Monday, December 16, 2013

Johns Hopkins & Cohen (a match made in heaven)

I think I can just about reach one!
Here fishy, fishy...
We are so grateful for all the prayers that have been going up on our behalf.  It is so humbling to walk through this journey with Cohen, where we are in a constant state of learning.  After having four children I had apparently convinced myself that I had seen and experienced almost everything....and then I met Cohen!

We were truly blessed to have been directed to Dr. Robert Wood by a veteran FPIES mother and the founder of the IAFFPE organization.  And lets not forget my very pushy and well intended sister that helped me realize that it was time to change physicians.  Dr. Wood is considered to be one of the top three experts for FPIES and has been not only writing journals about the subject but has been involved in research as well.  He has treated over 500 patients with this is safe to say HE IS AN EXPERT!!

Cohen, making new friends!
Oh what a difference it makes when you are sitting in the presences of someone that knows your child's illness inside and out.   Todd and I left the appointment with full confidence that our little man was finally in the right hands.

For those of you that don't know Cohen was diagnosed earlier this year with a condition called:
~ Food Protein Induced Entercolitis Syndrome..... or FPIES [pronounced F-pies]
Food Protein Induced Enterocolitis Syndrome (FPIES) is an allergic reaction in the gastrointestinal system. The most common triggers are milk and soy, but any food (even those thought to be hypoallergenic e.g. rice, oat) can cause an FPIES reaction. FPIES typically starts within the first year of life.
Unlike most food allergies, the FPIES reactions are delayed and usually begin about 2 hours after ingestion of the causative food. FPIES reactions are characterized by profuse vomiting and diarrhea. In about 20% of cases the child will have such an extreme reaction to a food that they will go into shock and need to be taken quickly to the Emergency Room for immediate treatment. ~IAFFPE

Where we are now:
Cohen has either vomited and gone into shock or had blood in his stools from every food that we have given him up to this point.  He currently receives all of his nutrition from a special Amino Acid based formula via a NG tube (aside from nursing at bedtime).  We are working to help him take in more formula orally but it has been a challenge.  Trialing foods has also been extremely difficult because Cohen has developed a food aversion.

What we learned at Johns Hopkins:
Dr. Wood impressed us immensely with how thoroughly he had investigated Cohen's case before he ever walked into the room.  He was able to fill in the gaps for us and explain how all of this fits together, shedding some light on the struggles we have faced in the past few months.  

Dr. Wood began to inform us, in a very, "let's cut to the chase" manner, that Cohen has a very complicated case of FPIES, and proceeded to give us a list of expectations. 

 The Hard to Hear

~We are dealing with an atypical or more severe case of FPIES
~We can expect to be on this special formula for a very long time... years
~Cohen's body doesn't handle food well
~It is very likely that he has some additional GI issues
~Given Cohen's history, we must expect to fail far more food trials than we will pass 
~Not to be surprised if we don't have any or only a couple of safe foods by the time he turns two
~Be patient and prepared for a very long difficult road
~There are no tests that can guide us, just our instincts and Cohen's history
~Stop all food trials for the next four weeks and push formula
~Cohen's food aversion will probably get worse before it gets better "because frankly food as always hurt him"
~Consider placing a g-tube into his stomach to feed him his formula
~In 6 weeks we will begin trailing some lower risk foods at home and then later on we will trial big triggers in the hospital

The Hope
~That he and his staff will be there for us every step of the way
~That most kids outgrow this condition around the age of five (probably the only time I smiled during the appointment)

Although nothing Dr. Wood said was a shock to either of us, it was still difficult to hear the words come from him.  I guess there was the hope that things weren't as bad as they seemed.  However, with all that what was said we still brought home a smiling little boy to love-on and enjoy.  

I am learning that moving forward will quite often resemble backwards steps.  Excepting the obstacles ahead allows me to prepare myself for our battle and to no longer feel side blinded by set backs.  Things won't be easy but we are very fortunate to have hope that one day Cohen will no longer have to deal with his allergies.  We are confident that we will eventually find our groove and begin to live a new kind of "normal".... I mean really, who defines "normal" anyway??

What I am sure of:
Cohen is not FPIES, it is merely part of what makes him unique and wonderfully made.   FPIES may slow us down a bit but it will never keep us from making the most of this beautiful life that God has given us.  This journey has so much to teach us and I pray that someday we will be able to use our experience to help others.  

Today, in the midst of learning how to navigate through this new way of life we will focus on finding the good in our circumstance... and give thanks for having been given this wonderful little guy that just happens to need a little extra care!

Psalm 25:1-3a  
In you, Lord my God, I put my trust.  I trust in you; do not let me be put to shame, nor let my enemies triumph over me.  No one who hopes in you will ever be put to shame.

How are journey began...

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