I went without health insurance for A YEAR, in part to be with him.
I'm holding off on the divorce so that he won't lose HIS health insurance through MY job.
Wednesday, March 14, 2012
Sunday, March 11, 2012
Falling
I just want to slip into a deep hole and disappear there. It would be an accident, so no one could blame me.
I just do not know how long I can keep living this way.
I just do not know how long I can keep living this way.
Tuesday, August 23, 2011
A month later...
Time flies! Life is busier than it has ever been for me. Working full time while kids are young is insane, but bills gotta be paid.
My little guy...what to say. We took him off the Dilantin because it was making him worse. We started him on a new, expensive drug called Vimpat, for which there is no generic and won't be for awhile. About 3 weeks in, he made it through an entire week with only a couple of seizures. If the drug worked, the expense would be worth it.
But ... now they are back, at least 1-2 a day, and the convulsions are much stronger. I've been seeing the entire right side of his body convulse.
I guess we're looking at getting the VNS implant soon, and then just cross our fingers and hope that it works. I find it hard to hope he will ever have good seizure control, and it breaks my heart.
My little guy...what to say. We took him off the Dilantin because it was making him worse. We started him on a new, expensive drug called Vimpat, for which there is no generic and won't be for awhile. About 3 weeks in, he made it through an entire week with only a couple of seizures. If the drug worked, the expense would be worth it.
But ... now they are back, at least 1-2 a day, and the convulsions are much stronger. I've been seeing the entire right side of his body convulse.
I guess we're looking at getting the VNS implant soon, and then just cross our fingers and hope that it works. I find it hard to hope he will ever have good seizure control, and it breaks my heart.
Thursday, July 21, 2011
Thursday
I haven't written in here in awhile. So many blogs, so little time!
As I write, my son is bouncing off the walls. Amazing considering today, he was sitting on a bike rack, had a seizure and fell backwards, head promptly meeting concrete. He had a goose egg the size of a golf ball on the back of his head, although the swelling has gone down a lot. I've checked for all the usual bad-head-injury symptoms; he seems to be fine.
He's had several falls lately. All due to seizures. The ex-husband wants to think about putting him in a helmet. He's nearly 9 and very strong willed; I am very reluctant.
He's also been having blurry vision issues, probably due to the recent increase in Dilantin. Dilantin, Topamax, and Trileptal cocktail is what is supposed to keep him from having seizures, but he's still having them nearly every day. I think the vision issue will go away; it has happened before and gone away as he got used to the drug.
Next checkup is Monday. We'll see what doc says.
As I write, my son is bouncing off the walls. Amazing considering today, he was sitting on a bike rack, had a seizure and fell backwards, head promptly meeting concrete. He had a goose egg the size of a golf ball on the back of his head, although the swelling has gone down a lot. I've checked for all the usual bad-head-injury symptoms; he seems to be fine.
He's had several falls lately. All due to seizures. The ex-husband wants to think about putting him in a helmet. He's nearly 9 and very strong willed; I am very reluctant.
He's also been having blurry vision issues, probably due to the recent increase in Dilantin. Dilantin, Topamax, and Trileptal cocktail is what is supposed to keep him from having seizures, but he's still having them nearly every day. I think the vision issue will go away; it has happened before and gone away as he got used to the drug.
Next checkup is Monday. We'll see what doc says.
Saturday, June 18, 2011
Tuesday, March 15, 2011
The plan for now - update on my son.
This is copied & pasted from my other blog...
So, we went to see my son's local neurologist today, to discuss the Mayo findings and what we should do next.
The good, and bad, news is that we won't be doing surgery anytime soon. There is simply not enough evidence for either the doctor or us to consider cutting into our son's brain right now. The problem is that what is causing his seizures is simply too widespread to have a reasonable assumption that they could get everything, and stop the seizures. And even if they did think they got everything, there is a very real possibility a stray cell would be left, and be able to cause seizures. It is really, really tough to hear they can't just cut out the bad parts (and hear about the risk of death for epilepsy patients, gah!), but it is what it is, and I'm so grateful our doctor is very open and honest with us about the probabilities and possibilities.
For now, we are going to pursue a more aggressive drug trial. Aaron's chances of seizure control are less than 5% on new medications, but damn it, he's already beaten a lot of odds. At least 50% of epilepsy patients never find a cause for their epilepsy - and Aaron has. Another 50% of the folks who have his same brain abnormality suffer from severe developmental disabilities - and given that his Mayo doctor labeled him "gifted," we know that's certainly not a problem with him.
So for the next 5 or 6 months, we'll be trying some new drugs, new drug combos. And if they don't help, we'll try the VNS (implanted brain pacemaker, basically) therapy. Only if the drug or VNS therapy doesn't work will we revisit the surgery.
I'm disappointed surgery is not likely to fix him; I desperately wanted a cure. But our doctor said, when coming up with this plan, "This is what I would do if it were my son." He is a dad, so I think I can trust him on that one. He seems to really enjoy spending time with our son and treating him, and is a really great physician. I think my son is in great hands.
So now...just hoping for a miracle. At this point not even total seizure freedom, but even just once a month might be nice. I'm a little weepy today, but I am content with our plan.
So, we went to see my son's local neurologist today, to discuss the Mayo findings and what we should do next.
The good, and bad, news is that we won't be doing surgery anytime soon. There is simply not enough evidence for either the doctor or us to consider cutting into our son's brain right now. The problem is that what is causing his seizures is simply too widespread to have a reasonable assumption that they could get everything, and stop the seizures. And even if they did think they got everything, there is a very real possibility a stray cell would be left, and be able to cause seizures. It is really, really tough to hear they can't just cut out the bad parts (and hear about the risk of death for epilepsy patients, gah!), but it is what it is, and I'm so grateful our doctor is very open and honest with us about the probabilities and possibilities.
For now, we are going to pursue a more aggressive drug trial. Aaron's chances of seizure control are less than 5% on new medications, but damn it, he's already beaten a lot of odds. At least 50% of epilepsy patients never find a cause for their epilepsy - and Aaron has. Another 50% of the folks who have his same brain abnormality suffer from severe developmental disabilities - and given that his Mayo doctor labeled him "gifted," we know that's certainly not a problem with him.
So for the next 5 or 6 months, we'll be trying some new drugs, new drug combos. And if they don't help, we'll try the VNS (implanted brain pacemaker, basically) therapy. Only if the drug or VNS therapy doesn't work will we revisit the surgery.
I'm disappointed surgery is not likely to fix him; I desperately wanted a cure. But our doctor said, when coming up with this plan, "This is what I would do if it were my son." He is a dad, so I think I can trust him on that one. He seems to really enjoy spending time with our son and treating him, and is a really great physician. I think my son is in great hands.
So now...just hoping for a miracle. At this point not even total seizure freedom, but even just once a month might be nice. I'm a little weepy today, but I am content with our plan.
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