Philip came completely off of the one medication, Depakote, last week. There has been definite improvement with less tremors and he is desiring to get up and move around a lot more these days. He can walk probably 4 or 5 steps without falling, but most of the time if he is not holding onto something he will just get down and crawl to get to what he wants; he definitely has the strength to walk, and the desire to walk, but knows that he is likely to fall so he doesn't usually try. It seems to be mostly his right leg that gives out and is causing some of the steadiness issues. But, when someone is holding onto his hand he is getting better at walking.
Joyanna is getting ready to turn 2 at the end of April and we have been working on teaching her her to come tell us if Philip is having a seizure. Over the last couple of weeks she has come and told Becca on several occassions when Becca hasn't been in the room. If we are in the room she will go over to Philip if he is having a seizure and pat him on the shoulder (or face, or head, whatever is most convenient) and tell him it is "ok" like we do. But, after reading that, if you think "what a kind little sister," don't for a second think she is not an opportunist. If she wants a toy of book he has, she will take it in a second as soon as he starts having a seizure because she knows he can't fight back. Such is the life of brothers and sisters!
Depakote is not only used for seizures but it is also sometimes used as a mood stabilizer for people with "bi-polar disorder". Because of this, while he has been on Depakote over the past few months, we have not had as many issues with attitude and "melt-downs". It is very evident to us, that some of those issues are back now that he is off of Depakote, however, we are not medicating him to try to control his attitude, we are trying to control the seizures. An area that you can pray for him and us is that as he goes through life, and we try to teach him to control his actions and emotions even if he is not "feeling" like it, that he will be able to understand enough to get control of himself even when it is difficult--easier said than done.
Right now we are in a "holding pattern" of being off one medication and probably getting ready to try another. Becca is waiting for a call back from his doctor this afternoon to discuss moving him off of one of his other medications, not because he is doing better, but because it seems that that medication is not doing much. Probably once he is off that medication, we will try another. Adjusting medications is a part of our lives for the foreseeable future.
On a brighter note, I have been reading some of the stories about how effective the ketogenic diet has been in some cases. Philip's epileptologist, who suggested the diet, directed us to a website about the ketogenic diet: www.charliefoundation.org. I am somewhat skeptical that the diet is the "miracle diet" that some would say it is, but the one thing that reading some of the stories has given is hope. As I read through some of the stories, it is almost like reading Philip's story--onset of seizures at a couple years old, multiple seizure types, medication changes, attitude and mood swings, failing medication after medication, hospital stays, injuries, falling, helmets, tiredness, lessened mental ability, balance issues, etc., etc., etc. There are actually other kids out there like Philip, if some of those kids can be helped by the diet, there is a hope that maybe Philip can be helped as well. As we have look back at videos we took of him at 2 1/2 and 3 years old, before the seizures and other issues started, it is amazing how bright and alert and happy he was. If the diet can get the seizures under control and he can get off of the, essentially mind-altering, medications he is on, maybe, just maybe, we'll have the "old" Philip back.
At the same time as I say there may be hope for Philip to get back to "normal" on the diet, we realize and believe that God is really the only one who can bring lasting help for him and is in control of the entire situation. As his parents we desire the best for Philip, but we trust that God will work His plan out in his life, even if it is not in the way that we would think.
We don't know the future, but we know Who holds the future!
If all the info above makes Philip seem like a sick kid who can't do anything, let me put another thought out there. Philip is a growing boy (he has grown 2 inches in the last month or two) and certainly enjoys being outside when Becca or I are working out there. In these pictures he is laying on our patio with a paint cloth under his head since I was building a new bunk bed out there. He likes to be out in the yard as well since the grass is a pretty soft place to fall compared to most other places. He also likes to swing, and as the weather gets nicer outside, I expect he will enjoy being outside even more. Just like any boy should, he will try to wrestle you if he can catch you on the floor and goes crazy with excitement to watch basketball (which there is a lot of these days). As soon as basketball is over, he will switch to baseball and love it too. While he isn't able to do some of these things physically like other boys can, it doesn't stop him from loving those things and enjoying watching others play.
Ben