~seizure FREE me~

~seizure FREE me~

Friday, July 8, 2011

Rambling... is there anything else I do?

Wow I am really not doing as well as I wanted to with keeping this blog updated. I wanted to record the whole experience of healing Atty better then this!

Atty is still doing so well. Although I think this second year into the diet might be harder in some ways. It's been a long time since he's had a seizure {well over a year is a long time for an kid} and so it's a lot farther from his mind. We talk about it from time to time and I made a video that we watch on occasion, but time still fades the memory. Which is good, and bad. In the first year he really listened and seemed to understand the absolute importance of following the diet exactly. Now he asks more for things he can't have or seconds on foods that he is limited on. I think also the fact that I am slowly switching over to a diet similar to the GAPS diet makes this an adjustment period for us. Because I am giving him unlimited non-starchy vegetables now and more of certain fruit {always paired with a fat}. I think the fact that I am making these changes makes him wonder what else can change. He hasn't thrown any fits yet when I tell him no on a food request, but he has sulked and or refused to eat the food he was offered in exchange.

I mentioned that I am switching him over to a diet similar to the GAPS diet. A while ago someone suggested that I read Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. I think I've mentioned this before. It took me a while to get the book as it's fairly pricey, but wow am I glad I did. Absolutely valuable. I've actually already loaned it out to quite a few more people who couldn't afford to buy it themselves, and every one who has read it has been blown away. I think it's a great read for anyone personally. Anyways I really feel that this is the diet that is the exact match for Atty. The MAS diet has done wonders, but it's focus is not on healing the gut and the health of the gut is directly related to Atty's health issues in my opinion {and the opinion of many others, including the doctor who wrote the book}. The GAPS diet has been used to heal others with seizure disorders but it's not as well know as the Ketogenic diet or the MAS diet. Which mean it's hardly talked about at all. I think this is a real shame. I'm not totally switching Atty over right away, it's going to be a slow transition. The GAPS diet is not a whole lot different then the MAS diet. I think the main difference for us is in the MAS diet you count carbs where as in the GAPS diet you focus on certain types of foods and food that heal the gut and build good bacteria in the intestines. They both exclude a lot of the same foods. There are some foods on the GAPS diet I wouldn't introduce yet {possibly in another year or two} that being the types of dairy products that are allowed like home made yogurt, certain beans and grain {a select few} and also honey. That's why I say a diet similar to the GAPS diet. Atty for at least the next year will still not have any dairy, no grain of any kind, no dried beans/peas, and no other sweeteners except stevia. The diet is a little to complicated I think to go into in great detail here, but it basically works in stages, you slowly introduce different foods as the gut begins to heal. Some times after the gut has healed up some people can tolerate food they were not able to tolerate before with out having any of the symptoms they were suffering from coming back. I'm not sure what all Atty will eventually be able to eat but I don't think he will ever be able to eat with out some restrictions.

This whole experience, while it has been eye opening and so exciting seeing him get better, it has also been very wearing on me. I have been fighting this drag me down feeling more and more lately. I just feel like being super lazy. Me saying something like that is like me sharing a deep dark secret. I'm embarrassed. Seriously. I am anything but lazy, in fact my husband wishes I would mellow out sometimes. I take multitasking to a whole new level. I can hardly sit still for a minute {unless I have a really good book, but even then I read in spurts interrupted by wild cleaning}. I generally can't even sit still for a movie. I won't sit still for a movie if the room is a mess or there is laundry to fold. So me feeling lazy, and I mean really really don't want to clean or cook another thing lazy, is odd. It's very out of character. It has me worried. I have to talk myself into picking up lately, into cooking and cleaning. I find myself fantasizing about curling up in bed for days. Or getting in my van and just driving, anywhere far away, alone. Of course I won't do any thing like that but the fact that I am even thinking like this is bothering me. Some times I wish I could just be a lazy mom and let my house go and just relax for a bit. But I can't and I won't and so that is that. I keep on going. That's what I do. But right now I just have to say... I don't want to.

Just admitting this on here makes me not want to post it, but I started this blog to be real about what was really going on with Atty and the whole situation and I'm a big part of it so I guess I have to be real about that too right? Sigh. Me and my ridiculous perfectionism that I can never live up to, will I ever let it go? Okay I'm done asking questions that you totally don't have to answer.

Now back to my super busy crazy life that I can not escape from {and don't actually want too}.


Heather said...

Just found your site while looking through Google Plus for GAPS diet and wanted to give you a bit of encouragement. My oldest had seizures (interestingly enough they got bad after we stopped the candida diet but we didn't realize that what she was doing before was seizures, just that she got weird( behavior issues plus what we now realize were blackout seizures) and vomited a lot in the night when she ate certain foods.

Anyway, we redid the candida diet then discovered the GAPS diet and she has not had a seizure since, and no longer gets the migraines/aura that she got right before even when exposed to the things that definitely triggered the seizures before. In fact, we have found that since she started the GAPS diet (only 3 months now started with intro) she is able to eat some of the foods she has always been allergic to and which, when she ate them she would be more sensitive to the seizure triggers (like camera flashes). In fact, at her piano recital she got flashed in the eye 15 times (she counted) and didn't even feel queasy which was amazing.

And the diet does get easier--especially as you are able to introduce more foods (for instance the kids LOVE being able to have honey and dairy now-- we have found that with raw milk dairy they are FINE in fact they feel better than before.) The kids still bug me about certain things but as they are seeing that they can now get away with their favorite foods more often they are pretty excited. It is always draining when first learning a diet but it really does get easier, especially once some of the cravings go away.

Iva said...

I am STILL crying about this milestone. Riah, we talk all the time about Addy's bravery and his miraculous recovery, but so often forget to mention that you and your dedication made it all possible. Your intuition, and the fact that you defended your intuition against the entire medical community over and over again is such an inspiration to me.
Your experience has been exhausting to say the least. When you are spent, lean on us that you have taught. We love you so much!!!