:Abi update:

(Abi with her cute little wrap on her head to hold all the electrodes in place while getting an EEG)

Since the last posting on Abi, we have seen Abi's Neurologist twice. The first visit they performed another EEG to determine if her seizures were still Infantile Spasms <-- click here to read about them), or if they have become seizures. Her EEG showed that they are infantile spasms, but modified...whatever that means. Dr. Lloyd put her on another medicine called Topamax and also told us he wanted to start her on a 6 week treatment of ACTH <-- click here to find out what ACTH is. At that point I had read a little about ACTH and was not that impressed by the medicine. But the more he talked to us about it, the more we felt okay with doing this treatment. So, we agreed & were to go home and wait for a call from the nurse who would be over in the next week or so and start her on her injections of the ACTH. Later in the evening I started researching more about ACTH and as I researched I found nothing good about this drug. The whole drug seemed to have no positive about it. Yes, maybe it would slow down or even stop Abi's seizures, but more times than none, as soon as the treatment is over with, the seizures come back. And the side effects are horrible. Water retention, mainly in the face; increased appetite; irritability; sleepless nights; low immune system; high blood pressure...and the mother of all....Heart Failure!!! WOW! Was I upset! Why didn't the doctor tell us ALL of the side effects. Instead, he only mentioned some. So when Dave called home while on his lunch break at work, I told him of what I had read & how I DID NOT want Abi to get the treatments. To me, it seemed like such a pointless drug, why put her through something so intense, and then after she is through with the treatments, see her seizures come back. That is pure misery to me! So the next few days, Dave & I researched some more, prayed, attended the Temple, and prayed some more. We decided AGAINST the ACTH & decided to go with a drug called Vigabatrin (Sabril)<-- click to read about this drug. Vigabatrin is not FDA approved, so therefore we cannot get it in the United States. It is ordered out of Canada or Mexico. One side effect that we need to be aware of is it can cause vision loss. We'd rather have Abi lose her sight then die at 7 months! But from what I have read, there have been no problems in children losing their eyesight while taking this medicine.
The second visit to Dr. Lloyd was just a follow up. He told us we could take Abi off of the Trileptal by the end of the week and keep her on the Topamax. That, we did!
Anyway, yesterday we received Abi's Vigabatrin. They come in little packets. They look like sugar packets. Now we have to find us a scale that will weigh in milligrams and weigh out her dosages. The only problem with finding a scale that measures in milligrams, is how much the scales cost. They range mostly up into the thousands. YUCK! So, we are still searching for a good scale, but at a lower cost. For now, we are going to see if the pharmacy will be willing to measure out her medicine for us.
And to update you on her other medication that Abi is on: TOPAMAX. She started her full dose of Topamax this week. Her seizures have decreased to 1 - 3 a day and they are much shorter than before, lasting anywhere from maybe one jerk to a seizure lasting up to 10 minutes. Not bad if you ask me! She's much more sleepier than she was before, and she sometimes acts like a zombie. She has regressed a little in her developmental skills. But we had the Up-to-3 workers out here yesterday, and have set some goals that we want to work on with Abi for the next 3 months. If the Vigabatrin starts to work, we can hopefully take her off of the Topamax. It would be nice to see my Abi's bright eyes and smile more often again and to hear her contagious giggle!
Sorry if this post was long and boring to some. But I like to keep an update on Abi for my sake.