1 Month on Keto!

Oliver has been on the Ketogenic diet for a full month now. We've seen about the same amount of seizures (more in fact) as last month, but a few of them have stopped on their own without medical intervention so hopefully that's a step in the right direction. He had a bad one yesterday but seems to be feeling great today. His blood was drawn today and if all the blood work looks ok that will mean he's tolerating the diet fairly well and we can increase the ratio to 3.5:1. They hope with this increase we will see more consistently high / large ketones and better seizure control. Crossing our fingers that they are right!

I had a bit of a breakdown at the doctor's office today. They handed me some packets of information to fill out prior to our meeting with the Keto team. In it was a questionnaire for development level of children 12 months of age. I hate these things. I can't answer yes to any of the questions. I couldn't even answer yes to the questions on the 6 month questionnaire. Not only are they asking me "can your child throw a ball" , "does your child look when you point at something", "does your child try to gain your attention to show you stuff" , "is your child walking independently or does he/she still need to hold onto your hand when walking?".....but as I'm answering these questions with tears running down my face...there are two little boys just about the same age as Oliver....walking around right in front of me. Stopping to bend down and pick stuff up (another question on the questionnaire), smiling at their parents (again, I have to answer no to this question), and grabbing toys (nope, can't do that either). It just seemed like exceptionally bad timing or a very cruel cosmic coincidence. It's not their fault they are normally developing and I shouldn't be so sensitive but it just seemed like a sick joke.

By the time they call me back to meet up with Jason and Oliver (who had gone back to do vitals while I did paperwork), I'm emotionally a bit of a wreck. I feel bad for the nurse who asked "how are you doing today?!" Normally i just smile and say "fine!". Today I told her the truth. Sorry lady, but you asked. "I'm awful".

Nice fall weekend!

We had a great weekend. Got lots of keto cooking done, prepped some things for our own dinners this week and got to enjoy the beautiful and unseasonably warm fall weather. Saturday we had brunch with Uncle Bob and Uncle Brian at Ann Sather. Tobin was in sticky bun heaven and it was really nice to catch up with family who can always make us laugh. It rained quite a bit so we spent the rest of the morning watching a Diego movie and doing laundry. In the afternoon we went to a party at a friend’s house for Halloween. There were TONS of cute kids in costumes and Tobin had such a great time running around and playing. It was nice for the grown-ups to sit and talk and just have a relaxing afternoon away from medical discussions and obsessing about the diet and ways to make it better for Oliver. Oliver had a great physical therapy session and then he and Jason joined us at the party. He took a nice nap after therapy and then woke up to hang out with everyone and visit with his little buddy Nicolas, the younger sibling of Tobin’s friend from music class, Sofia.

Sunday we enjoyed going to TWO different parks and I spent about 4 hours on my feet in the kitchen cooking and prepping keto stuff for the week. It is a time consuming and labor intensive process. One of the women I know who also has a child on the diet said she likes to think of herself as “cooking to cure epilepsy, one meal at a time”. I try to think of it that way too and I hope it helps Oliver. I will do this as long as he needs me to.

Last night we had a really nice dinner. Oliver had eaten already and was just hanging out in his bouncy seat, then he dozed off with a belly full of cream, butter, sweet potato, and chicken. Jason, Tobin and I all sat down to eat and just talked about Halloween and costumes and the different ideas Tobin had for making his costumes even more fun. Kids have a way of making you forget your troubles when they get so excited over small things. It’s a good reminder of how magical and wonderful the world can be, where everyone can take the opportunity to pretend to be something else. I am really looking forward to taking the boys out this year. I haven’t taken Tobin trick or treating yet, and he’s nearly 4 years old!

We have our one month keto follow-up appointment at the hospital on Wednesday this week. We’re going to try and figure out why Oliver’s ketone levels are so inconsistent and try to figure out what tweaks and changes we can make to his diet to get it working better. I have a feeling we may end up on a 4:1 ratio, which means more butter, cream and oil in relation to the other carbs/protein he eats. It’ll take some adjusting but shouldn’t be too bad at all to print out a new set of recipes and go from there. I haven’t prepped any meals beyond Wednesday just in case they do change the ratio.

Oliver has been smiling a bit more lately. I hope that means the diet is doing some good things as we haven’t seen any other obvious changes. Seizure activity is about the same (but not markedly worse, so that’s good) and development is about the same as well. Hard to be patient when you read the stories about children who began holding their head up overnight after starting the diet. But we’ll take the additional smiles, because they are SO beautiful. Last night Oliver was pretty awake and alert after Tobin had gone to bed and I had a great time bouncing him up and down to make him smile. Then he promptly fell asleep as soon as I put him in his bed.

Celebrating small things

last night Oliver went to sleep around 9pm....Jason put him in his pack n play outside our bedroom ...on his side...and he SLEPT ALL NIGHT. At 6:50am I heard him yelling and he sounded REALLY frustrated....it's because he had turned to his belly and was throwing his head back in an effort to roll over. His body wouldn't follow his head, but that's ok. He was trying. I scooped him up for 10 minutes of cuddling before the morning routine of medicine, supplements, miralax and keto breakfast. It was a nice way to wake up.

October

October is a tough month for me. I think because we have had quite a few things go wrong in Octobers in the past, I'm always waiting for the worst to happen. 2 years ago Tobin had some issues with a double ear infection and the coxsackie virus at the same time. Neither were diagnosed quickly and the coxsackie took over 10 days to be found. In that time Tobin stopped eating and drinking and was MISERABLE. It was a really rough couple of weeks that ended with us in the ER for IV fluids instead of enjoying Halloween like we had planned. At that time, Jason and I thought what we were going through was incredibly stressful and traumatic and little did we know we had dozens of ER and hospital trips ahead of us in our lives. Tobin did recover with the fluids and with some help from "magic mouthwash" we were able to continue to get fluids into him at home, and get him eating again.

Then, a year ago I was so excited for Tobin to have his first real Halloween since he was robbed of the experience the year before. We had the same costume (which he never wore!) and it still fit. Perfect. I went to Tobin's school, with newborn Oliver in his stroller , and helped pass out candy to all the kids and really enjoyed the (cold and rainy) Halloween parade. I was looking forward to taking Tobin trick or treating that weekend with a cute little baby in his pumpkin onesie to tag along with us. When I got home from the school I sat down with Oliver and he had some milk and decided to take a nap. He looked so peaceful and quiet, but felt very warm. I started looking around the house for a thermometer and realized I only had an ear thermometer and it was too small to fit into his ears. So then I dug around some more and found an old rectal thermometer I had bought when Tobin was born. The batteries were dead. I sat around for 10 minutes trying to figure out if I was over reacting or if I really needed to check his temp. It was pouring rain and Oliver was not the best traveler at the age of 3 weeks. I didn't want to take him out and wake him up because I knew he'd scream in the car. So I finally called a friend and asked her to pick me up a rectal thermometer and bring it over. About 30 minutes later, she did and we got the reading of 101.6 which is way too high for a newborn. I called the pediatrician who recommended we go straight to the ER. I didn't realize that when a newborn has a fever they do a spinal tap, and take blood and urine to look for infections.

As we arrived at the ER Oliver woke up and had one of his signature screaming fits, ending in a giant messy poop out the back of his cute little pumpkin onesie. They quickly undressed him and then PUT HIM UNDER A HEAT LAMP in the triage room. Apparently this is their protocol, but perhaps they didn't realize he had a high fever? As he got warmer and more red I mentioned something to the team and they took his temp again. Over 104 at this point. After they took him out from under the lamp and gave him some tylenol he began to cool down a bit. It took them 2 tries to get the catheter in and then they asked me to step out for the spinal tap. Oliver looked listless as I walked out of the room and I had a brief thought that I might never see him again. I immediately starting crying and called a friend to pick Tobin up from school so that Jason could leave work and come straight to the hospital to be with me and Oliver. They ended up admitting Oliver that night and the spinal tap results showed meningitis. It was the viral kind, not bacterial so it was "less serious" but we still had to stay in the hospital, in isolation, for 4 days. We never did figure out how Oliver got meningitis, but were only told that it could have been any virus that entered his body (even the common cold) and spread quickly because newborn immune systems are so risky. Oliver appeared to be doing fine and we were able to bring him home within 4 days. We will never know exactly what the meningitis did to his brain stem. There was no visible damage found at his MRI at 5 months but I still worry that something happened at that crucial stage of development that might be a contributor to his seizures or his lack of development. The question will always remain: Was it the meningitis, the CDG, or some combo that triggered the infantile spasms?

This all happened last year during Halloween weekend. Suffice to say we did not get to do our trick or treating as a family with a cute little baby in his pumpkin onesie and Tobin the turtle ringing doorbells. However, Jason did get to take Tobin out with his Papa Frank and they had a great time while Mom and I stayed in the hospital with a tiny little newborn in a hospital gown. Recently I packed up all of Oliver and Tobin's old baby clothes that they have outgrown and sent them off to various friends to use for their babies. The one thing I couldn't get rid of was the pumpkin onesie that Oliver was wearing that day we went into the hospital. I don't really know why but it seems to represent the day our lives changed forever even though Oliver wasn't diagnosed with IS until over 4 months after that day.

As Halloween weekend approaches again I find myself wondering what kind of holiday we're going to have this year. I keep holding on to that image of two parents and two children trick or treating around the city, enjoying a nice fall evening. Maybe this year will be our year.

Over. Whelmed.

Feeling a bit overwhelmed at the moment. I have 5 full time jobs and I’m under performing in each of them. I’ve never broken it down before but I realized that I have to be a mom, wife, employee, nurse and personal chef all at the same time. When you are juggling so many things at the same time, it’s nearly impossible not to drop something.

I have let Oliver’s diet/seizures/medical issues consume me and spend about 23 hours per day thinking about how to fix the problem. It’s so difficult to read advice from other parents on the keto group mailing list, and try to figure out why our keto team never told us these things. Finding the perfect version of the diet for Oliver is proving to be way more difficult than I thought. There are SO many elements. The medications he’s on, the vitamins and supplements he takes, the artificial sweeteners in various products, the carbs in the preservatives in various foods….all contribute to reasons why the diet may not be decreasing his seizures. Then we have wildcards like the antibiotic he’s on now for his ear infection and Jason forgetting the cream part of his breakfast on Saturday morning. It’s a wonder that anyone ever gets seizure free on this diet.

Beyond the diet we still have to deal with Oliver’s lack of development and the fact that we don’t do therapy with him daily like we should. We spend so much time trying to get the food and fluids and medication into him, when he has 5 minutes of downtime we just stick him in his bouncy seat or on his playmat to have a little bit of time to JUST BE A BABY, rather than work him out. It’s very hard leaving him at daycare every day worrying about how his meals are going to go and if he’s going to get enough tummy time and water to drink throughout the day. But if I were home with him I’d be even more overwhelmed with figuring out the exact combination of foods and medications to get him seizure free. He may never even BE seizure free. Maybe we focus so much on the diet and the seizures because facing the facts that he’s 12 months and still developmentally like a newborn is just too hard to face. Last night I stumbled on some videos of Oliver when he was just a couple months old. The way he was moving his arms and his facial expressions are the exact same things he does now….9 months later. He hasn’t changed at all. Except maybe he lost a few of those things and slowly gained them back? Who knows, it’s just really frustrating. At the same time I keep trying to be grateful that my son currently eats on his own, breathes on his own and performs basic life functions without assistance of tubes and machines. Who ever knew that someday I’d just be so grateful that my kid can eat on his own while other parents are sad because their 13 month old only has 3 words! It’s funny what a bit of perspective this whole diagnosis has given me. Though I’d rather be blissfully ignorant of all the bad in the world and would gladly give up my new wisdom for a healthy child.

I read about women who have husbands who are blissfully ignorant about the extreme amount of time that goes into caring for a special needs child and I’m happy that I have a true partner who helps make meals, gives medications and goes to doctor’s appointments and therapy. It’s probably good that he doesn’t spend as much time reading and talking to other people online about the diet and the seizures because he gets to have the mental break of not having constant emails flooding in about seizures and meds and symptoms. I still feel like I would miss too much if I weren’t on the lists so I have to read about it all day long. But it makes me less of a fun person. All I can do is think and talk about Oliver and his issues and the best way to help him. It probably doesn’t make me very fun to hang out with. Maybe someday I will be able to be much more “zen” about this but I think that would require a very large personality overhaul.

Monday night we experienced within just 4 hours what could be considered a prime example of the extreme ups and downs we go through in our lives. I arrived home from work to find Oliver playing on the floor waving his arms around on his playmat. I said hello to him and then was greeted by a big hug from Tobin. Jason was just starting to cook dinner so I started working on Oliver’s meds and keto meal plus the weighing and measuring for all the stuff he needs the next day at school. Tobin was happily playing by himself in his playroom. I walked into the living room because it appeared Oliver had fallen asleep on the floor and when I got closer and started talking I noticed he was peeking out from behind his little arm with a smile on his face. I called everyone in to look at him because it was just so darn cute. He smiled at us some more and then laughed. It’s moments like this that make me think things are going to be ok. Everyone is happy, things are fairly calm and though we have a lot to do, it’s not overwhelming. Oliver did eventually fall asleep so Jason, Tobin and I had a nice dinner. Then, as we were starting the dishes, Oliver woke up. He woke up very sad and upset about something which he does time to time. Usually these fussy periods last for about an hour and we have no idea what’s causing them. He just cries and cries with nothing that can stop him. It’s at this moment that our life goes from fairly enjoyable to chaos. Because Oliver is due for medication Jason starts giving it to him even though he’s really upset. This results in Oliver throwing up within a few minutes of his meds and us stressing about whether to re-dose him or not. In the meantime, we’re reworking our whole idea for a keto dinner because it’s hard to get Oliver to sit and eat a pureed meal when he’s so upset. So I tossed out everything I had just made and got a bottle of the ketocal formula ready for when he finally settled down, then rapidly started trying to do the dishes so we had enough bottles for daycare the next day. Meanwhile Tobin had finished watching a few episodes of Caillou on my laptop and needed a bath but was giving me a hard time about getting in the tub. I was asking him to take a bath first, then settle in to watch his tv show before bed but he wanted to do things in the opposite order. So then I had both boys crying, a sinkful of dishes, a cat that needed water from the bathroom sink and keto meals that still needed prepping. It’s moments like that when I feel as if we can’t go on like this much longer and the medical issues and the diet and everything else just seem to be TOO MUCH. So that’s a typical day in the life of the Saxtons. Some days are more like the first half when everything goes along smoothly and we run like a well oiled machine, everyone contributing happily to the chores and peace in our home. Other days are complete and utter chaos with everyone snapping at each other and lots of tears all around. I can only hope that as time goes by, we start to experience more joyful days and less sorrowful ones.

Back to the grind

I got a nice break over the weekend and took Tobin to NJ and NY for a family wedding. It was really odd to be traveling with just one child, no stroller, and lacking several bags full of diapers, bottles, meds, etc. It was also my first time on a plane in 2010 which is very weird for me, as I used to consider myself a frequent flyer! Tobin did great on the plane both times and was very patient and great at waiting for the fun (dancing and cake) to begin during the wedding. Apparently the ceremony is "boring" but he likes the part where they kiss at the end although he didn't quite understand why they needed to kiss. He then asked me when he is getting married and I said , "well, as soon as you find someone to marry I suggest you ask her (or him)". We'll see how that works out.

We were both very happy to see Jason and Oliver when we got home. Jason was making keto cheesecakes for Oliver for the week (and had already measured out tons of butter, oil, cereal, and miralax for the next few weeks, yay!). Oliver was asleep. He woke up shortly after we came home and had a seizure :( Not a great way to greet me but it's not his fault. he was very quiet but I just knew that he wasn't napping anymore so I went into his room and he was shaking and looked very scared. He had some very mild spasms around his face only and then burst out with full spasms /screaming a minute or so into it. Luckily his cluster only lasted a few minutes and ended on its own without any intervention needed from us. It's sad to say but if every seizure were this "easy" it would be a little easier for us to handle. The long drawn out hour long seizures are very hard to take and they take a big toll on Oliver and he's just exhausted the rest of the day. After yesterday's brief cluster he just snuggled up into me and lay very still. I was worried that something was wrong but after looking at him closer it seems he was just happy that I was back home. We had a nice long cuddle and then he started cooing and seemed ready to play for a bit while I made his dinner. We tried a new meal last night. Scrambled eggs with LOTS of butter and cream and a tiny bit of applesauce on the side. He did ok once we figured out that we need to puree the eggs to make them easier for him to eat.

Apparently, on Thursday as Oliver went in for his flu shot, he was found to have a minor ear infection. Most of the time the doctor wouldn't treat it but would watch it to see if it got worse. of course, since Oliver has neutropenia he insisted on antibiotics. We told him Oliver's neutropenia had pretty much "resolved" for now so he left it up to us whether we want to start the drugs. on Friday Oliver had a pretty nasty seizure that required an extra clonazepam dose so Jason decided to get the pills and try it. because of the diet, Oliver can't have regular sugary amox, so they put it in capsule form. Since he's been on the pills we can smell the antibiotic in his urine, which is weird and his keto stix (urine testing sticks) have been testing really low despite his diet being the same. So either the pills are changing his ketones because they aren't carb/sugar free or they are altering the color of the ketostix because it's coming out so concentrated in his urine. odd. We have a call into the keto team to figure it out. Hopefully once he is off the antibiotics and is feeling better we will see less seizures and get back on track with his diet...just in time for his 2nd flu shot (flu shot booster). So who knows if that shot on Thursday was the cause of the seizures. ARGH!

My goal is to get him off the clonazepam by Thanksgiving. I really want that drug gone (but we'll use it as our rescue med for now) on a daily basis. I don't want to make too many changes at once so we'll wait for him to come off the amox and for his 2nd flu shot to be done before we go taking away the clonazepam. I just don't know what it's actually doing and if it's helping or hurting at this point. I would also like to get rid of the vigab just to see what Oliver's "baseline" is in terms of seizure activity and development with only the diet in place. THen we'll decide if we need another medication or a diet adjustment.

So we're back at work, school, daycare and back to the grind but we all had a decent weekend. Jason enjoyed our free HBO all weekend long and Oliver got a lot of daddy time which he loves. Despite a few seizures he had 2 good therapy sessions on Saturday and did lots of cooing and talking to us last night.

Quick Update

After a rough start, Oliver appears to be eating better and taking fluids better. He has had 2 seizures since the diet initiation but both were very mild and ended on their own within minutes. This is hopefully a good sign that the diet is helping to decrease the intensity of his seizures.

He is cooing a TON and starting to smile and laugh a little more on the good days. We are still adjusting to the rigorous weighing and measuring involved with the diet but we've had a lot of help from Grandma Eunice the past 2 weeks and it's made a world of difference.

Oliver had a hematology appt yesterday and is graduating from their clinic! his neutropenia appears to have resolved itself and he is no longer anemic. Finally some good news! we'll continue to monitor his blood over the coming months to make sure this is a permanent change.

here is a good link for more info about the diet: http://www.hopkinschildrens.org/high-fat-ketogenic-diet-to-control-seizures-is-safe-over-long-term.aspx

Birthday Blues

Oliver's birthday was a little rough. He had an hour long cranky crying session after his morning nap. I'm not sure if he had a mild seizure that we didn't see/hear before the crying started. I am trying to figure out if these crying sessions are due to something like reflux or gas or teeth or if it's post -seizure stuff. Not really sure but I decided to just write down everytime it happens and if it's frequent enough, maybe we'll get an idea on his next EEG if he is having mild seizures that we don't see. I hope it's something fixable like reflux or teeth. He has had a bad cold and does not want to eat or drink this weekend so it's been rough. Yesterday he scared us a bit because he slept a lot and didn't get enough fluids. We did get him to take some pedialyte during the night and this morning but then found out we shouldn't give too much while on the diet so we're going to try and get water into him over the next few days. Hopefully he will start eating better soon.

He did love the pumpkin cheesecake I made him and he got some very lovely clothes. Hopefully his next birthday will be less sad and more fun!

We are going to try taking him to daycare a few days this week so they can start easing into the diet. Hopefully all will go well and they will make sure he gets his meals on time and eats and drinks enough. We have his 12 mth appt coming up on Thursday along with his 3 month check in with hematology. During the keto stay we found out his neutraphils were up over 2200 and he was not neutropenic. Hopefully that trend continues.

Tobin has been having a blast with his grandmas and his Papa and just got a nice new haircut to even out the big chunk he cut from his own head at school the other day. Basically just being a typical three year old and for that we are so grateful. Tonight we are going to try and get organized and plan some of Oliver's meals for the upcoming week and do a few things around the house that we didn't get done on Sunday.

Keto Kid

Oliver is officially a keto kid. He started the Ketogenic Diet on Monday. Within 3 days he was fully in ketosis and handled the initiation of the diet like a dream. He ate everything we fed him, drank all his bottles and didn't have any complications. We left the hospital last night and he promptly spiked a fever and then vomited up butter and cream all over Jason during evening meds. We got most of his medication in and then let him go to sleep and he seems to be feeling much better today.

The diet is interesting and I am already sick of butter and cream and I don't even have to eat the stuff. But if it works it will be amazing. We're going slowly and just using some very basic meals to start but we've been able to get through it without using the keto formula yet which is great since it's so expensive. We just have to make sure to work the supplements and vitamins into him and make sure he gets enough protein to grow!

We hear that we'll know within a few months if the diet is going to work for his seizures so we're hopeful. He had one last Friday and then an awful one this past Monday before going into the hospital. VERY intense and spasms were coming every 5 minutes for HOURS after the original cluster added. Thursday morning he had a very mild seizure with only about 5 spasms and a few minutes of shaking and then it was over. Whether it would have been like that without the diet, I'm not sure. But if the diet helped to reduce the intensity that quickly I'm amazed. I think we'll know within a month if we need to make diet adjustments and then we can talk about weaning his Clonazepam completely first and then getting rid of the Vigabatrin.

Birthday Boy

Oliver's first birthday is just two days away. A year ago I was impatiently waiting to meet the cute little person who had been living inside of me for over nine months, wondering what he or she would look like, hoping Tobin would adjust well to having a sibling, picturing myself strolling around the park with a baby in a sling watching Tobin climb up ladders and slide down slides. I kept telling myself that once the baby came we'd have some rough months adjusting and then as we approached the baby's first birthday things would just seem easier because kids become more mobile and more independent around their first birthday.

We didn't get to do too much frolicking in the park this past year. We spent a lot of time in the hospital wondering if we were going to lose our baby. We kept Oliver home and out of the intense heat most of the summer so as not to trigger seizures. We spent a lot of time feeling overwhelmed with Oliver's therapy, medication, and medical appointments. I spent most of my time at work wishing I could be at home and most of my time at home wishing I could be at work.

This past year has not gone at all like we planned. But my prediction that things would be easier at the one year mark was sort of right. Oliver is finally sleeping through the night (ish). He wakes up occasionally but just talks to himself and then goes back to sleep. So we're all getting more sleep and that's great. He isn't quite as independent as I'd hoped. My goal was for him to sit up with support and hold his head up. He can't really do either yet but I keep thinking that once we get this hypsarrthmia to go away he might have more of a chance. Or tone down some of his meds or something. Things are easier in that we're becoming better at handling the chaos of parenting a special needs child and another child that demands a lot of attention. The days seem like a lot of work and they fly by fast but it's manageable. So we've all come pretty far since Oliver was born and we are so happy to have our little cuddle bug in our lives. We hope that the 2nd year of his life comes with many improvements and general good health.