Update from Detroit and more...

Well, I didn't see this coming! It was not on my mind..never even crossed my mind, because we have had 7 plus glorious months of no worries!

Then...the week before we left for Detroit, I noticed Jackson "startle" out of the corner of my eye. It was so fast...seemed like the blink of an eye. I thought it was suspicious...the first thing that has even been suspicious to me since surgery. I tried to tell myself it was nothing. Then Tony saw Jackson "jump" while drinking something. Again, so quick we could not tell you exactly what we saw, but it was not sitting well with us. So, I immediately called our epileptologist here in Houston and he said Jackson's Depakote levels have been extremely low each time we have had them checked. It was 15 in February and then 20 in May. (should be 40 - 70) Before, since Jackson was not having any "episodes" there was no reason to increase his meds, however now he said to increase his Depakote, even though it could be nothing. Just to monitor him to see if we saw anymore. Dr. Chugani said the same thing.

Jackson has been pretty much the same weight since surgery...around 32 pounds. However, since his birthday, April 16th, he has gained 3 pounds and an inch in a month. So this could be a factor in effecting his levels as well.

After an EEG, one "myoclonic seizure" was captured and it is coming from the left temporal side of his brain. The actual area is called the perisylvian. A very small focus, which we knew was there prior to surgery. However, the doctors have told us all along that the major focus was on the right side, if we remove that focus, this left one could either go away or be controlled.

The last time Jackson had an EEG was February 23rd. He had some activity and abnormal spiking, but no seizures. His EEG looks pretty much the same now. The good thing is there is no sign of any hypsarrythmia (which is the chaotic brain waves associated with infantile spasms.) The seizures he is having now are different...it's a different "ball game" so to speak. They should not cause him harm in his development. The doctors are not real worried and feel it can be controlled when the med gets to a therapeutic level. We spoke to 3 different Epileptologists separately and they all have the same opinion.

One thing, Dr. Chugani mentioned is that where the focus on the left side, can affect speech and drool. Jackson does drool a lot sometimes. It goes in cycles. I always thought it was teething, but maybe it is from this area. Dr. Chugani wants us to ramp up speech therapy to twice a week to be proactive. However, after hearing Jackson, he felt better about his speech once around him.

In Detroit, Jackson had an MRI. Everything was fine and nothing looked abnormal. Dr. Chugani's team will still analyze the tracks of how the brain is organizing. I do not have this information yet.

Dr. Chugani and Ruth (his nurse) were very pleased with Jackson's progress in development. He has come such a long way since surgery. They said he looks like a different child.

As far as Jackson' s medications, both Dr. Chugani and our Epileptologist in Houston, want to wean Jackson first from the Vigabatrin, since he does not have infantile spasms and can potentially cause irreversible visual damage with long-term use. Vigabatrin is a front-line drug used for the treatment of infantile spasms. Jackson has been on this drug since last May. We order it from Canada monthly and it's quite expensive out of pocket. Then they want to wean him from Phenobarbital, which everyone knows I do not want Jackson on long-term. It can numb the brain cognitively and to me it makes Jackson more aggressive than he really is. Then they will add Clobazam...another Canadian drug. I am not familiar with this one, but Dr. Chugani said they have had great effectiveness and low side effects. So their goal is the Depakote and Clobazam.

When I first saw this happen, it really scared me and Tony. It was the whole unknown and having to relive a nightmare. I have only known the world of infantile spasms with Jackson's history of seizures. HOWEVER, after having the testing and understanding, this new road is not so bleak. Everyone is optimistic for Jackson and that it is a minor bump in the road. Just a matter of adjusting the meds. I guess if it was going to happen, it was perfect timing...right before we went to Detroit.

Since increasing the Depakote, he has improved. It does take a little while to ramp up the levels. Some days I do not see any at all. We go in this Thursday to get his levels checked again. Dr. Chugani wants us to be liberal with his 24 hour Video EEGs until we are comfortable and he is under control again.

There will be another day soon that our little fighter will be back to seizure free. I have so much hope for Jackson...that hope and belief never waivers inside of me. I realize that we do not always have the easiest road, but we will overcome this. Jackson is going to be just fine!!!!! He is still making leaps and bounds...although each day is something small...it is HUGE to us!

Also, I wanted to update that Jackson did have tubes put in his ears on Thursday, May 14th. They decided to also remove his adenoids. He did not do so great with anesthesia this time. It took him three hours to wake up and he was super fussy during that time. He seemed affected way more than when he had brain surgery, which is crazy. However, he was back to normal that evening. The ENT said they did drain a lot fluid, his adenoids were medium to severe, so hopefully he will benefit more from the tubes with his adenoids removed. We can tell he can hear better and he is more stable. They also took a blood sample for allergies while he was under. We go back for follow up mid-June.

Thanks for checking in on Jackson. We didn't want to post until we knew for sure and had all the answers. We just ask for prayers for Jackson and that the increase in Depakote takes care of these seizures!!!