Update - Long

Miller238

First off, THANK YOU all for your kind words and thoughts and prayers.  They really do mean so much!

The GI doctor thinks Katelyn has a rare disease called Eosinophilic Esophagitis.  They think the disease is caused by allergies.  Basically, there are white blood cells in the esophagus (called eosinophils) that shouldn't be there.  The white blood cells think the food is something it needs to attack and in turn, inflames the esophagus and causes damage to it.  In a normal person, these white blood cells are not in your esophagus.

She will need to be tested for it, and in order to test her, they have to perform a biopsy of the esophagus to see if there are white blood cells on it.  She will be put under.  If the biopsy confirms the diagnosis, then she will be put on straight prescription formula for 3 months.  This is to clear the esophagus of the white blood cells that are there.  No other food can be eaten.  If she isn't eating enough of the formula (it is so nasty), then she will need a G-tube for her to get her nutrients.

After 3 months, she will be biopsied again.  And then we will introduce one food for a while.  I am not sure how they pick what food goes first.  After that trial with that one food, they biopsy her again to see if that food caused the white blood cells to reappear.  Then, another food is introduced all by itself.  Then another biopsy.  Rinse and repeat.

 She will have about 7 surgeries (biopsys) in the next year.  Definitely not looking forward to any of those.  Also, the disease is hereditary.  We need to evaluate the chances of this happening again to see if it is worth having any more kids.  The next kid could be even worse than Katelyn.

Thanks again for the nice thoughts!  I am keeping my fingers crossed that she doesn't have the disease and is just crazy allergic, but he said that was unlikely.

KristenBtobe

I'm sorry she had to go through all this, Jenna. I wish the news was better. I guess at least you are starting to get some answers. How are you feeling?

Moesten

Oh my goodness!! I'm sorry you received such news (even though it must be a relief to have an idea of what is happening.) Poor little girl having to endure so much when she's so little. Good luck to you guys on this journey. I hope this all goes as smoothly and with as little pain and anxiety as possible. 

teacherjess

What an ordeal, but hopefully you will be getting some answers and, hopefully, some solutions. Please keep us updated on how Katelyn is doing!

KYmama9286

Oh Jenna, I'm sorry that you got such difficult news-- I'm sure on one hand it would be good to know for sure what is causing all of this but on the other hand no parent wants their child to have to go through so much *hugs* Who did you see at GI? Nicky has been seeing Dr.Pentiuk at the Nky location. I will be sending lots of T&P your way and please let me know if I can help in any way since I'm just around the corner-- I would love to bring by a meal for the day of her first biopsy so you all dont have to worry about cooking after her procedure-- seriously let me know how I can help!

Kle2922

Ugh, i know that wasn't the news you wanted to hear.  The positive is that maybe they WILL find out exactly what this is, and we will all help you get through the next year....then Katelyn will get to live a more normal life and your stress will be gone. 

buckeyethor

i hope the answers can help her live a more normal food life. i am sorry you have to deal with this.

jerseygirl81

Aw, poor baby I'm sorry that you've got a rough road ahead. I hope they're able to help her.

curlypie1

I'm so sorry you have to deal with this. Your daughter is so sweet and I'm sure it's hard to imagine her having to go through all of those biopsies. You've all been on my mind lately. I hope you can find some comfort in getting close to finding some answers to her problems.

Lyons_in_2007

One step at a time, Jenna.  We'll all be with you on the road towards answers and a completely healthy Katelyn.  ((HUGS))

kel716

Definitely one step at a time like lyons said- and answers are a good thing!  I know it wasn't what you wanted to hear, but at least you now know where you're going from here, and that will lead to solutions.  Katelyn is one tough girl, and we'll be thinking of her.  ::hugs::

Mommy2Max

I am so sorry Jenna.  Find peace in the fact that maybe they will have some answers for you very soon. 

The worst part about biopsies is handing your little one over to the nurse.  I promise you though that Katelyn will be alright. 

Gtubes are not awful.  We love Max's because it gives us peace of mind that he is getting all of his medications and his nutrition.  If you have ANY questions, please don't hesitate to ask.  I will pray that she doesn't need one, but remember that it won't be permanant and they are very easy to care for. 

We're praying for you guys.  Let us know if you need anything.

MelissaMc22

Jenna, You and Katelyn seem to pop into my mind so much lately. I always wonder how she is doing and how you are hanging in there as well. It's got to be so tough on all of you.

Remember knowledge is power, and like TTT said; one day at a time.

We are all here to support you, and I am only a 5 minute car ride away!

Big hugs to you.

 

asphire

I am soooo sorry Jenna. Who are you seeing at Children's...we see Dr. Knapp for Camden. He was scoped/biopsied on two seperate occasions already for EE. He did have the esinophils and was placed on the meds and they went down on the second biopsy. SO i can relate to what you are going thru as we went thru it also. It sucks big time!

I was actually going to email you the other day to see if she had been tested for EE yet because she does have all the symptoms.

I am sooo sorry you are going thru this but it will give you answers. If you ever want to talk let me know. I am here!!

Btw- I know many people who have 3-4 children and only 1 has EE. So hopefully that makes you feel better about future children.

 Big hugs!!! xoxoxoxo

sistrkate

Aw Jenna, that news had to be tough to hear.  I'm sure it will take some time to internalize and process, but at least you have some steps in place to help Katelyn through this.

Please keep us updated on her progress.  We all care so much about her and you (and your DH).  Lots of hugs and positive vibes coming your way.

cat81305

HUGS Jenna!  I am sooo sorry you are having to go through this and that Katelyn has to go through this!  Hang in there and keep your head up! I will say prayers for all of you!!

cops_wife

I'm sorry. That all just sounds so hard. I will be praying for you and sweet little Katelyn.

stillwaiting12

I'm so sorry you didn't get better news! Hopefully more answers will lead to better things for her, and you and DH!

hav2run

My thoughts are with you and Katelyn.  I know you did not want to hear the news they had for you today.  I hope the news that is forthcoming will be better than expected, but I imagine there must be some comfort in having some direction on how to go forward with her feedings.  I wish you all the best.  Take care of yourself.  We are all here for you if you need us.

JLPT830

So sorry that you guys are having to deal with this.  Hoping this all leads to answers for you.  I will surely keep you guys in my prayers!

Lucky_N_Love

I am so sorry about the possible diagnosis but I hope having answers will help K start feeling better. hang in there Jenna!!

MrsMandaK

Oh my goodness! I'm sure this is so much for you to take in, but please know that we are all supporting your with prayers and good thoughts. I hope my friend Lizzie can be a good source of knowledge though all of this. If there is anything I can do to help, please let me know!

megan1019

So sorry - hope she feels better soon! Hang in there!!

MrsMandaK

MrsMandaK:

Oh my goodness! I'm sure this is so much for you to take in, but please know that we are all supporting your with prayers and good thoughts. I hope my friend Lizzie can be a good source of knowledge though all of this. If there is anything I can do to help, please let me know!

P.S. DH's cousin works at Children's in the GI department and she works with the EE patients.  Let me know when you're going and I'll make sure she takes great care of you...not that you wouldn't be anyways, but still!

addslove

Oh Jenna...hang in there.  I know how overwhelming it can be to know that you've got a long road ahead of you but try to take it day by day.  Face each challenge head on, at that moment in time.  And take comfort in the fact that you've got so many people thinking and praying for you and sweet Katelyn!

Jessica&Brett

That definitely sounds overwhelming, but it sounds like you are closer to getting some answers. Everything will work out - I'll be thinking about you and your family.

MrsMoher

I can't imagine how difficult it was to hear that, but even though the road will be difficult maybe this is the answer you have all needed.  Bless her little heart.  ((HUGS))

klee411

Thank you for the update and I am SO sorry to hear of all the troubles you and your DD are going through. Continued positive thoughts and prayers coming your way during this rough time. You are one strong mommy - big hugs to you and your sweet girl.

becca070707Ken

Oh I am so sorry you are having to go through this. I hope you, your DH, and especially Katelyn find some answers and comfort soon. Big {{HUGS}} to you all!

andailey

Oh, goodness! I'm so sorry to hear that Katelyn will need to endure so many medical procedures in the next few months, but I'm glad for you all that you are finally getting some answers. Hopefully all this will lead to a happier life for both Katelyn and you! HUGS I will keep you in my thoughts and prayers!

seghibs

I am so sorry to hear that you are going to have to go through all these surgery's.  That has got to be so hard to imagine.  On the one hand, at least you have a pontential answer to this all.  Stay strong!!

Meg41208

I'm sorry you both have to go through all of this.  I agree with Tricia - take it one day at a time.  Katelyn is lucky to have you for her mom - you are such a wonderful advocate for her health.  

Hugs!  We'll all be here for support if you need us. 

doodlebug914

It seems so overwhelming to look at all that is coming up, but this is the first step in moving forward.  Take one day at a time, and know that we are always here to listen.  Thoughts and prayers for you all as you go through this journey.  ((((HUGS)))) to you Jenna!!

sprads

Oh my goodness. That just stinks! At least there is a guy that focuses a lot of attention on researching the disease right there at Children's. I met him. He started right before I left there. He was an arrogant jerk the first time I met him, but at least he is good at what he does. LOL

Hope you get some answers and I will keep Katelyn in my thoughts, the poor little thing. FWIW, I have had biposies of the esophagus and the only discomfort afterward was from having the tube in my throat....but that was because they were dilating my esophagus at the same time.