Thursday, November 5, 2009
After 2 years on Keppra, I forgot who my good little boy was. Many have given the anti-seizure medicine, Keppra, the notorious name of “Kepprage”. It gives some children irritability and aggressiveness. This past year has been especially hard on our family because the aggressiveness that come with the drug was paired with the terrible two’s and horrible three’s.! I tried giving him B-6, which was a suggestion from my neurologist. B-6 is known to have mood elevating effects. Sadly, I did not see much of a difference.
Since we have not seen many myoclonic episodes since starting the Keppra, our neurologist suggested that maybe it is time to wean him off to see if he has outgrown his seizures. Over the course of 3-4 weeks, we have weaned him off slowly, with great success. When Jacob has had an episode, he usually stares into space, checks out, and seems like his mind is elsewhere. Then he comes back with a single “startle”. I am so hopefull since we have not seen any of these episodes.
Most importantly, his behavior has improved immensely! He would throw a tantrum if I would say no to something, or I would stop his favorite shows. Now, he seems to be able to accept it and move onto another activity more smoothly. We have been playing more games together and he seems more fun-loving. I am amazed at how often I receive spontaneous hugs and kisses.
I never looked into changing his medications, because Keppra worked so well for him. But after seeing this huge difference I will think about trying other medications first. In 3 weeks, we are scheduled for another EEG- I can’t wait to see the results!
Monday, September 21, 2009
I was just looking back through my posts and found one from a year ago. I can’t believe that we are still in the same situation as far as how we will transport our son. Currently, he is in a MacLaren fold up, but his toes are almost touching the ground. Due to his high tone, he rarely is able to keep his legs bent and resting on the foot rest. I really thought that we would be past this issue by now???? I had hoped that by now, he would be walking longer distances. Jacob’s scissoring was really terrible towards the end of spring and his last series of botox shots had not worked at all. Our doctor suggested surgery, which we had 6 weeks ago.
He is walking so well now- I am hopeful that we can continue to work endurance. As a matter of fact, a few days ago, we went to the store to fix a pair of glasses. I found parking 1/2 a block down the street and we walked to to store. It takes a while because he gets so distracted with cars, dogs, and babies passing him by. We rested and ate a cookie at Starbuck’s next door before walking all the way back. This was the first time that we have left the “just incase of fatigue” stroller in the car! I’m so proud of him!!!
While we were inpatient at Rehab Institute of Chicago, our therapist had lent us a wheelchair to try out. I was very much against one in the past, because he has the ability to walk so well. Besides the “stigma” that wheelchairs often have. But I could not have been more wrong!!!! His posture was upright and was able to make eye contact with his peers, rather than being cramped up into our little stroller. It also provided him with more independence that he so much needs, being 3 years old. After only a day, he got the hang of rolling himself around. Jacob was able to explore his environment so much more than being locked into his stroller. He rolled himself over to the table, as well as out in the hall. We have an appointment to be fitted for one in a few weeks and I cannot wait! I never thought that he would have been able to roll himself independently- and if we never got the chance to try it- I think we would still be looking for another stroller.
My family took a day trip to Lake Geneva and decided to eat at a local tourist restaurant, Popeyes. (Continued)
A friend of mine forwarded this short video to me about a young man whose parents were told that he would never walk. The child found an interest in the sport golf and as a young man completed a goal of his and touched many lives. (Continued)
This is a story I appreciate. I hope you will, too. (Continued)
This Saturday, March 28, billions of people around the world will be turning off their lights for 60 minutes to draw attention to our climate change and mark the need for global action. (Continued)
Friday, December 12, 2008
On December 3rd, our family went to a Christmas Party at The Elmhurst Art Museum. This Special Kids day was a volunteered event for kids and families with special needs. There were a lot of families coming and going- it got pretty loud in there with all the children laughing and playing.
(Continued)
Monday, November 24, 2008
Jacob is on a medicine called Keppra, used to stop his myoclonic epilepsy. Most medicines for seizures are a trial and error in kinds and amount. We were lucky that this first one that we tried worked very well for him. (Continued)
How Mothers of Handicapped Children are Chosen
Erma Bombeck, 1980 (Continued)
Autumn is here! Some our favorite fall activities include apple and pumpkin picking. Spending a brisk fall day outdoors can be great fun for the whole family. (Continued)
