MAD

After reading back through this, I realized it's long and might be boring to many of you...so, I plugged in some pictures (some have nothing to do with the post) here and there to break up the monotony!!

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You are each so precious to us. It is so humbling to go a few days without posting anything on my health and have so many of you so concerned. I feel like praying for Connor should be the focus right now. So, I have held off on posting anything about me. However, I want to thank you all for your sweet love and concern. I will try to give a good update.

B, Connor's Mommy, Connor, Me

I "officially" started the diet March 22nd. I had some seizures for a few days following that. However, I then went eight days without any (Praise the Lord!!!!)...April 4th, they started back up pretty intensely. I went a few days where I couldn't accomplish much because I was having so many and each one wears me out more and more. I think we've mentioned it on here before, but while I was in the hospital last year they said that each seizure puts the strain on my heart equivalent to that of running a marathon. So, eight seizures/marathons a day can become pretty intense and draining. There should be some kind of award for running a marathon in two to three minutes (that's about how long each seizure lasts), right?

The diet for kiddos with seizures is called the Ketogenic Diet. In adults and some kiddos, there is a newer version called the Modified Atkins Diet (MAD). It has very little to do with Atkins, but that is the name. The doctor allowed me to have 10 carbs each day. So, each meal is 3 carbs, one snack that is 1 carb. I basically stopped eating at this point because I couldn't come up with meals that fit that criteria. So, the doc allowed me to increase to 15 carbs/day. Therefore, 5 at each meal and my snacks have to have zero carbs.

My snuggle bugs!!

The point of the diet is for your body to stop burning glucose for energy and start burning Ketones (which comes from fat consumption, rather than the carbs). This is how seizures were originally treated. Then, meds came along and it was much easier to pop a pill so the diet lost popularity. However, there are so many patients that don't respond to the meds. So, a parent was doing research a few years ago and stumbled upon this diet and now Johns Hopkins is doing research on this diet and implementing it in many patients' treatment regimen.

www.atkinsforseizures.com is a great site with lots of info about the diet.

Here's the cool part:
*they are finding that in many cases, patients respond better to the diet than to medicine.
*if you are on meds, you have to take them for the rest of your life to keep your seizures under control. However, they are finding that somehow this diet is like a reset button for the brain and can even produce healing of the brain.
*most patients are able to start titrating off their meds. Then, once they are off their meds, they can start to titrate off of the diet!!! We have heard that anywhere from 6 mos. to two years is the time frame to look at for this treatment.

Here's the not so cool part:
*the FDA allows companies to round down when they are doing nutritional labeling. So, if a company picks a small enough serving size, they can round down and say there are zero carbs in their product. However, when you read the ingredients and it clearly states sugar....um, that would have carbs. So, the trip to the grocery store takes much longer as we have to read every label. Then, if it is an item we need, we have to research the exact # of carbs for the serving size we are using to make sure I don't go over and cause an insulin spike.
*Splenda, Sweet n' Low, and any other sugar alcohols are considered to be seizure triggers and are not supposed to be consumed while on this diet(some patients can consume Splenda, but most struggle with it). Most of the world goes low carb by consuming things with sugar alcohols or Splenda. Not a choice for me right now. Thus, making it even harder to find low carb options.

Another necessary evil during this diet is testing Ketone levels. I have to buy these little strips at CVS and test my Ketones throughout the day. Most people on one of these two diets need to have their ketones super high to get results. So, we were doing all we could to get there. That's when I had the night that B almost rushed me into the ER. Then, after I went a while without any seizures and they started back up again, we looked at the "journal" that I have to keep, to see what had changed. Turns out that the deeper I am in Ketosis, I tend to have more seizures. So, I have to keep my Ketones in the moderate range. How do I do that? Well, it's a delicate balance, but we have found that the 1:20 ratio seems to be the spot. That is 20 grams of fat for every one carb. Yep, that means I'm putting an extra pat of butter on just about everything I eat.

You can see that life is tough for Hank and he's clearly bored with this post!

So, meals aren't as easy as they once were. It takes a lot of planning and preparation. Going out to eat is near impossible. However, the manager at On The Border out here is precious and they have prepared a dish especially for me so that B can get his chips & salsa fix!!! Last night we went to Buffalo Wild Wings. I had to speak with corporate and get the exact counts on everything. They were amazingly honest and told me all of the places they rounded down. The manager there was amazing. Wonderful Christian guy that told B that just by our conversation he could tell he was a spiritual leader for our family! That's my hubby! So proud!!

The manager actually prepared my food himself and measured everything to make sure there were no discrepancies. He even comped my meal which was beyond precious since I know it required so much more work!!

So, we are still working each day to get this art down to a science...we keep a calculator handy so that we can do the math and make sure I am getting enough fat to go with each carb. I think we are getting closer to getting the numbers right...each day is a test, though.

Now that I've given you all of the boring details, I want to end this on a big Praise the Lord!!! As most of you know, we found out in November, after the surgery, that the medication I was on was treating the seizures on one side of my brain, but not the other. So, they added one more medication to my regimen hoping it would treat the additional seizures I was having. I was still having 5-10/day on very high doses of the original med. It did help and brought me down to 2-3 seizures per day. Well, God is so good because April 2nd I took my last dose of the 2nd medication. After much begging, the doc let me titrate off of it. Therefore, I am only taking the original med and doing the diet. The last few days, I have only had one or no seizures each day!! So, we believe the Lord is using this diet to make a real impact!!! Thank you, Lord!!

Please pray for our wisdom in how to implement each step of the diet and in making decisions about the foods I eat. Also, please pray for the doctors and the dietitians wisdom in this process.

Finally, Praise the Lord with me for my hubby that comes home from a super long day of work every day (he wakes up at 4:45 every morning) and immediately moves into the kitchen to make dinner for me. He is such an amazing provider!! The Lord has blessed me immensely with this man!!! Now, may I be healed so that I can give him all the blessings he deserves in return!!!

Again, thank you all for your prayers and your sweet concern to e-mail me and ask how I'm doing since I hadn't updated! You are all such a precious encouragement to me!!