We went to the wading pool today. It may be one of the last days of summer for us. Emma starts school on Wednesday! 9-noon, 5 days a week! Big girl. They teach French and sign language! It's our first experience with Montessori. Should be great.
Nora starts school 9/17. It is going to be a busy year I think. Hopefully Nora will continue to make progress and start catching up to her age level. Still no signs of talking but she is interacting so much more that I hope with all her therapies, we'll at least get some sort of communication soon (sign language maybe).
All is well with Nora's medication. We are slowly increasing her new med (Lamictal) and will be lowering the old one(Zonegran) in Oct.
Luckily, Nora is done with ACTH. Apparently, the drug co. that makes the steroid that got rid of Nora's Infantile Spasms is now increasing the cost from about $900.00 per vial, to $10,000 per vial. It seems a bit crazy I know. Nora's whole prescription cost about $10,000. IF she would need to have it again, it would possibly be $100,000. NUTS! Read the following article and see for yourself....
http://biz.yahoo.com/bw/070827/20070827005278.html?.v=1
I don't know how kids with IS are going to get the treatment that may rid them of the seizures.
Well, thanks for checking in!
Lori
This is Nora's story... Nora was diagnosed with Infantile Spasms April 24, 2007. Infantile spasms is a rare seizure disorder. Nora was put on an anti seizure medication April 26th called ACTH. Her seizures were gone after 1 week of treatment and haven't been back. Nora also has partial agenesis of the corpus callosum and arachnoid cysts in her brain. For more info, check out the history section below.
Wednesday, August 29, 2007
Thursday, August 23, 2007
Back from Vacation
We had a fun time at Mim and Grandfather's in NY. We saw lots of friends and family. Emma and Nora loved seeing their cousins Michael, Brynna and Katie. And of course Uncle Mark and Aunt Maura. Mim threw a big party for us and we visited with everyone. We also went to Uncle Mark's camp and swam and went on the boat. Emma and Nora did very well on the plane and I kept my sanity. I won't be doing it solo again for a while though.
The girls had their check ups today and Emma is 29.5 lbs, 37 inches and Nora is 28 lbs. and 33 inches. Little sister my foot. Everyone is healthy. Nora is doing great on her new meds. She starts school 9/17 and Emma starts her new Montessori school 9/5.
Enjoy the rest of the summer.
Lori
The girls had their check ups today and Emma is 29.5 lbs, 37 inches and Nora is 28 lbs. and 33 inches. Little sister my foot. Everyone is healthy. Nora is doing great on her new meds. She starts school 9/17 and Emma starts her new Montessori school 9/5.
Enjoy the rest of the summer.
Lori
Saturday, August 11, 2007
No news is good news
We have not had any new news lately. Emma's birthday party was Thursday which was fun. It was princess-ariffic. We leave on Tuesday (her real birthday) to fly to Albany NY (we being me and the girls). Alex is going to Mexico for work so I will be flying solo.
Nora had a bit of a temp tonight-101.5 so hopefully it will pass by the time we leave. She is doing well on her new medication. We haven't really seen too much of a change yet. She's still on the old one for now. She seems to be handling it ok. She's showing a lot more emotions and smiling all the time. She is progressing in so many areas all at once it's hard to mention them all. Her walking is better and she is getting fast. She went right out the door and fell down the porch steps the other day before I even knew what happened. She was fine thank goodness. We have about 5 safety gates now.
We'll be in NY for a week so I will give an update after we get back . We have so many people to see and places to go, I don't think I'll have time to update the blog. Or maybe I will since I won't have to take care of my kids at all. Mim and Grandfather will be on call.
Hope all is well.
Thanks for checking in. Please leave a comment so I know you were here!
Lori
Nora had a bit of a temp tonight-101.5 so hopefully it will pass by the time we leave. She is doing well on her new medication. We haven't really seen too much of a change yet. She's still on the old one for now. She seems to be handling it ok. She's showing a lot more emotions and smiling all the time. She is progressing in so many areas all at once it's hard to mention them all. Her walking is better and she is getting fast. She went right out the door and fell down the porch steps the other day before I even knew what happened. She was fine thank goodness. We have about 5 safety gates now.
We'll be in NY for a week so I will give an update after we get back . We have so many people to see and places to go, I don't think I'll have time to update the blog. Or maybe I will since I won't have to take care of my kids at all. Mim and Grandfather will be on call.
Hope all is well.
Thanks for checking in. Please leave a comment so I know you were here!
Lori
Friday, August 3, 2007
Neurology Appointment
We met with Nora's neurologist today. For such a long wait to get in to see him, we really didn't seem to get any new info. We do like him and it will be good to have a permanent doctor that we see all the time. (or at least twice a year)
We did decide to put her on a new anti seizure medication, Lamictal. That is the one w/ the crazy rash side effect. We are starting very slowly with very low doses. It will take 3 months to get her to the level that she needs to be for treatment. We will also wean her off the med she is on now (which makes her cognitive development slow down). Hopefully, the Lamictal will be better for her and have no side effects. We shall see. We did ask why she needs to be on anything at all since she hasn't had any more seizures and the reason is that her EEG is still showing signs of abnormal activity... which may lead to seizures. This med is supposed to stop that from happening.
Nora will most likely need another MRI when she is 2 so we can check on her arachnoid cysts, corpus callosum, and the heterotopia. Just to make sure things aren't growing bigger etc. We'll have her hearing tested then too while she is under sedation.
Things have been a bit boring here. Just bringing Nora to school, speech therapy, physical therapy, Emma to swim class and doing summer things.
Hope all is well. Thanks for checking in!
Lori
We did decide to put her on a new anti seizure medication, Lamictal. That is the one w/ the crazy rash side effect. We are starting very slowly with very low doses. It will take 3 months to get her to the level that she needs to be for treatment. We will also wean her off the med she is on now (which makes her cognitive development slow down). Hopefully, the Lamictal will be better for her and have no side effects. We shall see. We did ask why she needs to be on anything at all since she hasn't had any more seizures and the reason is that her EEG is still showing signs of abnormal activity... which may lead to seizures. This med is supposed to stop that from happening.
Nora will most likely need another MRI when she is 2 so we can check on her arachnoid cysts, corpus callosum, and the heterotopia. Just to make sure things aren't growing bigger etc. We'll have her hearing tested then too while she is under sedation.
Things have been a bit boring here. Just bringing Nora to school, speech therapy, physical therapy, Emma to swim class and doing summer things.
Hope all is well. Thanks for checking in!
Lori
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