Tuesday, June 27, 2006

Ordering a new med!

We are in the beginning process of ordering Sabril Vigabatrin. It has to be ordered from Canada as it is not offered here yet due too a side effect of Periphal Vision Loss. Our Neuro says it will soon be available in the US in about a year.... so we all hope, until then its full price out of our pocket. It will take about 2-3 weeks for delievery so when it comes in we will schedule her next appt and go in for instructions.
We are very excited about trying something new it has been 6 months since we tried anything else, just been doing some adjustments here and there and none seem to be working. We have gained much grounds with the seizures she is down to a handful a day. So our plans are to start this new med once its in, wait a few weeks to see what happens, if good results we will begin the weaning of her other meds. Not sure how many though I guess what ever combo works!

Cameran has been doing some new things such as clapping and signing for "more". She also does the cutest little dance when she gets excited(see photo to right, she was caught in action), she does this bowing and a jump(almost) and waves her arms around its hilarious. Its definetly a must see type of deal!!

Still no talking we thought she was starting to then it stopped. Its so frusterating because you never know what we will wake up to, one day she will babble then the next day it will be gone but she will sign for you and vice versa.
You win some you lose some thats the story of our lives but she's happy and thats all that matters!

Cameran had her casting for her feet today! It went ok she did not want to sit still so we had to do her left foot twice. Poor girl didn't know we had such a wiggle worm! They said her ankles looked pretty bad and are making lots of crackling sounds. She walks on the insides of her feet causing her ankles to bow out on the insides instead of the outside like they are suppose to. So we hope with the inserts it will help put things back like they are suppose to and help her with her balance. People keep asking me if she just learned how to walk and of course I say no she has been walking just over 6 months now. Weird to think its been that long!

POOR BABY GIRL.....She has a sore mouth! On top of her purple busted lip from a face first seizure into the floor she is getting more teeth! Her 1 year molars at that.....OUCH! She has 2 of them making a total of 14 teeth, WOW!
Well here is some info about the new med if anyone wants to read up on it, I pull all my info from epilepsy.com if you want to see more:
Introduction to Sabril
Sabril (SAY-bril) is a brand name used by Aventis for its seizure medicine. The generic name is vigabatrin (vi-GAY-buh-trin). This medication has not been approved by the Food and Drug Administration (FDA) in the United States, but it has been available in other countries for many years. Sabril was developed by a research laboratory in France in 1977. Unlike many other seizure medicines, which are discovered by accident, it was purposely developed with a specific plan in mind—preventing the breakdown of GABA, a neurotransmitter that inhibits brain activity. Sabril was first marketed in Europe in the late 1980s and was approved in Australia in 1993 and in Canada in 1994.
In April, 2004, Ovation Pharmaceuticals announced that it had arranged to buy the North American rights to Sabril and planned to try to get FDA approval for sale in the United States. This process is likely to take 2 to 3 years, however.
Unfortunately, as many as 25% of patients who take it for a long time suffer damage to the retina of the eye, which limits their field of vision. Because of this safety issue, the FDA has refused to approve Sabril, and its use has been restricted in some other countries.
How well does Sabril work?
Sabril (vigabatrin), although not officially approved in the United States because of concerns about vision problems, is useful in controlling partial seizures and some other specific seizure types. Many randomized controlled studies in both Europe and the United States have confirmed this effectiveness, which appears to continue for most patients during long-term treatment.
Studies of children with partial epilepsy have had results similar to the studies of adults.
In one American study, various doses of Sabril were given as add-on therapy to 174 people who had complex partial seizures (with or without secondary generalization) that were not well controlled by other seizure medicines. About half of the people who took 3 grams or more of Sabril per day had at least 50% fewer seizures.
A similar study using 3 grams per day of Sabril reported that 43% of patients had at least a 50% reduction in seizure frequency, compared to 19% of those who took a placebo in addition to their other medication. There were few problems with side effects.
A few studies have compared Sabril with carbamazepine (Tegretol or Carbatrol) used alone to treat patients with newly diagnosed partial seizures. Most have concluded that carbamazepine is more effective for this purpose but fewer patients from the Sabril group drop out because of side effects.
Sabril also may be effective in treating infantile spasms specially those related to cerebral malformations or tuberous sclerosis, with fewer side effects than other treatments such as ACTH.
Sabril appears to be ineffective in controlling primary generalized seizures, including absence seizures and myoclonic seizures. Most studies have had poor results using it for Lennox-Gastaut syndrome, especially if myoclonic seizures are prominent.

Friday, June 09, 2006

The Results Are In!

The blood results are in and it shows that she is tolerating all the meds well. The medicines are all showing to be in the LOW range meaning we can go up in doses to see if this helps with the remaining seizures she is having. We are upping the Topamax 1st since it seems to have helped her seizures the most(went 4.5 weeks sf when started the Topamax) we have had feeding issues since starting the Topamax but what Toddler dosen't!! She still takes Feeding OT once a week so maybe we can keep her ahead of the game! On the Topamax we are adding 15 mg at her night time dosage this will put her at 95mg a day. He says we can go to about 100. Her current meds and doses are:
-Topamax -95mg a day- (1- 25mg&15mg in a.m. AND 1-25mg& 2-15mg in p.m.)
-Klonopin- .25mg dissolving tabs 4 pills a day
-Zonegran- 125mg a day- (2-25mg in a.m. and 3- 25mg in p.m.)
-Keppra- 2ml 2x's a day
-Melatonin- 1mg at bedtime for sleep what a lifesaver!!!
Her sleeping was way off waking about every hour at night time I was exhausted. I mentioned this to her Neuro and he told us to give her Melatonin-over the counter, all natural, its something your body already produces, it has really helped out. She has always had seizures in her sleep that would wake her up (in the very 1st months of IS) so he thinks this is still happening. He also thought that this could be a cause to her exsisting few seizures she was having in the day due to the lack of sleep. Although she is sleeping better now she is still having about 3-9 seizures a day. I don't know where I would be without this sleeping med now mommy and little Cam can finally get some much needed rest :)

Check out our little Monkey......

Cameran's new thing is climbing and there is NOTHING she can't get too!!! A few things we have pulled her off are the recliner that you see to the left she just smiles ear to ear when she gets up there, end tables, baskets, couch, kitchen chairs, toilet seat, activity table, brothers little chairs, tricycle seat and the drawer under the stove trying to reach things on top of the stove.....Watch out! She mastered the stairs so it called for a gate now she sticks her hand through there fussing because she can't get to it! She is such a little handful!!!!!

Here's some more photos of her caught in action:

She is one little determined baby girl! She knows what she wants and goes for it, she has no fear! Once she accomplishes her goal of climbing she doesn't know where to go from there and just steps right off the object only to get back up there and do it again! SILLY GIRL ;-0
Did I mention how much I LOVE my BIG BUBBY! You can always catch them hugging and wrestling in the floor its the sweetest. Cameran will follow that boy to the end of the world and back and Caleb would carry her if she got tired, they are best friends! Caleb tells me all day "I love this baby girl, she's my best friend" He is the only one that can really get her to laughing its adorable, they both just melt my heart!!!!