Prior to my career as a mom I was a registered dietitian. I loved learning about nutrition and the way the body works and responds to proper nutrition and vitamin and mineral supplementation especially when it's stressed from a disease or some sort of trauma. It's actually very fascinating. As far as working though, well, that really wasn't my thing so the momma role fits perfectly. When my kids were born I put the nutrition to work and tried to keep my kids fed as healthy as possible. We also use homeopathic remedies for most of their ailments. When Rett Syndrome came into the picture I was challenged. Never had I worked with a child so sick before. Not to mention the fact that right after diagnosis Annie was an incredibly fragile child, it's only now that I realize just how sick she was then. I researched of course and found out everything I could about rett and how it affects the body and how I could possibly keep Annie's symptoms less severe by supplementing with nutrition (man did I feel like a failure when we had to get a g-tube, fortunately the g-tube ended up being the best move we could have made for Annie's nutrition so it all worked in the end.) We started by changing Annie's diet, we took out gluten and casein and saw a HUGE improvement. We also started digestive enzymes as children with rett syndrome have a very difficult time with digestion. We of course added a multivitamin, vitamin D and extra calcium. From there it's sort of a blur, we have tried L-carnitine, extra folic acid, zinc picolinate, aloe vera juice, and host of other things but if we don't see a change for the better then we stop them, no reason to make the liver work any harder than it has to processing all of that without benefit. In addition to the supplements we have also have Annie on some meds - it goes against all of my "natural" tendencies but homeopathic remedies didn't even touch Annie's issues and if natural doesn't work then we need something to offer her relief.
Soooo, here is what we have settled on. And when I say settle I use the term loosely. Poor Scott learns the "cocktail" just as I'm modifying something. Annie is always changing and growing and her nutrition needs to follow suit.
These are for Annie's basic nutrition: Bone supplement (for thinning bones due to rett), Multivitamin/mineral (rett causes malabsorption) and a probiotic (for proper gut flora, regularity and increased immune system)
These are for extra nutrition: a "milkshake" of Hemp milk (rich in fat, calcium and vit. D), protein powder and flax seed oil
These are meds that are given when they are necessary: suppositories (for severe constipation or impaction - rett causes poor motility and hypotonia of all muscles including the GI system), Mylanta (for breakthrough reflux and gas), and Levsin (for severe GI pain).
These are Annie's everyday meds: Buspar (rett syndrome causes severe anxiety), Zantac (for reflux - I'm not sure you can have a neurological condition without having reflux), and neurontin (for Annie's nerves that are "over-firing" and causing Annie severe pain).
These are for sleep: Melatonin (to help put Annie to sleep, we give it twice a night because rett causes severe sleep disturbances), and benedryl (to help keep Annie asleep). I really feel like Annie should be on stronger meds for sleep and we have tried some but at this point Annie has some pretty severe breathing issues and I would rather be less aggressive here then worry about Annie's breathing at night.
In addition to all the meds and supps Annie also has a whole host of medical supplies because of her g-tube. This is a typical monthly shipment:
2 types of syringes for the month, extension tubing, tube feeding bags, a new mic-key kit so we can change Annie's button (yes, if you can imagine, we have to do that), and of course the formula (we use complete pediatric)
Good thing I have 2 "forklifts" to help me get it all up the stairs and into Annie's closet!
It's funny (well, funny's not really the word for it), I was recently at the hospital with Annie for some testing, she was in a new department so they weren't familiar with her and wanted to know a list of her meds - I didn't bring Annie's medical binder with me so I had to write it all from memory, I told the woman there, oh, she's not on many meds at all. Once it's written out I see how much she's really on and it's alarming to think that this is an almost 6 year old little girl. It's actually a little hard to keep up with all of it but if this is what Annie needs to keep her strong, healthy, calm and in as little pain as possible then we will keep it up. I can't wait for the day that we start peeling all of this away and are left with a child who can thrive all on her own. I DO feel very thankful when I look at this list though because it does NOT include ANY anti-seizure meds. Most girls with rett syndrome suffer from seizures. Many of these seizures are hard to control with meds. Some girls need to be on large amounts of different meds that cause them to sleep during the day in an attempt to control seizure activity. We are so very blessed that Annie was only on seizure meds for a very short time and that she has been without them for years, however we are aware that they may come back at any moment and are thankful for every day that Annie lives seizure free.
Annie has such a special place in my heart because I bleed (literally internally) for people with GI problems. Good thing you got your formal education in nutrition of this might have been overwhelming. I can't wait for the day you start to peel back some of this, it will come!
ReplyDeleteMy head is spinning Bridget! Amy's meds are so simple by comparison - an ACE-inhibitor for her heart (not Rett-related), two anti-reflux meds, and daily doses of lactulose for constipation. She hasn't had any seizures so far, so no meds for that. The dietitian hasn't recommended any vitamins or other supplements. And so far I've resisted restricting her diet - it's so restricted anyway because of what she can chew and swallow, and everyone has always been concerned about her gaining enough weight. (I did once switch her to soya rather than dairy - we did it for a few months, and it honestly made no difference to the reflux - only difference was that the vomit smelled better!) Most GI doctors don't go for the gluten/casein-free diet, do they - but I know lots of parents find that it makes a difference. It's hard to know what's the best thing to do. I'm impressed at your regime though!
ReplyDeleteI would love more info on some of your supplements...going to send you an email soon! thanks for sharing :)
ReplyDeleteWe stand with you for healing for your daughter -that she will recover all.
ReplyDeleteHere is our story...We finally had our visit at the Rett Center at Texas Children’s Hospital yesterday. We’ve been waiting for this visit for several months. It was our hope that they would give us a better explanation of what the Genetic tests means and Alana’s diagnosis. When we got her test results back in April, all they told us was that it was positive for Retts and that there was a mutation on the MECP2 gene, but we really didn’t know what that meant. But the doctor explained it to us this way…. They needed to look at each gene in Alana’s body to see where the problem was and they had to look at each one individually. Every gene has a certain number of letters that make up that gene. There are approximately 30,000 genes that make up the human body.
If any of those letters in a gene are out of place or duplicated it can cause severe problems. Every gene in Alana was perfect until they got to the MECP2 gene. The MECP2 gene has 1500 letters that make it up. When they began the search letter by letter, one by one and got to letter 710 which was a “G” and then to letter 711, they saw that there had been a duplication of the letter “G” on number 711. So now there were two “G’s” side by side. But it doesn’t just pick up with the next letter, it pushes every letter down from the duplication and they are all mapped incorrectly on that gene all the way down to letter 1500. This is what causes the symptoms in Retts girls.
In the midst of the discussion though I was reminded and encouraged at how intricately and wonderfully God made us. I don’t know how anyone who studies genes could NOT believe in the Creator. (I praise you because I am fearfully and wonderfully made; Your works are wonderful, I know that full well. Ps 139:14 – ” You watched me as I was being formed in utter seclusion, as I was woven together in the dark of the womb. Ps 139:15”).
How can you be encouraged you say? Because I now know where to target my prayer. We will begin to speak to the letter that was supposed to be in place 711 of her MECP2 gene and all the letters that follow and command them to be restored to God’s original design. The scripture that came to me was Isaiah 49:2 “He made my mouth like a sharpened sword, in the shadow of his hand he hid me; he made me into a polished arrow and concealed me in his quiver.”
Our mouth was created to be used as an arrow to take the Word of God and target things that need to be changed. As we use His Word mixed with faith in His promises to see that 711 place corrected and begin to see that letter changed to what it should be, I believe it will change. And as it begins to change, we will see the corrections also manifest in her body.
I want to be like David. When he came back to Ziglag and saw all of his family gone and the devastation to his family and property, he asked the Lord what he should do and the Lord told him – pursue, overtake, and recover all. I believe that’s our direction for this disease. Will you join me as we pursue, overtake and recover all? It may take some time but don’t let what we see with our eyes move you off your faith. No matter what it looks like, no matter what we see in the natural, target that gene place and number 711 and continue to speak to it in the Name of Jesus until it bows it’s knee to that NAME and is totally restored and we recover all!