Back to School Education about Spina Bifida Awareness

Our Vision for HAYDEN

Our vision is simple.  We want Hayden to be given the same opportunities as any other student in the school.  We want him to LIVE, LOVE & ACHIEVE whatever dreams that he wants.  It is important to us that Hayden be seen for what he CAN do & not for what he cannot do.  We want Hayden to reach his full potential academically & socially.  If his teachers & staff have high expectations for him, he will SUCCEED. 

VALUES that are important to us as a family:

• We value the celebration of Hayden’s STRENGTHS 
• We value the use of People First Language ex:  My student Hayden has a wheelchair, not Hayden can’t walk. His legs may not work, but his ears do.
• We value the appropriate responses by adults to questions regarding Hayden’s differences.
• We value Hayden’s inclusion in all activities fostering his INDEPENDENCE.
• We value our parental role as a part of the team that supports Hayden in his education.
• We value his school experience & private therapy, which is helping him reach his FULL POTENTIAL.

SOCIALLY

Hayden loves to be social and loves being around people.  He has a big sister, Hanna (3rd grade) and a little brother Garrett (2.5yrs).  He has lots of friends and Hayden loves the ladies too.

A lot of things make him unique.  He has a lot of gear and equipment that most kids don’t have.  He has 2 wheelchairs, AFOs, HKAFOs, RGOs, a stander, a walker, a feeding tube & a brain shunt and many diagnosis.

HAYDEN’S INTERESTS  

Hayden is a happy boy.  Hayden loves all activities, he loves to ride horses at hippotherapy, he loves to ride the bus to school, basketball, t-ball, football, to race his wheelchair, to go swimming, to play t-ball, to cheer for his sister and to be a big brother. 

MEDICAL MATTERS

as provided by another special needs father Matthew Linden

Spina Bifida/Myelomeningocele: Spina Bifida (SB) is the most common seriously disabling birth defect in the United States. An estimated 5 children are born with SB every day in the US. SB occurs during the 4th week of pregnancy before many mothers know they are pregnant. In cases of SB, the spinal column fails to close properly which exposes the spinal cord to amniotic fluid. This exposure leads to damaged nerves. SB can occur anywhere along the spine – from the neck to the tailbone. The higher the defect occurs on the spine, the more severe the damage. Hayden’s level is L5-S1 which is considered severe.

Arnold Chiari II, III & IV Brain Malformation: Hayden’s brain has to work harder than most with his variety of abnormalities.  The Chiari is a herniation of the brain that goes into the neck.  His cerebellum is not only displaced, he also has a tethered cord as well as hydrocephalus. He has a lack of cerebellar development as well as a thin brain stem and splits in his spinal cord.

Hydrocephalus: Most children with SB have Hydrocephalus (HC). HC occurs when the spinal fluid produced in the brain does not properly drain into the spinal column. For this reason, many children with HC have a tube (shunt) placed to drain the excess fluid. Hayden’s shunt is behind his right ear. There is a tube that runs underneath her skin to his abdomen where the excess spinal fluid is absorbed by his body. Hayden’s shunt does not limit his activities in any way. 

Symptoms of Shunt Malfunction: Getting a simple cold can look like a shunt malfunction.  An onset of excess sleepiness, lethargy & vomiting require a trip to the ER for testing.  Shunts do fail from time to time for a variety of reasons. Symptoms of shunt failure would include “Sunset Eyes” and/or a constant headache that would manifest itself by long-term inconsolable crying. Sunset Eyes is when the pressure behind the eyes forces them to look downward as if the pupils were a setting sun and the lower eyelids were the horizon. 

Epilepsy:  Hayden has recently been diagnosed with seizure activity.  He is on twice a day medicine to try and control the episodes.  He also will have rescue medicine at home and at school should he have a major seizure.  There is a seizure action plan at the school.

Scoliosis: In some cases, children with SB have scoliosis a bend in the spine. Hayden needs to be placed in any chair that gives trunk support.  Positioning in his wheelchair is also important.

Hypotonia: Hypotonic patients may display a variety of objective manifestations that indicate decreased muscle tone. Motor skills delay is often observed, along with hypermobile or hyperflexible joints, speech difficulties, poor reflexes, decreased strength, decreased activity tolerance, rounded shoulder posture, with leaning onto supports, and poor attention. For instance, hypotonia also leads to constipation. In some cases, muscle tone improves over time, and we hope that Hayden may learn or devise coping mechanisms that enable him to overcome the most disabling aspects of the disorder. 

Digestive Tract: Hayden has a g-tube that he gains most of his nutrition.  Instructions for emergency replacement are in his bag.  It needs to be placed within a half an hour or he should be rushed to the hospital for placement.  He can eat and drink on his own as well.  He also has a severe gag reflex that can cause him to vomit.  He is watched carefully when fed because of his gag reflex due to his Arnold Chiari.  Hayden’s digestive tract does not work as fast as a typical child’s. This can also lead to vomiting as he has slow motility of his food.  

Neurogenic Bowel & Bladder:  Hayden has a high pressure bladder like a hard basketball.  Hayden can void on his own but not completely.  At 5 years old we are catheterizing him every 4 hours.  Instructions are in his binder and every effort should be made to not touch the catheter to avoid infection.  Hayden also has little control over his bowel.  He is on Miralax as needed and can push to eliminate but it is unclear if there is much sensation.

Wheelchair: Differently abled people view their wheelchair as a part of their body just as a typical person views their legs as part of their body. When you touch a person’s wheelchair, the same rules of etiquette as touching a person’s body should apply. As a general rule (and for safety), only adults should push Hayden’s wheelchair. That being said, opportunities for Hayden to get physical exercise are limited so whenever possible, he should be encouraged to self-propel. As a matter of safety, the brakes on Hayden’s chair should be locked whenever he is taken out or put in his chair. Hayden should NEVER be left unattended near a slope or flight stairs as he will intentionally try to roll down them.

In an Emergency: Should an emergency arise, Hayden should go to Dell Childrens’ Hospital

Phone: 512-324-0000

Parent’s can also be reached by cell phone:

TEACHER MATTERS

as provided by another special needs mother Kim Johnson

What you expect of me matters… 

Because I will rise to the level you set for me, and I have many lofty goals to achieve. 

What you think of me matters… 

Because I will sense what is in your heart, and it will shape not only how I feel, but what I do. 

What you say of me matters… 

Because you are setting a tone, and leading my way. You are the voice I wasn’t given to help others understand not just what I have, but who I am.

What you accept about me matters… 

Because if you meet me where I am, and embrace me for what I have to offer, together we can shoot for the moon and at least find the stars. 

What you do for me matters… 

Because when you offer me not just your time, but your devotion, and not just your attention, but your passion, you are not just fulfilling your duty, but rather answering a calling. 

What potential you see in me matters… 

Because if you can envision my wings, then I will learn to fly. 

What investment you make in me matters… 

Because if you dedicate yourself to making me stronger, it is not only me who will be bettered, but you will be, as well. 

What connection you have with me matters… 

Because if I know you care, then I will care. You will reach me, and I will grow. 

What attitude you have about me matters… 

Because if I am seen as a blessing instead of a burden, my world will be much brighter, and my achievements will be much greater. 

What you believe about me matters… 

Because if you see my strengths and not my weaknesses, there is no mountain we cannot climb. 

What hope you have in me matters… 

Because the dreams you hold for me are woven into every step of my journey, and when those dreams are big, so, too, are my accomplishments. 

What ACTIONS YOU TAKE because of me matter… 

Because you are not only my teacher, but my advocate. The role you take in my life helps dictate the very path down which I will travel. Your power can help open doors for me that now stand shut, raise standards for me that remain far too low, and redefine the boundaries in my life that will either hold me back or help me soar. 

Yes, MY TEACHER MATTERS, AND SO DO I!

Hayden's wonderful teacher invited us to present about SB the second week of school.  We were very excited to present.  He showed off his AFOs, he showed how he can stand, he showed how he is trying to work on transfers, his feeding g-tube button on his g-tube dog, he showed his nursing skills.  He then showed all the things he had in common with the class and all the things he can do through pictures on the smart board.

He was thrilled to show everyone what makes him so special.  The whole class asked the greatest questions.  Looking forward to a great year full of potential!

Attached is what everyone got to take home:

This is what I learned about my friend Hayden Trigg with Spina Bifida:

What is Spina Bifida?

It is when you are born with part of your skeleton, your spine, on the outside of your body causing lots of problems and lots of surgeries.

Things that make Hayden unique:

• He has freckles and spiky hair
• He was the poster child for Seton Hospitals and Dell when it opened
• He has had 17 surgeries
• Hayden has lots of things to help him get around (wheelchairs, walkers, standers, AFOs).
• Hayden uses a tube that feeds his belly and he has a tube in his brain.

Things that make Hayden like Me:

• He has a baby brother 
• He has a big sister
• He plays t-ball 
• He likes bowling
• He likes basketball 
• He likes flag football 
• He likes swimming 
• He likes air hockey
• His favorite food is chocolate
• He loves ice cream and McDonald milk shakes

The only true disability is a bad attitude. We are all differently-abled.

There is a link through the Spina Bifida Association for Educators that we printed and attached:  http://spinabifidaassociation.org/learn-about-sb/educators/  

A "CURE" for Spina Bifida = Stem Cells + fetal surgery

You can read the full article here:  stem cells + fetal surgery https://www.ucdmc.ucdavis.edu/publish/news/newsroom/9953

This interview has me invigorated and moved to tears for many reasons. Some days I hate to see Hayden's little body struggle with illnesses and get frustrated and use the word can't. People with Spina Bifida are just like the rest of us, they just have more to endure and do it with greater grace. As a parent, my job is to never quit trying to make my kids' lives the best they can be.

Dr. Farmer is one of the doctors we met with when we went to San Fransico for the MOMs study for in-utero surgery before Hayden was born. We were fearful and told not to do it because it was too risky....but we prayed and went forward knowing it was Gods will for us to go on that journey. It was just a study then and now it has proven to be beneficial (not a cure) and is practiced in several well established children's hospitals across the country.

Last summer we went to Mexico for Stem Cell surgery. For years I was discouraged by many doctors that cared for Hayden and by many various people that what we were doing was too risky...but we prayed and saved and made that journey too on faith.

This is the first notable US doctor saying that STEM CELLS WORK! The US is the last to market for those that are the most vulnerable and need the compassionate treatment. I am thankful for my network of families like Warrior Families Beating Spina Bifida Foundation that is working to get the treatment we want and get the FDA to stop holding it back. I tirelessly call & write doctors and try and meet researchers. In a country that believes in innovation and invention we need to let scientists work. We shouldn't have to go outside of the US to get this done. Enough waiting!

Getting released!

We are happy to be together today.  So happy that Dr. George says we can go home!  Hanna is going to be the next intern at the hospital.  Hayden got into his wheelchair with dad and the physical therapist.  

We love Morgana and Dr. George.  They have been our favorite for 6 years.

Post surgery and service

It is hard to summarize all that we've been through in the past two days and starting day three.

On Tuesday prior to coming to surgery, we had a fun day together with my boys and our little monkey while we enjoyed the children's museum.

 

This picture is somewhat symbolic as we climb to the top to overcome the challenging ropes of the surgery.

Earlier this week we were also visited by a very special foundation that grants wishes for chronically ill children. This is just a teaser of more things to come. It has been a wonderful experience to start and have something to look forward to as Hayden recovers.

We were also blessed by my in-laws, Ralph and Gwen, who drove from New Mexico to come and take care of Garrett and Hanna so that Scott could work and I could focus on Hayden in the hospital.

Many hospital trips for Hayden not only affects him but also his siblings. It is good to see that special attention is being made for them so that they may continue and have joyful experiences.

As a testament to blessings and prayers offered, Hayden did remarkably well the first day immediately following surgery. Thank you to so many that prayed for not only Hayden's well-being and for our family's, but so that the surgeon would be inspired and that his hands would be guided to be used at the best of his ability. The surgeon, Dr. George, said the surgery went as expected and that he did well. He even made a bandage for Curious George to match Hayden's back.

Hayden came out of anesthesia better than normal. He did not vomit or cry with delirium. He was alert and received many visitors. 

We are fortunate to have such a great family and church family that has taken care of us. Two of our friends that are nurses in the hospital came to visit him as he recovered from surgery. Many friends from school and church came to visit the first day as he was alert and happy to see familiar faces. I only got a few visitor pictures but they were all equally appreciated.

The volunteers that come through with toy carts and dogs are fantastic!

 

This day Hayden had a visitor from his school nurse as well as two friends from church bringing him stickers and to deliver rockets. He's gotten his share of balloons, chocolate and toys to make it tough to haul home.

Hayden's sweet church primary class made him a book of well wishes and supplied him with some toys and coloring books.

Late in the evening after anesthesia wore off, the pain settled in and it made for a long restless night. 

For those of you that might at some point in your life go through tethered cord surgery, here is my best advice/tip for managing pain. Often for those that are in wheelchairs, a protective responses is to bring your knees to your chest and curl up.  That is terrible thing to do when trying to heal by not stretching the incision.  We found that knee/leg immobilizers coupled with muscle relaxers help relax the legs to lay flat for the healing process. Secondly, when you have limited sensation in your feet, it is always good to ask to have the IV placed in the foot so that administering medicine throughout the night does not disrupt sleep and creates a little less anxiety for regular hospital trips.

By the second day the medicine managed the pain enough to where Hayden rested with the help of a fabulous machine from the hospital that projects onto the ceiling and has bubbles and mirrors and lots of sensory items for those that cannot move from their bed.

Today is day three. Hayden is increasing by 10° in the prone position with the ultimate goal of sitting in a 90° bend. The incision site looks good. There appears to be minimal cerebral spinal fluid drainage and trace amounts of blood. Neurosurgery believes that we may be discharged Sunday evening or Monday if he can achieve his physical therapy goal of being transferred into his wheelchair so that he could be cared for at home.  Currently he is in a lot of pain just rolling from side to side with assistance. We will not be rushing his recovery as slow and steady is the best course of action in regards to recovering from spine surgery and scar tissue. 

I want to acknowledge that while having a special needs child has a special and unique set of challenges, it has many rewards.  As a parent we can ESPECIALLY partake in profound spiritual enlightening experiences, we are provided experiences to grow depth of our own personal character, it provides joyful rewards by witnessing Christlike attributes and actions in others, and every day that we are blessed to have with our child, we are humbled and inspired by the grace of a spirit that is patient, meek, strong, brave and innocent.

We have been overwhelmed with feelings of gratitude by those that want to offer help and have offered many encouraging and caring words. I am not eloquent enough or organized enough to receive or orchestrate how to utilize this help. There is a fantastic article written by someone with a far greater skills than mine at summarizing how you can help.  I have attached it for your review. 

http://segullah.org/daily-special/call-me-if-you-need-anything/

Thank you so much for all of those that have helped and spared this mama from stress eating terrible hospital food by providing good meals for our family and for me being in the hospital caring for Hayden.  Thank you for those of you with your good intentions and good humor.  Our burden has been lifted by some silly friends too who send me these inspiring belly laughs.

Attention mothers of differently-abled children:

Lastly, I have been feeling less than normal. It is difficult for me to find the words that I want to use and I have found my memory to be slipping. It was great to see this article published recently and provided me a little validation.  (Reuters Health) - Mothers of kids with disabilities might be more forgetful as they age than other mothers, according to a new study that suggests the stresses of parenting a disabled child wear on mothers’ minds over time....

http://www.reuters.com/article/2015/04/08/us-health-parenting-disabled-idUSKBN0MZ2DA20150408

Tethered Cord surgery #17

This is Hayden second tether cord surgery. 

Last night, Ralph and Gwen made the trip from New Mexico to help us take care of our other children while Hayden is in the hospital. I married well.  

We are so grateful for the support and prayers of our family friends and community.

Hayden's first tethered cord surgery was 18 months ago. He is six years old. We left our home at 5 AM for a 7 AM surgery.  His mood was joyful this morning.  He has quiet courage and a peacefulness about him.  His doctor, nurses and anesthesiologist know him well. He is in good care.

"Without the rain, there would be no rainbows." Gilbert Chesterton

Adaptive lunch box for infinity pump

Some mothers and fathers look for creative ways to accessorize their children's G-tube feeding pump. We also look to accessorize all of the mobility devices and make them unique in our own.

Here is a picture of how we have adapted a lunch box to fit the infinity pump as well as a backpack to put on the back of the wheelchair.

Two Months Post Stem Cell Treatment

We have been hesitant to post this blog as we have felt great responsibility to those who will be reading it and looking to it for advice as weather or not to get their own stem cell treatment.  We have wanted to post results that were noted by other medical professionals and not just from us as parents with anecdotal evidence.  However, much of what we note is anecdotal evidence as there are not currently any scientific experiments to empirically test the risks or benefits of stem cells on children with Spina Bifida or the host of other diagnosis that Hayden has. You can read about and talk to others families/individuals with multiple similar experiences as ours.  To date, we have not yet communicated with anyone that has had a bad outcome after having undergone stem cell treatment.  Please see the disclaimer that we have noted below that is also referenced on the Nova Cells Institute web page.

Since Hayden's Stem Cell Treatment in Mexico at the end of June, we have seen a lot of progress with him as we keep an open mind to what we are observing.  Grace and Abel of Nova Cells have been wonderful to continue and to carefully follow up with us as to the progress of Hayden.  The staff and facilities were fantastic.  We were embraced by the culture and the staff.  They have helped us to break through our fears and start the stem cell treatment process.

Testing out sensory issues one day post op and using right hand to play in the sand.

As natural skeptics and analytical people, we have had some doubts as to correlating what we were observing was directly the result of the stem cells or if it were natural developmental progression.  With typically developing children, you expect natural progression.  With Hayden, progression is earned.  Upon our return and thorough testing, our pediatric neuropsycologist has stated that Hayden is to be treated similarly to a person with traumatic brain injury and to seek intensive therapy.  The whole written report is to be summarized and updated at a later date as it takes 3 weeks to get the final report.  He also has similar neurologic conditions to someone that suffers from ALS (like those ice bucket challenges) Symptoms often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look "thinner" as muscle tissue atrophies.

We did not hope for or believe that the stem cell treatment would work as a wide sweeping miracle cure but expect to note and document improvement for 4-6 months post treatment as it can take a while for the stem cells to complete this single treatment of 5 blood type matched & donated umbilical cords to do their work in his system.

lumbar puncture where they administer the stem cells

So far, Scott has kept a record of the progress since his treatment with the various areas of function namely cognition, improved balance and increased motor skills from the dates below:

6/29-7/4:  One week post operation:  Trip to Sea World and Disneyland for national Spina Bifida Association convention.  He has increased daily endurance and stamina.  Click here to see the family updated picture blog on this trip: Texas Triggs blog

7/15:  Hayden has most noticeably begun to initiate a greater dialog speaking and initiating conversation, wants and communicating humor.  Previously, Hayden would respond with prompting to someone if his was spoken to.  Now he is initiating asking for food, to play his iPad and telling us when he is tired.  The biggest observation is that he speaking in complete sentences, which we have never consistently seen before.  His pitch and tone in his voice is stronger and clearer to understand.  Every therapist, PT, OT and nurse has noticed that is the most visible improvement.  Stem cell therapy for Ataxia (no development of the cerebellum part of the brain) can bring improvements in speech, swallowing and mental alertness all of which are the most noticeable at this point.  He has noted measured improvement from his OT with balance and protective reflexes which were not present prior to the treatment.

You Tube Channel where I have linked several videos of Hayden's evaluations before and after.

BEFORE

protective reflexes and balance noticeably weaker

Timid driving before stem cells we need an after video to show you just how confident he is now and capable of going for a long distance.

The three that I have posted on this blog are of his reflexes and his marked increase in speech & increased fine motor skills 2 weeks post stem cell treatment.

AFTER

Hayden also attended a week long cowboy camp at the Red Arena that provides hippotherapy (horse physical therapy).  He loves the horses and got to ride his favorite Fiord horse, Hans, for the week.  He loved every minute of it and we loved seeing his happiness shine through.

Horse Camp with big sister Hanna & friends

Cowboy Hayden in the Red Arena round up rodeo & fundraiser

7/17:  Hayden has increased body awareness.  He is noticing and describes where his pain is whether it is in be in his back, arms, legs etc.  It is a bit of a mixed blessing to get sensation where you haven't had much before.  He is communicating getting sensation expressed as pain in his lower legs (below his knees) and right hand (helper hand as he is left hand dominate).  The nerve awakening creates pain/discomfort.  Hayden complains about this when he does his standing therapy.  This is a mainly a great thing as well as we are seeing increased circulation in his feet.  Hayden is also able to slightly move his toes and has some reflexes as he jerked his foot back for the first time clipping his toenails.

7/20: Hayden did great during our 1st walk in our new neighborhood.  He was able to drive his power chair almost completely unassisted.  Most of the time he just needed a little encouragement.  This is a wonderful milestone as it has not been easy for him.  Cognitively he seems to be picking it up easier and is not discouraged.  He has to use fine motor skills to use the joystick to drive the chair that can that can go pretty fast.  He has struggled with reflexes and balance so coordinating when to start and stop the chair has been difficult.

We took his power chair the last weekend in July to the Texas Spina Bifida Day at Morgans Wonderland and he did great.  He is able to go fast and he shouted, "I feel the wind in my hair!" He has learned to manipulate the chair down and up higher so he can see over people and grab things he could not before.  Seeing Hayden gain even more independence is our goal and we will continue to strive for independence.

7/22:  Continued increased vocabulary.  Hayden is engaging in conversation, rather than just being a "spectator" he is contributing to the conversation.  He is using new words, that absolutely crack us up.  
We were in our new pool the other day and Hanna splashed him with water and he said "that is just plain rude ".  Since he has noticeably increased sensation in his right hand, he continues saying it hurts and asks for it to be massaged.  Hayden's response is, "oh that feels great".  He also did this two days after his treatment.  Tonight he said that when I was cathing him that it hurts.  Normally I would react differently to this, but I know he has increase sensation and can feel the cath.  This also makes it more difficult to cath as his sphincter is reacting and making it harder to pass.  He tells me to be extra careful.  Now this is a normal part of his routine, but once again it is good to know of the increased sensation he is feeling throughout his body.

He has completely outgrown his RGOs on the left that are not a year old, HKAFOs from when he was 3 and his 1 year AFOs.  His growth has been pretty slow especially in the feet, but with his g-tube and tethered cord surgery he has had a growth spurt.

August:
Increased appetite:  He is again willing to try reintroducing new food to smell and taste.  He asks for food regularly and his blended tube feeding is more complex with a large variety of ingredients.

Takes verbal directions:  His therapists have noticed a gain in spacial awareness.  I can give Hayden a chore and he will listen, initiate and follow through.

Everyday we see him getting stronger using his manual wheelchair.  I was observing him the other day and you could see his focus and his arms working extra hard to propel him as fast as he could.  His cognitive awareness has increased as he seems more aware of his surroundings.

I know that our Lord and Savior Jesus Christ has blessed our family through this entire experience.  How blessed we have have been by the Lord and guided to the good doctors and Nova team as well to provide this treatment for him.  I know with continuted therapy and encouragement that Hayden will be able to accomplish so much in his life.  What a blessing this experience has been and will continue to be as we see wonderful progress with Hayden.

With the improvement we have seen, we know that he could benefit from repeated treatments and continued daily therapy.  Most importantly we have noted NO NEGATIVE side effects from the surgery or treatment other than the earlier noted effects from coming out of anesthesia (his typical anesthesia nausia/vomiting).  We thank you with our deepest gratitude for those of you who financially supported us on this pioneering stem cell journey.  We believe that he will need more treatments that come with a large expense but putting a price on cognitive and motor function and increased quality of life is priceless.  If you know of any corporate donors that may want to sponsor his next stem cell treatment please show them this wonderful pioneer.

*Spina Bifida clinic is in September and we hope to see if the doctors notice any marked improvement in the imaging and overall

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