My Son

My son is a six-year-old boy with an active imagination. He loves watching movies, cartoons, and going to Auburn basketball games. More about the Auburn basketball games  later. He also suffers from a relatively new condition called eosinophilic esophagitis. Before I get to that, let’s go back to the beginning.

My son Harris (I call him Harry) was born at a whopping 11 pounds. He was so big that he gave his mother an umbilical hernia which had to be surgically repaired. He got that big due to his mother (my precious wife) having gestational diabetes.

All went well until five weeks post birth he stopped eating. He had his first upper GI at a month and a half of age, drinking the barium right out of a baby bottle. The test showed he had acid reflux, which I don’t think is that uncommon for children that age.

Within a few months we were seeing a pediatric gastroenterologist here in Montgomery. She ran every test she had the ability to run and was able to rule out most of the common causes for his condition: failure to thrive. She had him put in the hospital twice and had an NG tube inserted for feeding him. That was a temporary solution, but not a permanent fix.

When she had exhausted every option available to her, we were referred to Birmingham’s Children’s Hospital and Dr. Shehzad Saeed. To my shame, prior to meeting him, I imagined him to be a humorless man with a terrible accent that was barely discernible. He turned out to be anything but. Dr. Saeed is a wonderful, warm, and caring man, very jovial and friendly. He does speak with an accent, but we had no trouble understanding him. In short, he was and continues to be a major blessing in our lives.

Harry with Dr. Saeed

Dr. Saeed also had Harry admitted to the hospital. One thing he could do that couldn’t be done in Montgomery was an endoscope. That showed no cause for Harry’s failure to thrive. We worked with an occupational therapist and nutritionist in the hospital trying to find any answer, any clue, anything that had been overlooked that might solve the mystery of why my little boy refused to eat.

Dr. Saeed believed the best course of action was the installation of a g-tube so Harry could have formula injected directly into his stomach. Of course that was a hard option to hear and accept, but we loved our little baby boy and we wanted to give him the best care in the world. There was no question. We would trust our doctor and take his recommendation.

Harry sporting his G tube

Sometime in January 2004, a surgeon named Dr. Barnhardt, installed a feeding tube into my son’s stomach. He would begin getting regular formula injections plus an all nite drip by way of a pump. It was not the ideal thing, but at the time it was the only thing we could really do. He simply wouldn’t eat.

Eventually Harry endured two more surgeries. He kept an ear infection and had to have tubes placed and his tonsils stayed swollen, so they were removed as well. Both involved overnight hospital stays in Birmingham since he was a special needs child.

He began working with an occupational therapist on a regular basis. At the beginning of his therapy he didn’t even know how to jump. I’ll never forgive that OT for teaching him. He is a little too proficient at jumping now.

She worked with him trying to get him to eat. She worked with him for over a year, and gradually the amount of food he would intake increased. It was a good thing because it became increasingly difficult to give him adequate feeding in his G-Tube.

After several years Dr. Saeed judged that he was gaining weight and able to sustain himself. The g tube was removed. Dr. Saeed told us to have a nice life. We wouldn’t need to see him anymore. It was a happy day for all of us, albeit tempered with just a twinge of sadness. We had all become very fond of Dr. Saeed.

All went well for a year then he stopped eating again. He said it felt like there was a bone stuck in his throat. So we called Dr. Saeed and made an appointment.

His initial thought was that it might be behavior related. But nevertheless he wanted to rule out some things. Harry was scheduled to have an upper GI. That’s the procedure where you have to drink barium and then they can see the movement on some sort of camera that can track radioactivity. It showed some mild reflux but nothing really worse than that.

After taking Prevacid and it not really helping with Harry’s complaints, Dr. Saeed scheduled an endoscopy. Harry was scared enough when he had the upper GI. But by now he was old enough to understand what they were going to do.  I asked him if he was a little scared. His reply, “I’m not just a little scared. I’m all the way scared.” Of course his mother and I did everything to calm him that we could – as did the hospital staff – but it’s hard to keep a child that young from being afraid. He did receive a stuffed rhino from a hospital worker. He called the rhino “Spike”. We told him Spike was strong and courageous. Spike has been present at every endoscopy since that very first one.

Dr. Saeed came back with some news. He found an esophageal condition called “eosinophilic esophagitis.” It is a build up of white cells inside the throat and esophagus caused by unknown factors believed to be food allergens of some sort. I was relieved in a sense, because after all the years we finally knew the reason he would not eat.

The normal treatment for this condition is oral steroids. Harry was started on prednisone. Now this particular medicine had several unwanted side effects. He began to grow hair on his body, his face got plump and red, and worst of all he began to have violent mood swings. One minute he would be happy and the next he would have a fit of uncontrollable rage, often over some trivial thing.

We endured this for several months until time for his next endoscopy. The results showed that the steroid had been effective. His condition was no longer extant. We were able to wean him off the steroid.

A few more months passed and then the next endoscopy showed that absent the steroid intake, his condition had reoccurred. Our hearts sank a little bit. We had been hopeful that he would get another good report.

This time he was put on Flo-vent, an oral inhaler that had proven to be successful in some cases. Unfortunately in Harry’s case it wasn’t. His next endoscopy showed no change. So he was put back on prednisone, although a lower dose to try to prevent some of the violent mood swings.

That didn’t help either. After his last endoscopy, Dr. Saeed, said that it looked worse than ever. The next step would be to start a six step elimination diet. We would have to take him off of eggs, dairy, wheat, soy, fish, and nuts. And he would refer us to Children’s Hospital of Cincinnati. A doctor there was the world’s foremost expert in Harry’s condition and had a whole clinic dedicated to nothing but that .

We will be starting the elimination diet on Thursday April 1. While the diet seems restrictive, he will be able to eat most meats, vegetables, and fruit. Fortunately he likes fruit.

We will go to Cincinnati sometime late this spring or in early summer. We haven’t been scheduled yet so much of our summer plans are up in the air because we don’t yet know what week we will have to be in Cincinnati.

Now let’s get to the Auburn basketball. For Christmas this past year I received Auburn basketball tickets for all Saturday home games, six total games. My original plan was to alternate taking, Harry, my daughter Gracie, and my wife Emily.

Harry went to the first game with me. I wasn’t sure how he would like it. He had never watched basketball before and he was six and all the fidgeting that came with being six. But to my surprise, shock, and utter amazement, he instantly fell in love with the game. He learned the basic rules quickly and picked out a favorite player (Frankie Sullivan).

 Meanwhile my wife and daughter had been going to Friday night gymnastic meets in Auburn and were too tired to go to basketball on Saturdays. That put Harry right back in the driver’s seat. We got to see South Carolina, Kentucky, Alabama, Mississippi State, LSU, and Arkansas among others. When Gracie did express an interest in going to a game, I just couldn’t bear not to take Harry so the three of us went and had a great time. 

We finished off the basketball season by making a trip to Tuscaloosa to see Auburn play Alabama. I’ll say that out of the 12,000 fans that were there the overwhelming majority were great folk. In fact we enjoyed talking to some of the Bama fans sitting behind us and I enjoyed listening to them root. But one jerk started screaming directly at us, “We just beat the hell out of you.” My wife let him have it and he shut up. From the looks of things the only thing he ever beat was a path to the refrigerator.

In any event, for most of Harry’s life he clung to others. His mother, his grandmother, and his grandfather. I was always kind of a second thought. But that changed to an extent when I took him to Carowinds this past summer and to a larger extent when we began going to basketball together. He and I bonded like we never had before.

Harry is an awesome blessing in my life. He has been through more in six years than anyone ought to expect to go through in a lifetime. But through it all he has been happy, well-adjusted, and has lived his life as fully as he can. I love him more than I am able to describe. I love him more than life itself. Whatever happens from this point on, I know he can handle it and he will still be smiling!!! And I will still be filled with pride over a little boy who has taught me the meaning of joy and unconditional love.

 

 

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8 Responses to “My Son”

  1. Brittany Says:

    Don’t write posts that make me cry!! Harry is a sweet boy. 🙂 I am glad to know y’all.

  2. Praying for you guys! Hang in there.

  3. Alan Green Says:

    God Bless you and yours Mojo. You’re an inspiration – and Harry’s another!
    I wish you all the very best and pray for Harry’s healing. No doubt you’ve endured many hard times but love is the greatest gift and you guys clearly have that in abundance. Take care, Al

  4. I love this and I love you and your family and I can’t wait to meet y’all in person one of these days! Keep us updated here, or through email, or whenever, please.
    XOXO
    Sis

  5. I am so happy to have found your blog! I live in Hoover and run the very small eosinophil support group for Alabama. I also coordinate political action for the southeast for APFED. My 5 year old son was diagnosed with EoE in May 09, was treated at Cincinnati Children’s by Dr. Franciosi for a while, and is now treated by Dr. Markowitz in Greenville, SC (formerly of CHOP’s EoE clinic). James failed steroids and the 6 food elimination diet. He is now tube fed elemental formula and has no safe foods. Please do not hesitate to contact me if you would like.

  6. Cindy Anderson Says:

    We have had a very similar battle with my 7 year old son, Liam. He had about 5 scopes before he was finally diagnosed with EE. He now has a feeding tube and that has really helped. He has gained 8 pounds in 3 months and is up to 38 pounds! It is a very difficult disease, but my son too is always positive and smiling and enthusiastic for LIFE! They have so much to teach us! God Bless you!

  7. Thank you for blogging and sharing information about EE. Because of you and others that have shared personal experiences, I have found some answers and have found it therapeutic to research about EE online. I decided to write my own blog about my experiences with my son who has EE. If you want to link it on our site, I can reciprocate too!
    http://ahardjob.blogspot.com/

    • my 10 year old son was diagnosed 3 months ago he was found to have stricture on b swallow then scoped it was dilated and we were told he has ee after eating problems his whole life it made me feel guilty always having made him eat when he didn’t feel like it meals lasting over an hour excusing himself to go to the bathroom to vomit endless doctors visits no answers until now he is one of the smallest in his class me and his father are both tall it hasn’t stopped becoming a brown belt karate at 8 a great swimmer these children suffer every doctor in the country should know about this disease when a child doesn’t respond t o medication it should be suspected he is responding well to steroid medication but at times still fees sick but a 90% improvement fear him being taken off medication and the sickness returning couldn’t bear it he used to say to me that there was something wrong with him and could he be cured Ive been told by an expert in this field that it is an auto immune disease not allergy alone do most children have asthma hay fever mt son only seems allergic to cat hairs I have no allergies is it gentic as most rare diseases are in England there very little research done as far as I know your lucky in America your research is wonderful its only carried out by a few academics here I feel on my own I have had everything done privately but this takes long term management and I cant stretch much further he still hasn’t seen a dietician there is a hospital in London St Thomas’s but the clinic only takes place every two months its for allergies cant get a response from them. I love my son so much I will never stop fighting on his behalf I think of all the children out there with ee you are very brave I pray that a cure will be found.

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