an allergic reaction which was comforting that we hadn't been giving Ben something he was allergic to for the last couple months. Also, unfortunately, by the time we were done with the doctor, his neurologists office was closed. So, we stayed at the 5ML for the night.

Last night was a rough night for Ben. He was really restless and would sit up and cry about every 20-30 minutes from 11:30 - 3:30. At 3:30. We are pretty sure that this was from the dog food he got into earlier this week. So, we gave him some activated charcoal, which always seems to do wonders for him on nights like that. Sure enough, within about 15 minutes he fell off to sleep and we all slept until 7:30. Given recent events, we kept him in bed with us to see if anything happened, but nothing did so, we all got up. But then at 7:56, we heard that all too common scream that he does right before having a seizure. There didn't appear to be any trigger, he was just standing in front of the window. It graciously only lasted about 40 seconds and then it was over. We are just not sure what's going on. We had high hopes that we would be past this by now, but with his latest two rounds of seizures coming on back to back days and coming when he's awake rather than asleep and being of the tonic clonic variety, it sure feels like we're going backwards.

Please continue to pray for Ben, that he would get better and for wisdom for us and his doctors as we try to find something that will help him. It's just so sad to watch him continue to go through this with seemingly no end in sight.

David

Ben had three seizures this weekend, two Saturday morning, one Sunday morning.  He did great at my family event on Saturday, was very cheerful and happy to see everyone, and was less hyper than Dave and I are accustomed to dealing with. He even made it longer into the day than usual.  However, about 2:30 he walked into a crowd of 10 or so people and said "Bye Bye, time to go!"  Dave took the  hint and took Ben home.  Sunday Ben woke up less calm, but he still did pretty well at David's sisters' house.  At both places he joined the egg hunt and was very excited about it. My mom made him some honey candy for his eggs, and David's sister found some small toys to put in the ones at her house.  We were all exhausted, but for 3 seizures and two big social events, Ben did really quite well-better than we expected in both cases.  We were all exhausted when it was done, but a good time was had by all.

No seizures this morning, we did raise Ben's meds to the final amount on Saturday..now we wait and see again.  He has had some headaches and moodiness, but so far has tolerated the larger amount pretty well.  He didn't sleep well at all last night-we're not sure what that was about except possibly that we caught him eating dog food yesterday.  Dog food is definitely NOT on the diet. :(  Here's to better days!

Teena