Ambassador of Books ~ Book Club Madam ~ Blogger Gal

Tuesday, May 12, 2009

Asking for Support

Hi all. This post is a bit more personal than you're used to on here (and a bit long) but I hope you won't mind. I'm having a hard time with something at the moment, and I'm hoping I can rely on all of you for prayers, support, and possibly even knowledge.

You all know about my wonderful Kiddo (who, by the way, thinks it is VERY cool that he is featured on my blog), about his love of ice hockey and Irish Step dance, about his struggles with reading and his all-around cuteness. And if you have been reading for a while you also know that Kiddo has severe food allergies and a condition called Eosinophilic Esophagitis (EE for short). What that means is that eosinophilis - cells that belong in the intestines - are present in his esophagus. The cause of this condition is unknown but doctors suspect it is triggered by food in some way, sort of like an internal allergy. If left untreated, the eosinophils increase exponentially and over time cause furrowing and hardening of the esophagus, making it difficult or impossible to swallow. Only about 20,000 people in the US have this condition, and very little is known about it.

Kiddo has been treated for EE for the past 3 years or so. Treatment is really the wrong word though, because they are still figuring out what is the trigger in his case. Every 3-4 months he undergoes an endoscopy (under anesthesia they put a camera down his throat and do biopsies of his stomach and esophagus) to determine if the eosinophils are increasing or decreasing based on the changes made to his diet in the previous months. He also regularly has allergy testing (blood tests and scratch tests) to try to clarify what the triggers are. So far the results have been mixed.

We know beyond a doubt that he is allergic to milk - if it even touches his skin, he starts breaking out in hives, and if he ingests it he vomits uncontrollably. Beyond that, the following nine items have been removed from his diet as possible EE triggers: eggs, wheat, soy, fish, shellfish, peanut, tree nuts, beef, and pork.

Yesterday Kiddo had another scratch test. He tested positive for an allergy to barley. That is one of his favorite foods so he is very disappointed to have to give it up. They also removed oats from his diet. In addition, we got the results of his latest endoscopy. His endoscopy results from March were good. The April test ... not so good. We made absolutely no changes to his diet between the two tests but the eosinophils doubled in that time. Plus Kiddo has been on Prevacid for about 2 years, and on an extra high dose for the last month (Prevacid is supposed to get rid of many eosinophils). The doctor is baffled - she has no idea what is causing this.

In order to get a better idea of the trigger foods, Kiddo is currently undergoing a patch test. In this test, small samples of each food item are put onto a metal disk which is then taped to his back. They have to stay on for 48 hours. His little back is covered with 19 samples at the moment, as you can see in the picture. It is uncomfortable but Kiddo is being a real trooper. No tears, no whining, just sporadic comments about the tape pulling his skin or certain spots being itchy.

Based on the results of this test, more foods will likely be removed from his diet. They will do another endoscopy in 2 months. If the results are not good, the next step is to put Kiddo on an elemental diet ... basically that means that he'd only be able to drink a protein liquid for his meals for several months. No food, period. You can imagine how painful that is for me to even think about - Kiddo is only 7 years old, and he will be miserable if he isn't allowed to eat. And if he doesn't drink it (please God, let him drink it!) they will have to put in a feeding tube to get it into his system.

The doctor wants to rule out possible environmental triggers so she put Kiddo on a daily nasal spray in addition to the Prevacid. At this point, all we can do is wait and pray. The patches come off Wed. morning and we get the results Thurs. morning.

Of course, all these appointments mean that Kiddo is missing school - all day on Mon. and Tues., half days on Wed. and Thurs. And you know that he is struggling with his reading so missing these days could have a huge impact on his learning.

If you made it to the end of this incredibly long post, I'm very grateful. Thank you for your concern and your support. If any of you are familiar with EE or have heard of anything that might help us, please let me know. And please keep Kiddo (and Hubby and I too!) in your prayers. Thank you.

(And just so you know, those two pictures were taken within minutes of each other. Even with all the junk on his back Kiddo is still smiling!)

38 comments:

Melissa said...

I will keep you all in my thoughts and prayers. And Kiddo is adorable, by the way :-) What a trooper!

bermudaonion said...

I'm amazed at the spunk of children. Your son is remarkable. I will keep him and your family in my prayers.

Jill said...

de-lurking to send prayers and support! Hopefully they find a miracle cure for him!

Julie P. said...

Heather, my heart goes out to you and your son. I am crying as I read this because, as a mother, I know how much pain you are feeling. I know nothing about EE, but I do know a little about food allergies; and what you are dealing with goes way beyond my little bit of expertise.

I really don't know what you tell you except to treasure your little guy! He is such a joyful (and adorable) child, and I have faith that he can handle this. Look what's he been through already and he's still smiling.

You are doing an amazing job as a parent and you will just have to keep faith that things will work out. I will be praying for you and your son.

Meghan said...

I'm so sorry to hear this. Your family will be in my thoughts. I hope they find out the allergy triggers causing your little boy's problems soon so you can manage them better and he can start to recover. *hugs*

rhapsodyinbooks said...

How incredibly strong you must be to be dealing with all this! Your son sounds pretty amazing too. I have some books on diet and nutritional problems in a giveaway; maybe they might help? The link is here: http://rhapsodyinbooks.wordpress.com/2009/05/10/sunday-salon-supplement/

Please keep us updated on what is happening!

Violet said...

This is so very sad, I can't even imagine the pain you and your son must be going through. Your son is very strong. I'll keep your family in my prayers and thoughts.

MoxieMamaKC said...

What an adorable boy and what a great attitude he seems to have despite not feeling well! I'll keep you in my thoughts and prayers as you are going through this. Please do keep us updated! Hopefully they'll find the triggers soon and be able to help him! Hugs to you!

Robin of My Two Blessings said...

He is such a cutie! We'll keep him and your family in our prayers.

longbrakeliving said...

Poor Kiddo! I had several scratch tests when I was little, and I know they are no fun!

I have an older friend who is also struggling with this and the doctors have not yet found a way to help her, which has been soo frustrating.

I'll be praying for you, Kiddo and his doctors.

TK42ONE said...

Wow. I wish I had words of wisdom for you that would make things better, but my knowledge of food allergies is limited to those in our household (milk, nuts, poultry, and gourds). It looks like you're reading the food labels for waaay more than we are.

So instead of some words of wisdom, I'll be thinking about you and Kiddo instead. Hang in there!

Nymeth said...

I'm really sorry you and kiddo have to deal with this, Heather :( You'll be in my thoughts. Hopefully the results of the next test will be better and he won't have to give up food altogether. He has a lovely smile, btw!

Ti said...

Heather, I have been battling with an esophageal condition for the past 10 weeks. No one can figure out the problem. I had an endoscopy and they diagnosed reflux but I have Lupus so everything is complicated. None of the PPI drugs are working and depending on what I eat, sometimes the lump in my throat is quite large and other times not so much.

They never biopsied me though and they have not ordered allergy testing even though I told the doctors that it's obviously food related. After reading what you wrote I am now wondering if I have the same thing or something similar. I looked at all the symptoms and I have all of them.

I've lost 22 lbs in 8 weeks because of how limiting my diet is. I am going to ask my doc and my rhuematologist about it.

I know it must be very difficult for your son to be so young and to have to go through this. I do hope they find his triggers and that they can be easily removed without too much stress to his system.

Thank you for posting this.

ella144 said...

You, Hubby, and Kiddo are in my thoughts and prayers.

avisannschild said...

Oh Heather, I'm so sorry to hear about this. I hope they figure out what's going on soon and Kiddo doesn't have to give up food altogether. My thoughts are with you and your family.

Jenny Girl said...

Sweetie! I'm so sorry to read this. The poor baby. That completely stinks, and I know how hard it must be for you to keep your spirits up for your son.
I work at a major academic medical center, so I'll ask around to see if there is any research or activities going on right now for this.
My thoughts and prayers are with you and your son. Stay positive.

Staci said...

Heather,
I've never heard of this disorder and I'm so sorry that your son has this!! Your entire family is in our thoughts and prayers!!

Florinda said...

We've been through some similar things with my stepson, who has had GERD (gastro-esophogeal reflux disease) since he was a baby (he's 9 now). The good news is that either he's outgrowing some of the problems, or he's finally on the right combination of medications - that's taken awhile, though.

Kiddo sounds like a real trouper. I feel for you all.

Ruth said...

Oh my goodness, I have never even heard of EE!! I almost started crying when I read this post and saw your adorable son's smiling face. I cannot imagine what you all are going through. I am humbled to think of his strength and positive attitude in the face of all this, when my own outlook in the face of my little problems can be so poor in comparison. Thank you for sharing his story & your family's journey - I will remember you all in my prayers!

ANovelMenagerie said...

I don't know what to say... except I'm sorry that your baby isn't well. I can't even imagine what it must be like for you. My kids eat like horses and are allergic to NOTHING. But, my best friend Lori (the one with the daughter in the hospital), her son has food allergies to nearly EVERYTHING IMAGINABLE! They have worked and worked at his food allergies and over time they've been able to introduce some foods back into his diet. He's 11 now and I think that it was only in the last 2 years that they have been able to do so. But, for the longest time they make one separate set of meals for him than the rest of the family. Restaurant ordering is very particular. But, it's better now than it was when he was much younger. Now, it's not the same condition, I know, but I wanted to encourage you that things will improve. It may take considerable time, but it will get better. Plus, your son is so positive and that will really help.

I'll keep your son in my prayers!

You're doing a great job, Mom. Keep it up!

Sheri

Photogrl said...

Keeping you ALL in my thoughts and prayers...

((HUGS))

Erika Robuck said...

I'm so sorry to hear about Kiddo! Our middle son is allergic to many, many foods. I will keep you in our prayers.

Ruth @ Bookish Ruth said...

Heather, what an amazing little boy you have. I grew up in a family of medical professionals so I've heard of EE but have never known anyone with it. I'm trying to imagine myself at 7 having all the tests that your little guy has gone through -- I highly suspect that I would have been absolutely miserable and very scared. Your son is an inspiration, and I will be praying my heart out for him and you and your husband.

If there's anything else that I can do, please let me know!

mominsanity said...

I too am delurking - I'm so sorry that your son has to go through that. :(

BTW, he's really cute.

Lisa said...

Oh that sounds so hard. What a trooper he is to smile through it all. I'm curious, what is the barley food that he loves?

Amanda@Lady Scientist said...

Oh, Heather. I feel for your little boy. I can't imagine going through all those tests and being his age. I'll keep you and your family in my prayers.

Plays with Needles said...

I had no idea. Thanks so much for sharing your story. Are you at the Asthma and Allergy center at Hopkins Bayview? Good luck, dear friend, I'm sending positive thoughts your way...

Trish said...

What a great smile Kiddo has--how wonderful that despite everything he's able to laugh and keep in good spirits. You and your family will be in my thoughts. My husband has Oral Allergy Syndrome and is allergic to all fresh fruits and vegetables. While it is a pain to have to ask for special menus at restaurants and cook special meals at home and painful to know my husband can't have the fresh fruit that I love so much, we are blessed at we at least know what he cannot have. I hope that your tests come out conclusive and you are able to determine what it is Kiddo can and can't have--and that hopefully there will be a cure for EE. Big hugs!!!

Amy said...

I am definitely praying for you and kiddo and I'm so so so sorry!

Chris said...

I'll keep you in my thoughts Heather! I know this must be really rough and sad for the both of you :( I hope things go as well as they can!

Chris said...

I'll keep you in my thoughts Heather! I know this must be really rough and sad for the both of you :( I hope things go as well as they can!

Anna said...

Your family is in my thoughts and prayers. Remember, we don't live but a few minutes away from one another, so if you every need anything, just let me know.

--Anna
Diary of an Eccentric

kelly said...

Phil and I will keep you guys in our thoughts. Give kiddo a hug for me!

xoxo
Kelly

Kim (Sophisticated Dorkiness) said...

Kiddo is quite the tough kid, wow. Good luck, and know that you've got a ton of people rooting for both of you.

Anonymous said...

Your Kiddo is adorable and fortunately for us "moms" our kids are always stronger than we. Please consider using phonics to help Kiddo with his reading at home while he is missing school. You can buy the Hooked on Phonics series or just sound out letters and words at home. It is the best way to learn to read! I will be thinking of all of three of you and wishing you well. Many Blessings. Andrea

Michelle said...

That must be so tough for your whole family :( Kiddo sounds amazing, such a strong little boy.

Dawn - She is Too Fond of Books said...

Heather - Kiddo is an incredibly strong boy with a great attitude. He's fortunate to have such support (and great advocates!) in his parents and family.

You'll be in our thoughts ... I've read your post in reverse order, so I've got the updates, and hope he's able to take in those protein shakes as a first step!

Betty and Boo's Mommy said...

Very sorry to hear of all that you and Kiddo are going through with this. We have a little experience with food allergies, but nothing as extensive as this. Your Kiddo has a tremendously wonderful attitude. Hang in there ... I can only slightly imagine how difficult this is. Keep us posted.

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