I think this is going to end up being more than one part as it's probably going to be a bit long...
Also I'm going by memory on alot of this and it was more than 5 years ago so somethings are a bit hazy...like order of meds. and such.
so here goes...
Gage was born at 12:47am on March 13, 2002 almost 2 months early. He had a bit of a rough start but all in all was a perfectly healthy baby. Kris and I were able to take him home with us...not bad for a preemie.
For the first couple months everything was great. He was thriving in almost every way...he ate like a champ and was getting to be a big guy. The only area of concern was his head size. The pediatrician was concerned that Gage's sutures had already closed so off we went to Children's in Milwaukee for an MRI. Everything came back ok he just had a little head....according to the neurologist I did as well. lol
We breathed a sigh of relief. We felt like we had dodged a bullet. That happiness was a bit short lived though because at one of his checkups the pediatrician was worried that he was developmentally delayed and thought we should have him evaluated by Early Intervention.
Kris and I were a bit discouraged about this but knew that as a preemie it was always a possibility.
We met with a caseworker and she started getting everything in order for the therapists to come out and do an evaluation.
Gage was about 9 months at this point and was due back to the pediatrician for his shots...these would turn out to be his last shots ever.
Not long after I started noticing REALLY odd behavior. Gage would smile in the oddest way. It was almost like he was seeing something noone else did. It was eerie but at the same time it was actually kind of sweet. My mother in-law used to say he was smiling at the angels and we didn't really think too much of it.
The next thing I started to notice as off were his eyes. They would flicker a bit back and forth...but it was quick...never lasting more than a few seconds and it wasn't often that he did it. Again I didn't think too much of it.
Why would I???
He was happy...eating well and just generally a healthy baby. Looking back I think I knew something wasn't right but at that time I didn't want to believe that something could be wrong with my kiddo.
One day though it became too much to ignore. I remember this day like it was yesterday...Gage and I were hanging out on the floor playing with toys when he started his eerie smile...this time his whole body froze. Instinctively I KNEW something was up. He was sitting up and a pillow was behind him so I gently pushed on his shoulder to see if he would snap out of it.
He fell back onto the pillow and never moved a limb.
I freaked out and called the ped. right away and they agreed to see him the next morning. In the mean time I watched him to see if it would happen again. It didn't.
At the appt. the next day the Dr. thought that it sounded like seizures and had us go for an EEG the following day. Gage did awesome for the EEG and the initial findings did show seizures but they weren't able to give us a full report until it was reviewed. We were assured that our Dr. would call that night with a game plan and we were sent home.
That day Gage had the first of two Grand Mal Seizures.
I have never been so scared in all of my life. I was immediately on the phone with the Dr. I refused to be put on hold and just kept screaming to get the Dr. on the phone. Finally I talked to him and he had already recieved the report and said it was just Epilepsy (just epilepsy. lol) and put him on Tegretol.
Kris and I were upset of course but also a bit relieved. Kris' dad and sister both had epilepsy and they were ok. Surely our son would be too.
In the midst of all of this EI finally came out and evaluated him. Sure enough he was developmentally behind enough to qualify for services but the therapist's felt that by 2 he'd be more than caught up.
A bit discouraging but we were ok with the news.
We were already learning to take things in stride.
After a month or so on the Tegretol it became apparent that it wasn't working. Gage was still having episodes (thankfully no more Grand mals though) and they were getting more frequent. He was also starting to do odd things with his arms...he would tense up really quickly and then release. Repeating this multiple times during the episodes.
Being as I had a computer and Google at my fingertips I started to do some major research. I read about something called Infantile Spasms (west syndrome) and it sounded SO much like what Gagey was doing.
I talked to his ped. and he agreed that we should see a pediatric neurologist because he felt this was becoming something he couldn't treat.
On March 13, 2003 (his very first birthday) we saw the new neuro. for the first time. During the initial appointment I mentioned what I had read on Infantile Spasms and asked if this could possibly be what was going on with Gage. He assured us that it was nothing more than epilepsy and that we should try new medicine and that it was definitely not IS.
He put Gage on Trileptal and said that he thought that one should do the trick.
We left there feeling pretty good and went home to celebrate our baby boys first birthday.
After a short time Gage was still not doing better and the seizures were picking up almost daily. He was starting to sleep alot and his therapy appointments were getting cut short. The scariest part is he was also regressing. He was losing his ability to sit up unassisted for long periods of time....it seemed to wear him out really quick.
Back to the neuro. we went. Once again I brought up IS but it was once again shot down. He thought that maybe by adding another medication we'd see some improvement. I believe at this time it was Keppra that was added.
Another month or so went by and still he was getting worse.
His therapist's were getting concerned. He wasn't able to sit and play much at all.
We saw the neuro. one more time and he adjusted the medication a bit.
During this time my mom had been trying to get us to go for a second opinion. Finally I agreed that it was time.
We made an appointment in Chicago with a neurologist that was a leading expert in childhood seizure disorders.
Upon examining Gage and seeing him have a seizure his initial though was Infantile Spasms.
I almost lost it.
Isn't that what I had been thinking all along?????
The Dr. wanted to admit us into the hospital that day to do a long term EEG study to confirm what he (and I ) thought.
Sure enough Gage had Infantile Spasms.
I felt like the worst mother alive.
I felt like i should have fought the first Dr. harder on this.
I felt like i had let my baby down.
I still have a hard time with this.
Because it was IS it had to be treated differently with soemthing called ACTH...a steroid injection. We were taught how to give him the shots. That was so hard. Noone wants to inject their child with anything.
The Dr. told us that we could possibly be past the point where it would fully work but that it was worth a shot.
The ACTH was something we had to give him for 6 weeks....we saw improvement right away. For those 6 weeks and quite a few after that Gage was seizure free.
Kris and I were ecstatic!!
We thought surely he was going to be ok.
That was not to be the case though.....
to be continued...when i get feeling back in my fingers. lol
October 8, 2007
Posted by Shannon at 4:27 PM