To be honest, feeding tube formula was not something I ever thought would be a factor in my life. After a traumatic accident and brain injury of my favorite person in the universe, tube feeding has become a focal point in my life. As people who can eat orally and make decisions about what we put in our bodies, it is hard to imagine a life where that choice is mostly taken away. While trying to advocate for my brother to have a choice of high quality organic, functional food, I became immersed in a world of amazing people who are tube fed or have tube fed children and want the best for themselves and their families. Some of them use conventional formulas and know that a better option need to exist. Others blend their own food and hope one day there might be an easier answer than blending each and every meal. Others are in a hospital setting, and their families are not allowed to bring in organic blended food from home. The main frustration I felt was a lack of choice. I knew the kind of food my brother would have wanted, but we struggled to find a option that would suite his desires (Ryan's story). We found were so happy to find Liquid Hope, and it could be fed to him in the hospital, with minimal work on the part of the nurses.
The following story is written by a fabulous mom who believes that a real food diet will help her son overcome some of the many obstacles he is facing. We are planning on doing a pediatric study on our real food feeding tube formula, Liquid Hope, which would help children everywhere who are fed via feeding tube. Check out the campaign here: Creating Hope. With your help, we can prove to insurance companies, doctors, and hospitals that real food nutrition can make a very positive difference! -Megan Concannon
Tyler is a 7 year old child with neuromuscular scoliosis, kyphosis, thoracic insufficiency Syndrome, Down syndrome, CP, autism, reflux and dysphasia.[/caption]
This is Tylers Story:
At the age of 2 weeks, Tyler developed pneumonia which led to congestive heart failure. His caregiver, at the time, did not notice he was not breathing. He was taken to the doctor for a routine check-up and it was discovered that he was not responsive. He was resuscitated but it was unknown how long he had gone without oxygen.
Upon release from the hospital, he was placed in our home. Immediately we were aware that he was unable to swallow without thickened food. After investigation the results were the diagnosis of dysphasia in 2007.
He has been on a prescription formula his entire life, from infant formula to an enteral formula fed through a G tube. Currently he is cared for by his adoptive mom on a full time basis with CNA assistance 15 hours a week.
Tyler has undergone 27 surgeries, mostly spine related, including a tethered spinal cord release.
Tyler has problems with excessive mucus and drainage, lowered immune system, and has run a low grade temperature since September 2009. When sleeping at night, he chokes frequently.
He has been hospitalized 5 times for infections resulting from a lowered immune system both viral and bacterial. He has had PIC lines. He has had many infections treated at home under professional nursing care. He has developed pneumonia many times, treated in hospital and at home under nursing care. He has had repeat ear infections. We were told his white blood cell count was low and a bone marrow biopsy was discussed. We were told his iron levels were low and adding a supplement was discussed. Convinced that his formula was deficient or his body was not absorbing needed nutrients to fight off infections, we decided to attempt juicing for him. By adding juiced vegetables to his tube feeding regime we saw some changes but not enough.
Tyler has rod extension or replacement surgeries twice a year to maintain his rib cage. He has to endure many more surgeries before his spine reaches maturity in order to have a spine fusion. We estimate another seven years or more of surgeries.
He has had problems with constipation his entire life. He has always had to be in a standing position with support to defecate. Almost three years ago it became severe constipation. We were instructed to use 2 laxatives, polyethylene glycol and docusate. When using both without results, I added powered magnesium and liquid glycerine suppositories. He becomes so constipated that it results in nausea. We thought that the severity of his constipation was due to reattachment of his spinal cord or nerve damage. We requested an MRI recently and after consultation with his specialist we began to look elsewhere. I became concerned about the laxatives when I recently read a study of the long term effects of polyethylene glycol. That caused me to look further into nutrition as a way to solve the inflammation and constipation he suffers.
We know that overall health is determined by the quality of food. Inflammation levels, function, healing time, mucus build up, bone density and many other aspects of Tylers physical self are compromised. I believe that consuming synthetic foods can impact short term and long term well-being. I also believe that a whole foods diet will quickly improve his quality of life. I believe that the proper nutrition can improve physical and cognitive function.
Liquid Hope is the first enteral formula offered on the market that provides a high quality food source. Liquid Hope is a product created for life.
I feel very passionately that this whole food, organic product will make a big difference in my childs life and health. Please support us in our efforts to prove to the insurance companies that this product will save millions of dollars in health costs. Please help Tyler. Give him a choice. Give him a chance