For some children with multiple food allergies such as Food Protein Induced Enterocolitis Syndrome (FPIES), a feeding tube is a necessary means for getting the optimal nutrition necessary for growth.
The Feeding Tube Awareness Foundation is "
dedicated to providing parents and caregivers with the
information needed for day-to-day life with a tube fed child." And their goal is "
to make what is medically
complicated, easier to understand".
In honor of Feeding Tube Awareness Week 2013, The FPIES Foundation would like to share:
- An article about feeding tubes in an FPIES family featured in Complex Child E-Magazine: Overcoming the Small Percentiles: Our Super Tubie. Complex Child is a "monthly online magazine written by parents of children with special healthcare needs and disabilities. It is intended to provide medical information, along with personal experiences, in simple language that other parents can understand. Articles are on a wide variety of topics ranging from basic information on medical conditions and treatments to advice on how to beat insurance company denials."
- About additional resources, from our Resources page, such as:
The Oley Foundation - "
The Oley Foundation is a national, independent, non-profit 501(c)(3)
organization that enriches the lives of patients dependent on home intravenous
(parenteral )
and tube feeding (enteral )
through education, outreach, and networking. The Foundation also serves as a
resource for consumer's families, clinicians and industry representatives, and
other interested parties. Programs are directed by the staff and guidance is provided
by a board of dedicated
professionals and patients."
ThriveRx -
"ThriveRx’s mission is to optimize the nutritional well
being of our consumers through our customized approach. Our home parenteral and
enteral nutrition program is driven by our customers’ needs while maintaining
the highest standards in service and clinical management. Quality care that
fosters independence and empowers consumers and their families is the
fundamental basis from which our business decisions will be made".
Mini Buddy - Mini Buddy provides "[
stuffed] animals with feeding tubes to children and adults
who have a feeding tube or who will be getting one of their own soon. They are also focused on bringing tube feeding children and their families together".
Tubie Friends- "
Tubie Friends a non-profit group that is administered by two mothers whose children have feeding tubes and want to use their experience to make life easier for the thousands of children relying on feeding tubes for their nutrition."
On January
5, 2011, our world changed forever. Our youngest of 4, Ryker (6 months old),
began vomiting at the babysitters house. Just thinking it was the stomach flu,
I called my mom and asked her to go get him. The babysitter called me 10
minutes later and said I needed to get there ASAP, something was wrong with
him. I grabbed my stuff and rushed out the door. Within 5 minutes I was running
into her house and witnessing a scene I would never forget. My little baby boy
had lost all color and was motionless, with the exception of dry heaving. He
looked as though he was having a seizure and was not responding to my touch or
voice. I quickly called 911 and he was rushed to the ED. The doctor there
explained that she did not know what was wrong and he was in shock. They were
going to helicopter him to the nearest Children’s Hospital. My heart sunk. We
were devastated.
At the
hospital, we spent 4 days with no answers. He quickly came back to us and was
his usual feisty self. They sent us home with the only instructions of “if he
vomits again, go to the nearest ED immediately”. How scary is that!
When I was
finally ready to go back to work the next week, I asked the babysitter to not
give him the rice cereal, just to stick with breast milk for the time being. I
remember her asking if I thought it was the rice cereal that made him sick. I
told her I wasn’t sure but something was telling me it was the cereal. She had
taken care of a child in the past with FPIES to rice and put me into contact
with that mom. I knew immediately that is what he had and we were diagnosed 10
days later.
When we were
at the allergist, Ryker tested positive for over 30 foods by skin, patch and
serum. We were told to stick to breast milk only for the time being. From
January to April, he was doing great but was slowly dropping down on the weight
charts. Every food we tried became a big disappointment. Either he would have a
reaction or he would refuse to eat it. We finally had him scoped in August and
found out that he had Eosinophilic Colitis along with his FPIES.
In October,
with no safe foods, we traveled to Chicago to see a specialist at Lurie’s
Children’s Hospital. I remember crying all the way home after Dr. Wershil said
that Ryker needed a feeding tube to survive. He had dropped off of the charts
at this point with no safe foods. He had even had an FPIES reaction to Elecare-
a hypoallergenic formula!! We reluctantly agreed and on October 25, 2012, Ryker
had his NG tube placed. Within 3 weeks he had gained 2 pounds! We decided to go
with the g-tube and had that placed on November 29, 2012.
The g-tube
is amazing! It has saved my son’s life. He has gained 4 pounds in the 6 weeks
that we started this path. He has added chicken and potato into his diet with
no issues and he looks great! My only regret is that we hadn’t done this
sooner. My once tiny baby boy now has dimples!! And chubby thighs!! And a
double chin!! This makes this momma so happy!!
Life hasn’t
been always a walk in the park with the g-tube but the stress of worrying about
how much he is eating has been lifted and now we can enjoy our baby boy. The
g-tube has been such a blessing for us and it saved our son’s life!
Written by Ryker's mom, Darcy S, to honor Feeding Tube Awareness Week 2013
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