Like so many others, I am trying this out as a way to keep people up on what is happening with our son James. Those who know us know that James has had uncontrolled epilepsy his entire life, and that we his parents have worked hard to keep him healthy, safe and happy. Since October of 2006, however, things have become much more difficult for James and for us.
In October the hospitalizations started in earnest. James began to have seizures episodes every four days, instead of every two to three weeks. We have not found any reason for the change; it seems that his then-current cocktail of drugs just stopped working. Since January, James has been in the hospital or emergency department for more than 90 days. Often we wound up there for seizures we couldn't control at home, for lack of nourishment or hydration, for drug toxicity issues, or a combination. Today he has been out of hospital for a full three weeks, but he has been having seizures nearly every other day. "Emergency" meds have become nearly daily meds. James has lost a lot of body mass, and we are trying everything we can think of to beef him up. He has been stiff, talking even more slowly, unable to stand or do anything for himself.
Yesterday James had an MRI that did not reveal anything obvious. There may be an area in the frontal lobe to look at more closely later. We are trying yet another new drug and weaning him off Dilantin. (Dilantin toxicity has been a real problem since James got off Lamictal; levels soar, and we have a hard time keeping them low enough.) We spent two hours in the office with the doctor, bless his heart, pouring out our hearts, our concerns and our frustrations. We have asked for prayer from everyone we know. We didn't quite get the answers we had hoped for, but we are grateful for knowing the next few steps, and understanding that there are still things we can try to arrest these seizure episodes.
Yesterday we went to the lab for a Dilantin blood level, and today we heard it was 45 - much, much too high. This explains James's spasticity and his helplessness. We are avoiding Dilantin for the weekend, and we hope that he will be in better shape by Monday or so. Today he ate like a horse - two pieces of pizza, cheesecake, heavy cream to drink, fried chicken strips with cream gravy, evening meds with guacamole. If we can keep him seizure-free for a while, then he will stay alert enough to eat and drink properly, and may gain back some of the weight he has lost. The problem has been that he has not been awake enough to care about eating or drinking. You can pray that James will eat well and gain weight, and that his parents will not eat equally well and will not gain weight.
I think it will take me several days to record background material, but thereafter I will try to post progress. God bless you all.
No comments:
Post a Comment