Ben is still doing well. He is having some eye blinking and some twitching while he sleeps, but nothing like what we were seeing before. I made a call to Children's today to discuss this and his current med dosages, but have not yet heard back.

 Next week he has two big appointments. One with Neurogentetics. As I was reviewing the paperwork, I saw a certain doctor listed-one who in the past told me to give up and find a good institution for Ben. I'm pretty sure it's the same guy. I am not happy, as I never wanted Ben to be in the same room with him agaon, and I'm positive this guy is one diagnostic tool short of a toolbox, but it is too late now.  We have to do this if we want to get to Endocrinology. I have no hope in a diagnosis from this venue(even less now) because I no longer believe in the diagnosis fairy. Call me bitter if you like, but Ben's file has been seen by....somewhere in the neighborhood of 30 neuros including the head dude at both University of WA and John's Hopkins.  Nobody has had a clue so fa(including Dr.G who misdiagnosed him before).  I prefer to think of myself as realistic at this point. If we get to Endocrinology and there still aren't any answers, we're going to give up and get on with making the best of what we do know. Then I can concentrate all of my energy on researching epilepsy treatments.

The second appointment is his monthly check up with the keto dietitian and his neurologist, and I think the epileptologist is going to stop by and put her two cents in.  I'm hoping no major changes will occur and it will be a slam dunk.

Last night soccer got rained out as the soccer ball was skimming on two inches of water.  Meg and Ben both went to gymnastics and did NOT get rained out.  Then we had a quiet evening with nothing in particular to do, and it was heavenly.

Today I am still playing catch up from last week. It is amazing how quickly you can get behind, and how long it takes to get caught up again.  I spent more than an hour this afternoon on the phone making appointments and clearing up medical bills.  I keep hoping tomorrow is the day I'll feel like I'm all pulled together again, but so far that has not occured.  Maybe after all the laundry is done.

Teena

yay!  I have my dr.s mixed up. Dave just informed me Dr. Glass is not the idiot I thought he was, but dr. Vlceks' partner and incidentally the #1 rated neurologist in the city. I feel much better!

It's morning still, and I don't usually blog at this time of day. However, I wanted to tell you that Ben did much better last night. At first he was having frequent seizures and I was thinking the night was going to be bad.  I waited until he was good and asleep to put the pulse-ox monitor on him. (its stayed on, but there may or may not have been duct tape involved.  Must put duct tape in the hospital bag...).   After that things just smoothed out. By the time Dave and I went to bed, Ben was sleeping so deeply his mouth was hanging open.  We scarcely ever see him that relaxed. Needless to say, Dave and I slept like rocks, and are barely coherent today. The physical and emotional relief is overwhelming!

The people come and pick up the monitor this morning, and then of course, we wait.

Today I will try and pick up all the scattered pieces of Ben cooking and laundry and housework that all got shuttled aside the past...three weeks.

Teena

Things were certainly not perfect last night, but the seizures were further apart and less severe when they occured.  Dave and I were much happier, and were able to get some sleep, waking only every hour or so instead of every few minutes. On the down side, Ben seems a little sleepy (instead of lethargic) on the higher dose of meds. We are going to stay here for a day or two and hope full seizure control is on it's way as his body adjusts to this dose.

I cannot even remember(the past two weeks are a complete blur) if I mentioned on here that Dr. Mark has a theory that Ben may have sleep apnea, and it may be contributing to seizures. Oh yeah, I did mention that. The pulse-ox monitor was delivered today, and we will give it a try tonight.  I am really praying that he keeps the monitor on, and we are successful in getting this info on the first try.

My sister and her four daughters came over today to give me a morning of. Deena brought breakfast and lunch, and gave me a massage. She's a nurse, so she checked my blood pressure while she was here. She had been very unhappy with my previous results, but was pretty happy today.  She left lots of yummy treats, so I am stocked up.  Her daughters made the meals and kept an eye on Ben so I could enjoy my massage.  My niece works at Starbucks and loves me, and brought me a gift of a pound of coffee. She also remembered my favorite roast. It was a really nice morning-I appreciated all the loving care!

My friend Julie is here on business the next two days, and we are hoping to steal a little bit of time together tonight. It looks like it will be family time rather than one on one since I have not yet heard from Dave about his coming home from work. He has two or three projects to wrap up by Wednesday, and then things will calm down a little.  In the meantime, all work and no play...

Teena

Things improved a tiny bit last night with Ben getting short periods of rest-about 20 minutes at a time. We woke him numerous times in the night to achieve this.  Of course Dave and I slept rather poorly.  Ben was pretty mellow today, but I noticed yesterday he was digging at his ear, and now it's official-his ear is hurting him. I have not tried to get a look in there, I just put some homeopathic ear drops in and I'm hoping for the best.  Any kind of illness can really complicate seizures, so I'm hoping to get right on top of this. We raise the new drug, Clorazepate, a little bit tonight, and are really praying this will make the difference he needs to get some sleep.

Otherwise we had a lovely, quiet day. 

Ben is still having frequent seizures tonight, even though we raised the meds today. To give you a frame of reference-he is having between 400-600 siezures per night. His anxious parents finally called neurology to be reassured he is ok and there is nothing else we can do.  We do feel a bit better, and have a slightly adjusted plan to raise the new med a bit faster to get to therapeutic sooner. As long as he doing well during the day(which he is) they are not concerned about his safety. We just have to get through this.

I did run away and spend the day at my parents house. I got a good nap in, read my book, finished a few thoughts from inception to completion, and overall relaxed. Because my mom is still a mommy, she made me a steak dinner, and because my dad is still a daddy, he hooked up a DVD player in the spare rooom for me.  I think I saw at least 25 minutes of Sense and Sensibility before I crashed.  Amazingly, things were so smooth at home, David also got a 1 1/2 hour nap. Thank you, Nate and Megan, for taking care of Ben!  And Thank you mom and dad, for letting me crash at your place!

Teena

The new meds seemed to help a tiny bit, but not much.  The docs don't really expect us to see a change until at least tomorrow.  Needless to say, we still didn't get much sleep, though I did sleep in this morning. My headache is back, but at this point I think I am just exahusted. I am hoping to take the day off tomorrow after soccer, run a couple of quick errands, and go to my parents house and take a nap.  I haven't asked them yet...

Ben is doing great, despite the seizures. He is still irritable, whether that is from the meds he's had this past week, or having been stuck at the hospital, or if he's just exhausted from having seizures all night, I don't know. I guess it's not surprising that he's irritable.  The amazing thing is, we have seen another verbal jump. I cannot explain this, but with few exceptions, when Ben has large or clustered seizures, we have seen jumps in his development. I guess it is our silver lining, and one we are more grateful for than we can express.

My five year old nephew was here today. He told me Ben was previously not his best friend, but now that Ben can play with him, Ben is his best friend. Words to treasure forever-thanks for telling me Shaun!  I mean, there is no sharper critic than a verbal five year old, right?  It shows Ben is really making progress in his ability to play with his peers.  God is good!

Teena

Ben's seizures did stop for a while last night, but started again in the wee hours. He slept until almost 10:30 this morning. Despite it all, he woke cheery and full of words-serious balm to a worried mother's heart. In fact, he's looking and acting better than he has in days.  He's eating, drinking, peeing, and talking. All things that make me happy.

Our first call came from Children's before 9AM. There was much backing and forthing, so I will sum up.  The doc got Ben's Rufinimide level back, and it was 12. A therapeutic dose would be 40. The Rufinimide that I told them last week was going to get too low and cause problems is most likely our culprit. grrr. I gotta learn to really be firm about these things-I'm not sure I've been wrong yet.  Either way, the Rufinimde went up today. We also have the option to change  out the Ativan for another med in the same fammily that can give Ben some help to get through the next few days while we wait for his Rufinimide to get to therapeutic levels again. We haven't decided yet what we are going to do, we plan to see how he does this evening and make the neccessary changes.

Ok, it's been about five hours since I wrote all of that. Many things have occured. My two favorites are: My sister in law brought us dinner and brownies-I really needed that. Thanks, Kathryn.  The other is that I stopped by Dr. Mark's office to have him check my blood pressure(Megan was nagging me. Honestly, where does she get it?)  and it is back in a normal range-Praise God! I truly consider this a miracle, considering what we have been through and how I have been feeling.

Dr. Mark also told me he had made some arrangements to have a pulse ox monitor delivered to our house so we can check Ben's oxygenation while he is sleeping, as lack of oxygen can cause seizures. Interestingly, as we have gone through the last two weeks I have wondered if Ben possibly has sleep apnea like my dad (sorry Pappy, he snores just like you!). Dr. Mark is on the exact same track, and he has a plan. I'm not getting too excited, but I am always glad when we have another lead to look at.

Bed time has come and gone, and sure enough, after Ben had been asleep about 15 minutes the seizures were back.  Dave was at Children's picking up the new med(thanks dear, I couldn't face another trip!) and as soon as he got home we switched Ben off of Ativan and onto Clorazepate(no idea if I spelled that right).  You cant' take both meds at the same time because they are from the same family, and it would make him very druggy.  We're not really sure what this means in terms of the wean, but we think it means the wean will speed up...once Ben is stable.  We will hopefully see a difference from this change within the next couple of hours.

There is so much more, but my brain has just reminded me that I've had about 10 hours of sleep the last three nights. Apparently my brain has taken a vacation alone in protest. I'll try to continue updating tomorrow.

Teena