A few weeks ago Esther and Lucas filmed an interview with a local cable access program on Florissant City television called "News You Can Use". The episode focused on the First Steps program, which is the early intervention program through which Lucas receives all of his therapy . It's isn't quite as cool as Wayne's World, but Lucas did look pretty cool in his Spider Man slippers and "Dude, your girlfriend keeps checking me out" t-shirt.
Most of the episode is an interview with the St Louis director of the program. Esther and Lucas' segment starts at around the 22nd minute. You can watch the video online.
Thursday, November 20, 2008
Tuesday, November 4, 2008
Oh, Canada!
SO the seizures have not only not stopped, but they seem to be almost totally uncontrolled. We are not sure what happened, why this has become our situation, but it is, nonetheless. We saw Dr. Burris, the neurologist, last week. He thinks that the Keppra may not be working because it just isn't lasting long enough, but he doesn't want to increase the dose any further because Lucas is still so little. (Well, he is almost as tall as my legs, but weighs only 22.6 lbs.) In light of this, he has decided to try a new medication, again. This one is called Clobazam. It is a cousin of the clonazepam (Klonopin) that Lucas had been taking when he was having too many seizures a day and ended up taking daily for 4 1/2 months. He said that he has several patients taking this med and that he has seen some really great results.
Clobazam is not yet available in the US. It has been around a long time and has been used in several other countries successfully and without incident. There is a company who is in process to make it here in the States, but it is a long process and still has a good couple years before that happens. For now, we ship it in from Canada. It isn't too expensive, about $100 to get started and then about $35 every three months after that. We will see Dr. Burris again in about three months and discuss how things are going. We will, of course, be in touch regularly before and up to then as well as we introduce this new medication. He said that we should begin to see results within the first 2-3 weeks. If this is the case, he wants to immediately begin decreasing the Keppra, as it will be obvious that the new drug is doing the job and the Keppra will be unnecessary.
If, for whatever reason, the clobazam does not work, in three months Dr. Burris wants Lucas to have a 23 hour EEG at St. Louis Children's Hospital. We would go and stay in a small room and bring his meals and toys and Bumbo (his little blue chair). There would be a crib and, hopefully, a place for Marc and I to sit/sleep as well. Lucas would have the EEG wires attached to his head the entire time and there would be a video camera in the ceiling monitoring his activity and sleep as well. Dr. Burris is intrigued that Lucas' seizures involve a turn of the head to the Left while moving the right leg/arm. This suggests involvement of both hemispheres of the brain. Lucas' brain, however, is unlike any other and I wonder if the seizures are originating in the brain matter that runs up through the middle of this head like a peninsula. He had no seizures during either of the EEGs he had in the past, so it remains unclear where in the brain they originate.
We are hopeful. Lucas is still doing so wonderfully in spite of the increase in seizures and we rejoice in that. He is still working hard at standing and sitting and is doing better with his looking at us and other things. He is also chattering up a bunch, Ds, Bs, Ns, Ms, Rs and some Ls too are coloring his speech. Last week, it began to seem that he is connecting the fact that "Dada" is Marc. Very exciting! He also, just this morning, finally, cut through his top right gum line with his first molar. His gums have been swollen for months, all four, but finally we got one through!
That's about it for Lucas for now, but I wanted to invite you all to rejoice with us also that my cousin's son Cooper has come home! He is doing really well and his family is glad to finally have him where they have wanted him for so long. THank you, thank you, thank you for all your prayers for them. I know they appreciate it and believe they make a difference.
I added a few more pics to close out September/October if you want to take a look. I pray you are all well and every day recognize the blessings that surround you, that you enjoy!
Clobazam is not yet available in the US. It has been around a long time and has been used in several other countries successfully and without incident. There is a company who is in process to make it here in the States, but it is a long process and still has a good couple years before that happens. For now, we ship it in from Canada. It isn't too expensive, about $100 to get started and then about $35 every three months after that. We will see Dr. Burris again in about three months and discuss how things are going. We will, of course, be in touch regularly before and up to then as well as we introduce this new medication. He said that we should begin to see results within the first 2-3 weeks. If this is the case, he wants to immediately begin decreasing the Keppra, as it will be obvious that the new drug is doing the job and the Keppra will be unnecessary.
If, for whatever reason, the clobazam does not work, in three months Dr. Burris wants Lucas to have a 23 hour EEG at St. Louis Children's Hospital. We would go and stay in a small room and bring his meals and toys and Bumbo (his little blue chair). There would be a crib and, hopefully, a place for Marc and I to sit/sleep as well. Lucas would have the EEG wires attached to his head the entire time and there would be a video camera in the ceiling monitoring his activity and sleep as well. Dr. Burris is intrigued that Lucas' seizures involve a turn of the head to the Left while moving the right leg/arm. This suggests involvement of both hemispheres of the brain. Lucas' brain, however, is unlike any other and I wonder if the seizures are originating in the brain matter that runs up through the middle of this head like a peninsula. He had no seizures during either of the EEGs he had in the past, so it remains unclear where in the brain they originate.
We are hopeful. Lucas is still doing so wonderfully in spite of the increase in seizures and we rejoice in that. He is still working hard at standing and sitting and is doing better with his looking at us and other things. He is also chattering up a bunch, Ds, Bs, Ns, Ms, Rs and some Ls too are coloring his speech. Last week, it began to seem that he is connecting the fact that "Dada" is Marc. Very exciting! He also, just this morning, finally, cut through his top right gum line with his first molar. His gums have been swollen for months, all four, but finally we got one through!
That's about it for Lucas for now, but I wanted to invite you all to rejoice with us also that my cousin's son Cooper has come home! He is doing really well and his family is glad to finally have him where they have wanted him for so long. THank you, thank you, thank you for all your prayers for them. I know they appreciate it and believe they make a difference.
I added a few more pics to close out September/October if you want to take a look. I pray you are all well and every day recognize the blessings that surround you, that you enjoy!
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| September / October 2008 |
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