Rescuing my son: Finding our way to recovery

Almost 4 years ago, I declared the war to Autism and I began to fight back in the Chromosomal War. Literally, it is a war! According to DesabilityScoop.com, Autism Moms Have Stress Similar To Combat Soldiers. The article said what we moms of a child with Autism don't talk much:

Mothers of those with autism reported spending at least two hours more each day care-giving than mothers of children without disabilities. On any given day these moms were also twice as likely to be tired and three times as likely to have experienced a stressful event...

Despite all of this, mothers of an individual with autism were just as likely to have positive experiences each day, volunteer or support their peers as those whose children have no developmental disability, researchers found.

The levels of stress we have to deal is beyond us, but we moms are strong warriors because it is how God made us. The love for our kids makes us keep going because we know something can be done to help them and nobody else is going to get it done. I realized it when I call to the hospital to tell them that Tommy was regressing and they didn't offer any help. 

I discovered the missing piece in the puzzle of what happened to Tommy back in December, 2013. It is frustrated that it is almost a year that I discovered it and  I haven't been able to get Tommy tested for Mitochondrial dysfunction yet. What it is most frustrating is that the doctor in charge of our Local Down syndrome clinic specializes in mitochondrial dysfunction and her office was the first place I called. Doctors are forgetting the relationship between doctor/patient because health care has became a very lucrative business. 

I am so happy that I have found an ally in my chromosomal war, Dr. Sultan. He is making a huge difference in how to fight back Autism. It feels good having an ally! Dr. Sultan is looking into testing Tommy for mitochondrial dysfunction through Genova lab, this lab specializes in looking for answers when nobody else can. So I am praying, this will work because we wouldn't have to travel. Dr. Sultan's treatment plan for Tommy is formulated for his whole-body health. His treatment will also targets toxicity in the environment, and this is crucial to restore the mitochondria; somehow, we are helping Tommy with his mitochondrial dysfuntion. 

I just remember when I posted that I found Dr. Sultan. I had the strong feeling that he would make me work and would do things more challenging for the benefit of my son. Howsoever, I don't complain about it, he is the doctor any patient should have. He truly cares about Tommy's health, so I just do whatever he says because he has earned my trust, which is what an ally does.

The new recommendation of Doctor Sultan is a free-chemical house. I have to read a handout of 78 pages and a book, so we can flip the entire house for a less polluted indoor air. So the list of things we have to get out of the house is huge, so I am starting first for the kitchen, and then, other common areas in the house. We will have to get every harmful chemical out of the house, we will have to get 100% cotton clothing, we will have to stop using plastic, we will have to get safe cookware and so on. Because: 

IF YOU CAN NOT EAT IT, YOU CAN'T BREATH IT!    

This statement from the Dr. Sultan completely

opened my eyes on how toxic our house is.

I already got some cleaning products out of the house. They have being replaced by vinegar, salt, baking soda and olive oil, which will help us to save a lot of money. I cleaned yesterday with vinegar. I was happy with the results because there is not a difference on cleaning with vinegar than cleaning with cleaning products. 

I have two options on my chromosomal war, to fight or surrender. I will never surrender because I know how to win this war. I know we are in our way to recovery. God is putting the knowledge in front of me and the allies. I know he listens to my prayers, so he will also provide the sources to get everything done.

THE SKY IS THE LIMIT! 

Can kids with Down beat standardized tests?

Back in May, I posted "Unlocking the true potential of Kids with T21" where I showed Professor Michael Leon's conference where he explained how challenges due to neurological disorders and genetic disorders –including Down syndrome– can be reversed or very much emulated by a sensory enrichment environment. Scientist has known this forever, but there is not enough effort put it into developing proper interventions for our kids. Howsoever, the love for our kids has brought moms, like me, to dig into scientist research and now things that seemed impossible 30 years ago are becoming the norm for some kids with Down syndrome, whose parents have discovered that there is a better way to treat our kids. 

Can kids with Down beat standardized tests? 
Yes! It can be possible. I want to share Jett's story. Jett was born with Down syndrome. He faced heart surgery. He used to also have autistic behaviors. Howsoever, his family decided they will fight for Jett and today, Jett is a 4 year old who is changing the way people think about people with Down syndrome. Jett's mom is an amazing person. She was the first one who give me support to keep going in my journey with Tommy's Autism diagnosis. Here is what Jett's moms have to share:


"We had his parent/teacher meeting tonight and she said that all the kids love Jett and she has to tell them that he only has two sides so only two kids and play with him at a time. (She even told me that the mom before us had just said that her son talks about Jett all the time!) She also had the results from the standardized test called the... Peabody?? Anyway, when the range was like 4-11, he got scores like 26! 

She said she'd never had a kid as advanced as Jett and wanted to know how to best challenge him and keep him interested.

I volunteer in her class from time to time to work with the kids that need it and she said she's learned a lot from me. She went on to say that if/when I started a school, she would love to work there!

She wondered if Jett would benefit much from kindergarten since there's not much time to play (!?!) and it's a lot of sitting with instruction about things that he already knows.
Well, I guess I'd better get my school going then!

This is not the first time that I have heard about this. It is possible that some kids with Down syndrome reach normal IQ. I has known about a non-verbal girl with Down syndrome who IQ is 100. I also knew about a young man who graduated from college and got a regular job as any other young man of his age. This would never be considered as possible 30 years ago. But the parents who has the courage to think out of the box and brake paradigms in these harsh society are making a huge difference in the quality of life of their children's with Down syndrome. 

THE SKY IS THE LIMIT!

My charming boy

It is so excited to watch my baby growing up. It is so excited to watch how much he has gotten into

his personality from my husband and I, which make him a charming boy.

My husband and I are very stubborn, so does Francis. Uff! Don't even try to change our minds! 

My husband is a natural leader and a people person, so does Francis. Everybody likes Francis wherever his goes. At the pre-school, he is very popular among his little friends and the staff. He is known as the dinosaur boy!

My husband and I are persistent on what we want to achieve. He is very persistent of what he wants since he was a baby! When most babies are easily to distract from what they want, this never happened with Francis and it is still this way.

I have a creative mind since I remember, so does Francis. Before he was 18 month, he began to describe his scribbles. At age of two, he was already making up stories and his imagination

is getting better and better the most he is exposed to wonderful things around the world. 

Here is Francis at the preschool playing

with his favorite wooden blocks. 

He built a dolphin park!

Her is Francis drawing of a roller coaster.

He has been asking for a roller coaster for Christmas

 since a couples of months ago.

So I am in my conquer of getting a roller coaster for him. 

He has in mind a big roller coaster and those are for bigger kids

and quite expensive, so I am searching around to see if

I can find something that fits what Francis wants for Christmas.

Prayers for my boy!

It took me tree years to put the puzzle together to what happened to my son. Now, I have a broad understanding what happened and how to help him. I keep praying for wisdom, so I can work with my son to overcome AUTISM. I keep praying for God sending the right people in our path, so they can help Tommy to reach his full potential. God is giving me proof that he is listening because the scicist information that I can handle today, I wasn't able to understand it three years ago. The new therapists are just what I was asking for, the truly can read Tommy and they told me what exactly I think Tommy's issues are without me telling them. His challenges are based on his Autism diagnosis and they are giving me the solution for it.

The more I know and the more I realized that the sources to treat AUTISM are out there. The issue in overcoming Autism is that the medical community is divided, so many parents are not aware that is more that it can be done for their kids than what their doctors are telling them. On the other hand, many other parents don't have the money to paid for these treatments that heal the underline causes of Autism. Just to give you an idea how expensive is to treat underline causes of AUTISM:

High potency Probiotic (450 billion)        $110.00
Vitamins for kids with Autism                    $74.00
B12 Injections                                             $35.00
Doctor Visit                                               $190.00
Yeast Treatment                                          $22.00
Natural Thyroid                                          $15.00
Iron                                                             $12.00
Craneo Sacral Therapy                             $120.00
Total                                                        $578.00

This list doesn't include special diet, therapies and neuro-developmental program or other expenses that varies every months. Depending of what is needed in a month, we can have two visits to the doctor that could be added to the medical expenses. So the Doctors visit in a month could be for $380.00.

So I have realized that I have to pray for sources to cover for the expenses of getting him seeing for specialist in mitochondrial dysfuntion. I will be applying for grants; hopefully, they will go through so we can travel to other state to see an specialist in this area. Please send your prayers in our way, so we can get the soruces to put in place all the treatments and approaches that will help Tommy to reach his full potential.

THE SKY IS THE LIMIT!

Free Online Conference: Second Openion Series

I cannot keep this information to myself. So I decided to share about the Conference Second Openion Series, The digestion sessions. The main focus is INTERNAL INFLAMATION in the body that translate to the brain, and then, creates deaseas such rheumatoid arthritis, diabitis, schizophrenia, etc. All this diseases are related to what we eat that creates internal inflamation that changes the epignetic of the genes. This is the clue to fight many diseases, disorders and symdromes, including preventing and cure AUTISM. The conference is not about Autism, but it talks about of the brain and stomach connection and their inflamation that is find in kids with Autism. Here is the link, really valuable information! Click here to go to the free conference: http://digestionsessions.com

What do Autism and Down syndrome have in common?

They have a lot in common.  Autism and Down syndrome have the same roots or causes for many of their neurological issues. Two of the common underline causes for their brains not to work properly are Neuro-immunity and Mitochondrial dysfunction.

What is Neuro-immunity?

Neuro-inmmunity is brain inflammation. In the video below, Dr. Kendal Steward explains neuro-immunity, how common is in the population and how neuro-immune disorders like Alzheimer and Autism are very alike. 

Dr. Steward mentioned in the video above that treating Mitochondrial dysfunction is a factor to heal Autism.  To have a better understanding of Mitochondrial dysfunction and its link with Autism, I have been following Dr. Suzanne Goh's scientist research. She has put together a seminar of 5 videos that explain Mitochondrial dysfunction in kids with Autism.

To watch all 5 videos of the seminar click HERE.

Now that I know what the root of the problem are, there is an issue: To find a Doctor who practices advanced medicine willing to work with me. Many doctors are not used to have patients with a good idea of what the health issue may be. On the other hand, people with Down syndrome get overlooked to be treated for Neuro-immunity/Mitochondrial dysfunction, even when there is enough scientist evidence that has proved they have them. On top of these issues, Neuro-immunity/Mitochondrial dysfunction are mystery diagnosis, so there are not many specialist with the training to treat them. Here is when I have asked to God:

"Is this the reason that you sent Autism in our way?"

More laws are starting to get into place for kids with Autism getting medical help, so I am using this in the benefit of my son's well being because his Down syndrome diagnosis is not helping much. His Autism diagnosis is secretly helping in the alignment of challenges due to his Down syndrome diagnosis, such as Neuro-immunity/Mitochondrial dysfunction. Finding medical help for Tommy would be a lot harder, or impossible, if he wouldn't have Autism. 

Finding a Doctor willing to work with me, it is going to be hard in our state. I have contacted two out of three doctors who specialized in Mitochondrial disorders near us. They are not willing to get more into detail to find the reason for my son's regressions. But this won't stop me! There are a lot more sources in bigger states.  I have been following the work of  Dr. Kendal Stewart and Dr. Suzanne Goh for over a year. They both are experienced neurologists and they both have made big contributions to modern science in the benefit of kids with Autism.

• Dr.  Kendal Steward created the Sensory View test. According to Neuro Sensory of America, "Sensory View™, the first web enabled, comprehensive Neuro-Sensory diagnostic system. Sensory View™ represents a combination of seven well recognized diagnostic tests in an innovative and patented protocol. All the medical devices and tests are FDA approved and insurance reimbursable. Click HERE to watch a video that explained how this diagnostic software works for kids Autism and other neurological disorders.
• "Dr. Suzanne Goh is a board-certified pediatric neurologist with expertise in the evaluation and treatment of children with neurological conditions that impact brain development, cognition, and behavior. Dr. Goh received her Bachelors of Arts degree, summa cum laude, in History and Science from Harvard University (1993-1997). She went on to attend Oxford University as a Rhodes Scholar (1997-1999). In 2004, she graduated from Harvard Medical School, cum laude. She is consider a pioneer in finding the link of Mitochondrial Dysfunction as a Neurological Subtype of Autism Spectrum Disorder, evidence where fund in Brain Imaging of individuals with Autism.

As a parent we should be aware of mitochondrial dysfunction signs mention by Dr. Goh in the video above and look for medical help:

Graphic taken from Dr. Goh's video

Tommy has all the mitochondrial dysfunction signs.

There is a large family health history linked to mitochondrial dysfunction 
in our families, which make kids of  our family more likely to develop Autism.

Tommy received a sedative medication, a strong antibiotic and steroids as part of the treatment for RSV. 

Since he wake up from the sedation 3 years ago, he has never been 

the same child. All three medications are known for interfering with the mitochondria. 

This is the reason I am desperately looking for Tommy's Mitochondrial dysfunction as a diagnosis. 

Thinking to travel and pay for the services of Dr. Steward or Dr. Goh seems impossible. Howsoever, last year, it was impossible to find a DAN doctor, and when I wasn't expected it, I found Dr. Sultan. So I will be persistent as I have always been, and sooner or later, I will be on my way to Texas to meet Dr. Steward or in my way to California to meet Dr. Goh. Or anywhere else where I find the right doctor to treat my son regardless his genetic disorder. God is on my side!

THE SKY IS THE LIMITED!

TO PARENTS:

If you think your child may have mitochondrial dysfunction, here is document you can print out and share with your child's doctor. It explains how Mitochondrial dysfunction is linked to Autism, click HERE to download: An Educational Webinar about Autism and Mitochondrial Function by Dr. Suzanne Goh. It is a 5 page document.

Halloween Recap

October 31 means a lot more than just Halloween to us. It was the day our lives changed forever. Seven years ago, we received the diagnosed for Trisomy 21 for our unborn baby. So I always had in the back of my mind to celebrate Halloween very big to celebrate my son's diagnosis. Howsoever, Autism came uninvited to our journey; then, all the joy went away because Tommy wasn't able to be connected with this world. Even when it has been three long and hard years, this year has been the year of HOPE for Tommy. Some things related to his AUTISM diagnosis have disappeared and other have gotten better. Last night, Tommy truly enjoy Halloween as I never expected. I could see by the end that he was getting overstimulated and began to stem, but still he was able to keep going with the celebration. I was so rewarding seeing him enjoying Halloween, this is definitely a huge progress in Tommy overcoming AUTISM.

Not just Tommy had fun, my charming baby Francis enjoyed himself as always. Francis has brought whole new dynamic to the entire family, which make us to realize how precious life is and how much we should celebrate alone the way. Francis invited his Aunt and grandparents to Trick or Treating with him. He personally make sure that our Aunt would come to trick or treating. He even made me to call his grandparents so he could personally invite them to trick or treating. Francis thought me a lesson, regardless how hard things are we should celebrate all the good things regardless how big or small they are. So I will retake my plan of celebrating Tommy's Trisomy's diagnosis. So from now on, we will invite relatives and friends every October 31 to trick or treating with us in our neighborhood. And when budget and the weather allows it, celebrating with a Halloween party at our house.

HAPPY HALLOWEEN!

First Speech Therapy session at Home

Today was the first Speech Therapy session at Home. I am loving it. Really! It is so much better. While she was with Tommy, I could focus 100% on Francis and we had a good time. I also could do laundry! Mrs. F. said Tommy talks and says a lot. So TOMMY IS VERBAL, something we all around Tommy needs to understand. Tommy's issue is that he cannot communicate. He needs to learn that communication is back and force between him and other person. He needs to learn to say all the words he knows in a context while looking at a person rather than randomly when he is running, jumping or on his own, which is very common to see in kids with AUTISM. Mrs. F. has said goals to build his play skills, and then, to communicate.

Working with Mrs. F. is definitely more organized and enticing for Tommy of what I was doing. I will follow her communication routine while playing with Tommy. This will help me to keep working on his play skills for the neuro-developmental program.  I decided to get a professional involved because it was becoming too hard to get Tommy to play with toys. If we met this developmental skills Tommy will be able to keep advancing in the developmental ladder. I feel more empowered now to help him!

THE SKY IS THE LIMIT!