Riding the school bus

Today, Tommy rode the school bus for the first time. Before my husband took Tommy to the intersection near by to wait for the school bus with Tommy, he felt he needed more time to get prepared for this moment. I didn't think about it, until the moment my husband called to tell me that they were waiting for the school bus. This make me realized my precious boy is growing up. He is not my little baby I used to hold a few years ago. He did amazing! He took this new change in his life better than us. He was very excited to ride the bus. Enjoy these priceless photos! 

Francis' Big Milestone

Wow! Francis just did his first 3 independent steps a few minutes ago. There are a lot of thing to talk about my amazing little boy. He keeps being ahead of his age, he is already meeting some milestones of a 12 months baby. He is a blessing! God knows everything and he knows how guilty I feel for not being able to dedicate more time to him, but at the same time, Francis' advanced development is allowing me to dedicate time to Tommy. I am so excited for Francis!

Rescuing my son: Checking the spinal cord alignment

"The spine is the route that the majority of the messages from the brain travel to any other part of the body. The brain over sees the operation of all the activities that go on throughout the body. Most of the functions of the brain are carried out without consciously thinking about them. These messages are sent throughout the body using nerves that run from the top of the head to the tips of the toes,  this what is known as the nervous system. The nervous system is responsible for sending messages throughout the body back and forth from the brain. The majority of these messages go through a long bundle of nerves called the spinal cord, which is protected by your spine. If the spine becomes misaligned, the nerves inside the spine can become pinched and may have difficulty relaying vital messages to and from the brain."

Tommy's spinal cord was studied by a Pediatric Chiropractor Specialist, who has experience working with kids with kids with different needs and abilities.  The spinal cord study was done using a thermal scan and a x-ray. Both, the x-ray and the thermal scam showed something wasn't right with Tommy's neck.  The x-ray showed the neck didn't have the cervical curve. The thermal scan showed a severe inflammation in his neck. The neck's misalignment was making the neck muscles very rigid and causing a lot of inflammation in the neck area. This means Tommy had a neck injury. This misalignment resulted in moving his head forward, which caused lost of balance; poor growth due to the pressure over the pituitary gland. When there is an neck injury, as Tommy's, the pressure and misalignment in the neck can also affect the proper performance of the oral and vision muscles, as well as, sensory issues. When the neck get straight is called Cervical Kyphosis.


Misalignment on the spinal cord hasn't been rule out of the possible cause of my son's muscle weakness and worsen of sensory issues. 


What could cause Tommy's neck Cervical Kyphosis?
We won't know, for sure, how it happened. But I made a little research online and the first page that pup-up was About.com which mentioned the causes of Cervical Kyphosis. Those are:

• The wear and tear of degenerative disks weakens the vertebra whose job it is to hold up the head. Over time this causes the head position to move forward. This in turn causes the normal lordotic curve in the neck to be lost. The result is that the neck begins to straighten.
• Inherited congenital diseases and conditions
• Traumatic injury, such as whiplash, compression fracture, or iatrogenic injury.
• Infection
• Systemic diseases, such as osteoporosis

The highlighted words called my attention. Tommy has a congenital condition that cause low muscle tone and loose joints. An iatrogenic injury could be possible due to the rough movements during Tommy's fights against the nurses in the hospital to keep the oxygen mask on his nose (they had to do it), this has been the only experience I can recall he had a lot pressure on the area of his head and neck. Tommy was hospitalized because of a respiratory infection. Ironically, three of the fives causes got together while my son was hospitalized.

Care of my son's spinal cord

As soon as, we know Tommy's neck injury we started treatment. But before starting treatment, we talked to Dr. W. Hamed about our concerns of Tommy having AAI (atlanto-axis instability). She was very familiar with AAI and how make the alignment without doing a neck rotation. Many are skeptical about Chiropractors, but I personally didn't have any formed conception about a chiropractor before taking Tommy to see one. According to my personal experience, our chiropractor has helped Tommy to get a better connection between the brain and the nervous system. Our chiropractor found something wrong in the C1, C2 and C3 vertebras in the x-ray that the neurosurgeon didn't. Why? The neurosurgeon just focused on the gap between the vertebras, but not how the vertebras were located on top of each other and the neck cervical curve. 


My son's spinal cord adjustment has required techniques done by a professional Chiropractor, supported by the latest technology in chiropractic treatment, as well as, advanced chiropractic methods based on latest science research. During the treatment, it has been recommended to avoid pressure in his neck and the use of a therapeutic pillow or not pillow at all. So my son's spinal core has been professionally treated with amazing results. 

Tommy's cervical curve before treatment was 11°, 

you can see how straight his neck was.

 After 5 months of intensive treatment, 

Currently, Tommy's neck cervical curve is 35°. 

We will continue treatment twice a months

 for 3 more months. The goal is that Tommy's neck 

will be completely aligned in 3 months. 

And after this, the adjustment will decrease once a months

 to maintain the alignment. 

According to About.com website,"Researchers found that patients with curves of 20 degrees or less experienced neck pain associated with the condition." Ironically,  this is something I was observing. Because Tommy can not express what he feels, his behaviors were telling me he was in pain. I even commented several times he was in pain because he used to lay down on the floor without moving, I think this was helping him to relief the pain.


Talking to one of Tommy's caregivers, she mentioned that she remembers that Tommy used to keep his head forward. And we both remember he used to wiggle while he was in a standing position. I am glad other person noticed what I did. I wasn't crazy, something wasn't right with my son. 


Progress
3 months after treatment, Tommy's balance showed improvement. Tommy began to growth and he began to be happy and silly as he used to be. Currently, the Sensory symptoms are beginning to decrease. But there is a lot of more to do to help him to overcome his sensory processing issues. But we are excited for seeing him happy again.  


Recommendation for parents
If your child has low muscle tone and/or loose joints, you should AVOID to put your child to sleep with PILLOWS. The pillows keep the neck curve to the opposite way of the neck natural curve. If there is not a therapeutic pillow is better that the child sleeps on a flat surface. We chose for sleeping without pillow to help Tommy to get the cervical curve again. 

Clean teeth, Beautiful smile!

Last Tuesday, my husband took Tommy to his 6 month dental cleaning. Tommy didn't cooperate, which is typical for a child of his age. But he enjoyed rising his mouth and spiting the water up on the cuspidor as a big boy.

Our son's dentist was very impressed how clean Tommy's teeth were previous to the cleaning. No caries! This proof to me, fluoride is not necessary for preventing caries.  Our son's dentist doesn't recommended fluoride toothpaste for Tommy because fluoride is poison regardless if the kid sallow a very small amount. Fluoride is not recommended for a child with sensory processing either because it worsens sensory issues.

How we have been done to keep Tommy's dental health?
We have been very consistent in the following:
• Starting healthy toothbrushing habits since he was a baby.
• Eating a healthy diet that includes: fruits, vegetables, fat, carbohydrate, proteins and water, even Tommy doesn't like to drink water.
• Using a powered toothbrush.
• Limiting the intake of refine sugar in every possible way.

Our next step in teaching Tommy to keep his dental health is FLOSSING HIS TEETH! Which I think, it will be challenging, but his dentists has been very persistent we should start doing it. So I came with a plan, I hope it will work. Keep tune for my next post in how Tommy has been doing with learning to floss his teeth.

Rescuing my son: Hugs Therapy

There are behavioral symptoms have been reported for many parents with a child with autism and sensory processing disorder (SPD). These behavioral symptoms affect them to build "relationships"and being social. Parents report their kids do not like to be touched, hugged or held. Many children with autism or SPD dislike affection or don't show affection.

My son is affectionate and one of his favarate person in this world always has been his Daddy. I have even written in this blog about how much attached Tommy has been to his Daddy since he was a newborn. Because my husband built a "relationship" with him since Tommy was in the womb. Well, things began to change since last year. Tommy wasn't the same affective little boy as before. He began to dislike give hugs or kisses, Tommy was getting insulated from us.  When My husband commented to me a couple of weeks ago: "I think Tommy doesn't like me anymore." This broke my heart because I know Tommy is affectionate, but due to his sensory issues he shows this behaviors.

About two weeks after my husband's comment, on March 25, something wonderful happened: Tommy spontaneously began to show affection for us. We went to local store and we sat Francis and him on a double seat shopping cart. He began to hug and kiss his little brother to the point Francis was annoyed. Every time, I took Francis out the shopping cart, he was signing and trying to say 'my turn' -his turn to hold the baby. But the best of old, he spontaneously hugged and kissed his daddy. My husband told me, Did you see that? He hugged me and kissed me! My husband also said: "I think it is the first time after the hospitalization Tommy has spontaneously hug me. He also gave me a kiss and a hug me while we were waiting on line to pay. When we came back home, Tommy was playing in the backyard climbing in a little climber he has, my husband was sitting at the kitchen table and Tommy suddenly yelled "DAD!", my husband wasn't looking at him at that moment, so my husband looked at him right away. It seems he wanted my husband paying attention to what he was doing. After this, I heard Tommy yelling "Daddy" when my husband wasn't looking at him. This warmed our hearts! 


Scientist research support the theory that people with autism and autistic like have lower levels of oxytocin hormone, known as the cuddle hormone or the moral molecule as it is called by  Neuroeconomist Paul Zak, who "shows why he believes oxytocin is responsible for trust, empathy and other feelings that help build a stable society." Please see the video below where Paul Zak explained the founding of his experiments about oxytocin. 

“Oxytocin connects us to other people; oxytocin makes us feel what other people feel.

 And it’s easy to cause people’s brains to release oxytocin. 

Let me show you. Come here. Give me a hug.”

~ Paul Zak

There a lot more research to do to prove oxytocin will be an good treatment for autism or sensory behaviors, but it seems there is hope. Currently, there are some physicians who are already administering oxytocin to children as young as 2 years old. Personally, I am convinced the best ways to realized oxytocin are non-invasive ways such as: hugs, kisses and massages.  Those help me to create a bound with my son, which I don't think I will get it by using the nasal spray. Before watching Dr. Zak video, I increased my dosage of hugs to Tommy because I felt it could help me to build a stronger relationship with my son, which would allow me to teach him as before. In the last two months, Tommy and I has gotten closer. We still have our little fights, but not as before. We are having more fun by just freely playing around and Tommy is staying longer when is time of structure play. I am encouraging Tommy to give hugs to our relatives and friends. I would also like to encourage family members and professional working with Tommy to help me increase the oxytocin dosage, with a simple tight hug to greet or praise him. This simple gesture tells him: YOU ARE LOVED, YOU ARE INCLUDED!

Rescuing my son: Testing for food allergy/Sensitivity

Taking Tommy to the Sensory Processing Specialized Center  has played an important role in rescuing my son. The therapists in this place are so passionate about helping kids to overcome their challenges. Miss C., the Occupational Therapist that was assigned to Tommy, was the one who suggested a food allergy test because Tommy was having some type of food allergy. She was very encouraging that we should take Tommy for the test because Tommy had a rash around his mouth and wasn't getting better  —I tried what our pediatrician recommended, but it didn't work. Miss C. told me that she has seen a very similar rash before and it has been due to food allergies. I was looking for an aswer to what happened to Tommy while he was hospitalized. The only allergy test we didn't have was a food allergy, so one more test wouldn't hurt.


We schedule an appoitmnet with the *nutritionist, at the Chiropractic Center, Miss C. recommended to us. We had he appointment on December 2011. During the appointment, I explained everything I was concerned; and for the first time, I felt someone understood me. All the changes on my son had a reason and was not just 'because' it is the way he is due to his genetic disorder, as I was told by a **Doctor. The nutritionist, who is also a chiropractor, checked Tommy's skin. She noticed some eczema on his body, beside rash aound his mouth. She also find little bumps around his elbows, which are signs of possible toxin in his body. She made questions about Tommy's diet and his overall health. After our conversation, she suggested an individualized nutritional intervention, as an action plan, based on my son's nutritional needs and suggested further testing.


Action Plan

1. Supplement. Because of my son genetic disorder and Sensory Processing Disorder (SPD) supplementation has been recommended and added to his daily diet. Vitamin Suplement designed for the nutritional needs for people with Trisomy 21 (T21).  Increasing the inteak of fish oil by supplement and eating fish once a week, as well as, DMG and Vitamin B12, which are recomemnded for kids with sensory behaviors. Vitamin D3 and EGCG are also supplements added to my son's diet. If your child is already taking supplements, bring a list of the supplements and the dosage to the first appointment with your nutritionist. I have found easier for me to do the supplementation with the guidance of the nutritionist. 
2. Blood work. The first blood test recommended by our Nutritionist was E95 Basic food Panel. This test for food allergy or sensitivity to food (always ask for a copy of the test results to keep in your records). It may not be easy to find a healthcare provider that knows about the food sensivitity test. In our case, we worked directly with the nutritionist and sent a copy of the test results to our pediatrician. The lab did the test was 
   Meridian Valley Lab (425-271-8689) and according to their website:
   

   "Diagnosis of Food Allergy Obviously immediate food reaction can be identified easily. However, delayed food reactions are much more difficult to diagnose. According to recent research, IgE antibodies cause immediate food reactions. Delayed food reactions are often associated with IgG4, a subclass of the whole IgG molecule. At Meridian Valley Laboratory, our food allergy test uses a combination IgE and IgG4 protocol. The test can detect both IgE and/or IgG4 allergic reactions. Thus both immediate and delayed food reactions can be detected...
   The E-95 panel contains 95 foods in a wide variety of categories, including milk, cheese, egg, fish, seafood, grains, fruits and vegetables. The A-95 panel contains 95 additional fruits, nuts, vegetables and spices. 2 ml serum is required for these panels. It can be sent via regular first class mail using our prepaid mailer. Specimen collection kits are available."

   If you suspect your child has food allergy or sensitivity causing sensory issues, you should ask your pediatrician if the E95 Basic Food Panel can be done at their office (or their lab), so you can order the test kit and be sent to their office. The pediatrician then processes it and overnights it back to Meridian Valley laboratory.
3. Test Results.  In my son's case, the results of the E95 Basic Food Panel came back POSITIVE for food sensitivity. Tommy has high sensitivity to beef, milk, dairy products, and peanut. He has to completely avoid these foods. He also has food sensitivity to whole egg, lamb, gliadin, gluten, rye, wheat, red shapper, almond and soybeans. While doing my search, I found out that there are kids with an even higher number of food sensitivity; therefore, a food test panel is highly recommended as a start point to decrease the sensory symptoms or behaviors on a child.
4. Elimination of Food. The food the child shows allergy or sensitivity has to be eliminated from his or her diet. In our son's case, it has been eliminated becasue the food sensititivity is an indication his gut it is inflamed and worsen of his sensory issues, which means is not breaking down the nutrients as it should be. So he is in the GFCF diet and the feingold diet recommended for kids with sensory issues. It may take weeks for the family to get adjusted to the child's new diet, but it is worthed.

Food sensitivity has not been rule out as a cause of our son's sensory issues worsen. So nutritional intervention has been recommended to decreasing sensory issues or behaviors.

I believe that groceries store owners have realized that the nurmbers of kids and adults having alergy or food sensitivity are dramaticly increasing; so you may check in your local grocery stores first, if they have an organic alie where you can get some of the food you need for you child's diet.  In our son case, we found out that our local stores had an organic alie, so we can get some of the food he can eat when we run out of groceries for him. We highly recommend Wholefood Market because they have a large variety of organic and healthy food for people with sensitivity or allergy to food. The best of all, they have stores located nationwide, which make things easier when you are planning a family vacation. 

Next Step
Now, there are BIG questions: What did cause all the food sensitivity ? Why food allergies or sensitivity are linked to sensory issues? and What did cause his muscle weakness? To find answers I went back to Tommy's medical records. I find the answer, the root of what caused all this chaos in my son's development.  It is becoming a health issues of our modern age; therefore, as my son's advocate, I have to talk about it. Please keep visiting my blog to know the answer.


------------
*Resource for Parents:
Finding a nutritionist may not be easy, specially, if you are looking for one that specialiased in kids with sensory issues or other diagnosis. In my search, I found Kelly Dorfman, a detective nutritionist who specialiazed in kids with developmental delays. She does appointment via phone, so not matter where you life, she may make an appointment. I am planning to work with her in the future due to she has experience in nutrition for kids with hypotonia (low muscle tone). Due to son's muscle weakness getting worse after the hospitalization, I am concern this may happen again. Her contact information is:

Kelly Dorfman, M.S., L.N.D.

10828 Tuckahoe Way, North Potomac, MD 20878

Website: KellyDorfman.com 

Book:  www.whatseatingyourchild.com

Email: Kelly@KellyDorfman.com

Phone (Office) 301-340-2239

Other websites, I have found helpful are: www.gfcfdiet.com and www.feingold.org I have to highlight: these diets are not specific for people with autism. The nutritional intervention research has been done for kids with T21, but parents of kids with Autism has incorporated these nutritional interventions as a way to treat their kids, having great progress on healing their kids. Any person with sensory issues benefit from these diets. Many families with kids in an entire range of developmental disorders and learning disabilities has reported benefits or progress after the nutritional intervention.


I will also recommended the book "Down syndrome and Vitamin Therapy"book. You you can ask for a complementary copy or download a PDF version at nutrichem.com


**A few words to Parents:
BE STRONG! BELIEVE IN YOUR CHILD'S POTENTIAL REGARDLESS HIS OR HER DIAGNOSIS. There is no one better than you who knows your child. If your mother or father's instincts are telling you that something is not right with your child, FIND ANSWERS! This will let you free of worries and you will find the right treatment for your child.


When I noticed something wasn't right with Tommy, I began to talk to many people as I could. People were supportive and comforted me by saying: "It will time more time for him to recover" or "it is something to expect," one doctor tried to make me see "reality" according to his narrow spectrum, but one person linked me to the answer I was looking for. Nothing could take away the strong feeling in my heart, something wasn't right with Tommy.  I have test results and I can firmly say: I WAS RIGHT! SOMETHING WASN'T RIGHT WITH MY SON! 

Celebrating the World Down Syndrome Day!

Today is the World Down Syndrome day. I am still optimistic about my son's future regardlees all the developmental challanges Tommy has had to face in the last year. He is getting cutter every day (words from a proud mom). Day by day, he is beating Sensory Processing Disorder. So we are very proud of him!

I began a infomal journal (iphone notes) where I write any progress I notice, any new word, any decreased sensory behavior, any little experience he has been confident to do on his own. We are very blessed with having Tommy in our lives, he teaches us what really matters in life and help us to keep our feet on earth. He shows us that everything can be possible no matter how long it could take. He gives me hope when I feel I cannot go on anymore.

My mom's dream is that Tommy learns to play the piano, so she has given cute wooden pianos with real piano keys since he was a baby. Tommy has a natural love for music that goes beyond of what is expected for a child of his age. Since Tommy was about 18 months old he could know what song was being played by just hearing the instrumental music. Recently, we discovered he can also play the tunes of a song he sings with his drum set. My husband discovered a few weeks ago. So we will support him in his love for music and we will see what happen. I am glad his speech therapist has also realized Tommy's natural ability for music. When she met Tommy last year, she realized Tommy could know what song was play by just hearing the instrumental music, so she incorporated a few minutes of piano play in her therapist sessions with him.

Tommy is officially learning to play the piano. His first piano lesson was this past Monday. Tommy's piano teacher was impressed of Tommy's natural ability for music, too. He got "stars" in every area he practiced during his first lesson. His teacher was very excited and so did I! Watching him in front of the piano and following the teachers rhythm by making music with their hands, gave me a good feeling. This is the perfect fit for him! So this is a great way to celebrate the World Down syndrome Day. Our kids are all about abilities, we just have to give them the opportunity to try.

Happy World Down Syndrome Day!

Beating Milestone charts

My kids don't follow milestone charts at all. Francis is reaching many milestone ahead in deferent areas of his development at the same time. We are monitoring his development with our local Parents as Teacher organization. The teacher who visit us is very impressed of things Francis is doing advanced for his age. She also commented in her last visit, the way Francis can progress in multiple developmental areas at the same time is not typical for his age, this is more expected for a two year old child who is more skilled and has more control or his or her body.

Because my first son's genetic disorder,  I had have learned many things about child development; therefore, this has helped me to realize Francis' development has been different since he was a newborn. 

We are lucky of having family members who are helping us babysitting Francis and they also witness things are a little bit different with Francis.

Things Francis is doing at his 7 1/2 months are:
- Cruising holding the coffee table.
- Letting my hands free and standing without support for a longer period of time.
- Opening droors
- Standing by putting his hands in flat surfaces
- Imitating people around him.
- Imitating the cow sound "mooooh."
- Babbling sounds such as Taaah, atah, baba, papa, mama, yah, ayah
- Believe it or not, sorting three shapes (circle, square and triangle)
- Finger feeding on his own.

- Drinking from a sippy cup. Needs more practice.

- Beginning to transfer from one furniture to a near furniture
- Beginning to step forward with hands supported (about 3 to 4 steps).
- Beginning to climb

This video shows Francis sorting by shape at his 7 1/2 month. 

We have never practiced with him sorting by shape. 

I realized he can sort by shape because in the 

milestone guide, provided by Parents as Teacher, from 8 to 14 months

says: "Look for your baby to put a round shape into a shape sorter." 

and in the ways we as parent can help says:

"Help him fit a round shape into a simple shape sorter."

He already knew the shapes and had the coordination to do it.

People think this is cool, I think  this will bring challenges if he

keeps being developmentally advanced.