Life with CP

A family's story living with cerebral palsy in Chicago

Life with CP - A family's story living with cerebral palsy in Chicago

Weaning off of Keppra

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!

Wheelchair or stroller debate #2

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.