Tuesday, July 23, 2013
Twenty-five years ago, i had a dream that i would have a handicapped child needing sign-language to communicate. Earlier that year i was told i wouldn't be able to conceive children or maintain a pregnancy due to a hormonal imbalance, i was told to look into adoption.
I signed up for a sign language class through our local community college and within a month i was pregnant. My hormones remained low, but within the range to maintain a pregnancy, thanking the LORD for unsuspected twins to maintain that hormonal balance. At 30 weeks gestation, my boys were born, with all expectation that one would be deaf. So many ear infections and "tubes" but no hearing loss.
After a couple of miscarriages of singles, 6 years later, i was pregnant again with twins. I lost one of the twins late in the first trimester, she was reabsorbed, but it kept my hormones high enough to continue with the pregnancy until 23 weeks when i went into preterm labor and put on bed-rest. At 33-weeks our son was born with amazing APGAR scores. At six days he was released from the hospital. He was slow to develop and by 4 months i guessed something wasn't quite "normal". At 7 month the pediatrician thought we should see a neonatalogist. By nine months, he had had an MRI showing brain damage, cerebral palsy with mixed tone was his diagnosis.
By his second year, i had a dream that food would heal him. I didn't know what that meant then, nor know what it means now. What i do know is it has been a journey that has changed my life!
At his 18-month check-up, our pediatrician, suggested stopping the remainder of his vaccinations due to febrile seizures with each vaccine. He also recommended the "autistic diet" and the Feingold Diet, a diet free of gluten and casein and a diet free of artificial additives. We started with the Feingold Diet.
A few months later, our son became lactose intolerant, so dairy had to go whether we were ready or not.
It took us a year to remove gluten from his diet. The diagnosis of celiac helped that along. OK, so maybe our pediatrician was onto something.
Our son learned to sit-up and walk the year he started the Feingold Diet and going Casein free. He also learned a few signs, eat, drink, more, cookie... Once he was off gluten, the head banging stopped and he started sleeping through the night.
He has been off of soy since he was 4 and so many other foods have come and gone and come back due to allergy testing results. Soy, dairy, gluten, kidney beans, and seafood have remained a constant "no-no"
He was still considered a failure to thrive child and by the age of 13 he was 4'5" and 65 pounds. He was experiencing episodes of frequent apnea and cyanosis (multiple times within a waking hour). He had a 6 day stay in N-ICU to figure it out. He was also experiencing extremely high level of cystine and guanidine acetate for 7 consecutive samples over a year period, indicators of a metabolic disorder. While in N-ICU, another had his third MRI and a blood brain barrier test to check for the metabolic disorder. He was normal (MRI, genetic oligo array, genetic testing...) and showed no signs of any brain damage or cerebral palsy. He was given the diagnosis of Retts and he was in the latter stages of it. His life expectancy was short. He would eventually stop breathing. With that information, we were sent home.
Two years later, i had a dream that i needed to investigate his diet again. The metabolic disorder was an amino acid disorder much like PKU, protein needed to be reduced for normal functioning. What if we put him on a vegan diet? We went to the pediatrician and got a "monitored OK". We would come in for weight and height checks every 2-weeks and if there was any sign of weight loss, animal products were added back to his diet. The first 2-week check-up, he had gained a couple of pounds and grown a 1/2 inch. He was also making eye contact, vocalizing and less frequent episodes of apnea and cyanosis. By the end of 6 weeks, i sent his metabolic doctor a video and requested a urine analysis checking his cystine and guanidine acetate levels. The results were so amazing the metabolic doctor arranged for an appointment within a month to see him and others. His cystine and guanidine acetate levels had reduced 1000 fold and 10 fold respectively, well within the normal ranges.
Two years later i sent the same metabolic doctor a video of our son walking the dogs and vocalizing, and this time asked for an appointment. He was no longer failure to thrive weighing 101 pounds and 5' 1". He greeted the doctor with a handshake and making eye contact, His cystine and guanidine acetate again are well in the normal range. Much to our dismay, our insurance no longer was covered by this establishment and our bill was $7234. When the doctor called to discuss our return visit, i explained our situation and our bill was taken care of by the establishment in exchange for our dietary changes. He now shares them with other patients and if one is interested has him/her call me for more information.
We have found a nutrient dense diet has brought our son back to life. He is now 5'3"+ and still growing. His vocalization continues. His fine motor, gross motor, response, and social skills have made major gains as well.
As we continue this lifestyle journey, we have been introduced to a more raw diet and have watched him thrive even more.
So how could i not continue this journey?