A Meaningful Therapeutic Already Exists!
This is the phrase that rang loudly through my head as I sit listening to the Scientific lecture given by FAST, presented by Dr. Rebecca Burdine at the gala last weekend as I had the distinct pleasure and privilege of attending this most informative event and celebration. As I sit waiting with baited breath as every other parent did, waiting to hear about what scientific breakthroughs had been made and how that translates to a cure for AS; I hear the presenter explain her own discomfort with using the term “cure” and that maybe we can all just agree on the term “meaningful therapeutic”.
So what does that mean? Please forgive me if I do not get Dr. Burdine’s wording exact as I am sure that the lecture was recorded and will be available for review at www.cureangelman.org soon. However; as I recall, the gist of what she was saying, is that a meaningful therapeutic would include an overall better quality of life for her daughter, a life without seizures, illness and improved ambulation. She said that they could get around the lack of speech. Presumably meaning that through alternative means of communication, lack of speech could be overcome.
Ok this is a really fair and politically correct answer to whether or not we should be hurling around the word “cure” and providing an explanation for what a “meaningful therapeutic” would be or look like. My own personal issue with this; is that, for my daughter, the “meaningful therapeutic” already exists! And it exists in the form of a therapeutic, low glycemic, GFCF, dye free, minimally processed diet.
For this reason, I was elated, to say the very least that during the education lecture; Erin Sheldon presented on many important topics including seizure treatments. These seizure treatments included the very safe, effective and well researched treatment of the low glycemic diet as a therapeutic for seizures in AS. This is the work of Drs. Ron Thibert and Elizabeth Thiele. Please take a look at this link to an interview with Dr. Thibert where he explains that those affected by Angelman Syndrome who are given either a ketogenic or low glycemic diet “have a response to dietary therapy that is even higher than that of the regular epilepsy population”!
THIS SHOULD BE FRONT PAGE ANGEL NEWS! A MEANINGFUL THERAPEUTIC FOR THE TREATMENT OF EPILEPSY IN ANGELMAN SYNDROME HAS BEEN DISCOVERED AND VERIFIED USING THE SCIENTIFIC METHOD!
And this meaningful therapeutic is just a diet! It is as simple as the old adage, “you are what you eat”! This applies for everyone; especially our angels.
My own little theory is what I like to call, removing the interference. In today’s modern world, there are countless forms of interference. There are the electromagnetic fields emitted by the computer I am typing on right now that have been shown to cause problems for everyone, especially the neurologically impaired, there are environmental allergies to the trees, the grass, the flowers outside. To the mold and the dust and the contaminants in the water inside. Sensitivities, to the dreadful fluorescent lights that adorn every classroom, these sensitivities cause many problems with one’s ability to concentrate, focus and learn. And when you look at all of that interference; you say “geez, I’d have to put my angel in a bubble to avoid all of that”. And you’d be right! Some parents do a very good and very effective job of avoiding quite a bit of this environmental interference but it’s a very pricy and laborious undertaking.
Fortunately, for all of us, there is a MUCH easier way! We can simply control the food that we allow into our home and into the mouths our children; especially our children with Angelman Syndrome.
I can only speak from my own experience but I fully believe that you will find the same to be true for you. Our daughter Krista, who has AS, used to be super sensitive to many things! I don’t have filters on my tap so when Krista would take a bath, she’d get rashes just from the water. When I would take her to the Children’s Garden, she’d sneeze and get dark circles under her eyes. So, what is a mother to do? Sure I could buy expensive water softeners and rush her home from the Children’s garden never to return; but, if I rush her away from the garden, the garden that she loves, the garden that brings such joy to her soul, then, what’s the purpose of all that I have been doing to help her get along so well in life for all of these years?
I can and probably should use an expensive whole house water softener/filter on all the taps in our house but what happens when she washes her hands at school? What happens when she uses that alcohol ridden, antibacterial, fragrance laden and certainly NOT dye free soap to wash her hands?
Well, I’ll tell ya, in the past, all of these things were problematic; however, the longer we stick with a clean diet for Krista, a diet that is meant to “remove the interference” and to create health where there was once illness, Krista’s sensitivities to all of this outside interference, have become completely unnoticeable! She has absolutely no outward signs that she is reacting in any way to our toxic environment. An environment that is nearly impossible to control. Krista now enjoys hours of swimming in a chlorinated pool; as well as hours at a time just living it up, smelling the daises, and jumping into leaves with her friend at her beloved garden!
Before we changed Krista’s diet, she was sick a whole lot of the time, she was having seizure activity, her walking was there but not really good and not really safe. There wasn’t much babbling, speech or speech like sounds. She had HORRIFIC diaper rash caused by yeast, my poor little baby looked like a burn victim on her bottom! She had eczema at the nape of her neck and behind her knees. This eczema would itch all night and she would spend hours at a time scratching it as it bled. We would wrap these patches up as tight as we could to keep her from doing this harm to herself but the bandages would only contribute to her compulsion to scratch and dig at these areas. She’d spend about two hours per night coughing due to phlegm that was tickling her throat and not allowing her to sleep. She’d swing her arms back violently as though she felt that she was falling while trying desperately to fall asleep(we later came to understand that this was a seizure activity). She had terrible reflux, projectile vomiting and bowel movements that cycled between painful constipation and even more painful diarrhea. Krista never slept more than 30 minutes at a stretch pre diet; which, contributed greatly to the depressed mood that I couldn’t shake; which in turn, affected our other children whose emotional needs really became neglected.
Post diet: Krista says a hundred plus words!!!!!!!!! Including my favorite phrase… I LOVE YOU!!!!! And “Hi Mama”! She is totally seizure free as long as there are NO dietary infractions! She sleeps AT LEAST 8 hours per night! Krista not only walks safely, but she RUNS, hops, skips, flips, swims and swings! All things, that not only increase her independence; but, helps her to truly enjoy a quality of life that was difficult for us to conceive of prior to the diet. Obsessively scratching, bleeding eczema is a thing of ancient history! No more rashes of the bottom and to look at it now, you would never know that she, at one time, truly looked like a burn victim! She has clear skin and radiant health! And my other 3 children are now able to receive the emotional attention and support that they always deserved! I learned through Krista that gluten was causing my debilitating arthritis and since ditching it 2 years ago my arthritis is at least 90% better!
In short, because Krista healed, our family healed! I want that for every angel family who is ready to receive it!
For that reason, I enrolled at Integrative Nutrition; I am about 3-4 months from receiving my certification as a Health Coach (really means Nutrition Counselor but Health Coach is the official title). And I want to be of service to the parents of children with AS. If you are ready to change your Angel’s life and to receive what I believe to be a “meaningful therapeutic”, this safe and effective treatment that already exists! Then contact me and I am happy to work with you and your family toward recovery!
Karen VanPuyenbroeck
krissyangelsmom@yahoo.com
“Let food be thy medicine and medicine be thy food”
Hippocrates
I love that your so passionate about what you are learning and the changes you found in your child and yourself. While I wholeheartedly believe in a clean diet for everyone I think its important to also state that not every diet change has the same effect for everyone, not even every Angelman child.
ReplyDeleteMy daughter Harli has been on a very clean, low glycemic diet since she was 15, she is now 23. She has Angelman Syndrome and is deletion positive.
She did not have frequent seizures prior to the diet change and has had no change one way or the other. Harli had over 40 words prior to the diet change and now has 46 total, I do not believe a diet change caused this, her first word was spoken at 6months of age.
Harli has never walked independently and still does not.
Harli was sleeping well through the night prior to the diet change and continues to do so.
Harli's diet is highly organic, no processed foods, no starches like white flour, potatoes, pasta etc and no meat as she has issues with ammonia level fluxuations (as many AS persons do). We use only 'green' laundry products and clean with vinegar only.No chemicals.
Harli is not doing flips, swimming or talking in long sentences.
She began having Catamenial seizures at age 21, her diet is the same.
There is no one 'cure' all or ALL in one diet that works the same for every AS child.
Dietary intervention may not cure AS, the same way that a drug doesn't cure AS. However, I'm not the only AS parent who has experienced this success and as you know, good, clean eating most certainly does not hurt. You thought it was important to let everyone know that all people with AS may not "do flips" and I think it's important to let them know that they just might.
ReplyDeleteHow long have you been using this diet on your daugher? and has it changed harmful behaviours such as hitting, biting others etc?
ReplyDeleteHi JPsMom!So Krista started the GFCF diet 8 years ago... An amazing website for that, among other things is tacanow.org. Her diet has evolved over the years to exclude dyes and include more organic and low glycemic foods. However, I gotta say that the GFCF diet all on it's own, was nothing short of miraculous for our family!
ReplyDeleteWe have struggled with behavior problems on and off throughout the years and a book that I believe that you would find offers you tremendous insight is called Is This Your Child? by Doris Rapp. You can also google her and find some radio shows that are available on the web that could help to get you familiar with her work. I also highly recommend that you visit a website called www.StrepMonster.org (maybe .com if I'm wrong)... My daughter suffers from real illness that causes UNCONTROLABLE behavior at times! If you there are things that resonate with you about any of this, please feel free to contact me, I am all to happy to share my experience with you in hopes that you are able to find some peace in your life! GOOD LUCK TO YOU!!!