Keto Diet Starts November 1st

We met with the Ketogenic Nutritionist this last Wednesday to discuss the diet specifics in more detail. Vanessa still recommends the Low Glycemic Index Treatment (LGIT) part of it, but it is definitely a lot more restrictive than I originally thought it would be. Raquel fortunately won't have to be admitted to the hospital for the supervised fasting in order to get the ketones in her optimal state. Instead, this will be done at home, and there is no true fast - we simply begin removing (A LOT) of certain foods from her diet and replacing them with new ones. I'll need to test her urine twice per day, weigh and measure food, monitor her weight, and keep very diligent records of everything.

The reason we aren't starting the diet before November 1st is because there are things that need to be put in place before then. For starters, I need to get food scales, measuring cups, books, urine testers, etc. I also need to take her back to the hospital for another full bloodwork panel, and Vanessa needs to discuss everything with Dr. Mower. The nutritionist and neurologist work side-by-side with this. I also need to get all of Raquel's medications in pill form. She can no longer take liquid meds of any kind due to the glucose content in them. I will need to purchase "keto friendly" toothpaste, soap, lotion, shampoo, conditioner, detergent, etc. I can honestly say that I pretty much thought I would leave the consultation with a list of foods she could and couldn't have, how much of what, and be done with it. So not the case. This is definitely a HUGE commitment. But, if she responds well to it and seizures decrease and medications can be removed, it will be well worth the effort.

And then we discussed some of her favorite food items that must be entirely removed: pasta, sweet potatoes, baked potatoes, corn, bananas, cantalope, kiwi, pineapple, and, gulp ... her beloved watermelon. And no fruit juices at all. Thankfully, she can still have milk, yogurt, cheese, beans, pears, grapes, and most vegetables. And, she can have pretty much all meats. She does like the tofu shirataki noodles so I can always make spaghetti for her with that. And there is something called "miracle noodles" that I'm told makes a really good macaroni-n-cheese. Basically any carbohydrate she consumes must have a glycemic index of less than 50. And I'm discovering that most of what she east is well above this.

Vanessa says that it typically takes about 3 weeks on the diet before before you are able to detect ketones in the blood and urine, which is why I will be testing her daily. Until Raquel reaches her state of ketosis, Vanessa will be sending me meal plans and snacks that she wants me to consistently use for this initial phase. Once in ketosis, we can begin adding more foods to the mix and we'll have a bit more flexibility. She will have 3 meals per day, including 2 snacks. These need to be given on a routine schedule with not much fluctuation in the times. She will also need to take vitamins and supplements to keep her healthy and strong.

There's a lot to learn, a lot to take in, and a lot to gear up for. My biggest concern is Mike. Raquel always wants to eat what her dad is eating, so a little nibble here and there from his sandwich or plate like he's used to giving her will no longer work when the food scale comes into play. I have to monitor every morsel she eats and drinks and not stray from that. One little piece can throw off her ketosis. This basically means I will need to meal plan, meal plan, meal plan - and have everything measured in its containers and once they are empty, she's done for that particular meal. And then make sure Gabby & Mike get the importance of that.

I will pretty much be dealing with Vanessa on a regular basis. I see her again in mid-December, which she is predicting will be about six weeks into the diet - and three weeks after she has reached ketosis. More blood work will be done for evaluation at this time. I have committed to try this diet for a 3 month initial period. We should be able to notice changes by this time. If she appears to be responding in a positive way, we will keep her on the diet for two years. After the two years, the diet is weaned slowly.

On then Banzel side, Raquel seems to be responding pretty well. No seizures since I started gearing up to Dr. Mower's requested doseage. That's only been a few days, but I'll take it. It does appear to throw her sleep off - if she naps at all, it's very brief, maybe 20 minutes. But I'll take that as well. And she's staying up a bit later than she usually does. Hopefully this is only an adjustment period. She also has developed a rash, which I'm told is okay for this med. As long as she doesn't end up for a week in ER, I'm happy with it at this point. :)

As far as her school goes, I have decided to keep her out and plan on doing so until after the first of the year. Now that this new diet is starting up, and the holidays are approaching, I feel it is in her best interest to stay out of school until we can tell how she responds. If she gets sick, ketosis can also be thrown off, so that is another concern I have with the school - not to mention her getting a cookie here and there, which would inevitably happen in her class.

I'm happy as I can be right now. And I plan on cooking all of Raquel's favorite foods this week. November 1st will be her very soon. We'll see where our journey takes us after that. But I'm thinking it's going to be onwards and upwards. Again, I have big hopes for my girl!

The Oak Tree

This was shared by another Mom going down a similar path as me, and many, many others. Thought it was worth posting.

The Oak Tree
by Johnny Ray Ryder Jr

A mighty wind blew night and day
It stole the oak tree's leaves away
Then snapped its boughs and pulled its bark
Until the oak was tired and stark

But still the oak tree held its ground
While other trees fell all around
The weary wind gave up and spoke
How can you still be standing, Oak?

The oak tree said, I know that you
Can break each branch of mine in two
Carry every leaf away
Shake my limbs and make me sway

But I have roots stretched in the Earth
Growing stronger since my birth
You'll never touch them, for you see
They are the deepest part of me

Until today, I wasn't sure
Of just how much I could endure
But now I've found, with thanks to you
I'm stronger than I ever knew

And Then There Is Banzel

It took over a week to get the medication since Dr. Mower added Banzel to Raquel's anti-convulsant schedule. After we spoke the last time I posted, he immediately called the prescription in. I was told by the pharmacy the next day that I was denied the medication, and it went back and forth, and back and forth between my health insurance company and Dr. Mower's office for about a week. My insurance wanted Dr. Mower to substitute Banzel with a less expensive medication. Remember, they start with the cheapest drug possible and then add more expensive, more appropriate drugs in the mix after unsuccessful trials of the cheap one are determined to be ineffective. Yes, just my opinion but I've been dealing with this nonsense for several years now. Dr. Mower said that if he wanted Raquel on a different medication, he would have prescribed that. Just more pharmaceutical/insurance drama. But Dr. Mower holds his own. My kind of doctor.

I got a letter in the mail yesterday from my health insurance that stated the reason for them denying Raquel the Banzel: "After an evaluation for medical necessity, your request for Banzel cannot be approved due to an inadequate trial of Lamotrigine (Lamictal)."

Really?? I thought 2+ weeks on Lamictal was pretty significant - especially considering she ended up in ER and at Children's Hospital for a week due to the life threatening allergic side effect called Stephen Johnson's Syndrome. I guess they had no problem paying the hospital bill and want to do it again. Where's the logic here?

Today, I picked up the Banzel and am hoping and praying she responds well to it. It's one of the newer, more expensive mediciations out there. I have a journal and am documenting everything - all behaviors, eating changes, mood changes, etc. She had her first dose this morning at 11am, and I did notice she got really tired about 30 minutes later, and her walking became very unstable. I'm sure there will be an adjustment period. She is still on her regular Keppra schedule, the Banzel is in addition to this, so it's typical for her to experience different side effects until her body adjusts. At this point, I'm just hoping for the best. She really is such a trooper.

Unfortunately, due to the increase in seizure activity, particularly happening at school, I've chosen to pull her out of kindergarten until she is more stable. I spoke with her teacher yesterday and, if all goes well Banzel wise, will try to start her back up in class this coming Monday, October 10th. I'll just have to see how the rest of the week goes. But I've got high hopes for my Rock Star. :)