It's all about the eyes

>> Saturday, January 31, 2015

The eyes may be the window to the soul, but with Autism, they are next to EVERYTHING *and* the soul. You can see what isn't there and as much as you can see what is.

For Bug, we started losing eye contact at the age of 3. And for at least 6 years, he would only look at us once in a while, usually after a seizure. He just wasn't 'there'. With the advent of Leucovorin for his Cerebral Folate Deficiency, he started looking at us again, not through us, or beyond us, but at us. He starting seeing us again.

That was almost 3 years ago. Each year gets better and better and then came the CBD.

Since starting that 4 months ago, he doesn't just look at us, he seeks us out. He WANTS us to look at him.

He will be playing intently with a toy, happy, humming at it and then he will pause and look at one of us and just stare. Sometimes he will smile, but mostly he just looks.

I have no idea why he does, or what he is 'getting at', but the fact that my boy is PRESENT and aware and looking at me again, it means everything. It IS everything. Not saying: Mom I love you or Mom, leave me alone, heck even Mom, I hate you would mean as much to me. Speech may come, it may not, but the fact that boy sees me again, and wants to spend time with me, looking at him, seeing him, it really is everything and more.


The pipe dream

>> Tuesday, January 27, 2015

Bug may never be seizure-free, we know this, we accept this and it breaks my heart but it is what it is. We knew that going into the Epidiolex study we may not see a huge response, we also knew that we had to try. He was doing well, went seizure-free for a week and then we upped his dose. Seizures came back, and I was the only one that wanted to hold at the lower dose. So, we kept going up. He went seizure free again for week, and I posted about it. As soon as I did...bam. Several seizures. It always happens.

He hasn't been seizure-free for longer than 36 hours since. BUT his seizures are fewer now, and getting shorter and less involved. So, as we thought, it seems as he is replacing damaged cells with healthier cells, he may get better slowly.  He is more aware and we (Taylor and myself) heard him say something. Neither one of us could actually say what it was but it was clear formed sounds. He is sleeping better, and having better bowel issues. He still is wandering if you don't hold on to him and is hit or miss with following simple directions, although more hit than miss.

But, what would you do if you knew this:

Epidiolex is 100mg per 1ml.

Charlottes Web Hemp Oil (CWHO) is 50mg per 1ml

The average therapeutic dose for CWHO is 1.5 - 2.0ml twice a day. Or 150 to 200mg a day.

Bug was seizure-free on 1.5ml 2x daily of Epidiolex. Or 300mg a day.

He is now on 600mg a day.

What would you do?



>> Wednesday, January 14, 2015

There is a string of expletives sitting just below the surface that would accurately describe this last week with Bug.

He is seizing more, grinding his teeth as he does, he is not eating much, drinking much and doesn't want to move much.  The frustration is palpable.

I have no clue what is going on, aside from the new medicine may be too high in his system or he is getting sick. Maybe he hurt his jaw again...who knows? I sure don't and with all the comments being made lately, I am second-guessing my assessment of symptoms with him. Something I have never done before and that I advocate ALL Mother's not to do. But I am doing it, because if you hear it enough you begin to believe it.

And then, every so often he perks up, it lasts a few minutes, sometime he seizes immediately following the burst of joy, which would make it an aura, get that? His happiness is part of a seizure. Super cool right? Sometimes, he is just feeling better and eats something and then lays back down.

One more day of this and he will go to the Doctor. But which one?


Not the Christmas present we wanted.

>> Wednesday, January 7, 2015

On December 20th, 9:30am, Bug had a seizure.

It happens, a lot it seems, but this one, while not nasty, landed him with a broken jaw in two places.

What transpired after that was mind-numbing:

10 hours of a broken jaw, two open lacerations that needed stitches but were not closed because of the impending surgery, the nightmare of not being able to deliver his seizure meds, a lot of morphine, and facing the possibility of a jaw wired shut - which is disastrous for someone with epilepsy.

From the moment we saw that poor jaw hanging awkwardly I knew what was really coming: tons of seizures. And sure enough, before we even got him in the car, he was crying and having 2 more seizures. Full convulsive, which made his jaw crackle and pop and made me start to get really angry. As soon as the seizure would stop he would cry, and all I could do was hold him gently to try to offer comfort. I held him and kissed him and let him get comfortable on me while we drove to the ER. He stopped crying and we thought: maybe, just MAYBE it's not broken. No such luck, he's just a strong kid.

We got him to the ER and as soon as the Doctor felt his jaw, he also knew it was broken. He ordered a CT scan and Morphine. That Morphine was the best thing ever, it relieved his pain but he didn't stop seizing,  at least he was comfortable for the CT scan.

They got the scan, the first time (thank you again Morphine) and he went back to his room in the ER. The Doctor came back in a said: 'His jaw is broken and I have been calling around trying to find a surgeon but the Saturday before Christmas? No one is answering their phone. I think you would have better luck at Primary Children's.' Because we are both freaks, we asked to see the CT scan. He took Glenn (Daddy) into the other room and when he returned he had a copy of the 'best view'. I started to tear up and then I stopped, my tears wouldn't help, they would just enable me to wallow in his pain, and that doesn't do anyone any good.

The Doctor came back in a few minutes later and said he was going to Primary Children's but first they needed some more CT views, so back he went into the CT room. The Morphine was starting to wear off. As they were getting ready to move him onto the table, he seized. The techs were very patient while he had a tonic seizure and then they were saddened when he went into and even longer T/C. We comforted him and waited it out. They got their scan and when he got back to the ER room, he got even more Morphine. It made him feel better and he perked up a little.

The ambulance arrived for transport, which wasn't a choice since he had been given a narcotic, he HAD to ride with the ENT's. I walked over to them to tell them about his seizures, as I was relating how there was an almost 100% chance they would see a seizure, they listened intently and then asked if one of us wanted to ride with him. Well, duh, I would. So I did. And he seized. The ENT riding in the back with us, missed it, it started out subtly as a tonic and then when it subsided, he again, went full T/C. I had to ask her to remove the toy from his hand, she was just sitting there watching him seize and bring the doodle pro closer and closer to his head with the stylus wrapped around his finger. Anyone else seeing where this could go? Doodle Pro being flung into his head, my head, her head? Ya, me too.

He arrived at PCH a little after 1pm. By 2pm, after two more seizures they gave him some valium to help stop the seizures. And stop they did, for two days. It took them another six hours to get him into surgery where he was operated on by 5 Doctors for 4 hours.

They had to remove a few pieces of bone that could not be salvaged, put the teeth back in alignment, place a surgical steel plate in to hold his bone together and make a splint to hold the teeth and jaw in place. Not the Christmas present we wanted but I bet it's shiney! They wired the splint into the jaw and it will remain there until January 29th when they will sedate him to remove it.

He was in the hospital for 3 days, not the longest trip but by far the most painful. He was on Morphine every 3 to 4 hours, an antibiotic, and valium for the seizures until he woke up enough and was able to swallow his crushed up meds. He recovered fairly rapidly, I guess that's the upside to being cognitively less than 2 years old: you don't know to be miserable.

Since he came home, we have been hovering over him in case he seizes. We didn't hover enough because about 5 days ago, he seized, hit his chin on the counter and while I was able to stop him from hitting the ground, he was bleeding from the mouth and crying...and I was crying. I could picture another trip to the ER and a feeding tube. We waited to see how he would recover and 30 minutes later, he was fine. Bleeding stopped, he was cuddly and hungry.

It's been very rough. One of the toughest things I have ever experienced. While we have great support, it just doesn't help with the feeling of failing him.  He is drooling non stop, will try to eat his favorite foods and then be miserably sore afterward. His siblings still want the same amount of attention but are being pretty sweet about helping him. Ava even said Hooray, Buddy's home! when Bug walked in the door from the Hospital. Still, the emotional toll has been staggering. I am not sleeping well, my shoulders, back and knee are sore from trying to keep Bug safe. At this point, the children have won and they run the house. I don't care, we will get it back. Eventually.

We saved Christmas and everyone got what they wanted and was happy about it. I think. Bug even smiled that day, which was good enough for me. I am still trying to be strong but I will admit to crying EVERY day since it happened. And finding happiness in chocolate covered macadamia nut clusters. I am not as strong as people think, but I am strong enough to make it through this. A sabbatical from the EAU might be in order, but I won't take it. No matter how many times I am the scapegoat for someone not doing what they should be doing, no matter how many times I hear about how I am being selfish or I hear the lies being told about me, no matter how many times people say thanks and then I never see them again, I know that what I am doing is right. I know that my little family is not suffering because of it, I know that they understand and they know I will stop all this if only they ask. I also know I can not ask of others what I can do, my standards are not theirs. I am not a bad guy, epilepsy is not the bad guy, I will not give it that much power over us. If Bug can keep going, I will be there to support him. Heaven help us all.


What a Seizure looks like (Graphic Content Included)



Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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