Help Baby Pip Fight FPIES and Other Medical Issues

For: Baby Pip and Family
Organizer: Krista Denton
$2,595
of $2,500 goal.
Raised by 22 donors
100% Complete
This fundraiser is closed. Thank you for your support!

The Story

My 7 month old nephew, Pip, was just diagnosed with FPIES.  FPIES is a very rare, delayed onset, allergic reaction to even low allergen foods.  Babies with FPIES react by having severe vomiting, lethargy, low blood pressure, diarrhea, and possible shock.  It is a severe, life-threatening illness.  Pip is requiring treatment by a specialist and they are working on figuring out how to nourish this baby.  So far Pip reacts to yams, baby cereal, bananas, pears, milk, and soy.  The doctor suspects that he is also reacting some to his Mama's breastmilk.  Pip will require very costly elemental formula to eat at this point in time.  Insurance should eventually cover this cost, but it could take some time.  In the meantime, Amber, Pip's Mom, is overwhelmed with medical appointments, a recent move, recovering from a car wreck (that occured the day before Pip was diagnosed with FPIES), and taking care of her 3 other young children.  I am requesting help to get this family back on their feet.  Help with starting Pip on the elemental formula until insurance covers, help to cover babysitting while Amber takes Pip to specialty appointments, help to cover some household help while Amber cares for her sick baby.  Any donation is helpful.  Thank you so much for your generosity!  Please check out the photo gallery to find a video that will teach you more about FPIES and the impact it has on the children and their famlies.

Since I origionally posted this fundraiser, Pip has developed other medical complexities.  He will be evaluated for potential craniosynostosis (early fusion of plates in the skull) in Salt Lake City, UT on Wed, January 28.  Even after having his FPIES completely under control with medical formula andn a feeding tube, he struggles constantly with nausea and vomitting.  It is time to get to the bottom of what is causing the problem.

Amber keeps a blog where she posts pictures and updates as well: mirroringgrace.blogspot.com/2015/01/mildly-complex.html?spref=fb

Fundraiser Updates

Posted on January 28, 2015

Posted on January 28, 2015

Pip saw the Craniofacial specialist in Salt Lake City this morning.  It was determined that his head is so oddly shaped because of malnourishment.  Due to his nutritional status, his brain is not putting the necessary pressure against the inside of his skull to push the plates apart and round his head out.  The good news is NO SURGERY!!!  The bad news is that they still need some major help finding out how to get Pip's FPIES under control.  It should be under control by now.  I know there was talk of him seeing an immunologist, but he needed to have intracranial pressure ruled out before proceeding with am immunology referral.  I'm sure Amber and Ryan will be pursuing the next step as soon as they take some time breathe and relish the fact that their sweet boy will not need an extensive cranial surgery.  

Posted on January 27, 2015

Posted on January 27, 2015

A lot has happened in Pip's life since last Fall.  He now has a feeding tube and no longer has intestinal bleeding with the medical formula he is on.  For all intents and purposes, his FPIES should be under very good control.  However, Pip struggles constantly with nausea and vomiting, strggling to maintain/gain weight.  This means more specialists for Pip.  When he was originally evaluated by his physical therapist several months ago, she was concerned that his soft spots were closing much too rapidly.  Amber addressed this concern with the pediatrician, who failed to do anything about the concern.  Pip's G.I. doctor eventually raised concern about Pip's head because it appears as if he has craniosynostosis that affects multiple cranial sutures.  This could be causing increased intracranial pressure, which would be causing the nausea, vomiting, and some of the gross motor delays that Pip is dealing with.  He will be going to Salt Lake City to meet with a craniofacial surgeon on Wed, January 28th.  If his head is not the problem, something else is.  This would mean a trip to see an immunologist to look into potential other medicla conditions that are causing Pip not to thrive.  Unfortunately, this road is much longer than anyone ever could have imagined.  At this point Amber seldom gets adequate sleep.  Pip is up crying many nights because he is uncomfortable.  Amber can't rest during the day because she has 3 other young children to care for and it is not uncommon for Pip to have 20+ medical appointments each month.  Her physical health is starting to suffer from the strain of caring for her baby.  She could truly use some regular night respite care so that she can get a couple of nights of sleep each week.  Unfortunately, this need is one of many uncovered costs involved in taking care of my precious nephew.  Please consider helping the Meyers family once again as they continue to travel the road ahead.  

Posted on August 15, 2014

Posted on August 15, 2014

Today Pip was transitioned onto Neocate, the last of the truly elemental formulas.  We are praying that this formula will work for him and that he will not have more FPIES reactions.  

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