Naomi November to now

Well in November we met with our dietitian and neurologist. Naomi was having about 30 seizures a day then. The dietitian had no recommendations and was pleased with Naomi's growth over the last year. The neurologist wants to try the drug Zonegran on her. She does not want to push the dosage because she feels Naomi is at risk of a sedative effect and that will not help her development. The neurologist wanted to talk to her nurses about how best to administer it to Naomi, since she's on the diet and I can't just go to the fridge and get a spoonful of jelly and mix the meds in that so it'll slide right down her throat. That's the only way I used to be able to get meds in her. Unless they could be crushed and mixed with water.

Well a few weeks went by and I never heard anything and one day the nurse that has taken over for Martin called.

Martin was a saint! He was everything you want in a nurse. He didn't keep you waiting. He's obsessive compulsive with his work. Not only that he'll help you work around the system if that's what it takes. When our Dr. didn't address the carnitine deficiency he told me to contact our metabolic/mitochondrial Dr. and they would get Naomi started on carnitine.

So back to the new girl. She called about some paper work, but then I asked about Zonegran and what was going on with that. She checked the Dr.'s notes from our visit and saw that it had been recommended so she was sending the Dr. a message. Then we never heard anything again. So finally Naomi got sick with that bad stomach bug in December. After the stomach bug she had some glorious days where she had very few seizures and she seemed to be on a streak. The Sunday before Christmas she only had 1 seizure all day long! So December 23 I talked to the nurse and said I'd like the prescription, but want to hold off giving it to Naomi. She was on a streak and I didn't want to tip the apple cart. She talked to the Dr. and got back to me on December 30. The Dr. was fine with holding off. Well, I told her things had changed and Naomi was going downhill and I wanted the prescription. I realized it was a holiday weekend and I was fine with waiting until Monday for a prescription. So Monday came and I contacted Naomi's dietitian and told her Naomi was going downhill and asked about getting a glucometer to see what was going on. She was fine with that and emailed the keto nurse who then emailed the new nurse to see if we could get a prescription for it. Well I never heard anything so Wednesday I just called our pediatrician and had her give me a prescription. I got a meter that tested glucose and ketones. Then I emailed the keto nurse and told her. She emailed me a reply that she'd notify the nurse, the Dr. was on vacation and she'd been waiting for her to get back for approval. Well let me tell you, if that was Martin he would have called and told me that the Dr. was on vacation and if I wanted it to go through our pediatrician. So then on Thursday I get a call from the nurse on my answering machine that she's not sure what is going on. She got a message about a meter, but no one on their end had ordered one. I'd have to go through my primary care physician and she hoped she wasn't getting the message wrong. That she hoped this wasn't about getting a prescription for urine ketone test strips. UGH! I was so aggravated. What I ended up doing was sending an email to someone I know that works near our neurology department and asked what was going on up there! I just wanted to know, should I be worried. What should I do. So the person I know talked to Martin and he said call, call, call. Be persistent and if I feel like messages aren't getting sent correctly to make and appointment and meet with the doctor face to face. Especially if the seizures get worse.

So Thursday morning I was a little pissy when the nurse called. Then she called me back Thursday night. The Dr. was stuck in the suburbs because of a snow storm but she wanted to review Naomi's chart and she'd give us an answer on Friday. The nurse said "I will call you Friday". Well Friday at 3 p.m. I hadn't heard anything. So I called up there and left a message to see what was going on. Finally at 5:10 my phone rang and it was a different nurse from our Dr.'s office and she said the Dr. had reviewed the chart and proceeded to ask where I want the Zonegran called in to. Then gave me a schedule for titration. Shewww! Glad that's over!

But in the mean time!!!! Our dietitian upped Naomi's calories to 1300 a day, which seems like a lot! So Friday night her last meal I gave her the higher calorie meal. Twenty five more calories than her previous meals. It's now Saturday morning and not long after waking at 6, Naomi had a drop seizure. Then we came down stairs and I checked her ketones, which were 3.2. They aim for her to be 4+ when she's on the diet. Her glucose was 72. It was actually higher than that when she was sick and her seizures weren't so bad so I'm not so worried about that. It's now after 8 a.m. and Naomi has hardly went more than 10 minutes with out having some sort of seizure. Myoclonics are what I"m seeing. It's like her ab muscles quit working and she just kind of goes forward then falls back. But, she's very chatty. Saying ball, playing ball, just really present. So we'll see how this goes! I really feel like she fell out of ketosis before right after she was sick. Her breath had that rancid smell they get when they first start the diet, before the ketones kick in. Then the more of her meals the ate the worse she got.

We'll see. Nothing I can do but wait. The pharmacy doesn't carry Zonegran 25 mg, so they have to order it. With the weekend it'll be Monday before they get the shipment. So that means it'll be Tuesday before I can even start it anyway.

When it's not so bad to have a Ketokid

It's not so bad to have a child on the ketogenic diet when...
you're in the drive thru at the bank and the teller sends out a bite size candy bar for the cute little girl

you go through a new coffee drive thru in town and they send out a sucker for each of your kids. Big brother loved that!!!

My favorite happened today... driving through Starbucks for a Pumpkin Spice Latte and they give you 2 good size samples of cranberry nut scones, and it's just you and the kid who can't eat a bite of it.

I must add, she's totally unaware of what she's missing. Were it Isaiah he'd unbuckle his seat belt, jump the seat and wrestle the scone out of my hand!

Naomi's diet is now at 4:1

We just raised Naomi's diet to a 4:1 ratio (that's 4 grams of fat for ever unit of protein + carb). Of course the same day her last molar seems to really be bothering her.
I thought she was going to bite the end off the Nuk brush at therapy today! She's already shredded one! They had never seen that done before! She's a little shark I tell ya! I don't see her tooth. I don't know if you can feel it or not. I'm not about to stick my finger in there to see either! She bit my finger so hard one day she dented my fingernail!
Tuesday she had a great day. Only 8 seizures all day. That was before the ratio change.
She's been sleeping a lot better lately too.
Funny thing. You know when kids teethe they usually get diarrhea? She's the opposite! She didn't go all day yesterday and if she doesn't go today I'll have to take action. I've already been giving her Cal Mag Zinc twice a day instead of once. Usually if I give her more than 7.5 ml a day she has runny poo. For two days now I've given her 2 doses and nothing!
I gave her a 4:1 ratio meal Tuesday night and Wednesday her urine ketones had dropped really low which is exactly the opposite of what I expected to happen!!! That stupid tooth is causing all this! I'll be so happy when it finally comes up! It started coming June 19! Almost a month ago! My birthday is a week from tomorrow. That's all I want for my birthday! Her tooth!

Keppra Wean

Well Naomi had her last Keppra dosage at 8 p.m. June 21 and so far so good.

She woke up Monday the 22 and had a pretty good sized cluster, before her dose was due, and I just thought "To heck with it!". It had been a week since I dropped her dosage and the Dr. had said every one to two weeks so I just took that out of the equation. If she's gonna cluster on or off the medication I'd rather be with out it.

Well she has been fighting teething for the last week. Her ketones dropped significantly for a full week with nothing done differently on our part. Then this morning they were back up again. So hopefully she's out of the woods with the teeth.

She's been having less than 20 myoclonic seizures in a day. Those are really light too. The other day Bill asked me how she was after her nap and I said "she had 4 but I really had to look for them". Another thing is they seem to be affecting mostly her legs. So it's just her feet turning in that tips me off she's had a seizure. Sometimes she doesn't move at all she just kind of rolls her eyes and you can hear it like it's contracted her diaphragm and pushed air out. Once in a while they'll make her fall. She just did that. She wasn't expecting it and her head dropped slightly and she stumbled backwards and couldn't catch her balance and fell on her bottom. But that's it. I can live with that.

So good days for a while now and we're feeling a little more comfortable and are going to leave Monday for a vacation. Don't tell Isaiah or I'll hear "when we going to Austin's" every 5 minutes until we pull out of the drive!

Change in Diet

Today Naomi got an increase in calories. She went from 1050 calories a day to 1150. That means each meal is 288 calories. The dietitian is willing to go to 1200 calories but I want to just adjust by 100 calories for now and I'll keep in mind that the other 50 is there if needed. She just feels so skinny! We're not used to that in our house. She's 37 1/2 inches and 32 pounds now.

Last Friday we started weaning her off Keppra. It's going good. We've seen absolutely no negative side effects from weaning her and it's been quite a few days now so I feel like if something big was going to happen it would have.

She was averaging 30 seizures a day and about once a week we'd see about 50. That was split between 2 clusters (after waking overnight and nap) and some random here and there seizures. A cluster would usually have about 15. Since dropping her to 300 mg. twice a day she's having about 15 all day. She has days where she doesn't have any cluster. The largest cluster I've seen all week is 5! Those are really light and you have to be holding her to know she's had most of the seizures. One morning the first 4 seizures I only felt because I had my hand under her bottom and could feel the muscles inside her thighs slightly tighten. There was no eye movement, no head drop just that little muscle tension, quick as a hiccup.

Today she's eating better after being sick for quite a while. Eating and drinking.

She had a stomach bug, thrush, green goop in one eye and to top it all of one of those darn 2 year molars is coming in too!!!! But the fact that she's teething and we've still seen no big cluster is awesome!

Here's my latest Keto-dreams! I dreamed Bill told me "she's eating good" and there she stood in a corner eating Reese's pieces. I yelled at him that she couldn't have that.

Then I dreamed I was feeding her birthday cake in the car while driving. When we got out of the car I looked at her and said "what's that red and blue all over your face? Oh SH*T it's frosting! I can't feed you that!!!!! "

I think I have some Anxiety issues!

Naomi and the diet

When Naomi first started the diet she was gaining weight like crazy! Ended up she also gained 3/4 in. So it all balanced out. I had her weighed every week for the first 4 months. After our last meeting with the Keto team the dietitian said she didn't need to be weighed so often anymore and we also didn't' have to check ketones daily. Well the ketone thing is hard to give up! You just kind of want to know what's going on! When I asked how often should I get her weight checked, the dietitian just kind of wobbled her head side to side like "well......" and never gave me a firm answer. I said "every other week? Once a month?" she wouldn't commit. So I had decided every other week would be good, then Naomi got sick and I thought to heck with it and haven't been to get her weighed in over a month. I'm the kind of person that would like a firm answer. If the dietitian had said every 3 weeks, I'd have been at the Dr's office firmly every 3 weeks!
Anyway, I took her to get her weight checked on Monday and she was 14.3 KG which is down from 14.8 KG last month. So she's lost a little more than 1/2 a pound,
Here's an email I sent the dietitian (this was before I'd had her weighed):

"I thought I'd give you a little update and ask some questions.
Naomi's seizures are still lighter and fewer. Her ketones have been staying high, mostly 80-160 even though she's had 2 colds in the last month.
Do we just ride it out and wait and see how she is in April? (haven't got that appt set up yet)
or at what point do we see if a raise in ratio or something helps or do we even do that.
Last appt with Tuxhorn she let me take Naomi's meds from 600mg 2X day to 500mg 2X and it's made no difference, maybe some improvement, but she never got worse or had a bad day.
We've had some days where she never had a cluster and maybe we only saw 15-20 myoclonic jerks all day so that's a great improvement!
She does seems to still have a day or every so often where it seems like her teeth are bothering her and she'll have a 20 minutes cluster. They are few and far between though. They are usually followed by a few days of more seizure activity.
I've only had her weight checked once since we were last there and it was about the same and I don't think she's gained any weight. With her being sick there were a few days she didn't eat all her meals but I tried to make sure she got all her cream and at least some carbs so she wouldn't get way to much ketosis. Everything stayed pretty steady though. She's getting where she's pretty satisfied with her meals and doesn't always want to finish all of them."

this is her reply

" I am looking into your appointment in April and will try to let you know tomorrow."
Does that answer any of my questions? Besides someone else makes the appts. I was just letting her know I didn't know when we'd be coming. I have already contacted the person who sets up the appts! The appt. books are closed because the Neuro is out until late April.
THIS is the most frustrating part of the diet! To see your daughter get sick, have higher ketone readings while sick and see a huge improvement in seizures during that time, then when she's better and extremely active, the seizures come back like before! To feel like she's having unnecessary seizures because things aren't being tweaked is so hard.
I've emailed the dietitian to let her know about the weight loss and the fact that if Naomi's very active her seizures are worse. If I could get her to sit around all day she'd be fine. Anyone know how to get a toddler to do that???? Without duct tape that is!
To be fair to the dietitian, she's the only one that does the diet. She is off on Wednesdays. On Thursdays she's at a different location but still working for the clinic. So that leaves Monday and Tuesday for her to get back to me and that's also the days they admit new patients to start the diet. So Fridays are the only day I see her having open. But at some point during the week she must also meet with other families who have come back to the clinic for follow up. There are 12 pediatric neurologist at the clinic and if even 1/2 of them put kids on the diet can you imagine what that patient load must be like for one woman?

The diet and calories

I think I've mentioned that Naomi has gained weight on the diet. Since October 27, 2008 she has went from 12.9 KG to 14.5 KG. She gained .3 KG just last week! (2.2 lbs = 1kg). So in all 1.5 KG has been gained (3.3 lbs!!!!!). This means, OBVIOUSLY, that her body is not burning the fat for energy but instead is storing it. I have weekly emailed the dietitian and at one point Naomi leveled off for 3 weekly weigh ins at 14.2 KG. But still! Plus the fact that her ketones have been low I've been thinking her calories needed lowered. I actually mentioned lowering her calories at the 6 week visit but we were changing her ratio and the dietitian seemed to think it best not to change too many things at once. I called 2 other times, once went unanswered and the other I talked to the dietitian who USED to do the diet because our dietitian was on vacation. But Friday the more I thought about it the more peeved I got! So I called and whoever answered said the dietitian was out of the office until Monday. So I left a message and was not very nice about it. I wasn't rude but I made it clear I wanted some direction! There must have been a mix up because our dietitian called me back in about 30 minutes and made the calorie change. SO now Naomi gets 950 calories in 4 meals. I fed her a lower calorie meal last night and this morning already her ketones were a little higher. So that's promising.
NOTE: OPPPS I just realized that I had written Oct 27, 2007! I was a year behind! I've been doing so well writing 2009 on everything!

How The Diet is going

Well we've been on the diet about 8 weeks now and Naomi is still not staying in Ketosis. Her ketones are very low in the morning and don't get up to the range we want them until around 3 p.m. They fall again before bedtime. I've been keeping the dietitian updated on how it's going but can't get any answers or instructions on what to do next. With the holidays and the fact that the dietitian is only at main campus 3 days a week, it's been a pain to get answers. I emailed her this morning and she emailed me right back but I've never gotten an answer as what to do next! Do I just wait it out? Does something need to be changed? It's very aggravating. Naomi gained over 2 pounds since the start of the diet. They aren't supposed to gain ANY weight. So something needs fixed!
Her seizures have been cut in 1/2 since we met with the dietitian Dec 5th and changed her to a 3.5:1 ratio (3.5g fat to 1g carbs+protein). She's still having clusters when she wakes and then one here and there. We call the one's here and there her "stragglers". They're usually very mild and she just falls to her bottom, they're over in less than a second.
It's just aggravating to have been on the diet 2 months now and she's still not staying in ketosis! Hopefully we'll get some answers soon!

Tools of the Trade

Say over 4 days Naomi is going to have #11 four times. I get a stack of these 4 oz cups write #11 16 grams of applesauce on 4 of them. I also check to see if any of her other meals have applesauce so I can measure them all up at once. Then I make a big stack of cups that need applesauce and each of them is already labeled with what they need so I can do 4 days of applesauce in no time. I do that with all the remaining ingredients of the meals. Usually I label all the cups first according to meal number, then separate them according to what goes in them, chicken, hot dog, cheese, 1o % fruit, Group B Veg. etc....






I also do her cream in batches. I make up a weeks worth of stickers for her sippy cups writing what number meal and what goes in the cup. Then I do about 6 cups at a time.






Here's some cute little silicone scrapers, a whisk that fits right into her cups perfectly and an egg separator I found. Aren't they adorable!!!!! Plus the scrapers fit right into the 4oz cups then right into Naomi's mouth so she gets every last bite! I put my regular size scraper and whisk along side so you can tell how small they are.



And here's what it all looks like tucked away on the Keto-shelf of the fridge.
I'm not very well stocked here! Only 2 meals. All the 16 grams are for #11 which she eats for her 1st and usually last meal of the day. I usually have way more whipping cream stocked up too! I was just at Walmart yesterday and I don't think I grabbed any! That's unusual!

Planning Naomi's meals

I've been working on this for a while! I got started then decided I needed to compact it a little! There's a lot to fit in! Fawn did a good job of showing how she weighs out her daughter's meals and what they look like. I've been trying to decide how to show how I plan and get together Naomi's meals. First of all I print out a weekly calendar.

Naomi's meals on Ketocalc are numbered so I simply write #11, #18, #13 or what ever. Maybe with a note to remind myself exactly what #18 is! #18-Eggnog.

Then I got the idea of printing out the meals on an index card from another Keto-mom but that was long before we even started the diet and I forget exactly who it was! I'm pretty sure it was Stephanie Precourt though! I printed them out and then bought some of these nifty magnetic photo holder's and put the index cards in there. I keep them all on the left side of the fridge then move over the day's menu to the right side then move them back as I've fed her those meals.

Right now (subject to change at any moment! Especially since I've just recently gotten all new cards made up!!!) Naomi's on a 3.5:1 ratio and gets 1050 calories a day split evenly into 4 meals. So she eats every 4 hours. Usually 6 a.m., 10 a.m., 2 p.m. and again at 6 p.m. She is not on fluid restriction. She guzzles down Free America carbonated flavored water from Walmart! Usually at least a whole 34 oz bottle a day plus her cream 4 times a day which I've been adding water to so she ends up with at least 64 oz. daily. She'd probably drink more if I let her and the skin on her feet is still dry as a bone!

Enough for now, next tools of the trade!

6 week check up

As of Monday Naomi will have been on the diet for 6 weeks. We've been checking her urine ketones and they've been low but weren't sure if the blood work would match up. It did. Her ketones were only 2.?? when we had blood drawn on Wednesday. Also she was a bit dry, HUH? She gets 4 meals a day, she drinks 7 oz. with each meal. Then she sucks down a 34 oz bottle of Free America carbonated water from Walmart, everyday. Still she acts thirsty! I doubt kidney stones will be a problem!
We were at the Dr's for almost 2 hours and I changed her diaper 3 times. Then she soaked her diaper on the way home! (She soaked through at the hospital too, while her Daddy was holding her! teee heee hee).
We had to meet first with the dietitian and then the neurologist. The Dr was an hour late and something must have gotten messed up because she thought we were early! Usually she's right on time, so I'll give her a break.
We go back in 6 weeks, we'll have to meet with 2 neurologists then, plus the dietitian.
We better pack pillows and sleeping bags!

Better Day

After a terrible day, blechhhh, blechhhh, let me get the bitter taste of yesterday out of my mouth!!!! Yesterday was terrible, she had a series of 3 clusters that started off light and not scary, to a when will this end, I'm about to give emergency meds seizure. Today she had blood work in the morning and fell asleep on the way home and woke up fine. So that kind of held her nap off. I tried to get her to lay down about 2 but she wouldn't have it. It was almost time to eat again. So I went ahead got her up and fed her then let her be happy and expel some energy for a while. Then checked her ketones just to see where they were, about 40. Then I put her, an myself, down for a nap. Hoping that since her ketones were higher at this time of day than they would have been if she'd have napped at 1, as usual, that she'd wake up with less seizures. I also gave her acetaminophen for extra ooomph. She slept from 3-4:30. Woke up.......... JUST FINE! Nothing, NADA! First time in?????????? So let me celebrate this good day, who knows what tomorrow brings.
But it does make me upset that her ketones aren't up all the time and that her diet needs to be tweaked. It shows me that all this added seizure activity could possibly be stopped if her ketones would level out.
Meet with Ketoteam on Friday, wish her luck!

Naomi

Well, she's been good, she's been bad. It's been strange.
One day she has a good day (none seizure free yet). The next day she might have a terrible day. Her mornings have been better but then it's nap time and she wakes up and has terrible clusters that sometimes go 20 minutes and I'm about to grab the Diastat when they stop. The big clusters she usually falls asleep again afterwards and then wakes up fine, no more seizures.
Today she had a great morning. She was laughing, loving and just being silly. She even took a 1/2 hour nap in the morning since she did get up at 5! she woke up and was just fine. Then about noon she got really tired and just looked awful so I took her upstairs and laid down too. I was sleepy also! She slept about 2 hours and woke up and for 4 minutes her seizures were light then for 6 minutes they started to really jerk her then at the 10 minute mark they got really light and were mostly as strong as a hiccup for 5 minutes but they tired her out too. So all in all they lasted 15 minutes.She laid back down beside me for about 20 minutes. Since she's been awake she's so calm it's eerie. Bill keeps feeling her head to make sure she doesn't have a fever. She is acting like she was when we were at the hospital. She's sitting in her bean bag chair watching t.v. We put a musical in and she's rocking back and forth to Thomas' Trackside Tunes. She's very quiet too. Maybe her ketones are finally going to kick up. I hope so.
I messed up and gave her 62 grams of cream with her meal instead of 49 grams. It'll just mean a higher ratio but she got an extra 40 calories. Oh well, accidents happen. I had 2 cups of cream made up, labeled and everything and just happened to grab the wrong one and didn't even notice!

Support Group

I recently signed up for the Yahoo Ketogenic support group and what a wealth of information!! It's so nice to know there's others out there struggling with the same issues, ketones, meds etc..
There's also files that tell about different things you need to know while on the diet. Lots of support from people who have already been where we're at.
So glad I went over there and signed up.

That's why!!

I have checked her ketones religiously the last week. They just would not stay up! Of course she drinks like a fish so her urine ketones have to be weak! The child can chug 12 oz. in a blink of an eye. I called the Ketoteam last week and left messages and emails, aggravated that everything was off. Then this morning she woke up with a runny nose! She's probably been getting sick all week and her ketones would be lower. So I guess we can just scrap this week!Maybe even the last 2 weeks! We've got several things working against us starting this diet. The first was the constipation. Did I mention I think the Blue #2 dye in the Keppra is making her stool (a.k.a poopy) sage green!? With that and the chunks of carrots, her diapers look like she ate a Christmas ornament! :)
Then there was the time change. We fell back an hour meaning she got up at 5 a.m. until 2 days ago! It didn't however seem to affect her bedtime. She still wanted to go to bed between 8 and 9 p.m.
The next is cold and flu season. I didn't get her flu shot because our pediatrician office didn't get their vaccine's in until the week we were in the hospital. When we came home form the hospital her brother had a very bad cold and we were making him constantly wash his hands, use hand sanitizer and we wiped antibacterial wipes over everything he touched. Still here we are 2 1/2 weeks into the diet and she's got a cough and cold. Though she's not coughing too bad yet. I bought some Vic's to rub on her tonight. Hopefully it'll be easier on her than it was on her brother! I ended up getting him on antibiotics. The Dr. said a lot of walking pneumonia going around. The therapist said they've got a lot of kids out with strep and vomiting. It's so early for all this to be starting!
Of course the temperature has dropped significantly here today and it's been snowing all day. The ground is still too cold for it to stick but BRRRRRRRR it's cold and just slapping you in the face when your outside. Naomi LOVES it when the wind and snow blow in her face she laughs so hard she starts squealing! She is nuts! Isaiah loves the snow too, he loves playing in it. You'd think he was playing in sand at the beach. He'll stay out there hours! I like to look at it but I get tired of it really fast. I'd rather look at snow than the brown grass and mud though!

Tweaking

Naomi started out on a 3:1 ratio, 950 calories and 3 meals a day.
We added 100 calorie snack for bedtime to try to keep her ketones from vanishing over night.
Now I've talked to the dietitian and we've decided to bump her up to a 3.25:1 ratio and give her 1050 calories a day in 4 meals.
Naomi wakes up at 6 and goes to bed around 8 or 9 p.m. That's a long day (she does nap) so I think we'll try feeding her at 7 a.m., 11 a.m., 4 p.m. and 8 p.m. Or something along those lines.
Hopefully that and the extra fat will keep her fueled throughout the day and night.
Her ketones are 0-5 in the morning! They creep up to about 15 by 10:30 then in the afternoon about 3 or so they're up to 80 but then they sometimes sink back down!
It's so frustrating because I know the ketosticks don't accurately show what her blood levels are. You'd really think there'd be a better way!
I just really want to make sure she has the best go at the diet. I don't want to put her through all this for nothing and most of all I don't want to have to put her on Dilantin! It scares me! After our first visit with our current neurologist they had given me a list of all the drugs used for seizures and I looked them all up. Beside Dilantin I wrote "NO WAY"! God help us if we get to that!!!

2 week labs

I took Naomi for blood and urine tests yesterday, her urine ketones were at 0. Her BHB which I believe is her blood ketones was at 3.34, they were 3.67 when we left the hospital. I believe also they should be at 4+. I'm waiting on an email from the RN to explain further.
What I'm worried about is her blood glucose was only at 66, which I think is rather low. I'm wondering if that isn't contributing to her seizures. Any stress seems to trigger her seizures, why not low blood sugar? It adds to my "not getting enough to eat" theory. She's an active little girl, I think she's burning through the fat she gets!
Also I've of course already Googled "low blood sugar and seizures" and there seems to be a connection.
She's definitely drinking enough! Her specific gravity was 1.002 (water is 1.000). She's definitely a good drinker!

Diet

Well Saturday was awesome, then Sunday sucked! Naomi had 75 seizures in about 15 minutes on Sunday morning and some of them really "grabbed" her and her head dropped quick and her stomach tightened up. Her Ketones were low in the morning so at lunch I didn't give her any carbs and by 2 her ketones were high, but that doesn't do us much good when the biggest part of her seizures happen when she first wakes up. At bedtime her ketones were back down to moderate and this morning they were just at 15 which is trace. They should be 80-160, high.
I took her for her weekly weigh in at the Dr's today and she weighed 13.2 KG which is about .3 KG more than last week. Her diaper was wet and I'm about to get out the scale and weigh her wet diaper to see if it weighs near .3 kg! I can't imagine them taking calories away! She was only getting 950 a day then they did add a 100 calorie "snack" at night. ARGGGGGGGH! When you figure 85% of her diet is fat that means in a 1000 calorie diet only 150 calories are from real food! It's frustrating! Trying to keep the ketones up is hard and frustrating when you're doing everything you're supposed to and they still drop! This week I am going to stay away from hot dog and salami meals and basically just stuff her with chicken breast at 2 meals a day and see if that helps. I also am going in to her diet plans and putting in exact types of vegetables, fruits and meats. No more generic 10% fruit or Group B vegetable or lean meat. I want to know exactly what the ratio is for the exact food I'm giving her!
Hopefully we'll get answers, blood work comes Wednesday and I'm anxious to see what her medicine levels are. She used to take Keppra in the liquid form and now I have to crush pills for her. I feel like there's a difference that may be linked to the meds, even though there shouldn't be, it's the same med, just different form.
She's never had such fits of rage where you just can not do anything for her! She gets mad if I go into the kitchen and come out empty handed and will throw her head side to side fall on the floor and sometimes even get on her knees and bite the carpet and pull it up until it snaps back down! We've gotten to the point we just put her down and let her get it out of her system. Then at the end of the fit usually comes a small seizure or two. So it's a loose loose situation. She gets mad or hungry and pitches a fit then she has a seizure! If we try to hold her she either slams her head into us or bites us. Last week one day she bit my wrist so hard I sat her down and went upstairs. I thought "if my dog bit me as often as my child I'd have sent the dog off to the humane society a long time ago!" isn't that awful! I just had to get a break from her! I have 2 bites on my arms and one on my shoulder, it hurts. The wrist hurt so bad I didn't even want to move it.

Chocolate butter sucker, Keto style

I made a snack for Naomi that the dietitian gave me the "recipe" for. It's simply softened butter and Hershey's baking cocoa mixed together and you can add liquid sweetener and a few drops of vanilla extract. It should be good. I wanted it to be good. Chocolate and butter? YUMMMMMY! WRONG! I tried it before I made one up for Naomi and it was vile. Maybe it was because it was unsalted butter? The after taste stayed on my tongue so long it was unbelievable! I think we'll stick to Jello!
On a good note the Cal Mag Zinc has in fact made quite an impact on Naomi's constipation. The nurse warned me there could be some loose stool, we haven't gotten that yet, but I need to call and see if the funky sage green color is a side effect! What a surprise her Daddy got when he changed that diaper! At least it's not fishy like the lovely Carnitor diapers. They could peel the paint off your walls! Think all this talk about her poop will embarass her one day?! She is a girl. Her brother would probably proudly post his bathroom habits! Boys!
Also today was a great seizure day. Even though her ketones were only trace this morning she only had 4 tiny little seizures and they weren't even together. Her ketones were higher towards noon and she took a nap and woke up and had no seizures. I think the ketones being so low in her urine is mostly because she's such a good drinker. She'll have blood test on Wednesday and we'll see what the ketones in her blood read.

GONE AGAIN!

Last night Naomi's ketones were as high as they could get on the test strip. This morning they were down around 40 so I though I'd check them through out the day to see if they rise. They didn't rise! They vanished! I just checked her ketones at 9am and there's nothing! She had her cheese and strawberries with fruit this morning, same thing she ate at the hospital, and the ketones are gone. I emailed the dietitian, I'll keep an eye on her levels and see how it goes. Gone through my fridge and made sure everything is as it's supposed to be! I think the culprit is the strawberries she had for breakfast. I'm supposed to giver her a certain number of grams of 10% fruit and that includes strawberries, but when I put the strawberries into ketocalc it throws everything off! So I'm changing it to Mott's unsweetened applesauce!
I may have to hold her veggies and fruits for a meal or two. I hate that, she gets so little food already!
Also yesterday after her nap around 1pm she had 108 seizures in 18 minutes. They started when we were coming downstairs. I could just barely feel her thighs tighten up. They progressed into her whole trunk muscles spasming. Some times her arms will go up slightly at the elbow, her head drops, quickly, you've got to watch or it'll just slam into you. Usually her seizures start with less intensity so we can pick her up before she has one that might make her fall to her bottom. She's never had a whole body, loss of muscle tone drop though. That would be scary. The kids with those seem to have them completely unexpected.