The elevator to success is out of order. You'll have to use the stairs...one step at a time. ~Joe Girard

Spreading Awareness

My purpose in writing this blog is to spread awareness and provide support to parents of children with and without special needs. I have one child with a Learning Disability, more specifically, a Visual Processing Disorder including Dysgraphia and another child with a disease called Eosinophilic Esophagitis, an allergic white blood cell disease that attacks the esophagus.

Wednesday, February 10, 2010

Eosinophilic Esophagitis

Boy, this is a hard topic to write about. I still don't understand all the facets of the disease myself. For that matter, neither do the doctors.


The definition of Eosinophilic Esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. Okay, so what is an eosinophil (eos)? It is a type of white blood cell that is an important part of the immune system which helps fight off certain types of infections (among other things). Many problems can cause high numbers of eos in the blood, but in Andrew's case it is caused from food and possibly environmental allergies.
As written on the American Partnership for Eosinophilic Disorders (APFED) website,
Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines. People with EE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema. EE affects people of all ages and ethnic backgrounds. Males are more commonly affected than females. In certain families, there may be an inherited (genetic) tendency.
In individuals with EE, the eosinophils cause injury to the tissue in the esophagus. EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve.



So, that's the technical part of the "What is EE?". Here's the personal part. In our case, and I should say that Andrew is probably mid-line on the spectrum of EE, it started with a very fussy baby with what we thought was reflux. It progressed to regurgitation 30-40 times a day, stomach pain constantly, chest pain, sore throats and vomiting after eating. That's a lot for a little boy to deal with. But those were only Andrew's symptoms. Symptoms can vary from child to child. This is a list of what symptoms may include:
◦Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach)
◦Dysphagia (difficulty swallowing)
◦Food impactions (food gets stuck in the esophagus)
◦Nausea and Vomiting
◦Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite
◦Abdominal or chest pain
◦Feeding refusal/intolerance or poor appetite
◦Difficulty sleeping
-among others.


It is a relatively rare condition, however, it is being diagnosed more and more in children (and adults) as time goes on. I have learned that it is important to listen to your child, but it is also important to listen to that nagging mommy intuition that keeps telling you "something isn't right, we don't have all the answers". It also helps to have a wonderful pediatrician that is willing to go the extra mile, do research, call you in the evening and talk for half an hour to forty five minutes and never make you feel like you are crazy.


Although this is a difficult and overwhelming disease to manage...changing your child's diet so drastically takes research, planning, money and time and a positive attitude from your child really helps...it is important to find a doctor that truly understands the disease and guides you and your child down the path that will lead to your child's eventual remission. That is the what the top specialist say should be the goal for each child with this disease.


So here's to hoping Andrew's on that path!........

5 comments:

  1. I just stumbled upon your blog and want to thank you...I have a son who has EE and just began my own blog because of people like you who have helped me get through the first year of living with the disease! If you would like to take a look or link our blogs it is: http://ahardjob.blogspot.com/
    Kim

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  2. p.s. I taught special education (primarily in a cross-cat LD/BD classroom) for years before I had my kids! I definitely know a little bit about kids with learning difficulties!

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  3. Hi Kim,
    Thank you for your comment. I am so glad my blog has been helpful. This disease can be so difficult, knowing how other people cope and "tricks" they have learned can really help. I am looking forward to checking out your blog!
    p.s. I have a special place in my heart for sp. ed. teachers. My mom taught self contained and was inspiration to be a teacher...even if she did talk me out of sp. ed. :)

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  4. Hello
    I just found your blog, it's nice to no there are others like my son. Thank you!!
    It has been a ruff road for the past 4 years. My son now 4 1/2 has EE. We noticed at 6 months something was wrong. The doctors kept telling us he was fine. We had to push and push for referrals. Finally we found our wonderful GI Pedo Doctor. Who happens to know a lot about EE.
    My son has had blood work and patch testing. But his allergies keep changing and to make it harder not all the doctors are on board. So we are now having to go out of network because the doctors wont/cant help. Meanwhile my son still doesn't tell us what hurts. Then to make it worse my mother in law who helps watch the kids when we are at work doesn't think he has a problem. She is looking for a rash or exterior reaction so she feeds him what ever. AHHHH

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  5. Thank you for your blog. I am just starting this journey. My son is 16 and was just diagnosed. He was tested for the main food allergies and was positive for all of them. Shopping and meals has been very hard but is getting better.

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