|
 |
|
Saturday, June 21, 2008 |
|
Well we finally made it back from Brady's neuro visit today,it went so well!! The doctor was so impressed and surprised at how well the VNS is working for Brady. He was very optimistic that we would be able to take Brady down from three seizure meds,to only one. He said that he was amazed at how well the VNS is working, at such a low setting, since Brady's seizures have been so hard to control and so severe,even with all the meds he's on. Anyway we will started reducing the topamax tonight,but its going to be a very gradual thing,just to be sure that the withdrawal doesn't cause seizures. Its going to take a full 3 months to get him totally off the topamax. If all goes well we will start reducing the keppra after that,and he will be left only on depakote. So it really was a great visit!
As for the hour and a half drive down, not so great!! It wasn't long before Mr. Brady figured out how to unbuckle and/or slide the top buckle on his car seat down,and get out. We spent the entire trip there and back fighting with him. He totally destroyed the backseat in the van,stuff threw everywhere,since he could reach everything. He emptied out and entire box of wet wipes in the floor,all the diapers,and the diaper bag. As if that wasn't bad enough,Houdini decided to sail a full can of pediasure over the back of my seat,hitting me in the head. Well that was so much fun,he decided that he would just start throwing everything up front with me and his dad,we must have looked really funny on the interstate ducking as we were passing cars,lol. Oh well,we survived and now we get to find a creative way to keep him in the seat. At least there is never a dull moment here,lol. |
posted by angelwings
@
12:02 AM
  |
|
|
|
|
| About Brady |
Read Brady's Story Here
I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day.
My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.
See my complete profile
Home
Post
Edit |
What is Angelman Syndrome?
Well Dr. Brady felt the need to doctor something e...
Well,Dr. Brady delivered his first set of pups tod...
Well its been a long night here. Our Saint Bernard...
Well its been another busy week. We had three litt...
Ok, this is the 4th time I have tried to update to...
Just wanted to let you guys know that we didn't go...
Things are good here. I took Brady to the Ped toda...
Well,Brady continues to have trouble with his foot...
Well,its been another busy night here at our house...
|
| Archives |
|
Interactive Seizure Diary |
This
downloadable Interactive Seizure Diary helps you track your seizure activity and medication routine. You can also record doctor appointments and notes about how you are feeling. Before a doctor appointment, print the information and share it with your physician.
|
|
Angelman
Forum & Chat |
|
The AS Forum was created in April
2005 and provides an easy way for family members and carers of
people with Angelman Syndrome (AS) to exchange information with each
other.
|
|
Cure Angelman Syndrome |
|
The Foundation for Angelman Syndrome Therapeutics (or FAST) is an organization of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education, and advocacy.
|
| Angelman Links |
|
| |
