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!
Tuesday, July 15, 2008
Friday, July 11, 2008
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!
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!
Sunday, July 6, 2008
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!
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 |
Thursday, June 19, 2008
On Again, Off Again
My apologies for not posting sooner. I had intended to get this up by Tuesday, but here it is Thursday and, well, I guess two days late isn't too bad.
Anyway...
The update is thus: We have canceled the surgery(ies) for the strabismus (lazy eye) correction and hypospadias follow-up. We will re-schedule after the seizures (sz) are satisfactorily gone. As for the treatment of the sz, we began Monday night with a whole 25mg tab of the Topamax and will continue for ten full days doing a half tab in the morning and full tab in the evening. After that, we will increase to a full tab in both the am and pm for almost two weeks (because the 10 day mark falls on a weekend) before following up with Dr. Burris. So far, as best I can tell, Lucas is sleeping a bit more, but also, today seems to have had noticeably fewer sz! I did not witness any when we were up for his middle of the night meds and feeding and so far this morning (since just before 0600), he has not had an overwhelming slew of sz. ( I think he's had about 12 or 13 so far today, when by this time lately he'd already had over 20, maybe even 30.)
We'll continue to keep track of how many he has, but I feel really really hopeful that this dose increase is going to work and we won't have to mess with any other drugs (or their nasty side effects)! I'll keep you posted again soon.
Thank you for your prayers and support. I feel that our recent trials are so trivial compared to those of so many others in our region of late. All those effected by the flooding and the tornado that swept through the Boy Scout camp, our prayers are with you too.
Blessings to you all.
The DeSantis Fam
Anyway...
The update is thus: We have canceled the surgery(ies) for the strabismus (lazy eye) correction and hypospadias follow-up. We will re-schedule after the seizures (sz) are satisfactorily gone. As for the treatment of the sz, we began Monday night with a whole 25mg tab of the Topamax and will continue for ten full days doing a half tab in the morning and full tab in the evening. After that, we will increase to a full tab in both the am and pm for almost two weeks (because the 10 day mark falls on a weekend) before following up with Dr. Burris. So far, as best I can tell, Lucas is sleeping a bit more, but also, today seems to have had noticeably fewer sz! I did not witness any when we were up for his middle of the night meds and feeding and so far this morning (since just before 0600), he has not had an overwhelming slew of sz. ( I think he's had about 12 or 13 so far today, when by this time lately he'd already had over 20, maybe even 30.)
We'll continue to keep track of how many he has, but I feel really really hopeful that this dose increase is going to work and we won't have to mess with any other drugs (or their nasty side effects)! I'll keep you posted again soon.
Thank you for your prayers and support. I feel that our recent trials are so trivial compared to those of so many others in our region of late. All those effected by the flooding and the tornado that swept through the Boy Scout camp, our prayers are with you too.
Blessings to you all.
The DeSantis Fam
Monday, June 16, 2008
Still in waiting, Not much improved
I was reading to Lucas this morning, lately I do some Psalms, some Proverbs and a little Romans. Proverbs 16:9 has been underlined/highlighted in my Bible for years and has been super apropos in my life as well, but this morning it once again was ringing in my heart.
"In his heart a man plans his course, but the Lord determines his steps." (NIV)
Today is our 14th day on the Topamax, a week on the full dose. We are still observing between 25-45 seizures a day. I am unsure if the variance in the numbers is due to a change in the number had, or a change in the amount we witness. Either way, it is still not much improved nor consistently improved. I am awaiting a call back from the neurologist, but I am near positive we will, once again, cancel Lucas' surgery. I was talking with a friend the other day and she said, "It sounds to me like he just really doesn't want that surgery." It would seem that way. Though we would prefer a different method of intervention to the appearance of seizures method. :)
I am not certain if we will continue on the Topamax and continue to hope it works or if Dr. Burris will want to switch to Depacote (which has some possible nasty side effects we'd rather not explore). I got the feeling from chatting with his nurse that he will likely want to keep Lucas on the Topamax for a while longer. It makes sense to me; he's only had a week of full dose. That isn't much of a trial.
I will likely post again tomorrow after getting the official word and let you all know. Thanks again for your prayers and support. We know that though this may not have been the way we'd have chosen to walk this out, God's got a much better view of the whole journey and His choices are based in much more wisdom than ours would be and we trust Him.
Blessings and thanks.
"In his heart a man plans his course, but the Lord determines his steps." (NIV)
Today is our 14th day on the Topamax, a week on the full dose. We are still observing between 25-45 seizures a day. I am unsure if the variance in the numbers is due to a change in the number had, or a change in the amount we witness. Either way, it is still not much improved nor consistently improved. I am awaiting a call back from the neurologist, but I am near positive we will, once again, cancel Lucas' surgery. I was talking with a friend the other day and she said, "It sounds to me like he just really doesn't want that surgery." It would seem that way. Though we would prefer a different method of intervention to the appearance of seizures method. :)
I am not certain if we will continue on the Topamax and continue to hope it works or if Dr. Burris will want to switch to Depacote (which has some possible nasty side effects we'd rather not explore). I got the feeling from chatting with his nurse that he will likely want to keep Lucas on the Topamax for a while longer. It makes sense to me; he's only had a week of full dose. That isn't much of a trial.
I will likely post again tomorrow after getting the official word and let you all know. Thanks again for your prayers and support. We know that though this may not have been the way we'd have chosen to walk this out, God's got a much better view of the whole journey and His choices are based in much more wisdom than ours would be and we trust Him.
Blessings and thanks.
Monday, June 9, 2008
Just a little update
Just wanted to let you all know that nothing much has changed. We are trying to keep track of how many seizures occur throughout the day, but I think it's a fairly inaccurate account. We've had days in which we witnessed 25 and days in which we witnessed 40. I think more likely he's having about 50; we just don't catch them all. Today is the first day of taking a full dose of the new medication, Topamax. Dr. Burris said that we should be able to notice a change by the third day of the full dose, so we are still hopeful. I keep thinking that I am seeing less, but when I add up the daily totals, there are still high numbers.
I'll let you know as the days pass. One week from today will be the deciding day, regarding the success of the Topamax and the clear or cancellation of surgery.
Thanks for your prayers; we would be at a total loss without God.
I'll let you know as the days pass. One week from today will be the deciding day, regarding the success of the Topamax and the clear or cancellation of surgery.
Thanks for your prayers; we would be at a total loss without God.
Tuesday, June 3, 2008
Not Exactly According to Plan
Things worked out yesterday, but they didn't go quite as I had hoped or expected. Lucas did not sleep for the EEG nor did he have a seizure, but the technician, a very nice woman with beautiful silvery-white curls and a fun-loving gentility, said that she got some good results. As soon as the test was complete and she began removing the gooey leads, he had two seizures. She didn't realize until I said something but they had passed before she could see them happening.
We then met with the neurologist, Dr. Burris. He also did not witness any seizures. (I sometimes feel like I am the only one who can see them, like I've been given a supernatural seizure-detecting gift, or perhaps I am being tortured by my mind and require some intense psychotherapy! - Just kidding. Marc and my dad have seen them too; I am not alone in my madness.)
Dr. Burris explained that there are (for simplicity and appropriate application in this case) two kinds of seizures: prolonged and brief. When Lucas first had seizures they were very lengthy, the first lasting about 1 1/2 hours. The last round of seizures, we have now opted to consider clusters of brief seizures and this round, individual brief seizures.
The medication that Lucas takes to prevent seizures targets the prolonged type of seizures. We are now beginning a trial period of a new medication that should treat both the short and the long. It is called Topamax. We will give 1/2 dose for one week and then full dose the next. We will continue giving his Tegretol (regular med he's been taking since the beginning of the seizures) three times a day as well as Klonopin twice a day (we give this as long as he is having more than one seizure a day). If at the end of the 2 week trial period, we have not seen excellent results, we will cancel his surgery and consider a new trial of a different medication. If there are good results, we will begin to wean off of the Tegretol and rely solely on the Topamax.
We are, of course, hopeful that this medicine will be effective and that we will be able to press on as planned. We know that God knows best and if we are again to postpone his surgery then that is all right with us. We want the best for him and don't want to rush into anything. As much as we may distaste our frequent state of limbo we are becoming impressively flexible, not quite up to par as the famous Chinese Acrobats, but if we continue as we have, I think we'll get there and you can see us touring in a city near you. :)
Please continue to pray for our sweet prince. One concern is ensuring he actually consumes the medicine as it is in tablet form and must be crushed and added to food. As is obvious in his pictures, much of his meal typically ends up on his bib (and face and hair and tray and mommy) instead of in his tummy. His first dose last night went over well. We know and trust it will work out. It always does. :)
Thanks and blessings to you all. We'll keep you posted!
We then met with the neurologist, Dr. Burris. He also did not witness any seizures. (I sometimes feel like I am the only one who can see them, like I've been given a supernatural seizure-detecting gift, or perhaps I am being tortured by my mind and require some intense psychotherapy! - Just kidding. Marc and my dad have seen them too; I am not alone in my madness.)
Dr. Burris explained that there are (for simplicity and appropriate application in this case) two kinds of seizures: prolonged and brief. When Lucas first had seizures they were very lengthy, the first lasting about 1 1/2 hours. The last round of seizures, we have now opted to consider clusters of brief seizures and this round, individual brief seizures.
The medication that Lucas takes to prevent seizures targets the prolonged type of seizures. We are now beginning a trial period of a new medication that should treat both the short and the long. It is called Topamax. We will give 1/2 dose for one week and then full dose the next. We will continue giving his Tegretol (regular med he's been taking since the beginning of the seizures) three times a day as well as Klonopin twice a day (we give this as long as he is having more than one seizure a day). If at the end of the 2 week trial period, we have not seen excellent results, we will cancel his surgery and consider a new trial of a different medication. If there are good results, we will begin to wean off of the Tegretol and rely solely on the Topamax.
We are, of course, hopeful that this medicine will be effective and that we will be able to press on as planned. We know that God knows best and if we are again to postpone his surgery then that is all right with us. We want the best for him and don't want to rush into anything. As much as we may distaste our frequent state of limbo we are becoming impressively flexible, not quite up to par as the famous Chinese Acrobats, but if we continue as we have, I think we'll get there and you can see us touring in a city near you. :)
Please continue to pray for our sweet prince. One concern is ensuring he actually consumes the medicine as it is in tablet form and must be crushed and added to food. As is obvious in his pictures, much of his meal typically ends up on his bib (and face and hair and tray and mommy) instead of in his tummy. His first dose last night went over well. We know and trust it will work out. It always does. :)
Thanks and blessings to you all. We'll keep you posted!
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