Friday, March 30, 2007
On a side note, it was so great to finally make it back home this afternoon. From San Jose to Phoenix (in hopes of returning home to Kansas City) my flight was diverted due to bad storms to Omaha at 11:30pm at night. After a two hour wait on the runway in the sweat-lodged 737, with 149 other tired, sweating, and hungry people (mini-pretzels will only take you so far) they decided to cancel the flight and put all 150 passengers up in hotels. It took the airline another 20 minutes to 'find a gate' (which is apparently really complicated at 2:30am) so we could deboard. After finally getting to the hotel at 3:00am, I was scheduled for a 9:00am departure, which was delayed to 11:00am, then delayed again until 1:45pm. Needless to say, Avis came in handy and we rented a car and drove back to KC and were back by 1:00pm. The glory of travel......
Tuesday, March 27, 2007
Mira was on Zonegran for about five months (the longest she had been on any of the medications, back in early 2006. Zonegran was one of the few that seemed to help in some capacity, so the thought is that now that she is older, she might react differently to it, positively we hope. She will get to a therapeutic dosage within about a week. After that, she is going to start taking Lamictal, which is one of the last medications she has not tried. Lamictal can have some serious side affects (users can quickly develop a very severe rash) therefore, she must move up on it very, very slowly. It will take her several months to get to a therapeutic level in her system.
Sarah is putting the finishing touches on Mira's Trolley Run Website. The link is here:
For those of you unfamiliar with the Trolley Run, feel free to visit the Children's Center for the Visually Impaired at http://www.ccvi.org/. On the right hand column is information under '2007 Sabates Eye Centers Trolley Run/Walk'. Thanks for all who supported Mira last year!
Sunday, March 25, 2007
Mira had a pretty good weekend overall. Saturday, Eli, Mira, and I went to the Plaza for a wet and windy stroll and spent quite a bit of time at the park afterwards. Mira had a couple of 'partial' tonics (if there is such a thing - they are seizures that start off looking like they are going to be really awful, but then she rebounds really quickly, after about 5-10 seconds) and had a few head drops, but no full out tonic seizures yesterday or today.
Today she started taking Pyridoxal 5 Phosphate (P5P) which is just the coenzyme form of Pyridoxine (B6). She will take 100mg daily, which is a 'routine' therapeutic dosage typically used in treating epilepsy. Some studies go up to 500-600mg daily. Other studies show that kids who don't respond to typical B6 treatment often respond to P5P treatment, because the body cannot break down pyridoxine in its 'raw' form. P5P is just the active form of B6, thus eliminating the step required by the body to break it down in the liver for absorption. It also means that it is quadruple the cost of over the counter B6.
Tuesday, March 20, 2007
She is now taking multi-vitamins and an omega supplement only, which we started a few days after the Felbatol was out of her system. She is taking two packets of Rainbow Light (not to be confused with Rainbow Bright) and taking one packet of Coromega-3 Fatty Acid supplements daily. She is getting additional Vitamin E and B12 as well. So far, her daily seizure count has 'stabilized' to a certain degree. We have been seeing a few tonics in the morning, but nothing in the afternoon.
Sarah is enjoying some time in Illinois with her sister this week (it's spring break for the kids) and Daddy is at home turning the house into a bachelor pit. Nothing beats the smell of sweaty boots and leftover pizza on the living room floor. Just kidding, I don't leave my boots on the floor.
Thanks to the Flora family for taking everyone in for the week!
Sunday, March 11, 2007
Saturday, she cried most of the day, sleeping only again after she would have an intense seizure that would drain her completely. We saw at least 4-5 intense seizures Saturday, where Mira was really struggling through some of them and her breathing became more labored throughout the seizure than usual. We contacted the neurologist on call through CMH and told him we wanted a weaning schedule to immediately take her off of the Felbatol. This medication was horrible for Mira.
Today was much better for her. We dropped her dosage last night and she slept for 10 hours straight. She had three seizures today, but has been in a much, much better mood. She even smiled some. We plan on continuing to wean her and will talk to her neurologist in the morning, to discuss yet another alternative.
We are so completely frustrated with the medication train again. We made the decision to take her off of medications last year for six months and nothing changed. Her seizures continued. We started trying medications again in January and so far, it has been a really rough road for everyone, escpecially Mira. We realize that she is most likely going to make little or no progress until her seizures are under control, but right now, the risks of medicating are far outweighing the potential benefit. Everyone is exhausted.
Wednesday, March 7, 2007
Mira had a really rough day yesterday after starting the Felbamate. She had numerous seizures throughout the day and had countless twitches/jerks all day. She was pretty irritable and tired through therapy. Overall, it wasn't a good day for her. At first we were attributing some of it to the medication, but doubt that she hitting any sort of therapeutic dosage after only one day on it.
Today was a much better day for her. She had three bigger seizures this morning, but none in the afternoon. Sarah made some Italian beef for dinner and Mira pretty much inhaled it in about five minutes - she has not lost her appetite, which is great! I spoke with neurology a couple times today and we agreed to keep going on the Felbamate for at least a week or so and watch her closely.
Mira will have to have labs done in about 2 weeks to get red blood cell/white blood cell counts, along with monitoring her liver function. Felbamate has rare side effects associated with it, including aplastic anemia and liver issues, so if it proves to be successful in controlling her seizures, then she will have to get labs done at CMH every 3-4 weeks.
Sarah got our Trolley Run page started for Mira today - details to follow when it is up and running.....
Monday, March 5, 2007
What can you say about Las Vegas? Having never been there before, I had certain expectations and nearly all were met - and some. After three days, I think I was numb to the clinking video poker machines and the pungent smell of Marlboros everywhere we walked. We did the world tour of New York New York, went to Caesar's Palace (ah, yes Rome - or 'Roam' depending on your perspective) and the Mirage. We did see the Beatles 'Love' show on Friday night, after a serious sushi overload at Shibuya at the MGM Grand. Saturday night we met some friends for dinner at Paris, caught the fountains at the Bellagio. Who knew you could hit so many 'faux' cities in one evening...........only in Vegas.
Mira is going to start Felbamate tomorrow. She is now completely off of the Diamox and has turned around considerably since last week. She is much more alert and is smiling a lot more. I personally think that the Diamox was one of the worst medications she has tried yet. I am glad to leave it behind. I only hope Felbamate is the 'miracle' for her.