Talk About Vaccinating

There is tons of info on the web about this subject; especially as it pertains to regressive cases of autism. When I talk about vaccination and the harm it has done to my angel most people don't understand how I could think that vaccinations could harm a kid who already has this chromosomal abnormality that is so obviously to blame for her short comings.

I really want to share this information with you and I hope that I am able to do this in an intelligent and clear way; but bear with me, this subject hits a very sensitive nerve in me and an emotional charge that I can not describe to you.

My first question to someone who would ask why I would be so silly as to think that vaccinations would cause problems in an Angelman's child who has broken, faulty, shitty chromosomes, genes, whatever....... Is why in the hell would it not?!

OK.... I told you this was an emotionally charged issue for me :)

Take the Hannah Poling case for instance, if you don't know about it, just Google it. This girl has a regressive case of Autism brought on by her vaccinations because she had an undetected, underlying, Mitochondrial disorder. My belief is that many of our genetic cases of neurologically impaired people is that they probably inherently have a Mitochondrial disorder because they have faulty DNA. I have read articles to support my theory on Prader-Willi syndrome (same chromosome as AS) and in The Autism Files magazine. Hannah Poling's family won this law suite and this is the first case that was ever widely publicized where a family was compensated and where the drug company admits that they vaccines caused a child's autism.

I believe that it was on angelmansyndrome.org where I read about some vaccine that in contraindicated for people with AS because of health complications that our children SPECIFICALLY have with this vaccination! WHY??????? Why would our children specifically have a reaction to a vaccine? I'm not sure but we all better think about it!

So here's my personal story about vaccinations that jack our kids up.............

Let me start by giving you three background stories of events that occurred within our family that should have alerted me to the trouble vaccination could cause my angel, but it didn't slap me in the face hard enough!

I have twin brother's in law who are currently 19. I met the twins when they were 6 months old around the time I started dated their big brother. They were healthy, they were born only weeks premature and each weighed over 7 pounds at birth! As they grew into toddlers they were such cute and active toddlers. No one expected anything but the usual run of the mill childhood for them and the exciting life of living as identical twins and all of the hyginx that might ensue in the coming years.

At two years old the boys received the MMR vaccine. Within days, the first twin became very ill (I believe he had an ear infection), he began antibiotics and 3 days of lethargy ensued. Mom was concerned but was reassured by her pediatrician. On day 3, the toddler who had been mostly sleeping for all of this time, sat straight up on the couch, looked at his mother and said "good-bye Mommy". Convinced her son was dying, mom called 911. The nightmare began and when this little boy said good-dye to his mother, he meant it and it would be the last time he would speak to his mother as a neurotypical child.

After a long period of time of trying to figure out what happened, the hospital figured out the toddler had a seriously high level of ammonia. They couldn't figure out why, so they accused mom of intentionally poisoning her boy. Eventually after extensive investigation, he was diagnosed with a Urea Cycle disorder called OTC. A very rare and often fatal disease where the affected person's liver would have an inability to process the ammonia that is produced by protein in the diet or the protein that occurs when a person's body is in such an ill state and unable to eat that the body begins to breakdown it's own tissues to utilize it's own proteins in a cannibalistic way. The result? The little guy remained in a comma for 3 months, parents were advised to cease tube feeding and allow him to starve to death. Well, this advice wasn't followed and he came out of his comma and began to recover many of the deficits his parents were told we not recoverable because those centers of his brain were gone. Today, at 19 years old, my brother in law is still severely affected with classical autism and health afflictions and will not go on to live the life we had all assumed he would. As for his twin, thank God he's affected to much lesser degree with Asberger's Syndrome(by the time the second twin became ill, treatment was readily available because of the experience they had with the first twin). He suffers quite a bit with his social inadequacies and has some health complications that will impact his life; but we are grateful that he can live an independent lifestyle.

OTC is chromosomal, just like AS is, but why were these children typically developing infants and toddlers up until the point of MMR vaccination? Was it just a coincidence that they were vaccinated so close to the date of the onset of their symptoms? It could be, but you wouldn't get me to put my money on it!

My beautiful Olivia, my vibrant, huggy, kissy, luvvy Olivia with the long platnum blond curly locks of hair. Olivia was vaccinated just days before her second birthday, the day of her party, we noticed that she had lost a considerable amount of hair and she wasn't feeling well. Within days of that, she lost almost all of her hair while we awaited her appointment with the doc to figure out what on earth would cause a two year old to loose all of her hair! I was alarmed! I brought her in and said "we were just here last week and she now has no hair". Even I had not considered the possibility that the MMR vaccination had caused this reaction; but, I suspect he did judging by the stunned look on his face at the sight of my nearly bald toddler. He sent me to several specialist who came up with nothing and my beautiful baby began to grow her golden locks of hair back; so I came up with me own asinine theory that she never lost her baby hair so she just lost it late. Olivia went on to grow into a less affectionate child who you could never capture looking at the camera in pictures, who became increasingly socially awkward, but who never the less was an average student and a healthy and still oh so beautiful blond haired blue eyed beauty. I never understood the correlation until I was asked to vaccinate her once again in 5th grade. I had already stopped vaccinating my angel because of things that happened to her; but, I thought it was probably ok to vaccinate Olivia because she had no adverse reaction in the past; but an inner voice reminded me about her brush with baldness. That night I watched Mystery Diagnosis and it was revealed that a man had gone bald due to heavy metals poisoning; it was my ahh haa moment. Back in 1998 thimerosal was in that damn MMR! Olivia had suffered from heavy metals poisoning and I had no clue! I looked at the dates on her vaccination schedule compared them to a perfect dated picture taken just 2-3 days later when my husband first pointed out the hair loss to me. I felt sick, I started going through all of her pictures and noticed how pre vaccination she looked at the camera and smiled...a natural smile, post vaccination, she looked out of the corner of her eye (not at the camera), sometimes bit her bottom lip and always had a goofy, forced, unnatural smile on her face for pictures.

Today Olivia is an awesome and oh so beautiful 13 year old girl. She is obsessed with animals, especially dogs; however, she was able to channel this obsession into something great by starting her own pet grooming and dog walking business. Interestingly enough she began a dog play group with the mission of properly socializing dogs. Olivia's health is good but she does deal with bouts of Bell's palsy which I can't help but to wonder if it's caused by the heavy metals in her system. I would like to have her chelated at some point.

My sweet cherub faced healthy little angel girl Krista Hailey. What a whirlwind raising this baby, I had no clue why she ate so much, only to projective vomit it up, or why she never slept more than 30 mins at a time, or why she had eczema that itched so much that she'd scratch it to the point of bleeding and I certainly could not understand why my poor little baby had such violent yeast infections that her little bottom was scarred from the burning caused by what was coming out of her body. I didn't know why she had such a heightened startle reflex, it looked like she always felt like she was falling. But I had no time to wonder too much, I chalked it up to bad parenting on my part and I was exhausted and alone with no support from family or friends. I could only ask my poor little ten year old Alyssa to take the baby so that mommy could have maybe 10 minutes of sleep. I had a 2 and a half year old boy, Stevie who I was crazy about but I struggled with guilt because I couldn't be the mom I used to be to him any longer. My Olivia was off in her own puppy obsessed world at 6 so she was ok, at least I thought.

Fast forward a couple years and I stumbled on a miracle diet. GLUTEN/CASEIN free! EVERYTHING got better with Krista! It was as if this entire family had woken up from a fucking nightmare! Oh how I had thanked God profusely for this miracle!

I had put off Krista's vaccinations because I wasn't sure about them. When her 3rd birthday was nearing, her doc informed me that she couldn't go to preschool without them. I still questioned it, but was comforted and reassured by what he was telling me about the safety of the shots and that since she had no adverse reactions to the ones she received as a small infant, she would surely not have any reaction to these. I went against my gut and did what I was told because I wanted my special needs girl to go to preschool. Krista was already beating the odds and her ped was always second guessing her diagnosis because she was almost potty trained and could speak some words all before the age of 3 with Angelman Syndrome! I thought she couldn't continue to beat the odds without school.

Krista was vaccinated at nearly age 3 with the MMR. Within days, Krista became ill, very bad ear infection, she took antibiotics, she lost her mind!!!!! She started up the old behavior of staying up all night, destroying our room, removing clothing and drawers from our dressers as we slept, she went back into diapers all the time, she started having seizures, SHE STOPPED TALKING!!!!!!!! Sound familiar??????

Some must watch videos!

For anyone who is interested in learning more about what causes the health/cognitive problems in AS and how to treat it. This video is geared toward autism; however, many issues that we are aware that exist in Angelman are addressed in this nearly 1 hour long video. Please watch it! It will give you an entirely differnt view of what's happening with your angel and how treatable it is!!
http://www.viddler.com/explore/tamiduncan/videos/7/

The following link is for those of us who want to know how to treat our children's dental needs in the most safe and effective manner. This in 30 minutes long and it's radio; so, you won't have to be glued to your computer in order to listen :)

http://www.viddler.com/explore/tamiduncan/videos/7/

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.