Author: Maggie

Reese amazes me constantly.

Every morning for the past 3 months when it’s time for her injection, she sees the needle and knowing what’s coming, holds her leg out for me.  She never cries.  She doesn’t even flinch.  As soon as it’s over, she says and signs “all done” and goes right back to playing.  Her bravery through everything these past few months has been awe inspiring.

Today was her last dose of ACTH.  We’ll never know exactly how large a role it played in Reese becoming seizure free.  We do know it played a large role in her adorable chubby cheeks.

I’m told that each vial was just shy of $50,000.  Reese went through 11 vials.

We are thankful for so many things these days… high on our list is good medical insurance and great doctors!

Having a child with epilepsy (or any life changing medical condition, I would imagine) can feel very isolating.  Although I know I’m not the only one living this way, sometimes it feels like it – living EEG to EEG, days on end in the hospital without any advance notice, at times having more doctors appointments planned than social outings, and turning into the helicopter parent I never wanted to be (so guilty!).

This weekend, our entire family participated in a local 5k to raise awareness (and money!) for epilepsy.  It was quite moving to be surrounded by other people who are affected by epilepsy.  Everyone was so positive despite this awful common thread we all share.  It is clear that epilepsy affects the whole family.

I have enjoyed meeting other people in the same boat.  People whose heart stop every time their child flinches.  People who now all too well what to do in the event of a seizure.  And even people who understand the thrill of measuring out exactly 20.00 grams of butter on the first try!

I have long considered starting a local support group, and this weekend has made it more apparent that it’s something I’d like to do.  It’s hard to stay positive 100% of the time.  Really hard.  Feeling a part of a community during a time like this is so, so important.

Stay tuned, I just might do it…

These past few months have been unreal.  Was December just a bad dream?  Even still, I hope I never forget it.  I hope I never stop fully appreciating the small moments.  They’re not guaranteed.

Reese has a tricycle and has enjoyed being pushed along on it.  Yesterday, she started pedaling.  I can’t help but think that before all of this, I would have assumed that this was a normal skill for a 2 year old and thought nothing of it.  And really, it is normal.  But when I see Reese happily pedaling along so proudly, it makes my heart happy.

On Monday, Reese had a routine 30 minute EEG and I was feeling pretty good about things.  And then Reese had a questionable twitch.  I had mixed feelings about it – I was glad that if it had to happen, it was caught on the EEG.  But I was very upset that it happened.

I kept reminding myself that regardless of what it was, being seizure free for nearly 2 months is nothing short of amazing.  Unfortunately, it seems my happiness is pretty well linked with Reese’s condition.  So I was pretty distracted for the couple days until our appointment with our neurologist.

Great news – it was just a twitch!  Reese’s EEG is still considered normal!!

While in the hospital in December, our neurologist described Reese’s EEG as “scary.”  Scary to a neurologist means VEERRRYYYY scary to the mother of that child.  Boy, oh, boy… we have come a LONG way in just a few short months!

We’ve been doing this for a relatively short amount of time, but I’m feeling like we’re really hitting our stride lately.  One thing that has helped us stay focused is how well Reese has responded.  It’s also been helpful that she’s been relatively compliant.  Sometimes she’s not thrilled about eating her butter and that can be rough.  She also sometimes gets hungry and so therefore, cranky.

We were shopping at the mall yesterday and she wasn’t having it.  She didn’t have her cream from breakfast, so I went into Starbucks and ordered myself a drink and since there was no line, I explained our keto situation to the barista.  I was wondering if there was an easy way to order such a small amount (1oz) of heavy cream – if that was even a thing.  It’s not, but the barista was very helpful – she said that I could order my drink and ask for heavy cream on the side and that it would probably be about an ounce.  It was excellent!  And free!  I always have my gram scale, so I measured 30 grams and Reese was quickly back to being a happy camper! 

Since the beginning of this, I have been determined to not let this get in our way of enjoying life.  And today was another reminder that life does go on while keto!

It’s been a busy week!  We started with an EEG, then finally had our second opinion with UCSF, and just had a follow up appointment with Dr C this morning.

The 30 minute outpatient EEGs aren’t my favorite.  I certainly like to know what’s going on with Reese’s brain, so they’re well worth it, but Reese is like me – she likes to get a healthy amount of sleep.  Keeping her up until 11pm and then waking her up at 4am is sort of rough on both of us.  Her EEG was fairly uneventful.  She got hooked up and immediately fell asleep (which is what they like).  She had a few slight hand or foot twitches that I wouldn’t think twice about if my son did it, but when Reese does, I always get a little nervous.  I was glad to have it on the EEG so we could see if they were anything noteworthy.

UCSF was another early morning.  During the drive there, Matt and I discussed how much different this doctors appointment would be than we anticipated when we asked for a second opinion all the way back in November.  At that time we were desperate for answers, hoping to find anything that would work, and possibly even interested in hearing about any relevant drug trials.  Now, I guess we just wanted to be assured that we were on the right track. 

At the appointment, we went over all of Reese’s history, the meds she was and is taking, and the improvement we’ve seen in the last month or so (both in terms of seizure control and her development).  The doctor was surprised that the ketogenic diet was working as fast as it did for Reese.  She was almost doubtful – she really hadn’t heard of it working that fast.  She said that usually they’re having to continually encourage parents to stick with the diet for at least 3 months to see possible results.  Our dietician has heard of it working that fast – she’s mentioned that she thought Reese is a super-responder.

The doctor at UCSF felt that if Reese hasn’t had developmental delays yet, she won’t start having them now while she’s seizure free, which was wonderful to hear.

We asked for a diagnosis since we still don’t really have one.  She felt it probably wasn’t infantile spasms, but was possibly Lennox Gastaut or Doose Syndrome, and if she had to guess, she was leaning towards Doose syndrome (mostly since Reese hasn’t had delays aside from her speech, even though Reese hasn’t had any atonic (drop) seizures which is a hallmark of Doose Syndrome).

The thing all of Reese’s neurologists can agree upon is that she’s a unique case and doesn’t fit nicely into any box.

She felt we could start tapering meds and by and large agreed with what Dr C was doing.  We have always had a lot of faith in Dr C, but this really just confirms that we’re in the right place and doing the right thing.  It was an encouraging appointment all around.

While in San Francisco, we went out for lunch on Pier 39 to celebrate and even went to play a couple of games at the arcade at the end of the pier.  It felt like our first normal day in a long, long time (although we were missing Nicholas!).

This morning, we had a follow up with Dr C.  He was very pleased to hear that Reese has gone over 1 month seizure free.  Reese has been doing regular bloodwork and last weeks came back with low potassium levels, which sometimes can happen on ACTH.  Also, her electrolyte levels were low.  Unfortunately, this didn’t surprise me at all – for the past week, she would wake up and be sort of shaky.  She’d drink a few small glasses of water and then be fine.  I found a carb free, sugar free, calorie free electrolyte drink and had just started giving it to her.  The day after the blood draw, the nurse called and requested we repeat the labs.  We did, and that night Dr C called (I maintain he doesn’t sleep!) and we added a potassium supplement since her levels were still low.  We went over that and discussed the continued taper of ACTH and then weaning from the Vigabatrin after that.

When we were in the hospital, Dr C was aggressive with meds and now that Reese is seizure free, he said he wanted to be conservative with tapering off meds.  I hate that Reese is on so many meds, but the thought of tapering off them makes me anxious.  I have gotten the taste of a seizure free life and I don’t want to lose it!  But I know that tapering off meds is in Reese’s best interest – we can’t leave her on 10 meds forever, even at the risk of having another seizure (if we learn that a medicine was more important than we thought, we could always add it back).  He felt that the meds helped, but that the ketogenic diet was doing the heavy lifting, and I agree.  I’m happy to go the conservative route on weaning from the meds.

We discussed how Reese’s speech was coming along and how her receptive language has improved as well.  During our visit, Reese high fived, waved at, and said thank you to Dr C.  He commented that she didn’t do that when he first saw her.  It’s true – she’s improved a lot in the past couple months since her brain has been given a chance to rest.  It’s so nice to have a doctor that sees Reese as a whole child and not only noticing her seizures.

But the absolute best part about the appointment: Dr C said that Reese’s EEG from 2 days ago had normalized.  Wait, what??  Like… normalized, normalized?  I still can’t believe it.

I am not much of a dancer, but I practically danced on out of the doctors office.

I’m well aware that this may not last, but that isn’t going to stop me from appreciating this moment. So today, we’re celebrating!!

Does that seem harsh?  I’ve cut back on carbs, but I do still eat some in front of Reese.  I don’t draw her attention to it, but I have chosen not to hide it.

When we’d eat at Chipotle, I used to share my burrito with Reese.  She would nicely say “bite, please?” and I would oblige.  Then I’d have a bite, she’d wait her turn, and then she’d say “bite, please?” and I’d give her a bite and so on until she was full.

The first time we went to Chipotle after Reese started the diet, I thought it was going to be tough.  She knew the routine and angelically said, “bite, please?”  This time, I said, “No, this is mommy’s food.  You have your food.”  And that was that.  She didn’t complain.  (This is why I think that somehow she knows she’s feeling better and that the diet has something to do with it.)

My son loves applesauce and Reese used to enjoy it as well.  While Reese gets her food, Nicholas gets applesauce sometimes.

People ask us if we’re planning on going keto as well, and the answer is no.

My husband and I feel that this is just one more way we’re treating Reese as normally as possible.  Many people have different dietary restrictions – for example, Matt is allergic to nuts.  She’s going to be constantly surrounded by foods that she can’t eat and will need to know how to handle it.  We can’t keep her in a bubble, nor would we want to.  

Children adapt.  We probably don’t give them enough credit.

The problem with starting the ketogenic diet on New Years Day is that the ketogenic diet is a really trendy diet for weight loss right now.  It’s practically everyone’s New Years resolution!  And since it’s become so trendy, things are being marketed as “keto” or “keto friendly” everywhere you look.  Often, they’re actually not very keto at all.

Everybody thinks they know what the ketogenic diet is.  Truth be told, I would occasionally make a dinner recipe that had keto in the title and think I knew about the ketogenic diet also.  Often, those recipes are low carb but not actually high fat and fairly high protein.  Outside of websites specifically for epilepsy, I have yet to come across a keto recipe that lists the ratio alongside the nutritional facts.  I’ve since learned that keto for weight loss is vastly different than keto for epilepsy.

I consider myself a pretty live-and-let-live person, so whatever diet a person wants to follow is fine by me.  The trouble I’ve found is that people have heard about keto for weight loss and therefore think they know what Reese can eat.

But even if a recipe were to be a 4:1 ratio, I couldn’t just haul off and give it to Reese.  It would need to be planned and accounted for. 

I love that people want to get involved and offer to make keto recipes for Reese.  To be fair, if this were happening to someone I knew, I’d probably be doing the same exact thing.  But unfortunately, I can’t accept their offer and it bums me out.  I’m just not comfortable with any variation from what I’ve planned.  For me, the downside of straying from the diet is too great.

One night Matt and I decided to have dinner at a casual burger restaurant in our area.  As I was packing Reese’s meal to take with us, I considered getting Reese a burger patty at the restaurant as part of her meal.  Maybe it was a moment of weakness.  Or laziness.  Or perhaps it was wishing for more normalcy.  But was the ground beef 80/20? 85/15? 90/10? Was anything mixed into it (maybe a filler, or vegetables)?  What type of fat was it cooked in?  There were too many variables and I started to get anxious about it.  I have rarely had these moments, but fortunately, Matt was there when I needed him to keep me on track.  He reminded me if I don’t want to do it, just don’t do it.  Pack something from home so that we know exactly what’s in it.  So that’s what we did and the evening was wonderful.

Reese was off to a wonderful start on her new diet.  The first few days, her seizures stopped.  It was very encouraging.  Actually, it was incredible.  The last day of the seizures, we added Vigabatrin, but since it seemed that we were already on the path to reduced seizures, we went off it after a week.  A few days later, she had 3 tonic seizures that lasted 30-45 seconds each.  After these breakthrough seizures, I emailed our doctor and our dietician.  Our doctor had us add back the Vigabatrin, but at half the dose.  Our dietician said that perhaps we should try the stricter version of keto.  We set up an appointment for a few days later.  A couple days after we added the Vigabatrin, she had 2 more seizures during nap time.  Coincidentally, the Epidiolex had finally been approved by insurance and we started it that day.

With the new 4:1 ratio, all of our meals are planned by our dietician.  While making the meal plan, our dietician asked what kinds of foods Reese ate before.  She was surprised how close a lot of the meals I had given Reese were to the 4:1 ratio.  Not bad for a rookie – I admit that I was quite pleased with myself. 

While both have (for Reese, at least) a maximum of 10 grams of carbs per day, on the 4:1 diet, the portions are smaller.  With the Modified Atkins Diet, proteins aren’t limited like they are with 4:1.  Cream (or another source of fat – cream has been our go-to) is offered and encouraged at each meal, but everything is a lot more relaxed.

Now, with 4:1, we measure everything down to the gram (or even hundredth of a gram).  Each meal is 4:1 on its own, and we use spatulas to get every last bite.  It’s hard when Reese asks for more food and we have to tell her no.  It’s not hard for me as much anymore, but I can tell it’s still hard on family members.  I can give Reese 1-2 snacks per day (we use KetoCal, a prescription only Pediasure-like drink, because Reese likes it and also because it’s 4:1 on its own so it’s easy).  But if she gets hungry not long before a meal time, I have found that I have to tell her no.  If she’s full going into a meal, she won’t eat all of her food, which isn’t okay.  She’ll just eat the small amount of carbs and maybe a little of the other food.  And then I have to basically force feed her, which just isn’t fun for anybody.

Since I’m a little OCD about things, when we were doing the MAD diet, I think we were closer to the 4:1 ratio anyway, so the switch hasn’t been very different for us so far, except that some of the quantities changed slightly.

The kids have been stuck indoors for over a month.  Among other medicines, Reese is currently on ACTH.  She’s been taking it since we were in the hospital and she has started to taper off of it.  It wipes out Reese’s immune system and, especially since we’re in the middle of flu season, Dr C recommend we stay home as much as possible to avoid germs.

But I noticed that we had a little break in our schedule from all of the doctors appointments and we desperately needed a change of scenery.  My parents were going up to their cabin in Tahoe, so we decided on a whim to join them for a few days.  Reese had been on the keto diet for just over 2 weeks, but we’re always up for a challenge!

To plan for this impromptu trip, being on quarantine helped things out – I knew all meals would be at home.  And the cabin was a familiar place so I knew what we’d have when we arrived, where nearby stores were, and what items they carried if we ran out of anything.  So I wasn’t overly anxious about being away from home, although this was our first time since starting the keto diet.

I packed Reese’s usual foods, our trusty gram scale, and all of Reese’s medicine (plus a few extra days worth of everything – you just never know!).

It had been snowing a lot in Tahoe and one day we decided just to go for a drive.  We headed up and around the lake towards Reno.  Without having a specific plan, I packed a lunch for Reese just in case.  Pepperoni is simple because it travels well and doesn’t need cutlery.  Reese had cheese, bell peppers, and heavy cream to go with it. 

I’m glad we packed a lunch, because we ended up finding a quiet diner and asked the hostess to seat us in the corner away from everyone else.  We ordered our food while Reese happily ate hers.  We had the sweetest waitress who saw the two kids trying their best to behave and brought them a side of french fries.  Such a kind gesture, but of course, not on the keto diet.  So as not to look unappreciative, my dad happily ate the fries.  Our first restaurant experience was completely fine – no complaints about bringing our own food for Reese.

 I had planned to leave on Thursday, but it was just so relaxing up in the mountains and our cars were snowed in.  So we decided to stay another day.  I knew bringing extra meds would be a wise idea.  Always be prepared, right?

Driving home was a breeze, and I had my ice chest with all of Reese’s foods, so I wasn’t too worried about getting stuck somewhere without food.  There is an In-N-Out on the drive home, and I confess I’ve become quite addicted.  I’ve been trying to eat lower carb, especially around Reese, so I’m on a serious Flying Dutchman kick.  I ordered a plain hamburger patty for Reese.  A burger patty from In-N-Out is the only fast food I trust for Reese for the time being.

Our trip to Tahoe – our first time away from home while on the ketogenic diet – was a success.  I was a little anxious about the travelling (if we got stuck somehow for an extended period, normal food options aren’t an option for Reese), our first time eating at a restaurant, and being away from the items and routine we were accustomed to at home. 

I know there will be bumps in the road on our journey, but we didn’t hit any this time.