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Sep 04, 2009
johnniesnewmommy
what to ask for from new GI
Ok, We have an appointment with the new GI on the 9th. Jedsmommy suggested I might ask about testing for EE. I am going to ask for the endoscopy, but I need to know what else they should look for to rule out while they are in there. Johnnies SEVERE food allergies along with the GERD is going to kill me. I just don't know what to look for. Im sure I will only have a small window of oppertunity to ask for what I think we need to test for, and If I don't come prepared it will be another 6 months before I get another shot. I am finding that If I don't ask for it- It doesn't get done. So any suggestions would be appreciated.
Sep 04, 2009
mommato3
Just make sure they take plenty of biopsies. Maybe someone on here knows exactly but they are suppose to take a certain abount of biopsies from different areas in order to be accurate. Some docs if they don't know what they are doing don't do biopsies or don't take enough. They are looking for esophigels (I don't know if this is how you spell it) but elevated levels mean allergies. If the count is below a certain number it can be just irritation from the reflux but if higher than that amount it is allergies. They are also looking for rings on the esophagus I believe. Stress to the doctor about the severity of the food allergies and make sure he is knowledgable about EE. Another mom, Ellen, who use to post on this board has a son with EE. Other than that they will be able to tell if their are any abnormalities, etc. It would be nice if the GI could time the scope with the pulmonologist doing a bronch. That way he will only have to go under anesthesia one time. That is what they did for Holden. If I remember correctly you are waiting on a bronch too right?? Sometimes if the pulmo knows that the GI is going in they will find room in their schedule to do their testing as well.
Sep 04, 2009
johnniesnewmommy
Yes we are still waiting on the bronch. The lung doc and the ENT are coordinating the scope, but they are in OKC and the GI is in Tulsa-and according to the ENT that would be way to hard to coordinate! I thought maybe the GI could just ask the ENT and lung doc to get the biopsies and run them for him while they are already in there but I don't know if they will agree to do that or not. Im with you on not wanting to have to sedate more than nec.
Sep 08, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Good luck tomorrow!! We will be thinking about you. Yes they should be doing biopsies along the way for EE plus the small intestine for celiac. Should be standard practice for the biopsies, looking for rings and other oddities. Also, just because that comes back negative does not mean they are not sensitive. Ryans came back all clear for EE and celiac as did his RAST test for glueten and wheat but he is sure a fuss bucket the day after he has bread. The allergist said that it is more important that I listen to his moods than a test. They are so young to have anything show up on a test unless it is a severe allergy. Sensitivites bother them too. So... I do pay attention. I dont go over board but I do limit his bread intake to just a little and I make sure I buy the Hormel gluton and nitrate free deli meats and stick to whole single ingredient foods. Life is much much better that way.
Sep 08, 2009
johnniesnewmommy
Thanks- I will update after his appt. Wish me luck!
Check with your
doctor first!