Things have been busy here. Abby came yesterday-it didn't go so well.  Ben is still very aggressive with her. He did talk a lot, but wouldn't really cooperate, and ran to me every couple of minutes. I finally went to my room but then he stood in front of the door and cried until it was time for Abby to go.  Yesterday was a particularly bad day with Ben, His emotions were all over the place, one second happy, the next crying or angry.  We spoke with the neurologist about that last week, and while that can be a side effect of medication, it is also a side effect of seizures. We definitely see it more on days Ben has a seizure and does not sleep afterwards.

Today he didn't have a seizure, he also slept better last night than he has been. We went and saw Dr. Mark this morning for a B12 shot because I have missed the calm that comes after those-and we added B6 which should help process the meds.  Ben didn't sit still so well for the shot, and Mark only got in about half of it. Ben has a whopper of a bruise, but he is calmer today, and settling down to play much better than I have seen for  a long time.  Is it because he didn't have a seizure, or because of the shot? only time will tell.  I find it encouraging either way.

having a good day!

Teena 

Last night Ben woke and was crying for nearly an hour, we just don't know what is going on there.  We will add back the magnesium and Candidase today, since removing them made no discernible difference.

He did have a seizure about an hour after waking.  Discouraging, but we knew this would happen. Yesterday I spent much of the day emailing back and forth with my beloved Patti. She thought Ben is having an adjustment to coming off the Trileptol, and also a yeast issue. We can't separate them out because they are both happening at the same time. Poor Ben, he feels so yukky all the time! Patti also directed me to a good place to check out side effect to medication-one of the side effects of Trileptol really is increased seizures. Then we looked up Topamax-who do I know who is taking that?  The side effects were nasty, and most people who were taking it were not taking it for seizures.  We are really, really praying that Ben will stop having seizures without an additional medication. Things are difficult enough for him as it is.  

This morning I spent about 20 minutes on the phone with Dr. Mark. He has ordered  some tests for us, and has one more he wants Ben to have done. He doesn't think it would be much help to re-run the food sensitivity test because in his experience it takes about two years of abstaining from food you have trouble with before any change reflects in the test.  We are going to go back to B12 shots tomorrow, one per week right now. We are also going to add B6 which is good for brain calming and also helping sensitive people process their environment.  In bens' case, he may be able to tolerate the Keppra better with more B6 in his system, it's a common supplement for people on AEDs.  There is also another blood test in Ben's future, Mark may order it for tomorrow.  I personally feel bad for Ben, but am so glad to be gathering some information, even if it is only ruling things out.  I am reading a book on epilepsy in young children-it's great for teaching about seizures, but so far isn't helping us decide what kind of meds are ok for Ben. We really want to know 2 things-1. Do AEDs block "natural" seizures better than medicinally caused ones? 2. Why on earth is this kids having seizures anyway?All suggestions gratefully accepted!

Teena 

This just makes us happy. Plus Ben is much more settled in his play, so we get a bit of a break. We have guests here now, and he is in the back bedroom playing with them.  So things are ok here with us for the moment.

I am watching my girl friend Erica's kids again-little Jenifer is back in the hospital with another UTI, despite all previous tests coming back with good results.  Please remember them in your prayers.

We still have some questions and issues with Ben's odd behavior-I'm communicating with Patti about them today to see if she can point me in the right direction.  He's not sleeping through the night any more! we were really enjoying that for a while, and are missing it now.  

On the good side of things, at night he goes in his swing for a while, then lays on the couch to look at books until he goes to sleep. This is the best cooperation we have ever had with Ben after his first year. He won't sleep in the swing anymore, so we're glad to have found a happy medium. Hopefully one day we can just put him to bed and have him stay there!

Teena 

We have now settled into a pattern of every other day siezures, which is an improvement, I guess. It is amazing to us how much better Ben is off of the Trileptol. We're getting better obedience, impluse control for the first time ever, way better speech and comprehension.  He is having some sort of reaction to SOMETHING, we're seeing toewalking and he is humming occasionally which are indicators for Ben that something is irritating him.  He is also waking up in the night and crying about his legs/feet hurting. We're hoping it's not the magnesium that is bothering him, which really does  not make since because he was on it so long before. We are trying a new supplement called Candidase to try and get rid of his yeast(it's working, he has little patches of yeast rash all over, it's literally coming out through his skin). I plan to pull that tonight and see if it helps.  Unfortunately, our supplier for probiotics is running behind on orders, and we're almost  out. Ben can't tolerate the two other kinds we tried, so we're in trouble on the yeast battle front.  We'll have to try something else that is over the counter.

We've also been surprised at how aggressive Ben still is, off the Triletptol. Lots and lots of hitting, throwning things.  He's had some serious tantrums as well.  This is not encouraging.

Abby came this week, Thursday. At first it went just like last time, but after a bit I decided to leave the room. I had to shut and lock the door, and Ben cried for another 10 minutes or so, then he began to interact with Abby like old times. It went well from then on, Abby was pleased with how much his speech has cleared, and how much he talked to her without me in the room. HMMMM. Something to think about. I do think part of the tantrum thing going on is simply that we have raised the bar of expectation for Ben, making him talk more, making him behave better as he is able. As you all know, this makes all children cranky =)

I don't think I ever managed to get in here that we finally bit the bullet and bought a mini-fridge. Now Ben has his own fridge, and people who come in can feed him whatever they find in there and know it is safe for him. This is nice because we have more room in our fridge, and I feel better that things won't accidentally get mixed up.

so no seizures so far today-it is a good day.

Teena 

We are exhausted, so I will try to sum up.  We went to the neurologist today. Basically he said Ben is on a very high dose of Keppra, and raising the dose is not likely to stop Bens seizures. (he didn't have one today). So we got a blood test done to see how fast Ben is metabolizing the Keppra, and the doc prescribed yet another AED (anti-epilepsy drug) called Topamax.  We were supposed to start it today, but we opted not to. As you know, today is the last day on Trileptol, and David and I want to see what happens when he is not on it. So we're going to experiment with that before we fill the scrip.  Wish us luck and send many prayers!  Also, the doc had no idea what test he told me earlier this week he would write orders for, so apparently I dreamed the whole thing. No, actually, we will just have the test done through Dr. Mark.  Also, Ben's EEG results were not in yet, so we didn't get to talk about those. But Dr V said at this point those were for comparison later down the road, and not very valuable to us right now anyway. One interesting thing we learned today, is that Ben's ability to sing as opposed to his ability to talk is because those two functions come from different parts of the brain. As some of you know, Ben uses songs sometimes to tell us things, and he sings a great deal, has a wonderful memory for songs, and his singing is much clearer than his speech.  So this was interesting, and I think I will continue to look for curriculum that involves music for him. Any tips much appreciated!

Nate and Megan are both out at parties tonight, it's quiet here. David will probably have many things to add to this, tomorrow, when we can think again. It was a loooong day, and one we are glad to have behind us.

Teena 

so far, seizure free today!  We did raise the Keppra yesterday, and he is almost off the Trileptol. ( I keep saying that, but I cannot wait until it is gone!)

Ben has a little cold and is very tired and irritable, whether that is from the cold or raising his dose  I do not know.  He could use a nap, that's for sure!

 The kids have been creating a circus in the back yard, and they are off to work on it some more today, now that the sun is shining. Ben went out and put on his own circus last night, and would cheer after each of his stunts until we did too. He's pretty cute, and a typical youngest child in that he is sure the world revolves around him. ( I resemble that remark)

Teena 

gotta be quick, dinner won't cook itself.

some great things are happening now that Ben is on a lower dose of Trileptol

his speech has cleared up some

he is much calmer

he plays on his own or with others for 10-15 minutes

he will play outside again

its' just plain EASIER around here, and I couldn't be more grateful!

yes, he still had a seizure this morning, and I spoke with his doctor who did  aise his dose, effective today.  It turns out I somehow got my wires crossed about the "virus" in Ben's brain...but I still haven't spoken with the doc, I spoke to his assistant who spoke to him and then she got back to me, so it's as clear as mud. But the doc is going to write orders to get a metabolic panel done at children's hsopital.  I think this is the same thing Mark is trying to do, and another doc we've been talking with, so we plan to compare methods of gathering information and pick the one that is most reliable. I think the idea is that poor nutirents to the brain have a similar effect as a virus on the brain. I know he said something like that , but for the life of me can't recall it. Anyway we'll get it figured out.  We submitted a sample to doctor Mark yesterday to see how Ben is doing as far as metals in his system-we're trying a different method with a different Naturopath as well, just to cover all our bases and gather as much info as we can.

Teena