Treating Sensory Processing with Craniosacral Therapy.

After 2 years of an intensive study, on my end, about what happened to my son after January 20, 2011, I truly feel Tommy is starting to recover to whatever happened to him. In my search for answers, I have also found ways to help him. A way we are helping Tommy to heal is a combination of Craniosacral and massage therapy.

"CranioSacral Therapy(CST) has been proved to be one of the helpful alternative therapy for autistic children. It uses gentle hands-on touch to decease counteract stress and strain on central nervous system. This CST Therapy must be administered by trained experts, like chiropractors, massage therapists, or physical therapists.

Cranial Osteopathy was developed at the beginning of the 20th century by Dr. William Garner Sutherland, an osteopathic physician, who founded himself in the year of 1872. The Cranial Therapy was not accepted by people for 40 years until some highly sensitive computerised medical diagnostic equipment confirmed that Dr. William Garner Sutherland has been right.

The Therapy is based on the idea that the entire nervous system of human body is in constant rhythmic motion, once some of the movements are restricted, symptoms like headaches or depression would raise. While working with an kid with autism, the initial focus often is on the cranium to locate an area that has the greatest motion response to the Craniosacral rhythm. Delicate release and pumping techniques are used to create more motion in that area." Please click on "Autism World" to read the entire article.

One thing I have to say, the times we have taken him for a session and he had had a cold, while she works moving the fluids, Tommy releases mucus effortless without sneezing and she does not apply deep pressure, just very gentle touches. He seems to heal faster and in a shorter period of time, comparing him with Francis who takes longer to completely heal from a cold, who is not in CranioSacral therapy.

What I like about Tommy's massage therapist is that she is also a mom who has kids with sensory issues. So she understands us as a family. I enjoy every time I go there because I really feel comfortable with her talking about my feelings and fears. So I feel more than getting massage therapy for Tommy, I am also getting counseling services for Free. She has become a very important member of Tommy's team.

Advice to Parents
If you have a child with Sensory processing disorder and/or Autism, CraneosSacral therapy is a good way to help the child to calm his or her sensory system down. And it is a good way for you to relax and recharge your batteries. You can take advantage that you are there an get a massage for you, too. There are some organizations that may fund Craniosacral and massage therapy for kids with Autism.

If your child has sensory issues and you suspect he or she also has Autism. Have your child being evaluated for Autism! Not all the states recognize Sensory Processing Disorder as a diagnosis itself if it is not linked to Autism, making more difficult getting the help your child needs at school such as a sensory diet. If there is not a diagnosis schools are not entitled to provide services. 

There are many grants and programs out there, but they are unknown. Work closely with your Service Coordinator from the Department of Mental Health. The most involved your Service Coordinator is involved in what's going on in your child's life, the better she or he will understand your child needs for services. I don't believe labels define a child as a human being, but the more labels a child has the greater it will be for your child to get state or federal funding for traditional and alternative therapies, especially if your child has serious health issues. Due to Tommy has been blessed with an overall good health and we are family with dual income, we barely qualify for government funding for Tommy, but I will keep finding ways to put in place everything my son needs for his developmental growth because this is an area where he is affected the most due to his regressive Autism.  I don't think of the label like a death sentence, I am taking advantage of the label!

THE SKY IS THE LIMIT!

"Play to Talk"

We started on September 2011 a new path with Tommy by dealing with his diagnosis of sensory processing disorder, and then, Autism, which isolated him from the world. Today, Tommy's isolation and withdraw seems just a bad dream thanks to the work of two dedicated child Psychiatrists, as well as, the guidance of expert moms on Down syndrome as well as expert moms on Autism, who I have personally never met; and recently, the implementation of an individualized neuro-developmental program, which evaluation was done online. Technology has open a door to get in a world of possibilities for my son's recovery. Neither his pediatrician, Neurologist nor conventional medicine has been involved in getting Tommy out his isolation. Why? When I turned to them looking for help, I didn't have answers for my questions or the guidance I needed to help my son. Here is when I discovered that the science field is divided, but the information is out there for the benefit of our kids, even when not all doctors are updated about it.

We have strongly been focused the whole summer on decreasing steaming behaviors and increasing interaction with the help of the book "Play to Talk." This is a great book written by Dr. James D. MacDonald, which provide strategies for in-home therapy by caregivers. The strategies are based on interaction because the most the child interacts, the closer the late talker child is to communicate, and then, to talk. This book gives ideas of simple forms of play to develop a play plan that can be done at home with your child during the family busy routine. This book has an assessment for your child, as well as an assessment for you because communication happens in two ways, so it is important caregivers and parents analyze how they interact with the late talking child for the child willing to communicate with them as communication partners. It also makes emphasis about how the environment influence in the child's withdraw, so you can understand why your child behaves different or withdraw in different environments, which helps to facilitate interaction in unfamiliar places. It also has recommendations to develop properly interaction with toys, which is crucial to get a child out of isolation. The books is written in a simple and practical manner for parents / caregivers to understand and follow through. I highly recommend this book!

Before reading Play to Talk, I realized Tommy is able to say many words and phrases, but not able to communicate, which is very typical for kids with Autism. I follow the work of Dr. Stanley Greenspan (rest in piece), who wrote the book The Child with Special Needs —a book I have mentioned previously in other post. Dr. Greenspan makes emphases in how Speech Therapist and parents rough a child to talk when the child is not developmentally ready and this is what causes 'echolalia' in many kids with Autism or other special needs. The child won't talk if he or she is not able to interact, it is just as simple as that. Dr. MacDonald also make a huge emphasis on this. Dr. Greenspan and Dr. MacDonald have help me to bring Tommy back from isolation through their books.

By the end of the summer, we are THRILLED that we see a child who is interacting with estrangers and participating in his regular education class. It feels good when he spontaneously uses his words to request iPAD, or when he goes to Daddy and gives Daddy a big hug and says: "MY DADDY." Or suddenly, he opens the freezer and request ICE CREAM. And recently, he has been requesting "KETCHUP" to put on his chicken. We have a lot to do in the communication area, but we are seeing "communication" coming along now that we have increased and regulated interaction.  When I say "regulated," it means to pay attention how I interact with Tommy by WAITING for a any kind of response from him. Just "WAITING" for any kind of response is making a huge different for  Tommy willing to communicate. SPOKEN LANGUAGE IS NOT NEED TO COMMUNICATE!

We get a note, almost everyday, that Tommy has participated with his regular 

education class.  Not bad for a child who used to isolate from his classmates.  

A child who cognitive skills are judged by his communication issues, but suddenly

he is showing at school he knows more than what was expected.

I realized that I am the link between Tommy and the world. So I made a portrait of Tommy, which is a summary of him showing how he is as a whole child. I described his skills and pointed to his needs rather than strengths or weakness as usual in a child's IEP.  I brought the summary with me to his IEP meeting two weeks before the end of the school year 2012-2013. This helped to establish a good Social IEP annual goal that supports what I am doing at home with the neuro-developmental program. By the end of summer school this past June-July, Tommy got 66% out of 80% for his social interaction IEP annual goal. This summary also helped me to go back in Tommy's development and make emphasis in non-verbal communication a his need due to his Autism diagnosis. So the IEP team agreed and they set an annual communication goal focused on non-verbal communication. I am putting the puzzle together and I am making Tommy's IEP part of my action plan. I recently update this summary and I will  share it with relatives, so everybody can understand Tommy as a child with skills and needs. My son is not defined as a dual diagnosis because a diagnosis is a label  that can be teared off and it is not the essence of a human been. For example: Tommy's asthma diagnosis was teared off by the same pulmonary doctor who diagnosed him. This doctor couldn't find any "symptom" that showed Tommy was asthmatic during a follow-up appointment, so he gave me a letter realizing Tommy from his asthma diagnosis.

We cannot get teared off his genetic disorder, but we can maximize his potential! Play to talk gave me the strategies I was needing to recover my son from isolation. I took me 2 and half years of dedication and sacrifice. Today, I am just happy because he is developmentally progressing!

Rescuing my son: Testing for biochemical imbalance in the brain (Part 2)

After we got the results of the neurotransmitter test, our nutritionist explained to us the next step was to get Tommy into a neurotransmitter treatment ASAP. So we started with the this treatment on October 16, 2012. What make me confident about this treatment is that it is not invasive, it is safe for kids and it was the first thing our nutritionist brought up when I was just about to ask her. She read my mind! 


Our son's treatment was established according to the recommendation of clinicians from the top leader in neurocience treatments with the direction of our nutritionist. The treatment does not involved any type of medical drugs. The treatments consist in vegetarian capsules, medical food and oral spray. We have to give 3 pills, 2 sprays and a formula in the mornings as well as 2 sprays at noon, a formula at the afternoon during the afternoon snack and 1 pill and 2 sprays in the evening.

The propose of this treatment is to protect  his GABA neurotransmitter. I cannot get over that his GABA is in a perfect level. I always STUDY about everything in my action plan before trying with Tommy. When I was in my search of what was happening to Tommy and how to help him, it came across Ginkgo Biloba, which is well know among parents with a child with Down syndrome because scientist researches show that Ginkgo Biloba leaf extract can enhance memory and learning because it increases the GABA. This works perfect for an individual with GABA deficiency. When I asked our nutritionist about Ginkgo, she said she understood the reason, but she didn't advise to give it to Tommy. I am glad I followed her advise because neurotransmitters should be in optimum level. I don't doubt about what scientists have found about GABA deficiency in people with Trisomy 21 and the supplementation of Ginko Biloba to increase GABA receptors in people with Trisomy 21. Because this scientist discovering doesn't apply to my son's GABA test results, I am wondering again, Does Tommy have Moisac Down syndrome? For know, I will keep focusing in my action plan.

The main focus of the treatment is get DOPAMINE, NOREPINEPHRINE, EPINEPHRINE and GLUTAMATE into balance or at least near to normal. Specially GLUTAMATE because this nurotransmiter itself is a neurotoxin if there is in a high level in the brain. The treatment does not target SEROTONIN, but getting all the other neurotransmitters in balance will help to lower SEROTONIN. There is not a concern on high levels of SEROTONIN right now. But It doesn't improve, in the future, I will ask for a second opinion. Why? All neurotransmitter should be in balance for the brain and body to work properly.  High levels of SEROTONIN may not affect so much a typical person, but I see it as a red flag because of Tommy's genetic disorder and high levels of SEROTONIN may cause serious disease if it remains high. This is another reason Ginkgo Biloba is not recommended for Tommy. Ginkgo increases SEROTONIN, so there is not need to increase his levels. The more I read about neurotransmitters and trisomy 21, the more I understand the connection between many health issues our kids face due to biochemical imbalances. This treatment works also to improve muscle tone, which we are starting to see because Tommy is getting muscle tone faster in his cord as well as other areas of his body (oral muscles). I also think it is a mixture of the treatment and therapies.

Our nutritionist also incorporated a detoxification treatment to support the liver's normal function to realize toxins, which will help to lower GLUTAMATE faster. She also recommended epsom salt baths, which is other non-invasive way of helping the body to realize toxins. In our last appointment on February 18, 2013, she suggested to incorporate detoxification food in Tommy's diet such as: cilantro and parsley. Tommy already likes cilantro and it is part of our daily meals, just because we use a lot of cilantro to cook in my country, Panama.

The neurotransmitter treatment main goal is to protect Tommy's brain because, in a long term, this can cause irreversible damage to his brain cells, the same damage than drugs do. Before it was believed that brain cells couldn't regenerate, but today's neuroscience has found that they do regenarate. So the main benefit of this treatment will be seen in cauple of years when Tommy's brain cells will start the regeneration process. A scientist research  found in 2011 that neurons can regenerate with high brain stimulation which seems promising for people with Parkinson and cognitive impairment. 

Nutritional Intervention
It has been a year since we started the nutritional intervention. Tommy's recovery has been a long process that started with the nutritional therapy followed by the neurotransmitter treatment. We have weakness how this have improved his health by getting ripped off the asthma label. It feels so good having the note from the pulmonary doctor saying Tommy does not have asthma symptoms. This proves that  traditional medicine treat symptoms and not the cause. Tommy had viral asthma instead of classical asthma, but the available treatment in traditional medicine is for the classical asthma, so they just loaded him with steroids and drugs.  Having a patient with X label is more lucrative for the pharmaceutical investors. The doctors are just stock in the middle, they apply what they have been thought, so they do not know there is other way. When we got Tommy out of the hospital, they sent Tommy home with medications for asthma even when he wasn't diagnosed yet. We paid about $100 for those medications and every time we have to get the medications it was more and more money and Tommy was not showing real symptoms of asthma. Because of the label of asthma he had to get the most expensive flu vaccine. When the effective method for the viral asthma is lowering the internal inflammation, which is what we did thru nutritional intervention.

In our appointment on August,  our nutritionist was wonder why Tommy's anxiety was so high even when we were already supplementing with Omega 3, I decided to revise Tommy's nutrition because I was concern we were missing something. As I said, I STUDY everything that I am doing in my action plan, I read three books about nutritions and its effects in the body —so I got armed with a lot information.  I revised Tommy's nutrition from what he eats, the quality of water he drinks to supplements. So I made some changes:

Omega 3: Even we were supplementing with omega 3, the supplement we were giving to him didn't have high levels of EPA. So we got a high potency Omega 3 which has high levels of EPA. If you would like to know more about Anxiety and Omega 3 click here.

Water: The state where we live has a good quality of water and it is among one of the best in the country. But it is not complete free of toxins such as: lead, mercury, etc. So we get a water filter so all the water we use for cooking and drinking is filtered water. This will help to reduce the amount of toxins getting into his body. This will take work out of the liver because it won't have to work so hard in getting ripped off the toxins that are already in the system and new toxins.

Pills: Tommy just take one pill for hypothyroidism.  I asked to his ENT doctor if we could exchange his pill to one with less chimicals. She agreed and he is in a dye free pill. I am looking into organic replacement hormone pills, but it will take a while until we do this, because I need more time to study about it, but I alredy found a doctor to work with.

Zinc: We added zinc supplement to his diet, even when we didn't do a blood work. But we will request it a zinc test in his coming annual check-up. The reason we supplemented without the test is because Tommy had pretty much all the symtoms of zinc defficiency. My husband found a zinc supplementation that helps with absorption as well as keeps the zinc in optimal levels, so the zinc doesn't get poisoning. Two weeks after we started sumplmenting with zinc, Tommy's appetite began to improve and began to drink plain water without too much struggles.


Everything Organic: We are not 100% organic as I would like to, but we are moving forward. I will say we are between 60% and 70% organic. We are also trying that his supplements are also organic. Why everything organic? Because the organic label means free of contaminants if they are certified 100% organic, so this will help to reduce toxins getting into Tommy's baby. For fruits and vegetable to be certified as organic, the whole process of cultivating them have to be organic starting with the soil, following by the seeds. Then, the filtered or spring water  to water them as well as organic fertilizers and organic pesticides. As a consumer, you and I are not advise that chemicals from the pesticides in fruits and vegetables we eat go to the brain once they get into our system. So I feel I am slowly killing my kids if I keep giving them non-organic food. The more we, the consumers, demand organic food the more the organic food prices will be affordable for everybody and we will have a healthier society.

THE SKY IS THE LIMIT!

____________

In my next post, I will talk what is happening to Tommy after the first 4 months of treatment. 

Rescuing my son: Testing for biochemical imbalance in Tommy's brain (Part 1)

Because of the connection between stomach-brain, many neurological disorders start in the stomach rather than in the brain. This is the reason why the first step in my son's wellness plan was to determinate if he had food allergies. Based on the blood work results, it was positive that my son has food sensitivity, rather than food allergies —his food sensitivity is caused by inflammation in his intestine, click here to read more about it. The next step, it is checking bio-chemicals in Tommy’s brain due to food sensitivity or food allergy affects the stomach's capacity of absorbing the nutrients that are necessary for a properly brain function, resulting in a biochemical imbalance in the brain.

NEUROTRANSMITTERS TEST

Understanding Neurotransmitters

According to medterms.com, a Neurotransmitter is "A chemical that is released from a nerve cell which thereby transmits an impulse from a nerve cell to another nerve, muscle, organ, or other tissue. A neurotransmitter is a messenger of neurologic information from one cell to another." 

Under the direction of our nutritionist, we tested Neurotransmitters in Tommy's brain. Based on Tommy's behaviors, such as: irritability, repetitive behaviors, lack of motivation, waking up in the middle of the night among others, our nutritionist decided to test for the following neurotransmitters:

SEROTONIN: An adequate amount of serotonin is necessary for a stable mood, as well as, to balance any excessive excitatory (stimulating) neurotransmitter firing in the brain. Serotonin controls processes in the body, such as: carbohydrate cravings, sleep cycle, pain control, appropriate digestion and auditory processing. If there is an issue with auditory processing, this directly affects language development. 

GABA: This neurotransmitter is mainly responsible for inhibitory signals between neurons. It also contributes to motor control, vision, and other cortical functions. It is also responsible for memory storage. 

GLUTAMATE:  80% of brain's neurons release glutamate. In high levels is toxic. Glutamate’s most vital function as a neurotransmitter is in cognitive activities like memory and learning. 

DOPAMINE: One of its functions in the brain is to regulate mood and movement; therefore, it is required to be in balance for body and brain optimal performance. If it is too high or too low, we can have focus issues such as: forgetting easily what has just been learned or read, or not being able to stay on task.  Dopamine is also responsible for our desire to get things done —in other words, for our motivation.  It also has important roles in pleasure and subjective feelings of happiness.

NOREPINEPHRINE: This neurotransmitter can cause 'anxiety' at elevated levels as well as some 'mood dampening' effects. This neurotransmitter is most involved in the “fight or flight” response under stressful situations. Norepinephrine also works as a hormone. As a neurotransmitter, Norepinephrine helps to regulate state of being awake or reactive to stimuli, dreaming, and moods. As a hormone, norepinephrine increases blood pressure and heart rate, as well as, constricts blood vessels; which are responses that occur when we feel stress.

EPINEPHRINE: It is what we know as adrenaline. It control attentiveness and metal focus.

When it is in elevated levels is a factor  that contributes to restlessness, anxiety, sleep problems or server stress.  Epinephrine also regulates heart rate and blood pressure.

Sample collection on August 14, 2012

Neurotransmitters are tested by urine sample. So collecting the urine sample for the test wasn't a fun process because I always did something wrong and I had to star over again. So every time that I failed collecting the sample, I had to request a sample kit at our Nutritionist's office, which make the whole process longer. But I kept trying until I got it right. 


Discussion of Test Results on September 2011

Serotonin: 310.9 EXCESSIVE, OUT OF A  HEALTHY RANGE

This is the cause of Tommy's auditory processing issues. The treatment will also focus on place its level into the normal range. 


GABA: 6.8 in the preferable range. PERFECT LEVEL

I was expecting it completely off, based on all scientist research I have read about the GABA receptor and Trisomy 21. Scientists have found a deficiency of the GABA receptor in people with Trisomy 21. But one more time, Tommy has broken stereotypes...Yahoo! 

Glutamate: 189.7 EXCESSIVE, OUT OF A HEALTHY RANGE

The high levels of Glutamate are a concern for our nutritionist, because glutamate in an elevated level is considered pure toxin. So we have to work on lowering it to an adequate level and support his lever to realize toxins. 

Dopomine: 370.1 EXCESSIVE, OUT OF A HEALTHY RANGE

We have to work on lowering his Dopamine to a normal range, so Tommy will be able to get back the motivation he lost.

Norepinephrine: 95.0 EXCESSIVE, OUT OF A HEALTHY RANGE

The excessive level of NOREPINEPHRINE indicates that Tommy is under an extreme anxiety. If there is ANXIETY, it also means that the cortisol levels are too high. Further testing was not necessary to check for cortisol because the levels of NOREPINEPHRINE already proof he has anxiety. The treatment will be focused on lowering his norepinephrine levels, as well as, the cortisol. 

Epinephrine: 15.1 EXCESSIVE, OUT OF A HEALTHY RANGE

The treatment will also focus on place its level into the preferable range.

So based on the test results, a treatment was formulated to get the neurotransmitters on balance by supporting the adrenal and thyroid glands, as well as, the natural liver's detoxification function.

Our nutritionist has become a very important member of our team to help Tommy to reach his full potential. I advise to any parent who is rising a child with a genetic disorder to work with a nutritionist right since the beginning. I started my own nutritional intervention since I was pregnant with Tommy and I do believe that it made a huge different for him. He is one of the healthiest kids that are seen at our local Down syndrome clinic. He just goes there for his annual check-ups. If I had met our nutritionist when I was pregnant, without a doubt, I would be working with her since then.

Testing is the only way to find the right treatment and biochemical balance to formulate an individualized wellness plan for a person with T21 or any person. I am TRILLED that Tommy's GABA receptor is in a perfect range because due to the inflammation in his gut it could be completely off, but GOD knows everything! He always shows me that he is by my side even when I think and I cannot go on. Tommy's GABA receptor is the logical explanation to me, why he was doing developmentally good previous to the hospitalization. This is the reason why he recalls events from the past. For example: One day, I showed him a photo of a cockroach and I named it in English. The next day at bath time, he began to sing "La Cucaracha" (cockroach) a Spanish song we hadn't sung for so long (Tommy is simultaneously bilingual, not doubt about it). So I will focus on protect his GABA neurotransmitter, as well as, getting all the other neurotransmitter on balance and that Tommy's gut can completely heal. 


Biochemical unbalance in the brain has not been rule out as a possible cause of my son's regressions and sensory issues.

Note: Due to there are a lot information to share, I will do this post in several parts. In my next post, I will talk about our experience with the neurotransmitter treatment and nutritional intervention. 

Recuing my son: What to do when your child refuses to drink water

What to do when your child refuses to drink water:
KEEP OFFERING PLAIN WATER, THEY WILL GIVE UP!

A child cannot take control of their food and water intake because they are not mature enough to make decisions over their nutrition. It is my responsibility, as a parent, to promote good eating habits. I try that my boys eat healthy in all possible ways, but I think I failed in one aspect when Tommy was about 18 month. One day, he refused to drink water and I gave if up too soon. The problem started when we began to give him juice and I didn't realize it. We have prolonged the problem by mixing the water with juice. So we have limited the juice intake; just at school, he is allowed to drink water mixed with juice because I don't want his teacher struggling with him not drinking water. But I will talk to his teacher if she can gradually eliminate the juice from his water. He used to enjoy water as his little brother does now. We don't give juice to Francis because I know now if a child regularly eats fruits and drinks milk and water, juice it is not important in a child's diet.

I learned a lesson and we are on time to fix the problem. It has taken a lot of patient and learn to read Tommy's like and dislikes due to his communication barriers. We trick him by giving him snacks will make him thirsty, so when he is all done and he drinks water without saying a word to him. When I think in the past, there were not way to make Tommy to drink plain water. So there is a huge progress.

My mom staid with us for a few months, so she took the lead in making Tommy to like water. She was successful! But she went back home and Tommy began to refused drinking water from the blue water bottle his OT gave him. I know the adjustment process of not having my mom around had to be with it. She can read him very well, so she knows Tommy's likes and dislikes regardless his communication barriers. So I brainstormed about the situation. I realized he was needing something to motivate him. It wasn't the water, it was the cup. He gets bored of certain things if they are done over and over again in the same way. So Paying attention to Tommy's personality is crucial to know his like and dislike. I switched the blue bottler water to a cup Tommy wasn't familiar with, while I let him make a choice to give him more control of the situation. It worked and it is still working!

In my search on how to motivate him to drink water, I found out about the bobble water bottles. They have a fashionable design that comes with a water filter. They are free of BPA, Phthalates and PVC. I am ordering more of these bottles because they are not made to be washed in the dishwasher, but I read it after it was too late. I am also using these bottles to reduce toxins in the water because of Tommy's high levels of toxicity. But the best of old, Tommy is motivated to drink water with these bottles.

Here is Tommy drinking water from his bobble water bottle this morning.

He drank 5 oz of water this morning without struggles.

On Monday, November 19, we were at the playground in the evening and I asked Tommy if he wanted to "swing or water" so it could be his choice –rather than me forcing him— and he answered "A LOT OF WATER." Yes! these words. Just clearly like the water. It took me several minutes to actually believe these words were coming from him because his communication barriers and his dislike for water. I am glad my husband was there to confirm to me what I heard. Tommy drank 8 oz of water between the time we were at the playground and our way home.  This day, my effort to help Tommy to drink plain water was paid off when I heard his voice demanding "A LOT OF WATER."

Currently, Tommy is mostly drinking water by his choice. I ask him sometimes, Do you want a sip of water? while he is eating, so I wait for any kind of response, verbal or gesture.* He still gives trouble to our relative, who helps with baby sitting, when they offer water to him. So I contacted our former developmental therapist if she can help us with this situation because I think it is a behavioral issue, rather than him not liking to drink water when they offer the water to him. I think it is more Tommy taking over of the situation, how it had happened in the past. There are some days better than others, but I feel I am starting to win this battle.

Conclusion
There are 5 steps to make my son or maybe any child to drink plain water:

1. To pay attention to child's personality and non-verbal cues to learn about his or her likes and dislikes
2. To make the process fun by getting funny water bottles
3. To allow the child have control of the situation by giving him or her "choices."
4. To be consistant in offering plain water often.
5. To avoid water substitutes (juice, flavored water, vitamin water, etc). They just make the issue worse and longer.

________________

* Approximately more than 60% of humans communication is by gestures. So even when our kids with communication barriers struggles verbalizing their wants and needs, they always communicate with their body language. We have to pay attention to it and wait for any kind of response. It works!

Rescuing my son: Unhealthy toxicity levels

Fighting back Sensory Processing Disorder is not easy, specially because it is a hiding disability. It is something you can not see. I am informing my self, as much as I can, to find the best ways to help Tommy to surpass this challenge. I feel very confident with the team of professional that are working with us. We are using sources, which are proven by scientist research, to formulate Tommy's wellness plan. I will explain in separate post the urine test that was done to Tommy to know his neurotransmitter levels. The same test also showed that Tommy's toxicity is extremely high to the point it is unhealthy. His nutritionist have recommended a detoxification treatment, based on a medical food to support the liver to realize toxins. It is the stronger treatment available that can be given to a child, but it is safe.

Natural ways to detox

• A person, adult or child, should drink half of the body weight measure per once. For example: If I weight 104 lb, I should drink 52 oz of plain water per day. Water has ions that act like magnets that attract toxins and take them out when we excrete liquid waste (urine and sweat). We reviewed Tommy's water intake and he wasn't drinking enough water. We are working on making him to drink plain water. Tommy is getting the support from his teacher in this process, she is making sure he drinks water at school every day. At home, we are doing everything to encourage him to drink plain water. He doesn't like water, so he is giving us hard time, but if we sing his favorite songs while he drinks or encourage him to drink water by us drinking water with a water bottle, then he complies. I am keeping a water count per day, so he meets his daily water intake. There are days he enjoys to drink water and days he doesn't want to drink much, but I still find ways that he meets the amount of water he should drink. This is a huge improvement because before he didn't want to drink plain water at all.
• Epsom salt bath recommended by his nutritionist. Epsom salt bath benefits have been proven by scientist research. Tommy's epsom salt bath is once a week. I just put one cup of Epsom salt in the bathtub filled with warm water. While the bathtub is getting filled,  the bathroom door is close to raise the temperature in the bathroom, so it makes Tommy sweat and realize toxins. Meanwhile, the body is also absorbing the Epsom salt while he is soaked in there for 10 minutes. 
• Increasing exercise routine. Tommy and I are physically active, at least for 15 minutes, to the point we sweat. In this way, Tommy naturally realizes toxins, increases endurance and gets body awareness. The good thing is Tommy sweats like crazy, so it doesn't take long to make him sweat. I also offer water while we are doing our routine, which is basically jumping and dancing while we listen to music such as, Eye of the tiger or I gotta feeling. We are having fun!

Here is Tommy drinking from his favorite water bottle.

This bottle has a special meaning, his private paid OT gave it to him.

This the only container Tommy accepts to drink water.

As I said, sensory processing is hidden disability, but not invisible. The child will always show the sings, but as a parent, you should find a good team of professionals who will lead you to the right and safe treatment for your child. We should be councious that our kids with Trisomy 21 may have a liver and kidsneys that may work slower when they have to realize toxins. A doctor won't tell you this, I figured it out reading sciencit research about people with Trisomy 21.

It makes sense to me now the reason his sensory issues got out of control, Tommy got loaded of strong medications during and after the hospitalization. Medications are good, but they are full of toxins. So they altered his biochemical balance. His body may still be working on getting toxins resulting from all these medications, plus the toxins he naturally gets every day. I will post in the coming months, when we finish the treatment, about differences/improvements we have noticed in his sensory processing issues and what are the results when we retest.

The Sky is the Limit!

Rescuing our son: Checking for Atanto-axial instability (AAI) —Neck X-ray

By the end of August last year, I began to feel more and more uncomfortable because of Tommy's regression. Something wasn't right! I had to find out the cause to fix the problem. So I contacted our local Down Syndrome Center. They checked his chart and the only possibility they found was: Atlanto-axial instability (AAI). The x-rays he had last year show he had a borderline for AAI, so his regressions in his gross motor skills and overall muscle weakness showed after the hospitalization may be linked to AAI.


What is Atlanto-axial instability (AAI)?

"According to MedScape Atlantoaxial instability (AAI) is characterized by excessive movement at the junction between the atlas (C1) and axis (C2) as a result of either a bony or ligamentous abnormality. Neurologic symptoms occur when the spinal cord is involved. The causes of AAI are varied. AAI sometimes results from trauma. Other cases occur secondary to an upper respiratory infection or infection following head and neck surgery. Another cause is rheumatoid arthritis (RA), with its predilection for the upper cervical spine. In addition, congenital anomalies, syndromes, or metabolic diseases can increase the risk of AAI."

What are the symptoms?

AAI could be asymptomatic. According to the National Down Syndrome Congress, "The 13-14% of individuals who have asymptomatic atlanto-axial instability require no special medical or surgical treatment. However, these individuals may want to avoid activities that may put extra strain on the neck. High risk activities include gymnastics (especially tumbling and trampoline), diving, swimming the butterfly stroke, high jump, soccer, and collision sports (such as football). Individuals with asymptomatic AAI should have more frequent medical and x-ray follow-up. For the 1-2% of individuals with symptomatic atlanto-axial instability, surgical stabilization of the vertebrae is necessary. Such surgery should be performed by a neurosurgeon or orthopedic surgeon who is familiar with Down syndrome and who has experience treating atlanto-axial instability."

Do the neck x-rays diagnose Atlanto-axial instability (AAI)?

No, the neck x-rays are a screening and they are not 100% accurate. An MRI is necessary to diagnose AAI. According the the National Down Syndrome Congress, the "Screening for AAI involves both x-rays and physical examination. The physical examination looks for any changes that might suggest pressure on the spinal cord. X-rays of the head and neck are taken from the side (lateral view) with the head in a normal position as well as with the head bent forward (flexed) and tilted back (extended)." 


A space between parts of the first and second cervical vertebrae (atlanto-dens space) of 3 millimeters is considered normal.  The space between 4 and 5 millimeters is considered borderline and more than 5 millimeters is considered suggestive of atlanto-axial instability.

My husband took Tommy to the radiology appointment in Feb. 2011. My husband commented that the technician said that the films may be wrong because Tommy was moving. The results showed that Tommy's atlanto-dens space was borderline. So Down Syndrome Clinic suggested to repeat the x-rays this year.

If some how the regressions would be linked to the AAI, it may due to Tommy's fights against the nurses due to the pressure in his face and neck to keep the oxygen mask on. I didn't know how strong Tommy's was until I saw him fighting back against 4 nurses. So they did what they had to do to keep him breathing. If the AAI got worse because of the fights during the hospitalization and his regressions were symptoms of AAI, the next step may be surgery. So once again, I got armed with courage and got *plan "B" while I was waiting for the appointment on January 11, 2012.


We had to wait about 3 months for  a neurosurgeon see Tommy. Finally, the day for the appointment arrived. we went to  the appointment, but  the neurosurgeon felt he didn't have enough experience with kids who have Trisomy 21. So Tommy was recommended to a other doctor in the Neurologist Division and he restricted Tommy from any activity that could cause rough movement in his neck until the new doctor saw him. We got the next appointment for February 7. It means today! I am glad to say Tommy is out of any risk. The x-rays showed his AAI is 3mm, completely in the normal range. The Neurosurgeon also asked questions about his regressions in the are of motor and we are glad to say Tommy's muscle weakness has improved as well as his balance, very close to were he was before. So new x-rays won't be necessary until he gets older. The current recommendation is every 10 years. So AAI has been ruled out from the list as a possible cause of his regressions and worse his sensory issues. 

Why surgery is the option for symptomatic atlanto-axial instability?

Surgery is recommended because the person can get paralyzed for the rest of his or her life or can die. So there is not doubt in my heart if symptomatic AAI comes across in our journey, I will everything for my son having the surgery. A low percentage of a people with T21 experiencing  AAI need the surgery, but the risk is higher for them than for their typical peers.  A lot of kids with T21 experiencing asymptomatic AAI grow out of it. 

I have to thanks Tommy's teacher, therapists, extended care staffs and everybody at Tommy's Preschool and Day care for caring so much about him when they knew about the possibilities of having symptomatic AAI. They were doing everything they could to keep him safe. This make feel confident to let my precious boy under their care while I am working. Thanks so much! 

___________________

*PLAN B

If my son would have needed the surgery, I wanted the best for him. This means the best surgeon, the best hospital. So I contacted a blogger friend "myspecialks.com." She gave me good information if my son would need surgery. So I want to share it with all parents with a child facing symptomatic AAI:
Shriner's Hospital for Children in Philadelphia has top spine surgeons in the country. One of the best surgeon for AAI is Dr. Amer Samdani, he is currently working in open a AAI clinic. You can contact Dr. Samdani at:

Shriner's Hospital for Children

3551 North Broad Street, 

Philadelphia, PA 19140 

(215) 430-4000. 

Because of the health care of a child with a genetic disorder requires money, we always are worried about medical bills. Shriner's Hospital for Children doesn't reject any patient because of money. Shriner's Hospital for Children pays for all travel and all medical care. I didn't get more information how to apply for them to pay for the medical bills, but it is a great relief to know about it.