after an rather urgent call from Ben's doctor, we  opted to give him the antibiotics.  Basically, a fever that high for that long is steming from the elevated white blood cell count. We hate this, but under the circumstances it seems like the right choice.  We were able to hold the fever down a little longer today with a bath, and we gave the first dose of specailly compunded antibiotic. thank you all for your prayers and the wonderful meals we have been getting.

Teena

Ben's fever is not coming down.  His doc wants to put him on antibiiotcis, his blood work showed elevated white blood count indicating infection.  This is one more scary decision we have to make-antibiotics are probably what caused all of his illness in the first place.  We don't want any more medicine..but if infection is keeping his fever at 103 with Tylenol....and the fever is what is causing seizures....Please just pray with us.

Teena

This is reason enough to rejoice.!  Dave and I both actually slept last night, which is also a miracle.

Megan is well, Ben's fever is coming down(we think) I have a fever, Nate is getting this thing , and Dave has it without the fever.  My Mom left today because her brother died, and she needs to make travel arrangements.

Ben is crazy hyper, we have no idea from whence this comes.  Ben is currently taking tylenol suppositories for fever, Atavan to raise his seizure thresh-hold, , we're getting Zonisamide to have on hand should this(God forbid) happen again.  We also have a natural supplement called GABA that we are going to try first, if it's not enough we will give him Zonisamide.  We had to have is specially compunded because the ususal one had red dye #40 in it.  I am off now to see if i can get him to settle long enough to sleep.

Thanks for all the care and support!

Teena

This is a quick recitation of facts-I have received calls and emails from many of you, so many that I really can't get back to everyone. My apologies-here's what's happening

Ben has had three seizures in the last 24 hours. We have been to the emergency room and Children's hospital. There are, of course, many theories about what is happening. The plan for this moment is to get Ben on an anti-seizure medication for probably a month, at least until this fever and this seizure cycle is over.  We start the meds tongiht, and we pray that Ben will not have an adverse reaction. We are tired, and very scared.  This is taking a huge toll on all of us, especially as Dave and I can't protect the other children from this.  We also have to watch him every minute, a task my mom is helping with. We of course, continue to appreciate and ask for your prayers for our precious Ben.  I will continue updating as time allows.

Teena

Most of you know about Ben's seizure at this point. I have spoken with his nutritionist and his Naturopath, and I will post those details when I have the time. In the meantime, we could really use your prayers-Megan spiked a fever and was up all night. she is sleeping now and seems to be getting better. But Ben spiked a fever today, and is coughing like Megan.  My main concern here is Ben has what is called a "low seizure threshold" which means the fever could cause another one, and we really don't need that right now.  There isn't anything I can give him for the fever so......we just have to ride it out.  I'll post more when we get our health back on line-I'm not feeling so great myself.

Teena

Ben saw his speech therapist last week-Abby was amazed at his speech, and I was amazed to see him play a turn taking game with her, and name all of his colors correctly-twice! it was a great session, and gave us some ideas about how to move forward. We should be seeing her regularly once a week from here on out.

We've got a new medical mystery to figure out- Ben has chewed a hole on the inside of his cheek about the size of a nickle.  His whole cheek is so swollen I thought he had the mumps at first. We are concerned about infection-it looks so bad. He cried for about 5 hours this morning, wearing me down until I finally gave him some ibuprofen.  This is a no-no on the diet, but acknowledged to be neccesary at times. I've also been rinsing it with salt water(mom would be so proud). I have no idea what effect ibuprofen will have on someone as sensitive as Ben, hopefully this will pass quickly but you know how mouth injuries are. He has an appt. at the doc tomorrow, so I will have him look at it.  In the meantime, Dave and I have to figure out what we have been giving Ben that has caused this cheeck chewing.  Wish us luck-Ben rarely has a reaction in the expected time frame, so it's hard to find cause and effect. We're starting with supplements. Amazingly, Ben is using a ton of "offered speech" today, and seems in fairly good spirits after a nap and some medication.

This week Megan started cheerleading, she loves it! Yes, she has pompoms and will be doing three performances.

Nate turns 11 tomorrow, and we had a small party last night.  I got to sleep around 1:30, and Ben woke crying about his cheek at 4AM. Ah, parenthood!

Both kids had a midweek sleepover with homeschooling friends who were their guests at AWANAs this week.

As many of you know by now, Ben had another seizure last night. This one had no particular trigger, so we do not know what to think. One theory is that I tried to introduce beans to his diet, and he simply could not process them. Beans are known to be a problem, but I've never heard anyone else say they had a seizure. So this seems unlikely, but I'll have to pull them again to be safe. This is a bummer-Ben loved beans pre-SCD, and was so happy to have them again! The second school of thought, voiced by his Naturopath, speech therapist, and nutritionist is that Ben has what are called "breakthrough" seizures. As I understand it, this means that when he comes upon a new developmental leap, his brain can't handle it and seizes.  Good news in that truly, after both seizures there was a marked difference in Ben's speech. The Naturopath, who saw him Monday, commented on it before I told him about the seizure.  Bad news in that...how many more will he have to endure? God only knows, and we will simply have to entrust Ben into His hands.  Another question has arisen as well-as you all know, Ben is a horrible sleeper, perhaps sleeping through the night once a month. Since these two seizures both occured while Ben was sleeping, it begs the question-Is he having seizures we don't know about? once we recover from this fright, and the 10 Tums(story after) we are going to try and set up the camera and videotape him sleeping, to see if we can catch one. Bit of a needle in a haystack, but there it is. At this point there is nothing to do but wait and see if he has another seizure sooner than one year, at which point he would have another MRI and CT scan and a 24 hour EEG.

So-the Tums story. Whenever Ben suffers an upset like he had last night, the next day he is a tiny terror. He has learned at last to open the doors with the child safe caps on them, and today a friends child came and told me Ben was sitting in the bathroom sink. I calmly went back to check, thinking it had only been a moment since I last checked on him. He was on the sink, eating the last of the Tums, the water was running, my glasses case was in the sink, the peroxide was in the sink, the Pepto Bismol was next to the Tums, and lotion had been smeared all over the mirror and wall. Apparently he'd been in there longer than I thought.  So, there's red dye # 40 in Tums, and some other stuff he's not supposed to have. He's been having charcoal every 4 hours, and will have to do the chicken soup thing all day tomorrow to be sure it  all cycles out. I have no idea how this will impact him, and so am planning to be home the next few days.

Our exciting day ended with Ben falling asleep on the hard wood floor. He wore out at last. I think I might join him!

Thank you all for your prayers and heartfelt messages today-we needed the encouragement!