Posted By Posting
Jul 13, 2009
adelines mom
eosinophilic esophagitis (ee)
just got back from seeing our new allergist. just wanted to get adeline tested. they pricked her with about 20 things and NO food allergies. this took almost 3 1/2 hours and i had lost my patience with the appointment. we had a brief visit with the doctor at the end and she recommended that we do an endoscopy and wanted to see if it was ee. we see our gastro doctor on wednesday. our last visit with him was about three months ago he did not want to do this. he was very pleased with her growth. she weighed 20.5 pounds today at the visit and she is 11 months old. having a really hard time trying to transition to real foods. she is fine with 1's, 2's and a few 3's in baby food and does well with oatmeal and multigrain cereal. but is still refluxing and our nights are REALLY difficult. last night she threw up all of her dinner. scared me to death. she has never had a problem with taking her bottles. if it is ee, she talked about going on "neocate" only diet. will talk with the gastro doctor and see what he thinks. any thoughts? have just pulled up the apfed website. would love to hear about your experieces with the endoscopy. adeline has a blocked nostril and that scares me putting her under. i kinda want to go ahead and do this and get some answers. many thanks for reading this!
Jul 13, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
For us the thought of the endoscopy and anticipating it was worse then the actual procedure.

They gave my daughter "giggle juice" (except hers was in a shot not the actual liquid to prevent her from aspirating when they laid her down for the scope) and then she was pretty out of it. She was old enough to tell me about all the interesting things she was seeing. ;)

They took her back and did her scope and then the dr came to talk to us and let us know what they had found. We had to wait for her to wake up and they called me when she was in recovery. She was groggy and loopy and did spit up a few times after but was back to her normal self in a couple of days. (She was tired the first couple).

For us it was a pretty positive experience. They did really well with my daughter and it gave us the answers we needed as to why she was still having problems.

If you are concerned about the nostril or anything else prior to the procedure ask the DR. Usually they will be able to reassure you. They told me that my car ride to the hospital was probably more dangerous than her scope. Of course that didn't make me feel better at the time... no one wants to have to do any procedure that requires their child to be put under! Do you have a local Children's hospital?
Jul 13, 2009
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.
Z'e endo was at about 15 months and it was WAY more traumatic for me than for him! lol...he was out within seconds and was pissed when he woke up, but was FINE and playing a half hour later at home...you would never have known he'd had a procedure done that day!
Jul 13, 2009
yianni'smom
Yianni was born 09/08. He has MSPI. He was diagnosed with GERD at two weeks. He is currently taking Prevacid three times per day (7.5, 7.5, & 15). He was on Reglan for eight months and was doing much better. We took him off because of the hype. Now we are riding the reflux roller coaster again.
We just went to the GI today as DS's pedi suspects EE. He will have an endoscopy and a ph probe on Thursday. I'm nervous about the test and that he will be off meds for three days. DH is out of town, too. ARGH! I'll let you know how it goes. The GI did tell me that he will be able to tell if it is EE right away. My DS cannot tolerate any food whatsoever. His face even swells with Elecare. We have had two GIs and are now back to the first one. He believes me now. It is such a shame that it takes forever for docs to listen to us! Good luck with your DD.
Jul 13, 2009
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
Just to let you know, if you start the elemental diet prior to the Scope you can get a false result. I would continue on your current diet until you can get a scope done. Then go on to the elemental diet.

The reason is this, if you go to an elemental formula, all the allergens (or most of them) will not be present in the diet. This will enable the number of EOS to drop and the esophagus will heal and they scope will show everything as being A OK.

Just a thought. :-)

Jul 13, 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
Ditto to Z's mom's comments. Ryans was at 11 months. They put his to sleep, slipped down the scope, took biopsies along the way that were no bigger than a pin head, he woke up and was pissed off at the world for a little bit then fell asleep. The upper GI later that morning was way more tramatic. My mom had to leave the room and she has been a hard core nurse for 50 years. One of those white uniforms, white shoes and hat kind of nurses. Smarter than any doc I know. She was fine for the endoscopy but not the upper gi. She will be very sleepy the rest of the day which is great for sleep feeding and snuggling to get over the mommy guilt. We will be thinking of you! Good Luck!! Byw... allergy testing at this age is totally inconclusive... They may test negative and still be allergic. The tests arent very factual till the age of 2.
Jul 14, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
It is so hard to think of your child having a "procedure" done. But as everyone has said, it is a very easy procedure and the info that you receive is invaluable. It can help you develop a plan that will trully help your child.

I think the children's hospitals are the best place to go if you have one.

Jul 14, 2009
adelines mom
wow, ladies THANK you!!!! will post after our gi visit tomorrow. anxious to see what he thinks. yianni's mom PLEASE let me know how things go.
Jul 16, 2009
adelines mom
we saw gi yesterday. he is on board with us. going to do endoscopy sometime soon. waiting for nurse to call and schedule. hopefully this will give us some answers.
Jul 16, 2009
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
I Hope they get you on the schedule soon for getting that scope, that is good news they are doing one. Let us know when they want to do it.
Jul 17, 2009
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.
My son has EE & has had at least 4 scopes to date. He also has asthma, which is a concern when they are knocked out. Because we deal with a well-known Children's Hospital, they take his history/asthma very seriously. So far, he has done wonderful each time & bounces back right away. For us, it has been a long journey. I realized even with reflux meds & pulling the (3 or 4) foods he tested positive to (allergies), that he wasn't eating like my other kids did. He was picky, choked on small bites, etc. So, by the second scope (must be eating a full diet to tell) the EE reared its ugly head. After going to an elemental diet only (Neocate) for 7 weeks, he has started trialing foods. Five at a time, then we scope again. At this point, we would be happy to find 50 foods that do not activate - trigger - the EE. The culprit foods CANNOT be found by allergy testing. Good Luck, let us know how she does. El
Check with your
doctor first!