"I'm the parent of a medically complex child. Three weeks after a beautiful birth my son developed 24-hour colic. I soon discovered my son was reacting to what I ate. Slowly I whittled my diet down to three foods. When it was time to introduce my son to foods, he began to react. Two hours after ingestion my son began projectile vomiting the likes of which I had never seen. When he began to turn gray, I almost called 911, he finally stopped vomiting.
At the age of 11 months my son was diagnosed with Food Protein Induced Enterocolitis Syndrome or FPIES - "a rare food allergy. It affects mostly children and infants. This allergy occurs in the gastrointestinal (GI) tract. It causes chronic, often severe vomiting and diarrhea." There seems to be no rhyme or reason for what can be an FPIES trigger, but the most common triggers are rice, dairy and soy. Due to the severity of my son's allergies he was only able to safely eat 3 foods for almost 1 year. He was a chronic reactor to most foods which mean that he would have diarrhea with blood as his main symptom. Sleep for him and for me was almost nonexistent. He suffered from reflux and pain despite his limited diet and medication.
Doctors, practitioners and specialists thought these symptoms would improve with age as most children with FPIES grow out of the condition by the age of 5. However, I started noticing that Remy was refusing to eat food and was losing weight. I was worried. I began to entice him with various foods. I noticed increased urination and mentioned it to his pediatrician in December 2014. My concerns were dismissed.
In March of 2015 Remy began breathing heavily. and then he had an "episode" which was almost seizure-like followed by massive bouts of diarrhea. My husband and I rushed him to the ER and despite my specific concerns about some type of acidosis (due to heavy breathing), three pediatricians determined nothing was wrong whereby we were sent home. Because I knew their diagnosis was incorrect, we went to another ER where my husband requested a blood sugar check. The results came back with a blood sugar of 458 and a diagnosis of type 1 diabetes.
Then we spent one week in Pediatric ICU during which time we also learned that Remy had a heart condition called Wolff Parkinson White Syndrome which causes irregular heart beats and can only be corrected by surgery. We were sent home with a monitor halter to record his heart for 30 days and a crash course in how to keep our son alive with insulin" - a hormone made by the pancreas that allows your body to use sugar (glucose) from carbohydrates in the food that you eat for energy or to store glucose for future use. Insulin helps keeps your blood sugar level from getting too high (hyperglycemia) ...Type 1 diabetes happens when your immune system destroys cells in your pancreas called beta cells. They’re the ones that make insulin.
"Type 1 diabetes is more complex with Remy due to his food allergies. He is allergic to corn. When a type 1 diabetic becomes hypoglycemic, the quickest treatment to avoid seizure/coma/death is dextrose (made of corn). In fact, Remy reacts to most processed food items even if the amounts of the additives are small - sorbitol and sugar alcohols all cause bloody diarrhea.
After we returned home from the hospital things seemed to stabilize and we were focused on diabetes management and food avoidance. We met with a geneticist who determined that Remy has malignant hypothermia - (a disease that causes a fast rise in body temperature and severe muscle contractions when someone with the disease gets general anesthesia. It is passed down through families.), SCAD 1 deficiency, ACTN2 mutation, and minimulticore disease.
We currently don't know the extent of the disease because it requires surgery under anesthesia. Due to his type 1 diabetes, Wolff Parkinson White Syndrome, and malignant hypotherima it was recommended that we wait before proceeding with what could be a potentially life threatening surgery."
"Then the staring spells began. Two 48 hour video EEGs later, we were unable to determine the cause and we were told it's possibly related to Remy's age and the brainwaves not fully making it to the surface of his brain. We sought out care from many doctors and specialists who provided more diagnosis of Mast Cell Activation Syndrome, potential Ehlers Danlos Syndrome (official diagnosis is not until after age 5), and Multiple chemical Sensitivity. We were lucky that we have been able to find prescriptions which Remy takes daily that have stabilized his "spells" and allowed him to gain foods.
We were excited that Remy was tolerating more food and happily growing although his sleep was still extremely disruptive and his reflux was still occurring. We started looking into the home environment more closely as we had already eliminated all chemicals in our house. This is when we found toxic black mold. Remy's genetic testing revealed that he is unable to rid his body of mold/mycotoxins. Upon this discovery, we decided it would be in Remy's best interest to leave the home and ALL of its contents (clothing, furniture, toys,) and this also included my newly built in home acupuncture office and practice.
- Type 1 diabetes
- fasting disorder - SCAD 1 deficiency
- heart condition - Wolff Parkinson White Syndrome
- heart condition - ACTN2 mutation
- muscle wasting - minimulticore disease
- dental issues - AFL orthodontics
- mold allergy - chronic inflammatory response syndrome
- food allergies - Food Protein Induced Enterocolitis Syndrome or FPIES
- chemical allergy -
- anesthesia allergy - malignant hyperthermia
- many other allergies - Mast Cell Activation Syndrome
- potential Ehlers Danlos Syndrome (official diagnosis is not until after age 5)
Due to the costs of feeding Remy, medications, medical procedures, we have become heavily in debt. Due to Remy's sensitivities we need a chemical and mold free home so that he can slowly detoxify and hopefully reduce his allergies. We are presently living with his grandparents.
Remy's monthly medical expenses = $250
- Air Filter- $80
- Primary Insurance - $170
Remy 's total monthly medical not covered by insurance = $1243.33
- Prescriptions - $145
- Supplements - $350
- Doctors - $423.33
- ALF Appliance - $285
Diabetic Supplies not Covered by Ins- $40
Remy 's total monthly food = $975
- total food expense- $800
- Animal food expense (chickens)- $175
Total Current Monthly Cost For Remy- $2,468.33 - exclusive of clothing and toys.
"We did physical therapy twice a week for 6 weeks and then we were told to return, but insurance refused to cover and it was $250 a week with our deductible. We chose food over PT."
How you can help Remy:
- Send checks to:
- Rescue Remy PO BOX 2444 Easton Maryland 21601
- Send cash transfers through: You Caring; Paypal; Money Gram
- For further information or inquiry, email or use form below:
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