Saturday, May 24, 2014

Dr. Michael Merzenich: Neurological Corrections for language impartement



Dr. Michael Merzenich is one of my favorite neuroscientist. He is one of the most prominent scientist in the world who works with neuro-plasticity, which allows the brain to get stronger and heal. He believe that neurological corrections can be done in individuals with language impairment. He mentions something interesting in the video, "CONTRIVED ENVIRONMENT," which means modeling situations to train the brain to get stronger in the weak area. Which I think, this is the main reason many interventions are focusing in training parents/family because they spend more time with the child so the child's natural environment can become in contrived environment to get the brain stronger. After my self-education in neuroscience, I have discovered that there is so much hope for our kids; therefore, what parents with kids with different abilities need is money to pay for the right intervention for their kids with the top ranking specialists.  I wish I could have the money to hire Dr. Michael Merzenich to work with my boy! 

Friday, May 23, 2014

Second Appoitment with Dr. Sultan

Tommy had his second appointment with Dr. Sultan yesterday. We went over the test results and as I was expecting it, many things are wrong. Irinicly, I don't feel sad about it. I am happy because I knew Tommy has some issues and I knew what the issues were, but I didn't have a doctor who would listen or with the expertise in this matter.

Test Results
The lab shows that Tommy has extremely big cells for his age. This an indication that there is a problem in Tommy's methalytion cycle, which affects his MITOCHONDRIA. So my search for a doctor has ended. I knew Tommy has issues with the mitochondria and I brought it up to his peidatrician. The pediatritian told me he doesn't have it because Tommy is not a child that gets sick quiet often. Which surprised me that the pediatrician didn't know the difference between Mitochondrial disease and Mitrochrondial dysfuntion. I was talking about Mitochondria dysfuntion, but the pediatrician kept focused on Mitochondrial disease. But she encouraged me to follow my institns and get a speciallist's openion in this matter. So the next steps is Vitamin B12 shots twice a week, so I am trying to pick what days would be better. I secretly gave oral vitamin B12 to Tommy since December to April and the difference was very noticible. So I just want to start these shots to see what surprises will come with it.

Tommy has low iron levels. He was surprised that it wasn't lower. So I explained to him that we are supplementing with Iron because I requested labs at Children's hospital when Tommy began to regress. So he said this is the reasson his level wasn't even lower. So he changed Tommy's iron for one that it is given to toddlers and the best of all, it is cheaper than the one I was giving him. 

Tommy has candida, a nasty fungus. So he will be taken a medicine for at least 6 months and then Dr. Sultan will see if he needs to take it for a longer period of time. He said that kids with Autism has a lot of issues with candida and takes a lot of time to get this fungus on balance.

I will have to get data for 5 days about Tommy's themperture because Dr. Sultan will do more testing about Tommy's thyroid funtion. We already know Tommy's have hypothyroidism, but Dr. Sultan thinks that something is not working fine in Tommy's thyroid even when he is taking his medication, which I think he is right because Tommy also has high cholestherol even when he doesn't eat bad fat and I am very extrict with his diet. So there is connection between thyroid dysfuntion and high choletherol. It can be genetic coming form my side. This is an issue my mom, my dad, my sister and I have. I just recently discover that Tommy's hands were cold and it was a hot day. This called my attention becuase I was like that when I was a child and I had wierd fevers. These are symptoms of something is going wrong with the thyroid. So I will be checking my thyroid, too. Dr. Sultan said that regardless that it is genetic, it should be treated now before it becomes in a real problem. I LOVE THIS DOCTOR! I wanted to hug him yesterday.

Changes on Diet & Supplementation
I knew this will come. I even posted about my hard feeling that this doctor would do drastic changes in Tommy's diet. Tommy's diet is going to be even more restricted, so from now on, absolubley every food and every drink will have to be provided for us whereever he goes, which I am use to it, but the drinks it was something we always could get in public places, but not anymore.
  • No chocolate
  • No yeast (No vinager or salad dressings)
  • No sugar at all. Except for some stevia. 
  • No oats
  • Everything organic 
  • Water. 22 oz. per day is the ideal for my son
Why, No all these foods?
Chocolate because it raises the same brain chemicals (neurotransmitters) that some drugs do. We don't want this because Tommy is already having neurotransmitter issues. I recently discoverd that some food such as, bananas and berries increase dopamine, which is not good for the brain when it has high levels of dopamine. We removed bananas and strawberries, I have noticed an improvement in his behaviors. So I am expecting more food to be removed when we get to part of the neurotransmitter treatment that we will target his brain inflamation.

No Sugar and no Yeast because they feed the yeast in Tommy's stomach. Candida causes many of the Autism symptoms and it is really hard to get it back on balance.  

No oats becaue many oats  are processed in facilities that process wheat, so they get contaminated. There are many kids with Autism who has showed sensitivity to oats when they have gluten intolerance regardless that the oats are gluten-free. So the best way, it is to avoid it.

Everything organic because Dr. Sultan suspects Tommy has high levels of haevy metals. This won't add more contaminants in his system. We do mostly orgnic with him, but not everything. So we will know more about the heavy meatls in Tommy's body in the future when get to this stage of the treatment. 

A lot of water which is important for natural detoxification. We are doing it already, so I am offering water to Tommy quiet often, rather than give him a lot of water at once.

Dr. Sultan also changed my son's vitamins to one that it is specific for kids with Autism. I showed to him the jar of the vitamin powder we use, which is specifically for kids with Down syndrome. He checked the ingridients and said that some ingrediets are missing and the dossage was too low for what my son's need because kids with Autims need higher amounts of vitamins. The best of all this new vitamin cost half of the price of what I pay for the vitamins for kids with Down syndrome. But the most important fact is that the Autism vitamin is hypoallergenic. What many people don't know is that food intolerance is "a type of allergy" that kills slowly.


God is listening to my prayers! I have never asked him for a miracle, I just ask for wisdom and the right people who will help me to unlock my son’s true potential. Thanks God that I found this doctor.  

Tuesday, May 20, 2014

Tommy is scaping from the Autism Jail

Woww! God is using me to witness his wonders. Tommy just came to me with his arms extended and told me: "Mommy come here" and hugged me. My son was born with Down syndrome, but it is not what is holding him back. What I just witness is a very typical behavior of some kids with Autism, they don't talk and suddenly something makes a connection and they open up. Autism keeps Tommy prisoner, but I won't stop until I get him free. He is starting to scape from the Autism Jail!

Monday, May 19, 2014

My 2 year old helping to get lunch ready

I want the best for my boys like any parent and 
The best way I can do for them is to nurture their curiosity.
Enjoy the video of my 2 year old helping to get the lunch ready today. 
The knife Francis is using is from the Curious Chef 3-Piece Nylon Knife Set, 
which has been designed for little hands.

Tommy's isolation and withdraw from this world (Part 3)

After being in charge for 5 months of my son's intervention things are getting better. I feel bad sometimes that I couldn't put my intervention together earlier, but I guess things happen when they have to happen and not when we want to.

We went to Tommy's school on May 15 becuase of his Kindergarten graduation. Everytime I go there, it is noticible the friendly atmosphere in the entire school. When we were walking to the event room, we saw two kids in the hallway. When the girl passed by, she said  "Hi" to us with a big welcoming smile like she knew us from before; then, a 10 year old boy greeted us and began to talk to Francis and asked how old Francis was, and then, he said he has 4 year old bother and he is very proud of his little brother. This a very welcoming school community from the little ones to the grown ups. I am glad that they deeply focus in the STOP BULLING program where everybody participates: staff, students from Kindergarten to Senior High school and even parents. I had to take a test about stop bulling when I volunteer for the school. The school truly care for the students's growth in all aspects, which is probably the main reason why they keep being among the top three best school district in our state.

During the informal Kindergarten Graduation, I could see how much Tommy has progressed, and it seems that school is making more sense for him. His sensory issues are improving! But still there is a lot to do in the tactile and auditory area. He was able to be in the crowd, so he didn't have a panic attack. This doesn't mean that it didn't bather him, but he could handle it better, which made me feel good. How did I know he was bather even when he didn't panic? Because of his body language (repetitive behaviors). He celebrated with his classmates at the playground by being one more of the 27 kindergartners who where actively playing. He was jumping, running and climbing as the other kids. Last year, being at the playground with other kids it was a torture for him. It was interesting to see a girl coming towards Tommy and asked him for a hug, and she said to me: He likes me sometimes! And gave Tommy a tight hug and Tommy hugged her, too.

Watch the video below. You can see Tommy running; then, watch the kids that are on the ground. They quickly comforted their classmate who felt. None of the grown ups realized, including me, as quick as the kids did that the girl felt and they looked for help. Tommy's teacher told me that her students are always watching for Tommy and this have make a positive impact in all of them to be more caring for others and I could see it that day.


I could see during Tommy's graduation that my hard work to get him out of isolation is giving results. I have taken a diffrent route of what most parents due as far as intervensions, but I have done it based on sciencist research and educating my self on technicques from different approaches that suit Tommy's unique needs. AUTISM IS TREATABLE! One of my main sources for self education is Autism Reaserch Institute because they have decades working on understanding and treating Autism. I am realistic that Tommy may not completely overcome Autism due to his genetic disorder, but the possibility is there. Probably he will be one of the firsts children with Down syndrome medically diagnosed with Autism who will overcome Autism with data to proof it. Remember, I have a superboy! He already overcame his 'Asthma' diagnosis in 9 months, so nothing is written on stone.






My little caterpillar will become in a beautiful butterfly that will fly up, up, and away one day.
Faith, Courage and Hope is all what it takes 
to conquer the impossibles.  

THE SKY IS THE LIMIT!



Thursday, May 8, 2014

When God Made Special Need Mothers he added a few extra ingredients! | Parenting Special Needs Magazine

When God Made Special Need Mothers he added a few extra ingredients! | Parenting Special Needs Magazine



Click on the link above. This is the best description of Mothers of children with special needs that I have read. It is to the reality we face everyday. I like this a lot, Specially the extra set of eyes!



Happy Mother's Day!

Monday, May 5, 2014

First round of laboratory testing

Here is our super boy waiting for his blood to be taken.
I am glad daddy took him because he does better when daddy is around,
the picture talks by itself.


He gave the nurses a hard time because he was moving too much,
but they were able to take the 4 tubes of blood they were needing.  



Now, we will wait for the test results and we will begin
his Autism intervention with his new doctor. 
I know many test results will show something wrong,
but we need to know for helping him. 

THE SKY IS THE LIMIT!

Consider to donate to Down Syndrome Options


Please consider to donate to Down Syndrome Options for the organizers of Down Syndrome Track to travel to the AutismOne Conference in Chicago. These are the moms who have empowered me in my journey with my son. See below the message of the President of Down syndrome Options:


Chicago or Bust!

Would you like to Skype or chat on the phone with me?
Or with Kristen Morrison of Naturally Better Kids?
Geralyn Spiesz of the Down Syndrome Action Plan?
Leslie Bewer Boswell, thyroid wellness advocate? 
or Jane Winans, mom to Lydia?

Then simply donate to help me and the rest of the Down Syndrome OPTIONs team travel to Chicago! 



We have spent countless hours organizing the Down syndrome track at the AutismOne conference, often digging into our own pockets to make this important event possible. 
Check out these other fun rewards!

Our loved ones with Down syndrome need more options to thrive...
...OPTIONs needs your support to carry this message forward to parents, teachers, physicians and the community! 

Thanks so much for your consideration!

Andi Durkin

Saturday, May 3, 2014

Unlocking the true potential of Kids with T21

We live a in paradigmatic society that resist to change. But mom's like me, who believe that the true potential of our kids with Down syndrome hasn't been unlocked yet, have broken and will continue breaking the paradigms that surround our kids with Down syndrome. Our loves for them has brought to us an unbreakable faith and a strong believe that have taking us to deeply dig into scientist researches and we have discovered a lot information that has been kept away from us. The more we look for answers to our questions, the more we realize that there is a lot more than it can be done for our kids.


Michael Leon, UCI professor of neurobiology and behavior, explains how challenges due to neurological disorders and genetic disorders –including Down syndrome– can be reversed or very much emulated by a sensory enrichment environment. Guess what! Scientists have known this for a long time. But enough effort hasn't been put it in developing proper interventions for our kids. Why? Because we live in a paradigmatic society. See the video below where Professor Leon talks about sensory enrichment environment to reverse neurological disorders:  



A good living example of what a sensory enrichment environment can do for kids with Down syndrome is Pablo Pineda. His mom truly believed that her son was more capable of his Down syndrome label. Pablo Pineda is a proven example of what Prof. Leon explains in his presentation about sensory enrichment environment. Here is Pablo's short biography:

From Wikipedia, the free encyclopedia

Pablo Pineda in 2010
Pablo Pineda (born 1974) is a Spanish actor who received the Silver Shell award at the 2009 San Sebastián International Film Festival for his performance in the film Yo Tambien.[1] In the film he plays the role of a university graduate with Down syndrome, which is quite similar to his real life.
Pineda lives in Málaga and has worked at the municipality.[2] He holds a diploma in Teaching and a BA in Educational psychology. He was the first student with Down syndrome in Europe to obtain a university degree.[3] In the future he wants to make his career in teaching, instead of acting.[4][5] Upon his arrival back to Málaga, Francisco de la Torre, the mayor of the city, welcomed him with the "Shield of the City" award on behalf of the city council.[6] At the time he was promoting his film and giving lectures on incapacity and education, as he has been doing for many years.
Pineda currently works with the Adecco Foundation in Spain, giving presentations at conferences on the labour-integration plan that the foundation is carrying out with him.[3] Pablo has recently talked in Colombia (Bogota, Medellin), demonstrating the social inclusion of people with disabilities.
Pineda also collaborates with the "Lo que de verdad importa" Foundation.

Pablo Pinda is a person with Down syndrome who has obtained two bachelors degree. The universtiy's curriculum was not modified for him. So he obtained his diplomas as you and me. He didn't study acting, but he won an international award for his performance in the movie "Me too." He is busy traveling to different countries as a motivational speaker. He has gotten beyond of what this paradigmatic society could ever imaging because he has lived in a enriched environment nurture by his family, Pablo even mentioned this in his interviews to 20Minutes.com. Click here for the complete interview in Spanish. Bellow there is a translation of some questions of the interview:
Pablo Pineda: "My environment has stimulated me, I am not exceptional"
Perhaps there are people who think that "Pablo has studied a career because the Down syndrome didn't affect him much".  The little or much does not matter. What affects is what surrounds that child. The family is essential. 
Your family is different? Parents of children with Down often treating them always as a child. My mother also behaves like that with me. But it is more pronounced with Down syndrome. We are overprotected and we are treated between cottons. Even some parents prefer that we do not go to school. My family treats me as a child and not as a Down syndrome. My parents have always demanded that I go out, make friends, that I don't stay at home. They ARGUED that I attended school. My advice is to stimulate the child a lot and trust in his/her potential...
Does the integration is that all people with Down syndrome can reach the university as you? I don't like the word "integration." It is a bit fascistic if you are imperfect, so you have to adapt to the society that is perfect. I opted for the "normalization." Means the opposite, the  society has to adapt to the difference. In such standardization there is no place for a disease (disability)...
Trailer of the Movie "Me Too"

Message from Pablo Pineda to Enterprises

When I promised to my son that I will never let him down –he was an unborn baby— I truly meant it.  God is in my side, guiding me and giving me the strength to get to the bottom line of many things that have been kept away from us. I know that my battle to go against this paradigmatic society is not going to be easy. But I am not along. My love for my son has kept me looking for a doctor who will be go beyond of what most doctors do. I found him, he specializes in Environmental Medicine, a medicine practice that is based in human biology and chemistry and their interaction with environmental factors. For my surprised, this type of medicine practice works to find the underline causes of developmental delays (brain inflammation, interrupted methylation cycle, side effect to medications, etc.) regardless if the person has a genetic disorder. There is a small group of moms that have discovered that their kids illnesses and cognitive decline due to Down syndrome can be prevented or slow down if the underline causes are detected earlier. Living in a global world has brought us together, now we are united and we won't stop until we change people's mind, so our kids can get the the right medical treatments.

Mother's day is coming up, the best mother day's gift I can receive is your signature in the petition of *Down Syndrome Options: Click here! So the health care guidance for our kids can be revised and preventive care can be included. If this petition gets over 2,000 signatures, more stories as Pablo Pineda's will become public. There are stories of kids with Down syndrome that are unknown, people need to see it to believe it.  These kids are doing exceptional due to their moms chose a different path to stimulate them and they are doing many things as their neuro-typical peers. But we won't be able to make these stories public without your support. Please sign the petition and pass it along to a friend or relative who may be interested in supporting us!

THE SKY IS THE LIMIT!
_______________

*The Mission of Down Syndrome Options is to increase awareness and educate parents and doctors on options for individuals with Down syndrome to help improve speech and learning as well as physical, emotional, social and intellectual growth and development. These options first, do no harm and second, look to epigenetic, neurological, biomedical, nutritional and environmental interventions which are supported by scientific information, clinical experience and parent observations