Tweaking Keto for Katie

[Dutch mom]

Wow Kristi, what a terrible mothers day you've had. I'm glad the Mothers text cheers you up a bit.
Poor Katie. I remember those vomiting periods and even on two occasions acidoses in our first two months on the diet. Keep going, it will change! Her body is having a hard time changing and burning all those fats. But stability comes after a few months.

Perhaps you should try to lower the ratio a bit to 3,7:1 or 3,5 :1 by adding a bit of apple sauce or juice to her usual meals (you can calculate it in easy on a lower ratio.)

During these periods of vomiting, the fasting causes her excessive ketosis. Try to give her smaller meals, just take 1/3 or 1/2 of all ingredients so the ratio will be correct and the calories less.

Do you give her 10-20 cc orange or apple juice (or coke with sugar) to bring the excessive ketosis down? You can do so every 4 hours, when needed during the night too.

I saw you are new member on the Matthews Friends forum. Great resource for these kind of problems and for questions about how to finetune the diet and how to tweak the ratio. Check out the trooble shooting guide at the homepage.

Take care and keep on going, it's worth all efforts when it works!

 

[katie's mom]

Thanks for the support! I probably need to go ahead and post an update on Katie in the nursery. I've been waiting about 1 week for things to stabilize before posting but we still have a little ways to go, so I'll just go ahead and post a "tweaking" thread. Basically, Katie's start on the Diet has made Matthew's story look like smooth sailing. Hopefully, we will be out of the woods soon, though. We're still 100% committed because our little girl has been back for the first time in months - sick stomach aside!!

It was just my luck to have a bad Mother's Day. The holidays have all been amazingly unlucky this year - Katie took a downturn on Easter that sent me into the Padded Room and Valentine's Day was completely consumed by a 5-day hospital stay for non-convulsive status. Maybe we'll have a better summer...

 

[katie's mom]

1st major tweaking focus: Stop the stomach trouble

Okay, so it's been 2 1/2 weeks into Keto and it's been rocky to say the least food-wise. Katie has been vomiting every few days since initiating and is not getting all of her daily meals as a result. Her dietician thinks she is excessively ketotic since her Ketones are at the highest level possible - even now, when we've lowered the ratio (per her advice) to 2.5:1 and have even cut that back to 75% cream and 25% whole milk. She hasn't vomited since Sunday and seemed to be slowly getting more energy this evening so maybe things are on the mend with the lowered ratio, etc. Also, the dietician is still looking at her labs & trying to talk to her neuro about what to adjust based on the results. Dh Greg is in PA school and having a chance to look at some of them (not all results are in yet) he noticed her free carnitine was a little low. Supplementing may be in order...

Anyway I'll keep you posted.

Thanks, too, to Ann for your time & advice; we have purchased the mayo & ordered the Stevia. Dutchmom, I didn't know we could give juice every 4 hours I was afraid to give it much more than once a day - thanks for the info - will put it to use!!

With the vomiting & meal tolerance issues still looming I just don't feel comfortable giving my victory speech yet but we do have MIRACULOUS news: after starting the diet in non-convulsive status, Katie has been seizure-free since last Wednesday!! God is so good!! We will definitely have a powerful testimony to offer, but I'm still a little gun shy until the tweaking gets straightened out a little more.

Hugs to all of you for your good advice & support!!

Kristi

 

[rackelsmom]

I'm so happy to hear that she is tolerating the meals a little better. No vomiting since Sunday sounds great and no sz's in a week is fantastic! Been praying for you Katie a lot, Rachel has too, she loves to pray for her "food friends". Keep up the good work!

 

[katie's mom]

Thanks, Ann!

We do have 1 problem, though: Breakthrough seizures!!

Today, she woke up with several myoclonics and a wet bed, indicating that she had been seizing overnight as well. We gave her a prn Klonopin (1st time in over a week) which has helped the seizures but she is still completely out of it cognitiviely like she was before the diet! My husband is now afraid that the diet isn't going to work for her! I told him not to get discouraged yet but I don't understand what's going on!

Any advice would be greatly appreciated!

 

[rackelsmom]

How are her ketones? Is she getting sick? Don't worry about breakthrough in the beginning. It will take some time for the diet to be adjusted to it's optimal effectiveness.
It could be that she is coming down with an illness, that can bring on breakthrough sz's. Whatever you do, don't give up! I know it's rough in the beginning but hold on. Better days will come. If you need to talk, you have my number. Perhaps you could give me a ring and we could go over the things Katie is using and see if there are any things that may have slipped through the cracks that aren't keto approved. Also, pm me your email and I'll send you something I scanned in from Hopkins.

Praying for you!

Ann

 

[katie's mom]

Thanks, Ann - I just PM'd you!

The dietician has called Greg & bolstered his spirits. She's made some temporary adjustments & we're hoping to get the carnitine today (all these pharmacies don't have it, but Greg thinks he has found one that does). Will keep you posted! What a rollercoaster!

 

[skillefer]

Just remember...diets are a process. Nothing's overnight or immediate. You have to remember that stuff gets stored in the organs, and it's going to take time for all the stuff to get out of her system.

 

[rackelsmom]

just remember...diets are a process. Nothing's overnight or immediate. You have to remember that stuff gets stored in the organs, and it's going to take time for all the stuff to get out of her system.

amen to that!

 

[Dutch mom]

Hi Kristi,

I do understand your husband's fear so well, it has been my greatest fear for 5 years and it still is. Katie's ketones are adequate I presume?

My son does have occasional breakthrough seizures too. Occasional, nothing compared to his continuous disturbed brain and his daily overload of seizures before he started the diet.
Most times sudden seizures are followed by some kind of illness a few days later. A flu, a simple cold, obstipation, digestive problems, teething and other illnesses can cause breakthough seizures despite adequate ketosis.
In allmost 5 years of ketogenic diet we've had long seizure free periods and shorter as well as longer periods with breakthrough seizures, sometimes real bad ones with many grand mal seizures. Sometimes these periods were associated with inadequate ketosis, sometimes they were unexplained. We've been at a point last year when we thought the diet had lost it's effect. But finally we regained stability by finetuning on calories.

Only a small % of all keto kids is 100% seizure free thanks to the diet. Most ketokids have significant seizure reduction (my son has about 90% less seizures), many of them do have long seizure free periods and occasionally breakthrough seizures. Of cause we all do hope for and work hard to get the best possible seizure control. But after all these years I'm aware this won't be a 100% for my kid. Even lowering the ratio causes him to have seizures again and loss of ketosis, so weaning him of the diet is not an option.

I do hope this will be an incident with Katie. But even when more seizures follow: remember these periods do happen to many keto kids and this doesn't mean the diet doesn't work anymore.

Carnitine suppletion helps to burn all the fats and to remain deep enough ketosis. Carnitine helps against lethargy and being tired, which is a common side effect in the first months because burning all those fats is unusual for the body and costs a lot of energy. My son gets carnitine since the first week he started on the diet. On the MF homepage you can read the Carrie Louhgran's files on carnitine and the diet.
http://site.matthewsfriends.org/index.php?page=carrie-loughran-dietician

 

[katie's mom]

Okay folks we've got some more discouraging news: we're making some more changes - adding MCT oil, possibly going back to 3:1 Katie's in pre-diet mode again with her seizures today. Our dietician thinks we are approaching the point of failing the diet.

 

[Dutch mom]

I'n curious Kristy, why are you adding MCT oil? What's the purpose of this change? Are her ketone levels to low, causing breakthrough seizures? If yes, adding MCT is a logical step. But if not, this doesn't seem a rational step to me. MCT does cause nausea, vomiting and (severe) diarrhea in many children. We've been there...

Last year, we've done a period of MCT-LCT combination, as an attempt to get his ketosis higher when it was structural too low. 'We've used liquigen as well as MCT oil. It was a big failure, his ketosis went even more down and we seemed to loose all control on his seizures. So we went back to the classical LCT diet at ratio 4:1 and less calories and finaly got back stability.

How long are you doing the diet now? And are these the first serious breakthrough seizures? Seems very early to me to conclude that the diet doesn't work anymore. Dietists tend to give up earlier than parents. Most times, parents prove to be right! We've had longer bad periods but untill now we've always regained stabilty by finetuning the diet again and again.

 

[katie's mom]

Thanks, Dutchmom! I think that I was wrong - we are changing to coconut oil. I was wondering if it may be worthwhile to see if John Hopkins will take us - Ann might be able to speak to that better.

 

[katie's mom]

THIS EXPLAINS IT: After running a 104F temperature, Katie's just tested positive for a bacterial infection. We've given her antibiotics & hope this will get the sz's under control. Thanks for your tireless encouragement & support. This has been quite the rollercoaster...

 

[Dutch mom]

Good! Now you know the double feeling I always have and I guess each keto parent has: "Thank God he's just ill", which explains his breakthrough seizures. And when he's not ill anymore and seizure control returns: "Yes, he diet still works!"

p.s. Be careful with meds, check out the AB for carbs, calories and wrong sweetners. Many AB, especially liquid ones and pills for kids, are NOT keto proof! Wrong AB could bring Katie more trouble.

 

[katie's mom]

Here's another brief update on Katie: she's still been having seizures since May 13th & her last vomiting episode was this past Friday. However, she has been doing much better with her meals & is also making some progress with taking her meds. We are in the process of raising the ratio back up to 3:1 to try to regain the seizure control that we had for 8 miraculous days!! Still no observed trends/triggers for seizures or vomitting, but we are still trying!!

 

[RobinN]

Have you done anything to put the good bacteria into the intestinal tract after killing them with the antibiotics?

 

[rackelsmom]

Kristi,

You and Katie are in my prayers and I'm hoping that soon things will settle in for you! Stay strong, summer is almost here!

Ann

 

[katie's mom]

Thanks, Ann & Robin! My last day of teaching is June 1st so I'm excited about all the time I'll have for Katie!! I'll keep you posted!!

Kristi

 

[Kayleesmom]

Hey Kristi,
Hope Katie feels better soon. Robin mentioned putting the good bacteria back in her system. We've had to do this with Kaylee. My doctor said to give her yogurt. There are also some powder versions you can add to any food. I can't remember the name of them right now, but I'm sure a pharmacy could tell you what they are. We'll be praying for you.
Leslie