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.

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* 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: Checking for Non-anemic Iron Deficiency

"What your doctor won’t tell you (referring to your child with Trisomy 21)... iron is essential for growth, development, and a healthy immune system. Iron deficiencies are proven to affect IQ and focus in children. Since iron excess can lead to enhanced damage through oxidative stress, it is important to be tested for iron. Measuring blood levels of ferritin is the best way to evaluate how much iron is stored in the body, and whether or not you are deficient." Nutichem.com


Iron excess in kids with Trisomy 21 is common, but it is not always the case. Trisomy 21 is a genetic disorder and not a disease, which means the ways the syndrome will affect the person will vary due to the combination of multiple inherited genes and the exchanged genes by the extra chromosome. So there are also many kids with Trisomy 21 with low iron levels and animina. Therefore, testing is the best way to check a child with trisomy 21 iron levels.

Borderline iron levels is known as depletion or non-anemic iron deficiency. When a person has non-anemic iron deficiency it means the person could be at risk of developing anemia, so iron supplementation may be recommended. Because many kids with Trisomy 21 have hypothyroidism, there is a higher risk for these kids to develop iron depilation leading to anemia. As well as, if the child has food allergy or sensitivity, they are at a higher risk of non-anemic iron deficiency because the gastro intestinal track it is not absorbing the adequate iron intake.

Non-anemic iron deficiency can cause problems. According to the study 'Women with low, but not anemic, iron also have impaired physical performance', done by the Cornell University in New York, has shown that "iron-depleted women had lower physical work capacity, and their performance was related to the amount of stored body iron... Other researchers have recently reported that moderate iron deficiency also compromises memory and verbal learning in teen-agers."  If non-anemic iron can cause low physical performance in an adult women, it makes me to conclude, it should affect in a similar way to a young child's body that it is still  developing, but even more to a child with Trisomy 21, who is already predisposed to have issues with physical performance and memory lost. 

Iron and Oxidative Stress
Because of the recommendation from the lab where we get Tommy's vitamin, and after talking to his nutritionist, we tested Tommy for iron levels. The results came back showing "borderline iron levels", which means, he is just a little bit underneath the normal level. Therefore, it has been recommended iron supplementation by our local Down Syndrome Clinic and Tommy's nutritionist.

Normal levels of iron are necessary for the body to get adequate level of micronutrients, but its accumulation lead to toxic levels that generates oxidative stress. So iron supplementation should be regulated to avoid high levels of iron. Oxidative stress develops at a faster speed in our kids with Trisomy 21 than in the typical population. Therefore, monitoring our son's iron levels has become part of our wellness plan to keep him healthy.

What is Oxidative Stress? According to Enzo Life Sciences' website "Oxidative stress is increasingly implicated as a possible underlying pathogenic mechanism in a wide range of diseases such as asthma, atherosclerosis, cardiovascular disease, diabetes, cancer, and Alzheimer’s disease. It results from an imbalance between the production of reactive oxygen species (ROS) and the system's ability to detoxify the reactive intermediates or repair the resulting damage."

Oxidative stress under control

1. Detoxification methods to prevent iron and toxins accumulation. Quilation has been recommended by the physician is in charge of Tommy's nutrition. Currently, we are doing a detox treatment and epson salt bath. We also incorporated kefir beverage in Tommy's diet because kefir has anti-oxidative components to keep oxidative stress under control, which has been proven throughout scientific research. We are going to focused in detoxification for the following months because there is high concern about neurotransmitter levels in Tommy's test results, that show extremely high levels of toxicity, which means his body is not flushing the toxins properly. The natural process for the body to flush toxins in a person with Trisomy 21 is slower than in a typical person.
2. Monitoring Oxidative stress through blood work or urine test. Iron is not the only factor that increases oxidative stress in our kids with trisomy 21. Oxygen quality intake is also other way oxidative stress can raise in our kids. Many kids with Trisomy 21 are mouth breather and mouth breathing quickly releases huge quantities of carbon dioxide. Therefore, a way to check for oxidative stress is with a Basic Metabolic Panel (BMP). This test is a set of 8 test to check sugar (glucose) and calcium levels in the blood, as well as, the kidneys function and body electrolyte and fluid balance. So this test give a general information about how the body is performing, which also includes a test for carbon dioxide levels. If the carbon dioxide it is too high, their is a high risk for oxidative stress. We already did the test and Tommy's BMP came back normal. Right now there is not  a big concern about oxidative stress. Maybe in the future, we will do a test for oxidative stress as part of our wellness plan to keep Tommy healthy if it would be a concern.

Our Experience
As soon as, we began to supplement with iron we saw a big change on Tommy. His endurance has dramatically improved, he has became more physically active. His attention span has also improved. So supplementing with iron, it is helping his body and mind more than what I was expecting. 

We are supplementing iron through food and supplement. The iron supplement we are giving to Tommy has Vitamin C and Vitamin B12, because they are essential for iron absorption. We are also providing a balance diet to him with food rich in vitamin C and Vitamin B12, so he can get most the nutrients he needs from his food, but he is in stage he doesn't want to eat much at dinner time. So supplementation is recommended for him.

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Enzo Life Sciences is a leading manufacturer of high quality reagents, kits and products supplied to scientific researchers in academia, clinical research and drug discovery. With direct sales operations in US, Switzerland, Germany, UK, France and Benelux.

Rescuing my son: Finding answers

After confirming with the blood work, my son has food sentitivy due to the gut (Intestine) is not working properly, I had a lot of questions about this issue. How did this happen? What cause his gut not working properly? What happened to the good bacteria? What can cause gut inflammation?To find answer to my questions, we searched for possible medical causes by going through our son's medical history.


Finding answers

Was Tommy previously tested for food sensitivity or intolerance?

Yes, he was tested in March 2010 because we are very proactive in monitoring Tommy's health. He was tested for gluten sensitivity and the test came back NEGATIVE and his levels were perfectly normal. We wanted to make sure everything was alright because some family members have Celiac and kids with T21 are at a higher risk for Celiac. Tommy's gut was working propertly previous to the hospitalization (January 2011). 


What can cause gut inflammation?
Some of the common causes are:

• Drugs: Antibiotics, Steroid drugs, Birth control pills, Chemotherapeutic agents, etc.
• Diet: refined sugar and flour, processed foods, chemical food additives such as artificial colours and flavours, alcohol (including, beer and wine), soda pop and caffeine act on the body like toxins. 
• Nutrient deficiency: If your body doesn't absorb the  nutrients properly, it creates a nutrient deficiency. So absorbing Zinc, Vitamin B6, Vitamin A, and glutamine is important because they are essential nutrients for maintaining the intestinal wall integrity.
• Microorganisms and Free Radicals: parasites, bacteria, mold, mycotoxins.
• Various Diseases and Disorders: Inflammatory conditions of the intestines such as Crohn's Disease, colitis, celiac, and pancreatitis. Other diseases such as:  HIV/AIDS, Candidiasis, Cancers of the gastro-intestinal tract, Food Allergies, ect.
• Lifestyle: A high-stress lifestyle and smoking (nicotine).

What medications were giving to Tommy while in the hospital?

When I made this question to my self, I went to Tommy's medical binder and I read everything about the medications were given to him, including the smallest printed letters. Two medications called my attention Azithromycin (antibiotic)  and Prednisolone (steroid), they are commonly used for treating upper airway infections. Both medications have the following side effects in common:


Muscle Weakness. The lost of muscle strength was very evident at the hospital and I even asked for physical therapy while he was at the hospital, we all thought it was due to the lack of physical activity that usually happen after being in bed for many days. Tommy couldn't sit for days, after he could sit on his own, he couldn't walk. So his muscle weakness was shown right at the hospital. But we realized how bad it was when we came home that he couldn't go up the stairs holding the real. Tommy's motor regressions were very evident the day he came back from the hospital on February 2, 2011. We kept giving his the same medications for about 2 more weeks by the doctors recommendation.


Gut issues, other side effect that pop up to my eyes. Which is what we have seen progressly happening after the hospitalization. According to the document given to us about the medications, symtoms of gut issues can appear even months later after being on the medication. 


Remember, Tommy never had antibiotics before until he was hospitalized. Because of the high risk of him getting pneumonia; Doctors did what they have to do, no question about it. But  there is not doubt that the antibiotics killed any bacteria in his body, including the good bacteria that support the gut to work properly. This is becoming an issues in the medical community and Dr. Michael in the video below explains this issue.

The same information is ratified by the Pharmacist Sherry Torkos

The poor guy was on these medications for a long period of time. So the possibilities he has a reaction to these medications are high. In the other hand, according to scientist research, people with Trisomy 21 don't absorb nutrients properly —this is the reason the are two labs creating special vitamins for kids with T21 to address thier nutritional needs. So Tommy gut inflammation, in my opinion, probably it may be a combination of a reaction to the medications and the extra genetic material.


Why did my son's gut get so much affected?
There are two reasons why his gut could go so affected. The first reason is that my son's wasn't eating or drinking while he was hospitalized, he was getting intravenous therapy (IV); so, he wasn't getting any type of food that could coat the stomach and intestines walls, while he was getting the antibiotics through the IV. The second reason is that he was in an antibiotic for a long period of time. He was getting the antibiotic and steroid at the hospital and for about two more weeks after he left the hospital. Tommy never before had any type of antibiotics, so the possibilities he has a reaction to the medication is high.


Did Tommy has some symptoms his gut wasn't properly working after the hospitalization?
Yes, he had loose bowl a few weeks and months after the hospitalization, and this has been one on and off until recently when we started a nutritional intervention. A rash (eczema) also appeared on his face around October 2011. A week after we started the nutritional intervention, the rash began to improve. Currently, it is almost gone.

Why gut issues can affect the brain or vice versa?

I think before understanding how gut issues can lead to sensory issues, we should understand when the gut doesn't process the food properly affects the brain functionality. I am not a Dr., so I am not an expert on these matter, but I found a good explanation in the article "The Gut-brain connection" in the Harvard Health Publication, which is published by Harvard Medical School:

"The brain has a direct effect on the stomach. For example, the very thought of eating can release the stomach’s juices before food gets there. This connection goes both ways. A troubled intestine can send signals to the brain, just as a troubled brain can send signals to the gut. Therefore, a person’s stomach or intestinal distress can be the causeor the product of anxiety, stress, or depression. That’s because the brain and the gastrointestinal (GI) system are intimately connected — so intimately that they should be viewed as one system..."

Why gut issues are linked to sensory issues?

Because of the Brain-Gut Connection. According to Timothy Buie, MD - pediatric gastroenterologist: 

• Every known neurotransmitter present in the brain is present in the gut. 
• The gut has independent mechanisms from the brain to regulate actions [enteric nervous system ENS]

Neurotransmitters are biochemicals that transmit signals from one neuron to the other, and then, to the rest of the Central Nervous System and the body. If the gut (intestines) doesn't work properly due to inflammation, this cause a biochemical unbalance because the inability of the gut to absorb all the nutrients that the body and brain need to function properly. According to Nutratest Lab, neurotransmitters are major players in brain chemistry. Neurotransmitters help us think and process the world around us. They can make us depressed, anxious or angry if they are unbalanced. They are critical to our emotional and mental well being.

We know Tommy had some type of sensory issues previous to the hospitalization, but they were not affecting him so much. Unfortunatley, the whole hospitalization experience affected him more than we imagined. I also think there is high possibility that him loosing the cervical curve happened at the hospital, which made the whole situation worse. What happen to Tommy was like a chain reaction, so his entire sensory system got disorganized.

How do I feel after founding answers?
"I feel a relief and a guilt." I feel a relief because everything about what I was observing on my son's muscle weakness and worsen of his sensory issues and regressions make senses to me now. I wasn't crazy! I am glad I don't believe in stereotypes, instead I believe in my son, so I can be a good advocate for him. I am glad my mother instinct didn't fail. In the other hand, I feel a guilt for not reading the notes that came with the prescription drugs when my son was relief from the hospital. This notes inform about the medications side effects. If I would know about it right after Tommy was realized from the hospital, we would immediately have him in the right treatment rather than waiting almost a year. Unfortunately, the cure affected him more than what the doctors and we expected.


At some point Doctors, Scientist, pharmacist and Parents will have to sit and talk about antibiotics. It should be medical preventive guidance for patients about what to do after a person is treated with antibiotic for a long period of time. Doctors are busy, so I think not everything should be let on their side; therefore, as petients, we should ask for more information about drugs that are prescribed and their side effects; then, we can have more control over our own health. I learned a lesson!


What will we do if Tommy have to be hospitalized again?
I pray for this doesn't happen again. It is hard to think about it because the time he was there, it was a torture for us. After a year, we still struggle remembering the 13 days he was there.  And after the hospitalization, it has taken time for Tommy to be the child he was. 


If this happens again, I will request Physical therapy, Occupational therapy and Music Therapy. As well as, checking any medication side effect previous to give it to him. 


As prevention, I am looking into getting a DNA testing because this have made me realized Tommy and Francis can have sensitivity to certain medicines like me. Since I was a child, I have had reactions to medications. Talking to other parents with kids with T21, it seems reactions to medications are more common in our kids. I know allergy or sensitivity to drugs can be life threatening, so I feel a relief I found a DNA test that will find the medications that can be dangerous for me, as well as, checking for Tommy's high risk to drug sensitivity. I will also test Francis for my piece of mind.


Meanwhile, we are following the recommendations by the Down Syndrome Center. They suggested we report these two medications as allergy, so he won't get them again. 


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Resource for parents:
One of my favorite well known nutritionist is Kelly Dorfman. She wrote the article "Preventing Sensory Processing Disorders." Click here to read the article.

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: 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.


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*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! 

31 for 21: Tommy's Omelet

Tommy is a good eater. He has period of times where he doesn't want to eat much and period of times where he eats a lot, as any other child. The other day he ate three bowls of organic cereal for breakfast. We are blessed with Tommy being a good eater. There are a few foods Tommy doesn't like. Those are egg and avocado. But he ate them in an omelet when we ate breakfast at a local restaurant a couple of weeks ago. So I cooked an omelet for him at home. He ate it! It is a very nutritional omelet, full of good fat which is essential for brain development. 

Tommy's omelet

Ingredients:

4 eggs

1/2 red pepper, chopped in small pieces

Cheddar cheese

1 avocado, chopped in small pieces

Procedure:

Mix eggs, chopped pepper and cheddar cheese. Blend all the ingredients together. Pour the mix in a pre-heated pan, which should previously be oiled with organic olive oil. Once the omelet is done, cut it in small pieces, serves together with the avocado and frozen blueberries in a plate with Elmo's decoration, Of course! 

31 for 31: My son's immune system

When Tommy got hospitalized at the beginning of this year, I got a lot of quetions in my mind about his immune system. I had a child that had a good health regardles his diagnosis, but when he got sick with a simple cold his immune system couldn't fight back the virus, so in less than 5 days I had a child who couldn't breath on his own. The  change from a strong immune system to a weak immune sytem was too drastic. So I began to search for imformation at the hospital while he was sleeping. Here is when I made the question to myself, Should we try vitamin therapy with Tommy?


I knew about vitamin therapy since Tommy was in the womb. I even found out about a doctor who was using them in other state and I was planning to travel to meet this doctor. But it was too much to handle. I didn't have my family close to me in those hard moments. So I felt I want to enjoy my pregnancy regardless the diagnosis of my son, so we didn't travel. But I did improve my diet more than what it was already. I prepared most of my meals from scratch and increased the amount of folic acid, which was already higher than the amount recommended –I talked to my OB and she said it was OK, it won't be harmful. I drank a lot antioxidants (pomegranate) because a research conducted by Washington University revealed that Pomegranate juice may prevent newborn brain injuries: "Mice whose mothers drank pomegranate juice had brain injuries less than half the size of those found in other mice." This may be the reason why Tommy did so good as a baby.


Going through many books and booklets at the hospital, I found out about Vitamin D3 and many other supplements for a strong immune system. I wanted to know more about how all those nutrients work on in our bodys and how they boost our immune system. I decided to check for the list of nutient, vitamin, minerals and antioxidants in the multivitamins specially created for people with Trisomy 21. Then, I understood why these supplements were selected to create these multivitamins. They support the immune system, brain, thyroid funtion and muscles. A good perfomance of the thyroid is scential for a strong immune system. Many kids with Trisomy 21 have thyroid disfunction, including Tommy. Most of our kids have low muscle tone and fatigue easily. Most kids with low muscle tone have Carnitine deficiency that causes fatigue because the body cannot turn the fat in energy.  This antioxidant is included in the multivitamins designed for  people with Trisomy 21.  Small amounts of carnitiare is Ok for people who has hypothyroidism, in big doses may worsen the hypothyroidism. 


Searching for multivitamin options, I found out that there are currently three multivitamins in the market that target people with Trisomy 21. Today, I will just talked about my first multivitamin option, MBS PLUS (Dietary Supplement) by NutriChem Pharmacy and Clinic. 


Should I give it a try? Which vitamin should I should choose for my son?
I called to the NutriChem lab to know more about MBS PLUS. They explain to me I didn't have to order the vitamins, they prefered I tried them first. Therefore, they sent free multivitamins samples and the book Down syndrome and Vitamin Therapy: Unlocking the Secrets of Improved Health, Behaviour and Intelligence. The book talks about how good nutrition keep our kids healthy, the importance of supplements and how they work interconnected; the effects of certain drugs in people with Down syndrome, including antibiotics. The importance of having between two and tree bowl movement per day because decrease the risk for disease. This book also mention the casein and gluten intolerance in kids with Down Syndrome. It also talks about how the oxidative stress affects our kids faster than the typical population. The author even high-light that it is not a cure, but a way our kids can life a healthier life. Therefore, if they are heartier they can learn better. 

The multivitamin topic is controversial among parents with kids with Trisomy 21. In fact, The National Down Syndrome Congress states: "To date, no vitamin or mineral nutritional supplement is known that will significantly alter the intelligence, physical characteristics or behavioral features of Down syndrome and, thus, none are supported by the National Down Syndrome Congress."


The book has good insides about how to keep our kids healthy regardless you decided to use MBS PLUS or not. The books in the USA costs about $30 and $40 in Canada. Currently, NutriChem is giving free MBS PLUS samples with a FREE copy of the book. To get the book and MBS PLUS samples FREE call at 1-888-384-7855.

Prunes -a source of energy

Prunes has a sweet taste and sticky texture, which make them fun to eat for my little boy. Prunes are highly nutritious because they contain higher amounts of antioxidants than blueberries. Prunes are high in fiber and they also are a good source of potassium. They are available during the entire year as a dried fruit, which it make them an ideal snack. Prunes also provide energy to the body, which make them ideal for my active toddler who has low muscle tone.

A Smart Nutrition

As a good mommy, I worry for my son's nutrition; specially, in those days when he refuses to eat. Because my son has low muscle tone his body needs all nutrients to boost his muscles. According to the article How Nutrition Impacts Muscle Tone by Kelly Dorfman, MS, L.D.N:

In hypotonia, a big gap exists between what a child consumes and healthy cellular nutrition. While neurologists often attribute hypotonia to imbalances in the parts of the brain that control tone, low tone always has a nutritional component.

Muscles suffering from nutrient deprivation remain underdeveloped, or if adequately developed, fatigue easily. Whether a youngster is born with low tone, or acquires it through cellular malnutrition, good nutrition can improve the condition, while the tendency toward hypotonia often remains. Eating the perfect diet is only the beginning in low tone. The nutrients must get to the cells, which must then convert them into usable energy.

Three basic strategies can improve inefficient energy delivery and boost output: increasing available nutrients, enhancing nutrient delivery, and improving energy production. All of these can be achieved with specific nutritional supplements. Nutritional therapy for low tone is a long term management plan, not a quick fix.
Increasing Available Nutrients through Diet The first step is to control the intake of concentrated sugars, such as candies, sweetened drinks, and desserts, while increasing the amount of protein in the diet. People with hypotonia tire easily
so they often reach for sweets and starches as quick sources of energy. Protein foods tend to contain more concentrated nutrients than sugary items, which have many calories and few vitamins and minerals. Improving nutrient density is critical because inefficient energy production result is loss of nutrients.

Searching for a new way to provide a good nutrition for my son, I found out about PediaSmart a organic nutritional beverage. Before giving PediaSmart® to my son, I talked to our Pediatrician about it. She agreed it was a good nutritional beverage for him.

Why do I like PeadiaSmart?
What I like about PediaSmart is that it is a complete organic nutritional beverage. According to www.naturesone.com, "A new study in the journal Pediatrics associates a link between pesticides and ADHD. The potential contributor is called organophosphate pesticides and is known to cause damage to the nerve connections in the brain, which is how they kill agricultural pests. Children are most likely to ingest this chemical through their diet. Rest assured thatP contains no pesticides and is free of artificial colors and flavors."

Searching for the nutrients in this beverage, I found it has choline among its nutrients, which is the group of B-complex vitamins. B-complex vitamins have a reputation for improving energy, which is what my son's muscles need. According to a research conducted by Barbara Strupp, Professor of Nutritional Sciences and Phycology, "More choline during pregnancy and nursing could provide lasting cognitive and emotional benefits to individuals with Down syndrome and protect against neurodegenerative conditions such as Alzheimer's disease, suggests a new Cornell study of mice."

PediaSmart is sugar free, but it has natural sweetness that are essential nutrients for the brain.

So this beverage meets the nutritional facts explained above by the nutritionist Kelly Dorfman, which make me feel confident about PediaSmart®. Because I work full time, it is hard to cook everything from scratch as I like, but I always look for a smart nutritional way to provide a balance diet for my son's development.

PedieSmart is sold on line at www.naturesone.com

and organic retail stores.

PediaSmart Facts

The facts below can be found on http://naturesonedirect.com/peva.html

Recommended Age: PediaSmart® is recommended for children ages 1 through 13 years. This product is not intended for infants less than 12-months of age.

Serving Options: PediaSmart® is best when served chilled. Parents may also blend with crushed ice for a shake like beverage. Blend various fresh fruits with PediaSmart® Vanilla to offer a fruit flavored beverage.

Breakfast: PediaSmart® is a good option for children who tend to skip breakfast. This beverage has been scientifically formulated to function as a meal replacement providing the appropriate blend of protein, fat, carbohydrate, vitamins & minerals that will help a child start their morning strong.

Snack: Most snacks and beverages for children are loaded with artificial flavors, colors and sweeteners and contain corn syrup or even high levels of caffeine. Consider PediaSmart® as a nutritious after-school snack instead of traditional snacks like soft drinks and chips. A child will consume 255 calories drinking an 8oz serving of Coke® with a 1oz single serve bag of potato chips. Compare this to 237 calories of an 8oz serving of PediaSmart®, which includes protein, good fats, calcium, amino acids and vitamins & minerals.

Sports: PediaSmart® provides great nutrition for child athletes before practice or games. PediaSmart® is well tolerated as it is easily digested and provides long lasting energy.

Medical Food: PediaSmart® is a good source of nutrition for children who suffer from chronic illness, growth failure, injuries or during recovery from surgery. PediaSmart® is nutritionally comparable to conventional nutrition beverages such as PediaSure®. It has been formulated to meet or exceed 100% of the Dietary Reference Intakes (DRI) and can be used as a sole source of nutrition and in a feeding tube under the supervision of a healthcare professional. The specific amount to be used daily will need to be determined based upon a child's nutritional and medical status. This product is lactose-free and gluten-free.

See how much Tommy enjoy his drink.

Tommy drinks PediaSmart® vanilla flavor since last July.

We mainly use it for snack. The taste is amazing!

I have to remind myself the drink is for Tommy and

not for me. He drinks 8 oz non-stopping!