It’s been over a month since my last update and I’m not sure where to start.
A few weeks ago Emmett had his 24 hour EEG to see if he would possibly be a candidate for a type of brain surgery that could help stop his seizures. But he isn’t. His seizures would have to all stem from the same area and they don’t. They are coming from both sides of the brain and branch out over his brain. I feel both relieved and defeated at the same time. Relieved that we don’t have to make a very difficult decision to put our little boy through brain surgery, and defeated because it’s something else that could have helped him that can’t. Our list of things that might help him seems to be growing shorter and shorter.
His seizures have also changed. Also, not every kid that has pvl has epilepsy, it depends on where the damage is and if the grey matter of the brain is affected. Which it is for Emmett. And his injury happens to be in the area of the brain that’s responsible for vision. The Dr. said that’s why he’s a more “severe” case. I didn’t like hearing that word very much.
We were able to get him down from 4 medications to 2. We successfully weaned him off the vigabatrin but new seizures surfaced once that medication was out of his system that had initially been suppressed. He’s not having the cluster seizures anymore that last between 10-15 minutes (which has been GREAT) but now he’s having generalized tonic seizures, and they’re scary. A few days ago when he had one he started to turn red and I’m not sure if he had stopped breathing for a few seconds or not. I’ve read that some people can lose consciousness during these (he hasn’t yet) and when the chest contracts it makes breathing difficult. The seizures take him off guard and he gasps and breathes funny. His eyes roll up, arms come forward and stiffen and his entire body tightens and shakes. Our neurologist wanted to up his diet to the 4:1 ratio to see if that would help things, and it seemed to for a bit. For about two weeks after he had the EEG things were going really well. His seizures had calmed down, he was visually attending more and holding his head up and wanting to try and sit up more. But now they’re getting worse again and the fat ratio is maxed out. I really, really hate when things go well and then get worse again. Every time he does well I wonder how long it’ll last and get really emotional when his seizures get worse again.
I spoke with our neuro yesterday and he thinks it would be best if we take Emmett off the ketogenic diet to try another medication called valproic acid. He can’t be on this particular medication while on the diet. And since he has a carnitine deficiency, because of the diet, we need to put him back on vigabatrin (I may have said a lot of bad words about that) so his seizures don’t get even worse while we wean him off the diet. He needs to be completely out of ketosis before we start him on the new medication. The valproic acid can also cause the phenobarb to become more potent, so we need to really watch him and make sure he’s not extremely lethargic and sleepy. If that happens then we’ll have to lower his dose of phenobarb.
So, right now he’s currently on three medications again plus the diet. And soon he will be back on four !@#$’ing meds. We started him on the vigabatrin last night. The neuro wanted us to give him 500mg at night and 500mg in the morning. I asked him if we should wean him back onto it, since that’s what we did when he was much younger and started it. The neuro didn’t seem to think starting him on 1000mg a day would bother him since he’s older and bigger now.
Today poor Emmett has been so beside himself and just absolutely inconsolable. Everything that usually makes him laugh or smile sets him off into a fit. I couldn’t even touch him or talk to him, it made him worse. I made another call to the neuro and he said the dose was too strong for him after all. He didn’t want me giving him any vigabatrin tonight, or tomorrow, unless we start to see the generalized tonic seizures pop up again. Today, he hasn’t really had any, just a few small ones. He went from having 10-15 bigger seizures a day to a handful of very subtle ones.At least we know the vigabatrin stops the generalized tonics, I guess. But he was on it for infantile spasms to begin with, and doesn’t have those anymore. When those seizures become bigger again I’ll only be giving him 500mg at night and that’s it. Hopefully that will help those seizures enough until he’s off the diet and on the new medication. But, those cluster seizures might come back since he’s back on the vigabatrin. Certain seizure medications can actually make other seizures happen while they stop different ones. It’s maddening.
So it begins. I hate this.
I’m feeling so defeated, stressed out, upset and nervous. I’m really nervous to wean him off the diet because I don’t want his seizures to become completely insane. I don’t want him back on vigabatrin because that’s the one that causes permanent vision loss. And since he has a visual impairment already, it’s upsetting that he needs to go back on it. It was like a haze was lifted off of him when he was done with the vigabatrin. He was actually starting to communicate with us. He would whine or cry when he was hungry or over tired… it was so nice to kind of be able to figure out what was wrong. I’m really hoping we see good results with this new medication and then we can hopefully wean him off other meds again, and not have new seizures pop up.
HOWEVER! If we can get him off the diet successfully and have his seizures (somewhat) controlled with the valproic acid, he can start to eat normal foods again! Ryan and I have already made big plans to take him out to Menchies for frozen yogurt, I’m going to bake him a belated birthday cake, he can actually eat at the same times as us, and we can start to teach him how to feed himself again! And he can have fruit. So much fruit! He loved his fruit. And there will be no more forcing food down his throat when he’s sick, no more waking him up to eat if he’s napping, we’ll be able to travel much easier and not have to always rush home at specific times so he can eat… so there are lots of positives if this can work out.
I’m so tired. Completely emotionally wiped out. I imagine the pregnancy is magnifying all of that. I’ve been having a really hard time trying to enjoy this pregnancy, too. I question every move the baby makes. The doctors had said Emmett may have had seizures while I was carrying him, so every time I feel her move I feel anxious, nervous, nauseous… not how I want to feel at all when I feel my baby girl moving around. This pregnancy has been identical to my pregnancy with Emmett. Even down to the movements. I’m very anxious to meet her yet almost terrified at the same time. I’m trying not to worry, really, I am. But it’s one of those ‘easier said than done’ things. It also doesn’t help that most newborn movements look like seizures. When friends of mine post videos on facebook of their newborn, I see movements that make my heart sink because it looks like seizures. I’m starting to be scared that I’ll just be a wreck when she’s born.
Another frustration – Now that I’m 30 weeks I’m having a difficult time carrying and lifting Emmett. I can’t do everything with him that he needs right now. Just carrying him wipes me out because he doesn’t help support himself at all, he’s just dead weight. It’s especially difficult when he resists being held and arches back. It doesn’t feel very good on my tummy. Snuggling him is even uncomfortable right now and that saddens me so much. ANd I’m not sure if I’ll be getting another c-section or not, but the thought of having to recover from that surgery again sickens me. Especially since I won’t be able to hold Emmett for a while. Thankfully Ryan will be home for a few months so he can take Emmett to all his appointments and therapies. If I do get a c-section again, I’m hoping I’ll be able to recover more easily this time around. With Emmett, he had his first seizure at just a day and a half old. I didn’t have the experience of having my newborn baby at home. There was no resting peacefully in bed while I nursed. We were constantly in and out of the NICU, ER and doctor’s offices. Hopefully this time around I will be home with both of my babies!
This isn’t a very happy update, I know. But this is what I’ve been going through lately and how I’ve been feeling. Hopefully my next update will be on the chipper side of things.