Now that we had the date for surgery scheduled we decided to have an early birthday party for Gage. We were told that because of the choking that it was almost certain that Gage would become non-oral once the g-tube was in. I think knowing that was what made the decision so hard. I couldn't fathom the idea of everyone sitting down for Thanksgiving or Christmas dinners and my child not being able to enjoy the food. It seemed beyond unfair. I was really starting to wonder how much more we could take. But we went ahead with it....and it ended up being a good move. Gage put on much needed weight and started to look healthier. As hard as the decision was I'm glad we made the choice to do it.
Once that was done we went ahead with trying to control his seizures. His neuro. played around with dosages...adjusted his VNS settings....but nothing was helping. It was around this time that the Dr. thought Gage had moved into Lennox Gastaut Syndrome We were devastated. Out of all of the different seizure disorders this was the one nearly impossible to treat.
Around this time Gage's neuro. moved from Chicago to Milwaukee and being that we're pretty much smack dab in the middle of the two cities we followed. It seemed we had come full circle. The very first neuro. we ever saw back when he was just a couple months old was in the very same clinic that his Dr. had moved to.
Because of the LGS diagnosis his Dr. revamped his medication and decided to put him on the combination of Valproic Acid, Felbatol and Clonozapam. The side effects of all of these drugs sucked. Gage was losing the ability to do anything. Therapies were pretty much done at this point because he was 3 and that's the age when Early Intervention stops. Not that the therapies ever really did any good.
The realization that Gage would never be normal was completely set in. The picture I once had of watching my son play baseball was gone and in it's place was vision's of me pushing a wheelchair. It hit Kris even harder in that aspect. I know how much he was looking forward to doing all the father son things. We were really discouraged but we had to keep going. What choice did we have??? None of this was fair or right or made sense. This was not how parenthood was supposed to be. I mean you hear about kiddo's like Gage but you never for one second think that could ever be you. At least I never did.
I know this part is short but I'm going to finish up the rest of the story next time...
October 11, 2007
Posted by Shannon at 6:50 PM
October 9, 2007
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......
Posted by Shannon at 4:42 PM
October 8, 2007
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
Posted by Shannon at 4:27 PM
October 6, 2007
I suppose an intro. of sorts is needed...I am Shannon and I'm married to Kris. We have an amazing 5 year old little boy. He has Lennox-Gastaut Syndrome and a host of other disabilities/issues. He's my little fighter.
Kris and I also have a crazy kitten (Captain Spaulding)...but this blog is for Gage. lol
Although I'm sure Captain will make his way in here from time to time.
And that's my little family.
This is just a basic first post to get the blog started.
Next up will be Gage's story....
Posted by Shannon at 4:28 PM