Tobin’s Life With EOS

by Hope Sewell on May 17, 2011

in allergies, eos, family, kids

This whole week is National Eosinophilic Awareness Week.  I told you about how both Tobin and Lilly have an allergic inflammatory disease called Eosinophilic Esophagitis HERE.  So I’m not going to totally recap what that disease actually is but I did want to share a little bit of Tobin’s story here today.

He was born at the Southeast Alabama Medical Center on July 6, 2005 at around 3:30 in the afternoon.  He weighed 7 lbs and 8 oz.

 Big sister LOVED him from the moment she laid eyes on him!!

Things really started out great.  My pregnancy and delivery with him was WAY easier than it was with Ruthie.  He nursed very well and got adjusted to life outside the womb pretty quickly. 

uggh!!!  This pictures bring tears to my eyes!!!  How fast time flies!
Life was great except I did notice that he spit up A LOT!!  I would nurse him a full 20 minutes or so and then he’d spit it all up.  His tummy was empty and he was still hungry.  But I didn’t notice anything major until we started solid foods.  
Once he started solid foods he started vomiting multiple times a day multiple times a week.  This started at about 6 months of age.  Because he wasn’t keeping anything down, he started losing weight.  Things actually went so far that he fell off of the American Academy of Pediatrics’ growth chart.  
I really like my pediatrician at the time but he was just not aggressive in any way, shape, or form.  When I asked him about the vomiting and such his response was, “Babies do that.”  I found out that Tobin was considered “Failure To Thrive” by reading my check-out sheet after a routine check-up.  My doctor never addressed the issue with me.  It was time to find a new doctor. 😉
He also had a LOT of Eczema….
Sorry for the cheeks here but you can see it all over his legs and some at the base of his neck.
  I took him to the park in shorts one afternoon and another mother approached me and asked me if he was sick….she didn’t want her children playing on the equipment after him.  Broke. My. Heart!
Nothing about food allergies was ever mentioned to me as a possibility of what was going on with him.  I had to find that out on my own.  :(  One Sunday afternoon after church I decided to let him try a peanut butter and jelly sandwich.  I knew enough about food allergies to start him out with only a little bit and see what happens.  I gave him a bite that was about a 1/2 inch.  Immediately he started screaming, rubbing his eyes and vomiting several times.  Thankfully no breathing issues that day!!  Once this happened, I knew we had a problem.  We were referred to a local allergist.  I took him one afternoon all by myself to have blood work for his very first allergy test.  I cried, but he did NOT.  He just sat there so still while they stuck him with the needle and drew his blood.  Then the sweet nurses gave him a cookie…..something that he was allergic to but we didn’t know that at the time.  
The results were shocking to me.  The test results were positive for wheat, egg, soy, peanut, and green pea.  
You’ve heard me say this before but I love to research and this is where that love came in handy!!  I got to researching what my baby could eat and in four weeks from that initial test I made him his first birthday cake.
Instead of wheat flour, I used barley and oat and I replaced the eggs with a boxed egg re-placer.  We didn’t realize at the time that he was allergic to these grains as well. 
In the mean time, I switched pediatricians.  I did more research and found a local doctor who had a great reputation and a love for research himself.  We started seeing Dr. Claude T. Ashley.  On one of our first visits Tobin was still extremely small.  In fact, he wore the size 12 to 18 months in clothes for a whole year.  At first Dr. Ashley didn’t give us much hope….he just wasn’t sure what was wrong but he did say, “If I can’t help you, I will find you someone who can”.  But the more we spoke, poked, prodded and tested the more we learned.  
One of the first tests was Cystic Fibrosis.  He had all the symptoms…I was sure this was our answer to the mystery.  He was tested here at Flowers Hospital and two days later we received a call.  It’s never good to get a call from the nurse when she says…”Please hold, Dr. Ashley wants to speak with you.”  I literally hit the floor.  I just knew he had Cystic Fibrosis and it scared me to death.  Dr. Ashley said that his test numbers were elevated…a little higher than he’d like them so he sent us to Children’s Hospital in Birmingham, Alabama to be retested.  We would have the sweat test repeated as well as a chest xray.
 We walked and we waited for what seemed like forever and then we got great results.  He did NOT have Cystic Fibrosis!!  We celebrated these results by spending the afternoon at the Birmingham Zoo!
I felt a little weird after we got these results.  I was elated that he didn’t have CF but I was disappointed that we still were going all the way back home without an answer to what was wrong with my baby!!
  The next test was a test for a bacteria called Helicobactor Pylori.  This came back positive!!  YAY!! We had an answer….or so we thought.  We treated the H. Pylori with Prevacid for 2 weeks as well as an antibiotic and went on about our business.  But he still continued to get sick on a regular basis.  When I mentioned this to Dr. Ashley,  he said there was one thing that we had not tested for and that was something called Eosinophilic Esophagitis.  This would have to be tested for and treated in Birmingham so we made our appointments.  We spent two days and had LOTS done.  First was an x-ray for reflux…he has grade 3 (out of 5) reflux.  Next, we saw an allergist at St. Vincent’s Hospital.  This time we did blood work as well as the skin prick test.  This is January of 2007.  He’s been dealing with problems and not growing for 18 months now.
 Loved his curls!!  😉
 After this test, we found out that his list of allergies was quite extensive and he was eating stuff that he was allergic to constantly.  The next day, he had his first endoscopic surgery.
 He was not feeling too good bless his heart!!  His mouth is orange because of the popsicle that he got afterward.  These became FAVORITES of his!!  😉
We finally had a diagnosis!!  We went home knowing that he had Eosinophilic Esophagitis and we had a course of action!!  Biopsy results later confirmed the diagnosis.
His next scope showed that the condition of his esophagus was getting worse…not better.  So that’s when we tried the newest drug on the market, the Budesonide slurry.  And thankfully, it worked.  He’s had a total of 6 endoscopic surgeries.

 We also changed allergists (again….3rd time’s a charm!:)  And found a FANTASTIC one at Children’s.  She’s now in Huntsville and the drive is so worth it!!  In March of 2009, Tobin was the first child at Children’s Hospital and the state of Alabama to undergo patch testing for his allergies.  Inside each of those little discs is a food.  These patches stayed on for 48 hours and the results were read after 72 hours.

 These results plus blood work showed positive for eggs, peanuts, wheat, corn, barely, oat, almond, cashew, and pea.  As well as these environmental allergies: dust mites, mold, trees, grass, cat and horses (his favorite animal EVER!!)
Below is a picture with his Gastroenterologist, Dr. Janina Nogueria.  We’ve seen her since the beginning and are so thankful for her.

 We make very frequent trips to Birmingham and Huntsville for check ups and testing.

This is his most recent allergy test….August 2010
 
Thankfully, with the help of these medications, Prevacid, Periactin, Flovent inhaler (he swallows it instead of inhales), Singulair, Triamcinolone (a topical cream for his eczema)ibuprofen (for the many leg and muscle aches) and his esophagitis is now under control.  He’s finally made it back on the growth chart and he’s right around the 25th percentile.
He eats VERY different than your average little boy and many people are curious as to how we manage and I’ll try to blog about that before the week is out.  We are so thankful that he does have safe foods as many children with EOS diseases do not and have to be fed through a feeding tube.  In a society that REVOLVES around food it’s tough for him.  We were eating somewhere recently and there was cake (unbeknownst to me) that he couldn’t have.  Someone mentioned not eating it in front of him and another person in the room said, “He’s used to it.”  Once again, that broke my heart!!  I really don’t know how it makes him feel as he’s quiet about his emotions but I do know that he feels left out when there’s food and he had to eat something different from everyone else and easily gets embarrassed when a fuss is made of his differences. I remember one time a few years ago I made “secret arrangements” with his teacher at Community Bible Study.  I gave her a safe snack that was to be “manna” and he never knew it was from me.  He was so proud to get something from his teacher…..he did make sure (at 4 yrs old) that it was allergy free for him before he ate it.  But he talked about it all afternoon!  Makes my heart smile.
Through it ALL he has been a super brave boy!!  And I’m so proud to be his mother.  Will he outgrow it??  Who knows.  Technology and information is so new on this disease that we can only take it one doctor visit at a time.
(this was taken when I was expecting Lilly)

 

Eosinophilic Esophagitis and his myriad of food allergies does not define him.  Although most people know about his EOS and don’t understand it, they also know that he loves horses, dinosaurs, and dirt!!  He’s very close to his older sister Ruthie and a great big brother and protector to his little sister Lilly.
We are so proud of him!
I feel like this is a poor description of his story but there is just so much to tell.  I think the overarching theme is wrapped up in his name.  We spend lots of nights in Birmingham hotel rooms.  On one occasion…in the beginning of this journey, we laid awake in a hotel nervous about what test results would have to say about his future.  A friend of mine reminded me of the meaning of his name via email.  Tobin is Hebrew for YAHWEH is good.  And through all of this, the ins and outs, the good and the bad YAHWEH is good and He has been faithful.

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{ 4 comments… read them below or add one }

Linzies Photography May 17, 2011 at 12:19 pm

Ohhh sweet boy! It made me sad that a mom asked you that at a playground and someone said that he was used to people eating cake in front of him. When mommas babies hurt, i think mommas hurt more. What a STRONG boy, and such a sweetie. Thank you for sharing this with us. I love what his name means!!!
lindsay

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Jessica May 17, 2011 at 1:50 pm

Thanks for sharing all of that, Hope. You guys have certainly been through a lot. I'm so thankful that you guys have found good doctors to go through this with. Dr. Ashley is our pediatrician as well. We love him and the fact that he is so "current" on things. I hate when I have to see an on-call doctor and they tell me something like "its just part of it." Dr. Ashley diagnosed Anna Lee's reflux quickly. When I talked to another doctor at church about it before going to see Dr. Ashley, that doctor told me that babies just spit up a lot. Ugh. Finding a good doctor is very difficult, but like you said, its so worth it when you do and definitely worth the drive to see them. I'm amazed by the mom you are and all of the adaptations you've made for your kids. One day they'll look back and see this as one of the many examples of how much you love them.

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Charlotte Smallwood February 12, 2013 at 1:16 pm

Would you mind sharing the name of your son’s allergy doctor? I believe you mentioned it’s the 3rd one and she’s in Huntsville. We live in Arab and my son has several doctors in Huntsville. We are looking for an allergist to do food testing as recommended by my son’s GI doctor. Thank you! Also, thanks so much for sharing the journey you have been on with your son… it is very helpful!

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Hope Sewell February 12, 2013 at 4:07 pm

The doctor we used in Huntsville was Dr. Mary Dell Railey. However, she’s no longer practicing. We are now using Dr. Atkinson at Children’s Hospital in Birmingham. We have been extremely pleased with him as well as his nursing and office staff. I hope your son’s testing goes well and you can get some answers!! I’m so glad our story has been of some help to you!
God bless!!

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