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Jan 20, 2011
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
eosinophilic esophagitis can cause dysphagia
In case anyones interested in more info. on this you can e-mail me at dpasini@att.net It took us a long time to get to this diagnosis, but usually doctors will consider EE when the reflux meds fail to work. Eosinophilic esophagitis decreases the ability of the esophagus to stretch and accommodate mouthfuls of swallowed food probably as a result of the presence of so many eosinophils but also, perhaps as a result of some scaring that occurs in the wall of the esophagus. As a result, solid foods (particularly solid meats) have difficulty passing through the esophagus. When solid food sticks in the esophagus, it causes an uncomfortable sensation in the chest, The sticking of food in the esophagus is referred to as dysphagia. If the solid food then passes into the stomach, the discomfort subsides, and the individual can resume eating. If the solid food does not pass into the stomach, individuals often must regurgitate the food by inducing vomiting before they can resume eating. Rarely, the solid food becomes impacted, that is, it can neither pass into the stomach nor be regurgitated. The impacted solid food causes chest pain that can mimic a heart attack, and repeated spitting up of saliva that cannot be swallowed because of the obstruction in the esophagus. Individuals with impacted food are unable to eat or drink. To relieve the obstruction, a doctor usually will have to insert a flexible endoscope through the mouth and into the esophagus to remove the impacted food. Eosinophilic esophagitis causes symptoms of abdominal pain, vomiting, and failure to thrive in children.The diagnosis of eosinophilic esophagitis is suspected whenever dysphagia for solid food occurs.Dysphagia almost always is evaluated by endoscopy (esophagogastroduodenoscopy or EGD) in order to determine its cause. During the EGD, a flexible viewing tube or endoscope is inserted through the mouth and into the esophagus. It allows the doctor to see the inner lining of the esophagus (as well as the stomach and duodenum).
Jan 20, 2011
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
That describes my son so well...his endoscopy is scheduled for jan 28th. I hope we can get a diagnosis for him...can you tell me a little about the meds used to treat EE?
Jan 20, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
The meds used for EE are normally GERD meds and also asthma meds.

The main way to "treat" EE is to go on a complete elimination diet. They will normally put the child NPO and feed by tube or do the formula Elecare. Just about every single child I know with EE is on Elecare as their main source of treatment.

That said, I don't know if I would say those symptoms (dysphasia)always will mean EE is present. There are many kids I know with those symptoms and they have them due to prolonged tube feed or other neurological issues.

The sure fire way to DX EE is to do a EDG. BUT, keep in mind if you have been on an elimination diet for a long period of time, you can get false results.

If you want to contact alot of EE Mommas I know a TON of them on Facebook and they are a VERY well organized bunch. I would not mind "introducing" you all to each other. They will pass your profile on to each other and they are truly very organized like I said.

Jan 21, 2011
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
the reason we are being sent for an endo again is that the first one he had he was exclusively Elecare fed....they want to do it now that he's on a somewhat normal diet. I have noticed some things that discourage me...he seems to have the most issue with mac and cheese...that he asks for every night...more gags, the occasional puke...but then last night he eats a whole foot long hot dog and never even blinks an eye. I worry about Celiacs and a continued lactose issue too..it seemed he had grown out of it, but now things seem suspicious. We'll see!
Jan 21, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Yep, doing the elimination before an EDG can skew the results. When are they doing it? Hoping it goes well for you all!!!
Jan 23, 2011
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
Have they ever tested for Celiac or Lactose int.? I would have them do that while they are scoping. They can test for lactase enzyme and Celiac during endoscopy. I wish I'd had my son tested on his 2nd scope, but we ended up doing it on a 3rd one...he was negative for both though. Of course dysphagia could be other things than EE, good luck, I hope you find some answers. You can read up on EE on APFED.org, usually EE does NOT respond to acid reflux meds.
Jan 23, 2011
kru
One other part of our mystery is that she seems to do fine with cereal. She could eat and eat and eat oatmeal and baby food and then when we go to give her a drink with any kind of cup (sippy cup, nosey cup, regular cup) or bottle she just completely shuts down. We did the modified barium swallow study and it looked like she was penetrating and aspirating on breastmilk via bottle, so we are now thickening with Simply Thick, but she is still rejecting the cup and bottle. We really don't know where to go from here. Our GI was thinking we should go to a feeding clinic in Wisconsin or something. If we go out of state, obviously we want to go to the best of the best. We live in Phoenix. Anyone know of any good GI docs or other specialists in the Phoenix area??? Thanks.
Check with your
doctor first!