And Again! {Owen Update}

Cherry Hill Inn at Swedish

Owen's EEG didn't go quite as well as we had hoped. At our March EEG, he had a lot of background discharge so we went back up to a full dose on his Onfi (we'd cut that in half the month before) and increased his Ketogenic diet ratio. We were hoping that those changes would have improved his brainwaves and they did, during the day. He had a few spikes, but nothing the doctor was overly concerned about. At night was a different matter all together. His discharges were almost continuous all night long a condition the doctor calls electrical status eplilepticus. These are still not "true" seizures, but can be quite damaging. She is still amazed at how well Owen is doing despite everything going on in his brain.

Our next step is to increase his diet ratio to 4:1. We are also going to start VERY slowly weaning off the zonisimide. He has very low levels of it in his blood and it can sometimes interfere with the diet. It also has the most severe long term side effects of all the medications he's been on and he's been on it the longest. Zonisimide doesn't usually help with the type of  brain discharge Owen is having trouble with right now, so we've decided it's best to try to get rid of it. we will go back in for another EEG in about a month and see if things have improved any. If these new changes haven't caused some improvements at the next EEG, we will be adding a high dose of benzodiazepine at bedtime to try to get things under control. Then we will go back for another EEG two weeks after that. If that doesn't work, I have no idea what the next step would be.

Here I was thinking that a 24 hour EEG every 3 months was brutal. Instead we get to go even more often! Owen was not at all happy about being in the hospital this time. He did get to ride the cars around for about an hour while the EEG tech was hooking up another child, so that made him a little bit happy. His favorite volunteer wasn't there this time though and he got a quilt instead of a pillowcase which were both wrong in "The World According to Owen". Maybe by next time it will just be so routine, that he won't be upset.

The hospital did manage to finally get all of his recent lab results. Most everything was good. He had a few things that were just slightly out of range, but not enough to worry about. We will be increasing his carnitor which I was expecting seeing as how we added more fat to his diet (Carnitor helps process fat). He is a little acidiotic, so we have to try to get him to take more baking soda. Amazingly enough he hates eating baking soda, I can't say that I blame him. Otherwise the only "abnormal" lab results were perfectly in line with the ketogenic diet. His glucose, for example, was 58 which would be a problem for anyone else, but is perfectly normal on the diet.
So anyway, wish us luck! I'd really rather not give him a high dose of  benzodiazepine every night, so I'm really hoping the diet change works!

Mom Fail!

Owen is in Seattle right now having yet another EEG. This is going to be a regular thing for a while now. He'll probably be having one every 3 months or so while we try to wean off his meds. We decided it just isn't feasible for Rod, Owen, Brenna, and I all to go each time since it means getting a hotel for two nights instead of just one(only one parent is allowed to stay with Owen overnight). We've thought about being more forceful weaning Brenna, so I can go with Owen, but she doesn't sleep well anyway and it's even worse if she doesn't get to nurse. We've also been having major problems with several of the children missing Mommy when I'm gone, so Rod took Owen down this time.

We got all their clothes and bathroom items packed as compactly as possible since Rod has to carry everything from the parking garage in one trip (this is another reason for Rod to go, I tend to bring a few more things). We packed Owen's favorite blankie and stuffed animal, and all of his medicines and keto food. I put the camera in the side pouch of the bag and packed the kindle to keep Owen occupied and off they went. Then they got to the hospital and realized that not only was the camera battery almost dead and the charger hadn't gotten packed BUT I had forgotten to give Rod Owen's insurance card. And it's a new one since his last admission. Oh Yeah, insurance cards are a pretty important thing to bring to the hospital, especially when it's a brand new insurance company. Luckily, our hospital is great and is letting us fax the cards to them as soon as we get a chance. I have people ask me all the time how I manage to do everything, well this is just one more piece of proof that I don't.

Owen is doing pretty well so far for a four year old boy confined to bed with electrodes stuck all over his head and chest. In other words wild and whiny. We won't get results until late morning about how his poor little brain is doing. That's when we'll develop our plan for the next few months.
 Hopefully the only lab in our entire county will have figured out how to send Owen's latest lab results to our Doctor by tomorrow too since they have been having trouble with that lately. We've been on the phone for the last several days and they've only managed to find one of the results from the whole stack they ran. It's kind of hard to take Owen all the way to Seattle for a early morning, fasting blood draw. Especially when we can't let him go too long without eating on the ketogenic diet. When we complained about them not faxing the results to our doctor like the lab orders say, they informed us that wasn't their job. But they can't seem to get them to the doctor even when the doctor's office specifically calls and requests the results either. I guess next time I'll give them 3 days to run the tests and then call EVERY SINGLE DAY and ask them about the results until they just fax them to the doctor in the first place so they don't have to talk to me any more. Seriously? Why would we have a whole stack of labs run if the doctor never needs to know the results? But obviously I'm simply too stupid to understand how having a medical monopoly in my county improves medical care.
Anyway, hopefully we'll have good news on the EEG!

Shearing Day!

Alpaca fiber is very warm. Several times warmer than sheep wool. My alpacas have been letting me know this lately by hanging out in the shade, taking a splash in the pond, and lying prostrate on the ground looking like they are dead. So, today we had the shearers come out to take the fiber off and make the little guys more comfortable. They didn't really enjoy the process, but they ran around and rolled all over the field like crazy afterward. They will be much more comfortable now and they'll have plenty of new growth to keep them warm next Fall when it starts getting cold again. The added bonus is that I now have bags and bags of fiber to play with!

BEFORE

 

DURING

 

AFTER

I'm not sure there is anything funnier looking than a freshly sheared alpaca!

Switching to Swedish {Owen's Story Part 5}

Finally! Part five of Owen's story. You can read the first four parts by following the links below.

Part One

Part Two

Part Three

Part Four

So, at this point we were headed down to Seattle for a video EEG. Since Brenna was still nursing, she came along too. We were told to expect to stay for 3-4 days. We got a hotel room in Seattle Sunday night so we didn't have to get Owen up too early for his 8:00AM check in. We already knew that lack of sleep was a sure fire seizure trigger and while the hospital wanted to get a seizure on record, they didn't want it happening before we could get him all hooked up. Although Rod and I were feeling more comfortable with our new hospital than the old one, we were still very much on edge.

We arrived at Swedish and checked in downstairs and then headed up to the pediatric ward. The nurses were so nice about settling us in. Swedish has all neurology patients bring their own medications because it is extremely important not to change brands. So, they had us bring our meds from home and then the nurses take them and check them in with the pharmacy. Due to our previous experience at our old hospital, Rod and I chose to keep a dose of rescue meds on us. We just tucked one package in our bags and didn't hand them over. I was not going to be in a position where Owen was seizing and  no one was bringing me the medication soon enough EVER again. The EEG tech came in and started hooking up all the probes. First they measure his head and mark red X's in all the right spots. Then they clean the spots with a special cleaner and apply the disks with stuff that looks like toothpaste, but isn't. Next they put gauze pads soaked in the most vile smelling adhesive known to mankind and place them over the disks. Then they use a little air/light gun to harden the adhesive. The whole process takes about an hour and a half. Finally they give him a little hat and hook up his monitoring pack.

From this point on Owen is stuck in his room. The wires reach far enough that he can sit on the window seat and reach the bathroom, but that's about it. Although last time our neighbor did manage to make it a few steps into the hallway before he disconnected his. A few minutes later the nurse came in with Owen's rescue medication and told us that after reviewing his chart they had decided the medication needed to be kept in his room. I was starting to feel a little guilty about keeping the dose I already had with me secret. She also put in an I.V. so they would have another way to give even more medication if necessary. Once she left the room, Rod and I both let out a big sigh of relief! We really felt like we were in the right place and we hadn't even met the new neurologist yet!

So, we all hung out in Owen's room for the next few days. The hospital was kind enough to let me keep Brenna in the room since she was still nursing and largely immobile. Rod ended up staying too because it was pretty hard for me too keep Owen hooked up to all of his wires and also take care of Brenna. It was totally against policy for all of us to be there around the clock, but they were really nice about it. The second day, the doctor came in to meet us and talk about the results they had at that point. This is where it gets really hard. We knew Owen was having the "big" seizures. We were wondering about some of the twitching and jerking he was doing at night and we were beginning to suspect that some of the tripping and falling he was doing was actually seizure activity, but we didn't know for sure.  The doctor confirmed all of our fears and more! It turns out that Owen NEVER had normal brain activity. He had constant spike wave patterns that moved over every area of his brain. Not a single part of his brain was unaffected. Most of the time the activity didn't turn into a true seizure because it didn't stay in one place long enough. He did manage to have several instances of true seizure during the day however and nearly non-stop seizures all night long. That was a lot more than we had been expecting to hear. The doctor told us she had no idea how Owen was functioning (long pause) as well as he was.

We ended up in the hospital for 6 days. Owen did finally have one of his (newly named) "big" seizures, as opposed to the little ones he was apparently having all the time. Our new neurologist told us that brain surgery might still be an option, but only as an absolute last resort to get the large seizures under control since the two we had on record did originate from the same spot, but that we would have to go into it knowing that it wouldn't solve the whole problem. We removed one of his medications that didn't seem to be helping and started a new medication that did help bring the "big" seizures to every 6-10 weeks instead of every 3-14 days. She also talked to us about the Ketogenic Diet. As soon as she mentioned it, I knew we would be trying it. We decided it wasn't going to work at that time though because of all the eating issues we were still dealing with. That was actually the only issue we had during our hospital stay. Owen ended up eating chicken strips and stuff we brought from home the whole 6 days we were there, because he refused all the other hospital food.
Saturday, we got Owen all unhooked, a pretty long process. I don't think all the gunk was actually out of his hair for a week. Owen had been telling us all week that the probes and wires were hurting him. We kept telling him that they didn't hurt, they just felt funny. Well, when they pulled everything off he had open, raw, oozing wounds. It seems that in addition to tape and plastic, Owen is allergic to the EEG adhesive. Unfortunately, frequent EEG's are pretty much unavoidable with Owen's disorder. Now, they are trying to not do any longer than 24 hours, he gets red from that, but only had a few open wounds. There are a few places where his hair has never grown back.
 As soon as I got home I ordered the Charlie Foundation Starter Kit and This Book, and This Book. We started testing some of the recipes (we never gave full Ketogenic meals since that can be dangerous) and making small changes to Owen's favorite meals to bring them slowly, slowly closer to something acceptable on the Ketogenic Diet.
About 6 months later, Owen's seizures had started coming closer together again and we had him eating a greater variety of food, so we told the doctor we were ready to try the diet. Two months later, we entered the hospital again for our diet initiation. It's now been over a year since we've called an ambulance and over 7 months since his last seizure. His EEG in March still showed the abnormal brain waves, but no actual seizures! We made a few changes to medication and the diet and he goes in on Monday to see if we've managed normal brain activity yet. Wish us luck !

We Are the Champions!

Here's another preview of my upcoming post about our big hospital switch a year and a half ago. We Are the Champions by Queen is Owen's favorite song and there really isn't a much more appropriate song to be his theme song. Here he's singing it to baby Brenna (six months old at the time) in his hospital room during his 6 day video EEG.

[ Sorry about the bad quality, this is off my phone since I lost the good video from the camera]

Driver's Ed- Take Two!

This blog post will be accompanied by completely unrelated pictures as the child I will be discussing has asked me NOT to put pictures of him on the blog. He does make exceptions for group shots and special occasions, but doesn't consider this post to be worthy.

We just graduated our second child from driver's ed! Connor had his last drive last week and would have passed if it had been the actual drive test. The instructor wants him to work on parallel parking and backing around a corner before his test, but he would have scraped by with a passing score on this drive. Today, he had his final class where they took the written test. Connor had the highest score in the class! By 8 points. I'm not saying this to brag, I'm saying it justify the fact that we haven't totally screwed our kids up with our relaxed homeschooling method. When they need to they are perfectly capable of functioning in a classroom setting and even passing tests with flying colors.

His next step is to complete 50 hours of driving with a driver who has been licensed for at least 5 years. 10 of those hours must be at night. Then he just has to wait until his 16th birthday and he can be officially licensed to drive.

Can I just say that teaching a child to drive isn't something that gets easier the second time around? A long time ago I was talking to my Stepdad about skydiving. I asked if it was hardest to jump out of a plane the very first time. He told me it was actually the second time that was the hardest, because you already know what to expect. That's sort of how I feel about teaching the kids to drive. Connor is probably a much safer driver than Devon was in the beginning just due to personality type. Devon is much more "fly by the seat of your pants" than Connor is. She also tends to be a little overconfident at times. Connor is a very "type A, everything in the proper order" type of kid. But giving your child control of a large hunk of metal that is capable of traveling at speeds of over 80MPH (I'm not talking about cars going any faster than that, I'm just not) quite easily is a little unnerving. Connor obviously is a very conscientious driver and I'm sure everything will be fine, but I admit that I let Rod do all the beginning lessons. 

Hopefully it does get easier eventually since we have 5 more kids expecting to learn to drive someday! We did count out though and it looks like Devon will have had her license long enough to be the responsible adult by the time Duncan can get his learner's permit. That way she can teach him.

Owen Update {Ketogenic Diet}

I haven't posted much about Owen's health lately. The good news is because it's been pretty uneventful. I know I promised to post about our transfer to Swedish and I'm working on that post. I'm having a pretty hard time writing it because we were in such a bad place then. I'm also having issues getting the video to upload nicely, but it will be soon!

May 25th marked the one year anniversary of the last time we called an ambulance! Yes, we celebrate some interesting anniversaries here in Medical Wonderland. May 27th marked 7 months SEIZURE FREE!! To recap things, we hadn't gone longer than 2 months without a tonic clonic (grand mal) seizure before. We were calling ambulances so often that we didn't even have to tell the paramedics Owen's background information. Everyone already knew him. To get to this point is amazing!

The bad news is that while we are now seizure free, we haven't been successful weaning any of Owen's medications. Our recent try at weaning the Onfi was a failure. While he didn't have any true seizures, he had a lot of abnormal brain activity. So we increased back up to his previous dose of Onfi and changed his Ketogenic Diet ratio from 3:1 to 3.5:1. That means that instead of getting 3 grams of fat for every one gram of protein and carbohydrate combined, he now gets 3 1/2 grams of fat for every gram of protein and carb combined. That doesn't sound like a big increase, but it means that he now gets only 4 grams of apple with his pancake instead of 13 and only 13 grams of cheese on his "sandwich" instead of 17. On a very practical note it means that we are back to having near constant food fights. Owen is having a really hard time adjusting to the change and has been refusing his food. He's eating about 3 different meals regularly. That's with getting 5 meals a day. Everything else he throws a fit about.

On Monday, he goes to the hospital for another EEG which will let us know if the abnormal spike patterns have settled down. If not, we will probably be switching ratios again. I'm really hoping that we don't have to do that since I have no clue how I'll get him to eat then. We are going to talk about adding in MCT oil since that can help raise ketones without making dietary changes. It will also give him a few extra calories without having to alter all of his recipes again which will be a good thing since he completely stopped gaining weight about 3 months ago. Of course the lack of weight gain may just mean he's finally leveling off after the pound a month weight gain the first few months on the diet.
So anyway, prayers and/or good wishes would be extremely appreciated right now!