Teena called about 7:30 with an update. Ben has managed to keep the electrodes on all day...phew. Byron has been there all day working with Ben and a number of his other patients. This is really good for his own doc to see how he is when he is well and at the hospital. Usually, when he's there, he's so sick or drugged that they don't get a good baseline. Also, he will be there tonight. So, if Ben's night goes tonight like it has been going for the past little while, we should be able to get a professional opinion about what we are seeing. The one thing that he is specifically looking for is the symptoms of ESES. Apparently, the spikes on the EEG would be very specific if this is what Ben has. So, we would know tonight if that is a possibility. If it looks like this is what he has, then Teena and Ben will be spending another night at Children's to see if the treatment for ESES has any impact on his seizures since he will already be hooked up.

Jan was at the hospital this afternoon helping Teena, which was hugely helpful as they tag teamed watching Ben and resting for a bit. :) Aah, it takes a village, or in Ben's case, a small town.

thanks again for all of your prayers and support for our family. We wouldn't be able to do this alone.

David 

Teena called about 12 and said that things had gone great this morning. She really felt all of your prayers. Ben was calm and it was the easiest EEG setup yet. So, thank you all for praying. This time, rather than using paste to keep the receptors on, they used glue and then put a stocking cap over that and a helmet over that. If anyone can get it off, it will be little Houdini, but maybe he'll just get used to it and leave it alone. Miracles do happen. :) Teena has pictures. So, I'm sure they will be posted on Thursday or Friday.

It turns out that she does have to stay up with him tonight and watch for seizure activity. So, do pray for her in that, it has not been a good week for sleeping and she's already tired and stressed. This wasn't news she needed.

Now, just another 7 hours to go until bedtime. Hopefully he will be as cooperative when he's sleeping. He will be in a dead sleep and you try to put something on him or give him some medication and with his eyes closed and still completely asleep, he will fight just like he does when he's awake. So, our hope and prayer for tonight is that he can relax and not do that.

Teena also talked with Byron today and he is more conviced than ever that what Ben has is ESES. Although, he doesn't want to take him off the diet or start steroids, but rather wants to see if we can control it with benzos. It's an interesting piece of news and it would sure be nice if he was right.

On another note, please do be praying for us in terms of insurance. The insurance through the company I am at now is dreadful. What I thought was going to be $942 / month turned out to be $942 / week. Needless to say, we're looking for other options at the moment. It's just important that we don't make a wrong step here because loss of coverage for Ben at this point would make things very tricky.

Thanks for all of your prayers and encouragement.
David

Today it is me who can barely sit still. Tomorrow it will be Ben. In the meantime, I am using this stress energy to get packed and get housework done.  I’m going to run out of housework really soon…OK, that’s not true. But stress energy will only take me so far, lol.

Ben had a slightly better night last night. It was not great, but certainly better than the night before. I was just reading through the terms of this EEG, and it says parents are responsible to record seizures. How does that work when Ben’s occur at night, when I will in theory be sleeping? huh. Well, I never sleep well in the hospital anyway.   Have I mentioned how nervous I am about this, and how desperately I wish it were over? No? Well, I wish it were over, and it was a rousing success.

FYI-I will not be able to post until at least Thursday-I’m not allowed to leave the room except to eat.  Also, the results won’t be in for at least two weeks. There’s a lot of build up for a whole lot of waiting.

I’m going to go look for my perspective now.

Teena

OK, well, we still need prayer. Instead of finding perspective, we found out our new insurance is going to cost almost double our mortgage. uh, yeah, can't really afford that. There are a couple of options, but we also are concerned about major issues with pre-existing conditions...very expensive pre-existing conditions.  There was a misunderstanding that has brought about the current  stress, so we have a little bit of time to work this out... but not much. We could really use some prayer in terms of wisdom. Going without insurance is simply not an option, at least for Ben.

All is not entirely well here. Ben had a really rough night last night.  Dave hardly slept, which did not make for a great morning before starting his new job.  I spoke with the dietitian today, and after three trips to various drug stores, I finally found the new Iron supplement. It is blessedly dye free.  We had to start it today instead of the B6 because the dietitian is greatly concerned about Ben’s slowly dropping iron. He’s almost, but not quite, anemic, and we are trying to head that off at the pass. In the meantime, we are hoping the seizure increase is still due to the Red #40.  If nothing else, should the EEG come off, they will have plenty of data to work with.

Dave had a remarkably smooth first day at work.  It looks like the job is going to be a good fit, the commute wasn’t too bad, and he was home in time for dinner. Overall a good day.

I spent the day trying to get ahead.  I ran lots of errands and took Nate and Megan to the dentist(no cavities-yay!) Tomorrow after I take the older kids to HZ and Ben to Jump Planet, I plan to tackle laundry.  I have a strong feeling that after 24+ hours of trying to keep the EEG monitor hooked to a very active Ben, I’m going to be wiped out.  I just keep praying this is going to work out.

Teena

Well, Ben did a little better last night, but not great. Today his behavior was still very odd, so we’re thinking he’s still cycling out the supplement. If he doesn’t get better in the next couple of days, we’ll have to start looking for another reason for the change. I personally want to reduce meds some more, but I suppose it has to wait until after this weeks’ EEG.

Dave and I spent much of today upgrading his wardrobe for his new job tomorrow. He’s fairly nervous because starting something new is always hard, but he’s sort of looking forward to the challenge.  We are all taking a deep breath and preparing for change. YIKES!

Please remember my mom in your prayers. She had a pretty bad fall today, and the result was stitches, a broken nose, and a jammed thumb. She was in good spirits when I spoke with her, but then she was on some pain killers, too.  :)  Pray especially that she can tolerate the pain killers.  Usually they upset her stomach so badly that she can’t use them.

This is a picture of the dancing egg from yesterday’s Women’s Show.  Apparently he had a bad fall…

Teena

Ben did better last night, but so far things are not looking great for tonight, though things may taper off.  He was more normal today, though not back to normal.  We hope tomorrow will be better.

We had a crazy day-Dave was "mom", Megan and I went with my friend Kim and her daughters to the NW Womens' Show. It was a great day-hey we got free massages!  Plus I got to spend some quality time with Meg, a chance I rarely get.  Nate went to a work day with church to help pay for an event he wants to attend next week.  Once we all returned home, Dave's brother and his family came by and we all had dinner together. Crazy day, we are all worn out.

Tomorrow Dave starts to prepare for his new job...

Teena

Ben had a pretty rough night last night. Today he has some new cold symptoms, but I’m also seeing some strange things…toe walking, odd noises, weird jerky behaviors.  I know these signs-Ben is reacting to something he’s sensitive to.  The only new things are the B6 supplement, and the iron supplement.  I’m strongly suspicious of the iron supplement because the outer coating is red. Yep, red.  Most likely red dye #40, which could also explain last night’s seizure increase. Dave and I were thinking we ought to give it a try because we have never definitively proved #40 causes seizures.  Now we will have to pull the supplement and see if Ben gets better.  Of course, it’s the weekend and the dietitian won’t get my email about what we are doing until Monday, but there it is.  They docs made a last minute change to the supplement, I’m not sure why, so that will have to discussed before we make any changes.  GRR to red dye #40-I hate that stuff! 

Ben’s breakfast today-macadamia pancakes and bacon.

Teena

So I finished typing this, talked it over with Dave, and began to write to the dietitian to tell her our suspicions. As I was writing, I realized that I had forgotten to give Ben the B6 for the last three days…thus successfully identifying the iron supplement as the problem. It’s probably the dye. Did I mention I hate that stuff? or that my other kids get home made candy for holidays because I can’t stand to personally give them stuff I consider akin to poison, and that I am thinking about not allowing them to eat it at all, because if it affect Ben this way, what unseen things is it doing to the rest of us….<deep breath> Anyway, I think a little Divine intervention came into play here, and I am very thankful that we know which supplement to drop, and can do so immediately.