Sadly Gage didn't remain seizure free...in fact his seizures returned with a vengeance. He started having multiple seizures daily and they were lasting longer and longer each time. His Dr. started him on topamax and kept the keppra.
The topamax was a NIGHTMARE. Our once happy and giggly baby was replaced with a ZOMBIE. Even when he was awake he wasn't really there. Therapy appointments were becoming a disaster. All he wanted to do was sleep.
At this point Gage lost the ability to sit up unassisted alone completely.
It was horrible to witness this.
He used to be the best sitter. He would sit and play with toys and just look around for what seemed like days...suddenly he couldn't. My heart was broken...but I held onto the hope that we'd still get these seizures under control and that my boy would be back.
This year was spent trying all different combinations of medication. We'd think we'd find one that was starting to do the trick but his stubborn seizures always found a way to prove us wrong. His seizures were increasing almost daily it seemed.
Kris and I were really losing hope fast.
The Dr. suggested that maybe Gage was a candidate for a Vagus Nerve Stimulator. Kris and I started researching this like mad.
It wasn't a sure thing but we were more than ready to try it out. Surely this would work....we were all past due for a break.
After meeting with the people from the company we set up the appointment for surgery for Febuary of 2004....a little more than a month before his second birthday.
We were scared to death about the surgery itself but were pretty hopeful that this would help out.
After the surgery we spent months going back and forth to the hospital for adjustments on the stimulator...but sadly we saw very little improvement.
Back to trying medication combinations it seemed. We were slowly running out of options with the medication so the Dr. decided to try the old tried and true Phenobarbital. He was still on others at this point as well....sadly I can't remember the exact combinations....we went through so many. Some he was on for only a month or two...others quite a bit longer.
We tried the phenobarb. for quite awhile and still saw no improvement. He was sedated a lot of the time from the combination of medication and also from the seizures themselves.
At this point we hadn't heard him laugh in quite awhile.
After more months went by with still no improvement the Dr. decided it was time to bring him in for another long term EEG and he also wanted to rapidly detox him from some of his meds. and try Lamictal and Dilantin. Unfortunately the Dr. tried those two at the same time and Gage broke out in rash. They were discontinued because he was allergic to at least one of them...we still don't know if it was both or just one but the Dr. felt it was safer to not try either again.
We left with no answers...just continued to try more meds. and different combos...praying one would work.
It was getting harder and harder to feed Gage. He was sleeping so much of the time...somedays we were lucky if he was awake enough for a jar of baby food and a couple of bottles. Yes...at more than 2 years of age he was still on babyfood and bottles....he didn't have the strength or ability to chew really well and couldn't figure out sippy cups. He also couldn't feed himself or hold a bottle....it was like having a 6 month old.
We force fed him as much as possible in hopes of building his strength and his weight up. He was becoming such a skinny little thing.
I believe it was January of 05' when the Dr. wanted him back in the hospital for another EEG and also a swallow study. We were all starting to concerned over his eating (or not eating). The EEG as usual was a mess. Seizure pattern was almost constant.
His swallow study also came back showing that Gage was silently aspirating on thin liquids. The Dr. said it was a wonder that he had never had aspiration pneumonia.
We were given thickener to try out in his bottles to see if that would help. They also recommended that we have a G-tube placed and also a nissen fundoplication done as soon as possible.
I was not so sure. I told them i wanted to try out the thickener for a month or so and see how that worked. That was major surgery after all...I needed to do some more research.
That hospitalization was one of the hardest yet. Kris and I were emotionally spent and our hope that this would all turn out ok was quickly diminishing.
I did have hope though that the G-tube and nissen wouldn't be necessary.
That hope didn't last too long though.
Gage continued losing weight and was now obviously choking on medication, food and liquids...even with the thickener.
We scheduled the surgery for March 4, 2005...Daddy's birthday.
It was one of the hardest decisions I've had to make to date.
to be continued......
October 9, 2007
Posted by Shannon at 4:42 PM