I can honestly say that for the vast majority of the time, I do a really great job at keeping it together. I continue to stay optimistic, be Raquel's biggest advocate, and push, push, push for answers, treatments, etc. But I also have the days when it all sort of gets to me and I start to wonder what her uncertain outcome will be. Those days are tough, so I try to force myself not to have many of them.
But sometimes I can't help it. And that's kind of where I've been this week - a bad case of the blahs. Don't get me wrong, nothing has happened to make me lose faith. I think it's just natural to have these feelings sometimes, as much as I hate it.
On the upside, I've joined a Landau-Kleffner Syndrome support group and am getting a wealth of information about certain medications, treatments, specialty doctors, what has & hasn't worked, - and outcomes. Everyone I've spoken with says the light exists at the end of the tunnel, but as one mother stated in an email: "...the effort extended on our daughter's behalf traveling through the LKS darkness was monumental." I completely get that. It is definitely an uphill battle, but one I will win. I guess this is where my persistent and stubborn traits come in handy. I refuse to give up, and am hoping to find a LKS Neurological Specialist somewhat close to get another opinion as far as treatment goes. Sacramento is as close as I can find right now but I've only just begun the process.
As far as outcomes go, the vast majority say things definitely start to change around puberty. It's basically all about finding the right meds and producing speech before that. One mother has a 21-year old daughter who is a senior in college with a 3.7 GPA. Another has a daughter who is a senior in high school and uses sign language to communicate. But both are extremely functional. And these two particular cases were originally diagnosed so long ago, LKS was unheard of. I'm confident that we've advanced in treatment/therapy since the 1990s and more options will be available to help Raquel. It's just a matter of finding the resources. But the cup remains half full, and I'm determined to do whatever it takes.
Tuesday, October 19, 2010
Thursday, October 7, 2010
Good-bye Depakote!
I am very happy to report that Raquel is completely off Depakote and on to a much more mild anti-convulsant called Keppra. Things continue to be positive, and she is clearly out of the Depakote fog she's been in. Her checking out "episodes" are very rare, and she continues to make progress.
She is becoming more vocal, more engaged in daily activities - and just more functional, even though the progress is still gradual and day by day. It is very apparent that she clearly understands what we are saying and she is now coming up to us and trying to initiate a conversation. She appears less frustrated and seems much happier overall.
The only negative thing I have to say about Keppra is that it did bring back some of her unruly behaviors. But I am able to deal with them much better now by knowing how to react and how not to, and they are less intense than they previously were. They are also becoming less frequent as she continues to adjust to her medication.
And she truly is the cutest thing ever created. She's got curls galore, and a smile that just melts your heart. And no, I'm not being partial because she's mine! :-)
Next on the agenda is adding a very low dose of Prednisone, a steroid, to the mix. This supposedly helps produce speech in kids with Landau-Kleffner Syndrome. She will only be on it for a short period of time - probably 6 months - and then more tests will be done. I haven't started her on it any sooner because I wanted her to fully adjust to Keppra to make sure I could determine what side effects are caused by each medication. And her neurologist said to take my time and to add it when I felt it was right. It's feeling right about now, so I will start her first dose tomorrow morning so I can see how she reacts to this new med over the weekend and then go from there.
I continue to stay very optimistic. The other day I told her I loved her and she responded: "Love you!" which was the first time she has ever said that to me. And yesterday, Gabby called to her and she responded - kind of annoyed - with a "What??!!" She also has a new favorite song: Three Little Birds by Bob Marley.
Hope everyone has a great weekend, and that my little girl handles the new medication okay. I'll keep you posted.
She is becoming more vocal, more engaged in daily activities - and just more functional, even though the progress is still gradual and day by day. It is very apparent that she clearly understands what we are saying and she is now coming up to us and trying to initiate a conversation. She appears less frustrated and seems much happier overall.
The only negative thing I have to say about Keppra is that it did bring back some of her unruly behaviors. But I am able to deal with them much better now by knowing how to react and how not to, and they are less intense than they previously were. They are also becoming less frequent as she continues to adjust to her medication.
And she truly is the cutest thing ever created. She's got curls galore, and a smile that just melts your heart. And no, I'm not being partial because she's mine! :-)
Next on the agenda is adding a very low dose of Prednisone, a steroid, to the mix. This supposedly helps produce speech in kids with Landau-Kleffner Syndrome. She will only be on it for a short period of time - probably 6 months - and then more tests will be done. I haven't started her on it any sooner because I wanted her to fully adjust to Keppra to make sure I could determine what side effects are caused by each medication. And her neurologist said to take my time and to add it when I felt it was right. It's feeling right about now, so I will start her first dose tomorrow morning so I can see how she reacts to this new med over the weekend and then go from there.
I continue to stay very optimistic. The other day I told her I loved her and she responded: "Love you!" which was the first time she has ever said that to me. And yesterday, Gabby called to her and she responded - kind of annoyed - with a "What??!!" She also has a new favorite song: Three Little Birds by Bob Marley.
Hope everyone has a great weekend, and that my little girl handles the new medication okay. I'll keep you posted.
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