Yesterday was some day. Dave's parents took Nate and Meg to Home Zone, then came back to our house and did projects. Thanks so much you guys! what a big help-I love my hanging basket and clean floor! After Home zone they picked the big kids up and took them out for lunch. I think a good time was had by all, and we have some tentative plans for the big kids to go farm in November. Rick and I are cooking up a plan to let the kids incubate some chicken eggs in spring. We may keep some, and raise our own organic eggs. (How did we become these people?)

Seattle Children's-that was interesting. After reviewing Ben's EEG, the neruos' response was the same as Dr. V. These are his best options-brain surgery, Ketogenic Diet,Vagus Nerve Stimulator;in that order. This  was comforting in the sense that Dr. V is certainly steering us in the right direction. It was disappointing in the sense that these are really our only options. Here's what we decided to do. We are going to concurrently pursue ALL of our options.  Several tests and appts were ordered, I will just list them here-MRI(we insisted on this one, but it is required if you do the brain surgery anyway. Ben will have to be sedated, which they dont' like to do. Me either. Ben's seizures on the EEG were still mostly coming from the language center of the brain) Full battery of tests to determine the nature of Ben's developmental delay, entrance evaluation into the Ketogenic diet prgram, and neccessary blood work, meeting with Ketogenic diet nutritionist(won't that be fun?), and a consult with a gastrointerologist-for the purpose of seeing if Ben has some sort of birth defect or systemic infection that would link all of his symptoms with his food issues.Most, if not all, of these appointments will happen between now and the first of the year. Isn't the holiday season a great time to do a tour of Seattle Children's?(they just changed thier name) I hope to be able to call on local family and friends to watch Nate and Megan so Dave can go to work. Children's does have a sibling care room Megan loves it, Nate not so much. They would rather have playdates no matter what.

Ben was seizure free all day yesterday until 9:00. It was so wonderful to see him laughing and playing!  He had a rough night, but once he woke this morning, so far, no more seizures. They are now 30 seconds or less, so even though they are frequent, they are not nearly so scary as the long ones, and he recovers very quickly. The transition to Zonisimide seems to be resulting in some irritable behavior-Ben is pinching, and throwing brief tantrums. He is till giving us a terrible time about taking his meds-he spits them right back out, and we stuff 'em back in. Twice a day...it's vey stressful. If this one stress could be relieved, both David and I would feel better.

We continue to be unbelievably busy, so we're hoping things stay smooth for Ben. My friend Heather is dropping by this morning to bring me some items for Megan's party. My mom is coming around 11:30 to bring Meg her birthday present and go trick or treating with us at the mall. Megan has her nine year old check up at 3:45. Our friends the Burgess' are bringing dinner and we will all trick or treat the neighborhood. Tomorrow Nate has a tournament game at 11, Megan is having friends over for a tea party at 5:00. I plan to collapse at 8:00.

I poured butter over pork rinds and flavored them with chocolate, cinnamon, and pumkin pie spice. I put these into individual bags for Ben to have as candy. I am also going to make him some refigerator fudge. oh, and gluten free cake for Nate, and cupcakes for Megan, and brownies for Ben. ack! Birthdays!

Teena

Today-we had a delightful day. Ben LOVED trick or treating, and he enjoyed all the treats I made for him. he was adorable in his puppy costume, and so excited when he saw himself in it.  No siezures all day until around 7, just when we were heading out for trick or treating. He had two, then went out for a while. He got tired and he and Dave headed for home. This evening he has had some absence seizures, which is a bit better than other kinds, and they only last a few seconds. Not ideal, but better than a tonic cloinc where he hits the floor-hard.

This was the happiest, most peaceful day we have had in a while. It was a great day for family. My mom came over to bring Megan her birthday present, and she went trick or treating with us. We had a light day of school, and some very good friends-the Burgess' brought dinner and spent the evening wth us.  They left us enough goodies to last the weekend, so no more cooking for me!(Thanks Elaine!) I also took Megan in for a 9 year old check up, and she is perfectly healthy. YAAAY!

My good friend Erica called tonight. they had some tests done yesterday that proved that Jennifer has reflux in her kidney-this is big news and will take them in another direction for treatment. A real answer to prayer. Unfortunately, it looks like the test may have given Jennifer another infection,  and the last I heard they were in the ER at Seattle Childrens-Jennifers temp was 105 and climbing. Please do remember Jennifer as you pray for Ben.

Thanks so much for your faithful prayer!

Teena

Ben had a bad day again-many, many seizures. The good news is they are much shorter and far less scary. We decided at 7:30 to give Ativan so he could get some rest. He calmed down pretty quickly. He slept much of today which was good for all of us. Apparently the Zonisimide makes him sleepy. We also lowered Topamax today-We're really hoping to see good things from that.

I don't think I mentioned that in my reading the past week I kept seeing it mentioned that Melatonin can trigger seizures for some people. So bye-bye Melatonin. We are also wondering about the  nitrates in bacon, and Ben eats a lot of bacon. So we are going to have to find a nitrate free brand...just in case. We have to keep narrowing it down-one day we may find the answer. When I talk to other parents who have kids with intractable epilepsy under control, they all have bizarre things that were the triggers-interestingly red dye #40 tops the list. All of them are careful about chemicals, getting meds lower(all neuros we've seen have said you can't get doses so high they trigger seizures, but all the parents tell a different story) I have to tell you, it is so refreshing to be in a group who all have kids as sensitive as Ben. It's very affirming, because most medical people( with the notable exception of Dr. Mark) look at me like I am nuts when I start to tell them about my boy.

Dr. Vlcek called to see how things were going, and to give us a schedule for raising the Zonisimide, and lowering the Topamax. So we are in a holding pattern for the time being.

Tomorrow we go to Childrens, and see what they have to say about Bens' recent EEG, and what sort of other resources  are out there.

Dave's parents came to visit today. Terry helped me clean, and Rick helped David with some household projects. Then Terry, Megan and I went to Build-a-Bear, and Megan got to pick out her own birthday present. She is one happy little girl. Then Terry bought me a coffee, and I was happy, too! (white chocolate Maple latte-yum!)

Teena

Ben had a very rough night, and a bad seizure start to the morning. We spoke with the neuro early. He said he still wants to explore the idea of brain surgery for Ben. HMMMM. He also wanted us to start a new medication, Zonisimide, tonight, but it got called in late and the Pharmacy didn't have it, so tomorrow is another day. We are also going to try and lower Topamax tomorrow. Dave and I are in a daze...we don't know what is best for Ben. We just know we don't want his entire life to be this way. In the meantime, we are trusting that God led us to THIS doctor. So we explore his suggestions, and act on most of them. We continue to pray for guidance and look for open doors.

We have a meeting at Childrens' Hospital Thursday to review the results of his EEG. We'll see if there are more options, or if we can get into the Ketogenic program.  BTW, Ben's Ketones were at 160 today, an all time high. Now if I can just keep them steady. I have been reading that most people have a rough start like ours, and it takes about three months to begin to see results. we are already one month in, and hope springs eternal.Ben's last seizure today was at 1:30, so today is better than yesterday. The neuro used a technical term for Ben's state-"whacked out"

Today my friend Heather did not come over, one of her children was unwell, and Dave is not feeling so great either.  Plus I was worried about how Ben was going to be today. So we bagged it for another time. Nate and Megan were invited to my friend Elaine's house, and they had a lovely time playing over there. She fed them dinner and brought them home. Ben and I got a lot of school done when it was just the two of us, and he settled in to some good pretend play. we were able to read lots of books, and he was the most co-operative I have seen him in weeks. These extra meds and resulting illnesses have really taken their toll on his speech and attention span. I had a relaxing afternoon, and was able to complete a couple of projects around the house.

Tomorrow David's parents are coming to visit, and I think  spend a little birthday time with Megan. We haven't told her yet. Thursday morning they are going to take Nate and Megan to Home Zone so Dave and I can be at Childrens' by 9AM. On a funny side note, my friend Erica with the sick daughter Jennifer I mention on here will also be checking in at 9AM.We often joke that we ought to co-ordinate so we can see each other. It happened all on it's own!

Teena

Ben had multiple seizures. One happened in Dr Marks office...we were there because my allergies caused an nfection in my tear ducts and its' spreading to my lymph nodes. Once he fell off the table onto his head...the most recent one lasted six minutes. The nuero does not get back until tomorrow, so we are flying solo. Ben fought like a bear not to take his meds tonight-he purposely threw them up twice. The third time they stayed down. We are stressed and heart broken. We are supposed to have friends over tomorrow, but I dont' think I can emotionally handle it. I lack the energy at the moment to write more

thank you for your prayers

Teena

Ben seems a little better today-his tummy is still really upset, so his eating is sporadic. However, his Ketones were back up and the rash is mostly gone(PHEW! the bad rash is called Stephens' Johnson Disease, in case you want to look it up. Ben does not have it) He did have another clonic seizure this morning, but only one. What we have learned about breakthrough seizures, is they break through any thing-meds, no meds, diet. They're just going to happen. 

One interesting and very useful thing I learned in the hospital is that if you touch someone when they are having a "seizure episode" and the episode stops, it wasn't really a seizure(side effect of meds, twitch,  startel reflex, dream, etc) This has been really helpful in figuring out what is going on with Ben's strang ebehaviors during sleep. Not seizures! YAAAAAY!this little tidbit greatly reduces our stress, as we both live in fear of sleeping through a seizure cluster such as he had the other night. BTW, I looked it up, and according to the definition of status seizure, Ben was in status while in the hospital-status is not regainin consciousness in between seizures. He did at some points, but not others. I still can't believe they were going to send him home at first. Conveniently, Ben chose that moment to go completely unconscious, lose the will to breathe, and lose control of his right leg and arm. He could not move them for nearly and hour, and the docs kept asking me if he could walk. It was pretty horrible, I thought perhaps he had brain damage or had a stroke. Praise God, this was not the case, and Ben made a full recovery, and did not have to be intubated. They finally were able to wake him enough(with my help) to get him to breathe a little. They shook/tickled  him every three seconds to startle him in to taking a deep breath.After a bit of that,perhaps half an hour, they called ICU, but 15 minutes later, just as the ICU doc arrived, Ben began to stir and breathe on his own again.I'm happy to have him home!

Teena

we never get bored around here. Ben didn't eat dinner last night, and began vomiting around 2:30 AM. Dave and I were both unable to sleep until 4, but Ben slept through most of it, sedated as he is.  He also threw up when we tried to give meds, but a the moment he is keeping down some bacon. We called the on call doc (poor dr. Glass, he really knows us now, too) I explained all of the symptoms Ben has been experiencing, and he immediately said "he's not tolerant of this drug at all!" so we are lowering his dose immediately, he is going to recommend to Dr.V that we not contnue with it at all. This one is such a low dose, it's amazing that Ben is responding so strongly, but there it is.

Today we have Nate's last official soccer game before the tournament starts. I'm hoping to get to go if Ben stops throwing up. This afternoon Dave has agreed to stay home with the kids while I go run some necessary errands, such as picking up meds and shopping for Megan's birthday. Another thing I have learned is not to put such things off...another opportunity may not come!

Teena

I got all of my things done today, and am unofficially ready for Megan's birthday. Ben did stop throwing up, so we went to Nates' game. It was great-they won, coming in second overall for the season. Next week the tournament begins. Ben took two short naps today-he's exhausted.

Tonight Ben took his dose of Lamictal. Within 1/2 hour he had a tonic seizure, and broke out in a rash all over his body. This is an allergic reaction to Lamictal, and can be very severe....as in all of your skin falls off. Most likely we have caught this in plenty of time, and Ben will be fine. You can bet he will never take Lamictal again. I'm not sure where we are headed, but right now we are grateful to be getting so many answers about what NOT to do. Thank you for remembering Ben in your prayers, he is really suffering right now.

Teena

I did get up much later than Dave...I feel somewhat refreshed.  I have to tell you, I am not ready to talk about what went on in the hospital-it was pretty scary and hard and I need to process before I can share the details. Even David is still waiting.

The neuro team at Childrens' sent us home with a new drug Klonopin. It is supposed to keep Ben's brain sedated and prevent seizures. He is to take it the next three days and get ben through the weekend seizure free until we can speak with our own neurologist, who is of course, out of town while all of this is going on.  The concern is that if he does not have enough meds in his system, he will go right back into a seizure cluster. so far thsi medication is working, and though Ben is exceedingly busy today(sedated-haha!) he is cheerful and very excited about playing games with Nate and Megan.

One good thing that may come of all this is my nurse overheard the neuro team discussing Ben outside our room, and they were saying that  they would like to fast-track Ben into the Keto program. I still really don't want to do Keto, but Ben has been in the hospital twice since starting Atkins on my own. Is there a relationship? I really don't know. But if the chance comes up to do Keto-I'm in.

Teena