First, I would like to thank EVERYONE who has helped us along this journey. It is just beginning for us and we hope everyone will follow Payton's story and be just as excited about the potential of progress as we are. You are all family to us and we appreciate everything that has been given and said. With that I am going to share details of our trip to Jacksonville. It has taken a few days to get my brain normal again. All the information that was given to us was amazing and there was so much that it literally hurt my brain for days after.
This Doctor had me at hello. I was so worried about what we were getting into. This isn't your typical Pediatrician and she was a little quirky(which I loved) and you have to be a little quirky to think outside of the box. She greeted us and watched Payton for awhile. Noted her behaviors, and literally wrote down every move she made. How she would tip toe walk, line up her Nemos and Dory, squint her eyes, run in circles, drag her brothers to spin with her, she was non stop and that was typical for her to be that way.
She asked us a few questions and then brought the boys in and asked them some questions. She wanted to talk to the boys and get their views on their sister. What they didn't like, what they did like, if she plays with toys how your supposed to... Of course Jackson made the comment of how he just wished she would play with him and talk to him and be "normal"... ( I was holding back tears of course), then it was Trenton's turn and leave it to him to lighten the mood. "I want her to stop taking my Skylanders and leave me alone." Devin and I just laughed and then she said to the boys,"You boys are your sisters best therapists, she needs you both more than anything to help her learn, you are doing a great job and to keep up the good work because Payton is something special." AGAIN I am holding back tears and just wanted to hug her immediately. I hold so much inside and there are days when I just burst alone. She had me from that moment on.
She then began to tell us stories of parents just like us, traveling to see her. The remarkable recovery they are making and there happened to be another mom there that had a son about a year older than Payton. He seemed "normal" to me, but he started out just like Payton. Non-verbal, no receptive language, no eye contact, no awareness... the list went on. This is when I had to remind myself that EVERY child with Autism is different. If you have met one child with Autism, then you had met just one child. That always sticks with me. BUT I know and feel in my gut that this Dr. will change our life. I just feel it. She kept saying Payton will make her famous. She kept calling her, her juicy two year old that was "dusted" with Autism and that she will try everything she knows to get her back. She was so knowledgeable and open minded about everything we asked her about that we had researched. Devin even mentioned the fecal transplant. LOL She said it is not quite there yet but it is showing promising results. If you want to read about it go here. http://symbionticism.blogspot.com/2013/04/microbiome-can-fecal-transplant-cure.html
We are parents wanting to give our daughter the absolute best outcome ever. We don't ever want to go back and say, "I wish we would of done this...."
Right off the bat she said that she should be on a probiodic. Read about that here.
http://www.huffingtonpost.com/2013/12/05/autism-probiotics-study_n_4392838.html
She thinks she definitely has the leaky gut. Stool samples are done and sent off to the lab. We will know everything there is to know about her gut on March 20th. She is taking a special probiodic twice a day, along with Vitamin D3 and Vitamin A. We will get a complete run though about her blood work on March 20th and adjusting those vitamins as needed.
Then she said the word I was waiting to hear that I have read about... Methyl B12 injections. Out of the B12 family, only methyl-B12 has the ability to activate the methionine/homocysteine biochemical pathway directly which results in more “fuel” to the brain. The number one thing that Methylation makes is GLUTATHIONE (the body’s main detoxification enzyme responsible for removing mercury, lead, cadmium, arsenic, nickel, tin, aluminum and antimony). HELLO! makes sense.
Dr. S. Jill James has also shown that children with ASD have 80% less glutathione in their cells and that 90% of children have defects in their methylation. Possibly Payton? This means that children with Autism cannot effectively fuel the brain and detoxify heavy metals and other harmful substances from their system. BINGO! 5 shots at once probably not a good idea. I can kick myself forever but just have to keep moving forward. Her blood is being tested for Glutathione to make sure this is her issue. In the mean time we are giving her the Methyl B12 shot every other day until her appointment in March to again verify. The odds are on are side that this is an issue for Payton. She is also getting the MTHFR enzyme tested because it is the middle man in this issue.
B12 works closely with folic acid. A precursor folic acid molecule must interact with the enzyme MTHFR (methylenetetrahydrofolic acid) to become 5-methyltetrahydrofolic acid (5-MTHF). 5-MTHF gives the methyl group (the “M” part) to B12 so it can become methyl-B12. Unfortunately, many children have a defect in this enzyme. (Probably Payton) In a recent study by Dr. S. Jill James, 90% of children with ASD were found to have methylation defects. http://treatautism.ca/b12-and-methylation/
The shot is a miracle for some parents. We are praying so hard that is the case for us.
We are putting our best foot forward and praying our hardest for success but are reserved in knowing that it may or may not happen. I am scared to death to give her a shot every day but I know it is for the best. It can't hurt her so why not? Everything we are doing is because we love her. One day maybe she will understand just how much we love her.
All for Payton
Thursday, February 13, 2014
Thursday, February 6, 2014
Jacksonville here we come!
We are gearing up for our appointment with our DAN doctor and we are so anxious. We have collected all of Payton's medical records and read through them and its funny what doctors write. During her delay evaluation, the doctor put, saw child eat crayons, does not color with them. I just have to laugh because at 20 months old during that time, it was not a concern for me. It had to of been written down though. Trenton still taste tests crayons and he is 4. How about the fact that at 20 months she had no speech or receptive language? That wasn't written down though. 3 months later she saw another doctor and luckily he saw what I knew all along! Seeing her diagnosis on paper is very emotional for me still. I never saw it written down, only coded. But we are moving on and trying everything to get this beautiful girl out of her cocoon.
Just this week Payton started Therapeutic listening therapy. What is it you might ask.....
Listening is a function of the entire brain and goes well beyond stimulating the auditory system. We listen with our whole body. In order to fully address listening difficulties one must also attend to the listening functions of both the hearing ear and the body ear. One such approach that addresses the multiple facets of listening is Therapeutic Listening. (Listening With the Whole Body) The main idea is to emphasize integration of the auditory and vestibular systems together. Since there is such a close connection with visual functioning, visual processing also will likely improve. Particularly spatial awareness, and the concept of time and space. (http://spdsupport.org/articles/11-therapeutic-listening.shtml) She will start using headphones for about 5-15 mins at a time. It is a program that has had research done with excellent results and the hope is she is more attentive and that it strengthens her listening skills indefinitely. We also learned recently that she has a weak core. We started more core strengthening exercises that will strengthen her core muscles. Devin and I were kind of shocked to learn that because she is so strong. She uses her arms and legs for everything but if she is laying down, she has difficulty arching her back and lifting her head. Weak core muscles are common with ASD kids. I never realized how important your core is until recently. If you want to learn more read here: http://miriamjang.wordpress.com/2011/03/24/poor-muscle-tone-and-severity-of-autism/
On top of her Autism diagnosis Payton also has sensory processing disorder. Formerly known as "sensory integration dysfunction" is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.
The listening therapy is supposed to help Payton become more focused and attend to task and hopefully start to listen better! :) I will update when we get back and let everyone know our next steps!!! We thank you all so very much for the donations to make this possible. We love every one of you more than I could express.
This girls face says it all.
Just this week Payton started Therapeutic listening therapy. What is it you might ask.....
Listening is a function of the entire brain and goes well beyond stimulating the auditory system. We listen with our whole body. In order to fully address listening difficulties one must also attend to the listening functions of both the hearing ear and the body ear. One such approach that addresses the multiple facets of listening is Therapeutic Listening. (Listening With the Whole Body) The main idea is to emphasize integration of the auditory and vestibular systems together. Since there is such a close connection with visual functioning, visual processing also will likely improve. Particularly spatial awareness, and the concept of time and space. (http://spdsupport.org/articles/11-therapeutic-listening.shtml) She will start using headphones for about 5-15 mins at a time. It is a program that has had research done with excellent results and the hope is she is more attentive and that it strengthens her listening skills indefinitely. We also learned recently that she has a weak core. We started more core strengthening exercises that will strengthen her core muscles. Devin and I were kind of shocked to learn that because she is so strong. She uses her arms and legs for everything but if she is laying down, she has difficulty arching her back and lifting her head. Weak core muscles are common with ASD kids. I never realized how important your core is until recently. If you want to learn more read here: http://miriamjang.wordpress.com/2011/03/24/poor-muscle-tone-and-severity-of-autism/
On top of her Autism diagnosis Payton also has sensory processing disorder. Formerly known as "sensory integration dysfunction" is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.
The listening therapy is supposed to help Payton become more focused and attend to task and hopefully start to listen better! :) I will update when we get back and let everyone know our next steps!!! We thank you all so very much for the donations to make this possible. We love every one of you more than I could express.
This girls face says it all.
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