Posted By Posting
Feb 25, 2010
jgbennett
Ginger Bennett
Mom to Stanton, 6/12/2008
dx with GERD at 7 weeks. dx with EE at 21 months
Past Life - Early Intervention Specialist and Eval Team Member
Narrow airway = EE
Just an update....the airway specialist we saw Monday said that based on Stanton's history, etc and the xray of his narrow airway, he fits every symptom of EE. I told him we just tested negative for that in October when we had the scope and biopsies. This dr said he sees false negatives all the time. Stanton's throat is inflammed and he has dysphasia....so he is reacting to somehing he's eating. Well he only drinks his prescription milk, so, we are going to eliminate his milk and switch to an amino acid based milk and see if his throat begins to clear. We are switching all our specialists to one hospital. This driving state to state is crazyand I feel like the drs aren't communicating. They just fax records back and forth. This dr said he'd love to head up a team to get to the bottom of Stanton's problem. I am hesitantly hopefully.
Feb 25, 2010
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Never heard of a narrow airway as a def. of EE. My son, who is almost 4, was dx'd with EE almost 2 years ago. He was symptomatic at 2 weeks of age, but it took a long time for anyone to figure it out. Actually, I figured it out. Told the GI dr. to stop just treating him for reflux & rescope (1st scope was neg.). Sure enough, he had EE. This is a condition where white blood cells attack the esophagus in response to food proteins. Sometimes there can be an environmental allergy contributing, but not always. THE ONLY WAY TO DX THIS CONDITION is to scope with biopsies. But, the child must be ingesting the food proteins at the time of the scope to tell. In other words, if the child is on Neocate or Elecare only, they may have the condition, but it will not show on the biopsies because it is in remission. An elemental diet (Neocate or Elecare) is one of the treatments for this disorder. My son still consumes Neocate - we haven't yet found any safe foods. So, while EE is a disorder of the esophagus (food tube), and the esophagus could become narrow and damaged w/o treatment, I would think narrowing of the airway would be called something else. But, a lot of EE kids also have asthma, allergies, and reflux. I don't check PAGER all the time anymore because I mostly go on a site dealing with EE, but I will check in to see if you find anything out. In any case, I hope you do get to the bottom of it all as soon as possible, so your little sweetie doesn't suffer more than he needs too (like my son did). What kind of prescription milk is he on? Our son did not significantly improve until Neocate or Elecare, but remember it's the fix (may stall getting an accurate dx). When was he scoped/biopsies and what was he consuming at the time? Ellen
Feb 25, 2010
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Opps, just saw he was scoped in Oct.
Feb 26, 2010
jgbennett
Ginger Bennett
Mom to Stanton, 6/12/2008
dx with GERD at 7 weeks. dx with EE at 21 months
Past Life - Early Intervention Specialist and Eval Team Member
Yes, our previous scope showed we were negative for ee, but this new dr we saw said he sees false negatives all the time for many of the reasons you listed. I remember feeling like the test results back in October didn't feel correct in my mommy gut. But how do you explain that to a GI? My LO fits every symptom on the ee list. So we are moving forward and switching to an amino acid based formula for toddlers plus. I do feel this new set of specialists are moving in the right direction. And really using a team approach. I was beginning to think that only existed on tv shows like Greys Anatomy!
Feb 27, 2010
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Good Luck & keep us posted. BTW, what beautiful blue eyes he has. El
Feb 28, 2010
jgbennett
Ginger Bennett
Mom to Stanton, 6/12/2008
dx with GERD at 7 weeks. dx with EE at 21 months
Past Life - Early Intervention Specialist and Eval Team Member
Awwwww thanks!
Check with your
doctor first!