Standing Tall

Today Lucas had his experience in his new stander. A stander is just what it sounds like it would be; it helps you stand, like a walker helps support you when walking. We will have him about 10-15 minutes/day in it and then, as he gets stronger, we will increase his time spent in it. He did about 10 minutes in it today and hardly complained. Here are a few pictures and a few others we've taken this month so far.

Blessings!

August 2008

One Up, Another Down

I talked to the neurologist's office again today and, after reporting that Lucas has had a definite decrease in seizures (sz) (this past Saturday we didn't see a single one!!!), I was instructed to again increase his Keppra, 2mL in the morning and 3mL in the evening for a week and then 3mL twice a day. Also, I was instructed to decrease his Tegretol (carbamazepine)- the one he's been taking since the sz first began last fall. We'll go down from 3mL three times a day to 2mL for a week, then 1mL three times a day for a week and then NO MORE TEGRETOL!!! I think after this next increase of Keppra, even before we finish the first week of only once daily increased dose, we will see no more seizures and that means NO MORE KLONIPIN!!! (the tab we give if he has more than one sz a day or a sz lasting longer than 5 minutes). We'll be down to only one med and that is super exciting to me. (It's the little things, you know?) :)

In other news, Lucas is getting over a cold. He had a super fever (I took it at 104.3 ferenheit at it's highest) and now that his fever is gone, he has a rash all over. It is a pretty common occurance, some reaction after a high fever breaks. It doesn't bother him at all; he's just got little red sposts on his torso, neck and upper arms. He still has some snot pouring out of his head too, but not near as much as a few days ago. This boy is such a trooper.

Anyway, groceries don't select, purchase and transport to my house on their own, so I'm off. Thank you for your prayers. All the glory is God's. We know that Lucas is never out of His sight, thoughts or delight. :)

Blessings!

meds up

So, after checking in with the neurologist, the latest is that we are upping the evening dose for a week and then the morning dose also. At the end of those two weeks, we'll check in again. Hopefully, however, there will be no more increases, but rather we will get off the Klonopin and the Tegretol and be on only one medication.

We'll let you know how it goes. :)

Blessings!

July pictures

There isn't much to report now. The sweaty little boy we know and love has returned, but there are still seizures. Not a whole lot, but still seizures. Today is the last day that he will take the TopaMax. We will call Dr. Burris Tomorrow or Tuesday and will likely increase the Keppra. We're at 200 mg/day now and the goal is to be between 300 and 600mg/day. Hopefully, at 300mg/day, we'll be good and there will be no need to go higher. His sleep schedule has been a bit of a mess, but it's unclear if that is related to the medication changes, as it began about the same time as the sweat disappeared, or if he is going through a growth/development change and his schedule is simply adjusting. I am hoping that things settle down before this coming Saturday though so he will be all right for the night while Marc and I go out to my high school reunion. As usual, we'll see. :)

July isn't quite over yet, so there may be more added to this month's photos, but for now, here's what we've got.

Blessings!

July 2008

No Sweat

Literally. No sweating. Apparently one of the possible side effects of the Topamax is decreased sweating. If it were only decreased, the situation wouldn't necessarily be so demanding, but no sweat is another story. Our story. Well, Lucas' story.

We don't usually go out and when we do, it's usually for longer drives with the AC blasting, so I didn't notice until a few days ago when we had a series of shorter trips in and out of a hot car which didn't have time to cool that Lucas was getting very flushed and very hot and not sweating. This is a sweaty boy we have too, a hairy, handsome, sweaty boy. I checked my drug book and sure enough, "decreased sweating" is a listed possible side effect. Once I realized this, I began thinking about how I hadn't noticed him sweating when I nursed him or while snuggling in sleep, both times that increased heat and sweating usually occur.

Sweating is a normal response to an increase in body temperature. It is the body's way of cooling down. If the body cannot release the heat and be cooled by the air on the damp skin, the heat will continue to rise to potentially very dangerous levels. We would prefer to avoid this. :)

When we saw Dr Burris yesterday, I mentioned this first thing and he said, "Well, that's the end of TopaMax." He said that such side effects, though not generally common, can occur more commonly in the "little guys". So, now we are decreasing his dose of TopaMax and trying a new medication, Keppra. For the next two weeks, we will be weaning off the one and onto the other, totalling four medications taken daily. The Keppra is also a newer drug and does not have any major organ damaging side effects nor does it have any drug-drug reactions. It is a liquid and doesn't taste bad. (Yes, I taste everything.) He doesn't seem to mind it at all.

The past two nights, he has gotten better sleep, last night better than the night before, only waking once. (Yeah! Back to normal, I hope!) He did not nap well yesterday, but hopefully today that will also be better and with the med change, the sleep improved and the good Lord who loves us more than we could ever deserve, we'll triumph over these seizures yet!

Thanks for your prayers, love and encouragement!

Up, Up and Away!

Sorry I didn't get this up sooner. I am hardly online. :/

Anyway, here's the latest:

We increased Lucas' evening dose from 25mg to 50mg as of Monday. This coming Monday we will increase his morning dose as well. We also, this coming Monday, have an appointment with Dr. Burris. So far, it seems like the medication is helping to improve matters, but if Lucas' sleep schedule is disturbed, the seizures increase. It is a more severe observation the more consecutively the schedule is upset. Consequently, however, the opposite is also true; with consecutive excellence in sleep, there is a dramatic drop in seizure activity.

This is helpful to know and we are hopeful that a combination of the medication and keeping him well rested (along with the amazing grace of God!), the seizures will cease to be a part of our lives. The only difficult matter is this: Lucas takes a long nap in the middle of the day (the middle of our day, that is), around 11 or 12 until around 2 or 3, give or take a half hour. Without disturbing his sleep, it is near impossible for me to get out of the house for errands, so I am slack in that department temporarily, a slight annoyance.

Otherwise, all is well. I need to get some dinner in him now, as it is already 10 past when I should have begun his meal!

Blessings!

getting better

Sorry I haven't posted in a while. I will likely post quickly again tomorrow after talking with the neurologist again. For now, Lucas is improving. His seizures have dropped from about 45 a day to about 15 or 20. This is greatly effected by the amount of sleep he receives. For example, his afternoon nap was greatly disturbed and largely lost 2 days in a row. The third day, though his sleep was back to normal, he had 38 seizures. After 2 days of good sleep, he had only 9. Today his sleep was not great and he has had 22 and hopefully that will be it as he is about to go to sleep.

I am off to do that. I'll post again tomorrow or the next day, I think. For now, here are some pictures from June.

Blessings!

June 2008