This blog was created for parents who want to talk about treating their child's Angelman Syndrome symptoms naturally. It is my belief that kids who have AS CAN and DO get better! What "better" is going to be for each family and child will be highly subjective; but, it is my intention to start a forum where families can create goals for their children and where they can get useful information from other parents about what REALLY works for kids with Angelman Syndrome.

We'd like to keep the tone of this blog as positive as possible; so, we'd love to hear stories about the successes that you have all experienced. No success is ever small, so please share those precious experiences and tell us what we all really want to know.......How did you do it? What did it take to achieve this result?

I will open this discussion by telling you a bit about our Angel Krista. But before I do that, I must tell you that NONE of Krista's accomplishments were possible without addressing her dietary needs! We started Krista on a gluten and casein free diet when she was 2 and a half years old. This diet has yielded miraculous results for her. She's six now, so her diet has evolved over the years to include some supplementation, mostly organic, as raw as possible, non processed, hardly any cane sugar ever, good carb to fat to protein balance at all meals and snacks and never EVER any dyes in her food.....especially the red dyes. I'm sure we'll get into more depth about why these things are important for kids with Angelman Syndrome as more parents respond about their children's dietary experiences. I just want to note that most of what I know about nutrition and treatment for my daughter was information that I read in books and on-line articles about treating autism. The autism community is a wonderful resource for treatment options that can be successfully implemented for children with Angelman Syndrome.

About Krista: She's a beautiful, healthy, happy, active, sassy and amazing 6 year old girl! Krista has 3 equally amazing siblings; Alyssa 17, Olivia 13 and Stevie, Jr. 9. Krissy's sisters and brother have played a pivotal role in what I call Krista's "recovery"(recovery because we are working toward recovering Krista from the symptoms brought on by her AS). She also has a dotting Daddy and a crazy mother who envisions an independent future for her. Because we believe in this crazy idea called "recovery" and learned to stop taking no for an answer and started not caring about her prognosis (I always say.....I can accept the DIAGNOSIS but never the PROGNOSIS) Krista is full of abilities rather than disabilities....at least that's how we choose to look at it.

Here's some of the fantastic things Missy Krissy can do.......

Physically: Walk, run, climb, jump, hop, skip, dance, swim, etc...etc...

Cognitively: Krista is VERBAL!!! She can say 50+ words (learning more all the time) and she says some phrases like, "I good good girl", I don't wan wan" (I don't want to), "waa my daaa?" (Where's my Dad?) and my all time favorite, "I LA YOU" (I love you)!!! Krista does well in school where she passes most of her spelling tests (modified) with an 80% or higher, she knows her colors, shapes and numbers (she hates math lol) and demonstrates the ability to read by being able to point to the word requested in a field of 3 or more. Amazingly, Krista is very well able to follow her classroom routine (not happening at home) and is able to come home and talk to me about kids in her classroom and how her day went. Our conversations usually are question based; like I'll say "How was your day?" sometimes she says "good" or "bad" and I'll just follow that up with "yes" or "no" questions to attempt to figure out what her day was like and to teach her skills about back and forth conversation. She's getting so good at this that she likes to talk about her wheel chair bound friend at school, Pedro. Every day she tells me about this sound that he makes (ahh ahh ahh....sounds like The Count from Sesame street), this is how I know she wants to talk about Pedro. Recently she started following up the sound he makes by smootches. I asked her if Pedro had learned to kiss? And she says an excited "YEAH!". So I think it's really neat that I get to have conversations with a little girl who can tell me something about her school day; a girl who was never supposed to talk.

This summer is going to be a real breakthrough time in Krista's life. We have FINALLY figured out how to get our insurance to pay for more therapy!!! We just started her in a therapy called Interactive Metronome http://www.interactivemetronome.com/IMPublic/GaitMate.aspx, which helps with everything especially attention and behavior (a sore spot with Krissy), it's implemented by an OT; so, that's how it gets billed. We have just discovered a new and promising speech therapy method called PROMPT http://www.promptinstitute.com/. It's not easy to find a certified therapist, but we did! PROMPT has a great success record in helping to treat apraxic kids (which I believe most if not all angels are), she's starting to see a Chiropractor again, which became so very necessary after Krista was determined to be no longer eligible to receive physical therapy at school and she regressed quite a bit, especially in her gait. In the past, Chiropractic has very quickly resolved this issue for her and was able to do in under 2 months time what physical therapy had not done in almost two years of time. And last but not least......We are going to see a new DAN! doctor tomorrow! I'm so excited about this because the testing that this doctor will be able to do, is going to give us so much more insight as to what we can do from the biomedical prospective to help Krista get better! Most DAN! doctors are not able to bill insurance but this one will bill insurance if your insured by BlueCross BlueShield or Medicare! http://www.u-ok.net/

I can't wait to update you all on her progress and I can't wait to hear what's working for all of you!

Wishing all of the Angels Superior Health!

Karen VP.