EOS and Lilly

by Hope Sewell on May 18, 2011

in allergies, eos, family, kids

Well to continue with the theme of National EOS Awareness week, here’s Lilly’s story. 😉  It’s amazing the difference between her story and Tobin’s.  Once again, you can read more about what the actual disease is HERE.

It’s just funny to me how 3 children can come from the same 2 parents and be so radically different. 😉
After a healthy pregnancy she was born at the Southeast Alabama Medical Center on December 10, 2008 a touch after 6 pm if my memory is correct.  She was the largest of my three….which was easily told by the 50 pounds I gained…yep….50!!  Thankfully most of it was fluid but shew!  that was tough.  She weighed in at 8 lbs and 2 oz.
 There’s big sister again.  By the way…she’s really never been interested in baby dolls and I think this is why!  😉  She’s always had real ones to play with.
While I was pregnant with Lilly I asked our GI about the chances of her having Eosinophilic Esophagitis as well.  She really couldn’t give me a clear answer.  The disease is mostly prevalent in boys.  
Things rocked along like normal.  She didn’t spit up nearly like Tobin did.  But I did notice that she seemed to have environmental allergies worse than he did at that age.
I was very “gun shy” with her so I waited as long as I could to start her on solid foods.  She started with Earth’s Best organic rice cereal.  Tobin is allergic to oats (I think I may have left that out of his list previously….there are so many that I lose count sometimes) so decided not to try an oat based cereal.  And so far, so good.
 I enjoy smocking when I get a chance (don’t get to much) and I loved how her little dedication dress turned out! This is May 2009
At this point I kept her on Tobin’s diet whenever she tried new foods.  I just wasn’t ready to try anything.  But even though I kept her on a safe diet, her weight began to plateau at 7 months and then she lost for the next 6 months.
In October of 2009 at an appointment with Dr. Ashley I sat crying in the examination room while I was waiting for him to come in.  She had just been weighed and I knew we were heading down the EOS road again.  He walked in and very calmly said, “Now you know she just would not be a Sewell if she didn’t have some sort of issue like this.”  That brought a smile to my face because he was right.  For some reason my children were chosen to walk this road and as the saying goes, “It is what it is.” 
But I was also very upset because that would be our last appointment with Dr. Ashley (or so I thought).  We moved at the end of that month to Denham Springs, Louisiana (right outside of Baton Rouge).  I would have to go through all of this while starting over with physicians.  Tough doesn’t even begin to describe it.  Frustration and discouragement set in.  I tried to get the pediatrician that I found there to understand that I wasn’t some “freak out” mom but that I was serious in my thinking that she had EOS.  And in the middle of me trying to get this across to him Lilly began having recurrent ear infections.  We LITERALLY were in that doctor’s office every two weeks.  We tried EVERYTHING to get her ears cleared up.  
Her first birthday came and went.
 We had a small party with just the five of us.
 Transformers was the only theme that I could find at the local dollar store 😉

 She didn’t like her cake….and yes I went ahead and made it allergy free.  What’s funny is that she LOVES cake and cupcakes now!! 😉
 In February we finally had tubes put in her ears (at my urging….after hearing, “let’s try this one more time” more than I’d like to count.) Finding a GREAT doctor is like finding a GOLD needle in a haystack!!  With the tubes put in her ear infections stopped.  However, the cold/mucus issue that was causing the infection just would not go away.  So we begin treating this problem.  All the while her EOS issues (she was still not gaining weight) are on the back burner.  We ended up at an ENT.  It turned out that she had Strep in her nose.  This does not go away easily.  We tried antibiotic after antibiotic.  Finally the ENT said, “ok…we’ve got two more tries and if those don’t work she’ll have to go into the hospital for IV drugs.”  The first of those last two choices was clindamycin.  She started it on a Wednesday afternoon and Friday morning she looked like this….

This horrible rash plus vomiting.  She was having an allergic reaction.  I took her to the pediatrician only for him to tell me, “there’s no way I can pinpoint that the antibiotic caused this.”  What a GOOF BALL!!!  Lilly hadn’t had ANYTHING new or out of the ordinary OTHER than that drug!  I later told our current allergist about this and showed her these pictures. She was extremely confident that it was the drug.  So the only prescription option we had left was an antibiotic normally administered through IV, that was compounded into a nose spray. The doctor told us that if it didn’t work we would be checking into the hospital. This new nose spray worked…Thankfully!!!
In March I decided to try her on a regular cookie and just see what happened. The result….swelling and vomiting.  We got in with a local allergist for testing.  I don’t have any nice things to say about most of the doctors there so I’m just going to keep my mouth shut.  I will say this though….I asked about skin prick testing and patch testing for her.  With all three tests put together you get a clearer picture of what is going on.  His answer, “why would I do that??  If she has a reaction to something you feed her just don’t feed her that again.”  Are you kidding me???  Ok..that’s all I’m going to say…..still makes me fume to just think about all we went through with doctors there and because of our season of life I had to deal with the doctors alone!!  After all of that she got pretty flared up and started having more EOS symptoms and her tummy was just HUGE!

Sorry for the nakedness here but you can see she looks like she’s malnourished with her swollen belly…

  Our ENT there did have a brain and he helped me find a GI.  The GI was a jerk as well!!!  Anyway…keepin’ my mouth shut!!!  I went in and told him all about her symptoms and big brother’s history and that I thought she had EOS.  He seemed skeptical but he did schedule a scope at my request.

During this time we were going through a lot of upheaval in our lives.  Her endoscopic surgery was scheduled for the same day that we were moving back home June, 10, 2010.  You can read more about that journey and decision HERE.  A friend of mine, Stephanie Turner, offered to drive from Dothan just so I could have someone at the hospital with me.  I took her up on the offer.  Unfortunately, I don’t have any pictures….a camera was the last thing on my mind.  She drove out on Wednesday afternoon.  She and I got up at 3:30 on Thursday so we could be at the hospital at 5 am.  Keith stayed home with R and T and finished packing up.  I told Stephanie about my thoughts on this doctor and asked her to tell me what she thought of him…..she agreed.  He came in that morning and told me not to expect any visual results that we’d most likely have to rely on biopsy results to get a diagnosis.  He may look at children with EOS everyday…but I LIVE with MY EOS children ALL THE TIME!!!!  After her surgery he took me to a consultation room and apologized.  Her esophagus was full of mucus and very inflamed and it was obvious she had Eosinophilic Esophagitis.  I appreciated his apology greatly and I think had we stayed in Louisiana we could have worked well together.  Her biopsy results confirmed the diagnosis.  She went from October 2009 to June 2010 without a diagnosis (and then another year without real treatment). After she came out of recovery she, Stephanie and I drove home, packed up Stephanie’s car and my van to the brim and we hit the road headed back to Dothan.  One of the most difficult and physically taxing days of my life!!

Once we came back home with no job, insurance was an issue.  Both Tobin and Lilly have been denied coverage over 3 times.  They are just too much of a liability.  If we fell under a group policy then they would automatically be sucked in with that group.  After exhausting our options, I’ll be honest and say that they are both on Medicaid for the time being and that has been one of the greatest blessings!!!  We spend a large amount of money each month in prescriptions and every time they have a scope, it would cost us around $600 so medicaid has been a huge help and pretty easy for us to work with.  Future government healthcare does make me nervous though…

Once we got back home and insurance settled we got in with our allergist in Huntsville, Dr. Mary Dell Railey.  Lilly was skin tested and patch tested and her results were egg, peanuts, tree nuts, barley, wheat and fish.

She was also tested for Cystic Fibrosis just to rule that out.  Her test came back normal.

We are still working with her to finish getting her under control. 

 Right now she is on the Budesonide slurry, Singulair,  Periactin and will have her next scope in July.

Now, she’s 24 lbs and has been for several months. Her symptoms are seemingly under control but it’s important that her esophagus can heal.  She deals with eczema just like her brother….she’s pretty much a carbon copy of him in many ways.  She’s very prone to skin infections as well.

Recently I found a small knot about an inch behind her left ear.  I found it while washing her hair and it was small enough that I checked behind her right ear just to make sure she that what I was feeling was not part of her normal self.  There was nothing on the right side to match it so I decided to watch it for a few weeks.  Well, I pretty much forgot about it until my hand ran across it again just last week.  It had doubled in size and was now visible from the outside.  This made me really nervous!!  I called and made an appointment with Dr. Ashley…..I wanted to see him and only him.  It turned out to be a swollen lymph node due to an infected area in the crease of her ear….I hadn’t even seen that.  But he did check her white blood count just to put our minds at ease.  I’m so thankful for our “trio” of doctors!!

Where Tobin is very compliant and reserved Lilly is right the opposite.  She thinks she rules the roost and she’s just so cute and funny that sometimes she does rule a little bit.  :)She notices every bite of food that goes into your mouth and she wants some too!!  Remember when I found her in the pantry?

Thankfully we haven’t had any more of those incidents. 
Not sure what the future holds for her and her health but I am thankful that God has equipped me in a way that only He can to care for her and Tobin.

“Consider the lilies of the field, how they grow; they toil not, neither do they spin; and yet I say unto you that even Solomon in all his glory was not arrayed like one of these.  If god so clothes the grass of the field, which is here today and tomorrow is cast into the oven, shall He not much more care for you, O you of little faith?”  The Lily is the flower of light, goodness, joy and faith.  I’m so thankful that He can be trusted!  He’s always been faithful!

Sign up for updates and keep those creative juices flowing. Enter your email below.

Delivered by FeedBurner

{ 7 comments… read them below or add one }

kkd May 18, 2011 at 5:53 pm

Hope, you are an amazing mommy! Those precious angels are beyond blessed to have such a strong willed mom that handles their every need, down to the ingredients. :)

Reply

Hope Sewell May 18, 2011 at 8:37 pm

😉 Back at'cha friend!!

Reply

Linzies Photography May 18, 2011 at 9:38 pm

you are an amazing mother!!! i can not imagine going through all of this! thank you for sharing these stories with us. You have some amazing children too!!!

Reply

Jessica May 19, 2011 at 8:08 pm

the allergy tests on their backs make me hurt so badly. What brave little kiddos you guys have!

Reply

Hope Sewell May 19, 2011 at 8:56 pm

well…there was lots of screaming and holding them down. And then while we waited there was lots of blowing because their backs itched so badly and they couldn't scratch. Not fun!! And we'll do it all again in a couple of months.

Reply

Tara Stone November 4, 2012 at 10:31 am

Hope, I stumbled upon your blog after searching for Dr. Mary Dell Railey. I am shocked at how much your children’s symptoms sound like my middle child, who has severe food allergies but lately I feel like there is much more going on with her. Do you have any idea where Dr. Railey is? She is one of those rare doctors that we love and I am desperate to find her. I feel so blessed to have found your site! Thank you for any help you can give me on Dr. Railey or any other allergy doctors that you feel good about.
Tara

Reply

Hope Sewell November 12, 2012 at 9:09 am

We were told that Dr. Railey is no longer practicing and is now a stay-at-home mom. She is such a great doctor!! However, we have been using Dr. Attkinson at Children’s Hospital of Birmingham. We’ve been extremely pleased with him. He knows allergies and eos and how they work together. He’s very thorough and has a great personality/presence with my children. I hope this helps. I know what it’s like to be desperate for help and resolution!!
Blessings!

Reply

Leave a Comment

{ 2 trackbacks }

Previous post:

Next post: