We have the preliminary results from Jackson's EEG yesterday. There was some abnormal spiking on his EEG...mainly on the right frontal lobe where they did not resect. It did look MUCH improved and wasn't a necessarily a bad reading, but there is some abnormal waves. This basically means that when abnormal spiking is present, then you are more susceptible to seizures. However, Jackson is still seizure free!!!!...and can continue to be even with the abnormal spikes. If we took away all his meds then he could be at risk for having them. (Also, just to note the "abnormal" spikes are completely different readings than when he had Infantile Spasms)
My Neuro still has to talk to Dr. Chugani in Detroit, and decide if we should wean off the Pheno at this point. So we will see what they decide. As much as I would like to have him off one of the 3 meds, I will take no seizures any day over less meds. He did say that over time it could continue to improve, or he may have some abnormal readings his whole life and still be seizure free. We just do not know at this point! He was giving me a lot of different scenarios of kids that are now grown that he has treated.
We continue to look at the positives that Jackson is almost 5 months seizure free and progressing in his development. He is a different child and continues to make up for the delays from the Infantile Spasms. Our Neuro was so pleased with Jackson and where he is today post surgery.
I will let you all know once they have the full reading and feedback from both doctors. Thank you for your concern and prayers! It means so much to us!
*A picture above of Jackson during his EEG.
5 comments:
I believe he is wearing Aunt Mo-Mo's PJ's in those photos ;) He is getting so big- I can't wait to hug him in March. I know he will continue to be seizure free!!! Love you all!!
Has it been 5 months already.Wow.Amazing.Jackson will continue to find his way and the rest of us will rejoice in his progress.Thank you fro checking in on Zoey and keeping her your prayers.
I've been thinking about you all. I know this is probably not the news you were hoping for but you are right...some people can have abnormal spikes that don't amount to anything. I can't believe it has been 5 months since I saw Jackson in the hospital. He has grown so much in so many ways!!! He is a strong and resilient boy and he will continue to be.
Cami was not taken off her pheno right away either...I remember when the Dr. told us that she had some spikes as well and needed to stay on for at least another 6 months to be safe. I understand Jackson's condition is very different from Camille's, but I just wanted to encourage you that one day this will be behind y'all. You would never know by looking at Camille now that she was on seizer medicine for about the first two years of her life. We are continuing to pray for you all. Jackson is such a blessing.
Hi. I just read your blog and loved reading such a wonderful story. Our son is 2 1/2 and has LGS. We live in Round Rock and wondered if you lived close. I noticed the pic in Austin. I would love to email and find out where you take him and what kinds of therapy you have him in. Not many people understand what we are going through. We also have ECI and he gets speech therapy twice a week. I hope to hear from you soon.
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