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Jun 28, 2008
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.
Dairy/Soy free PPI?
Eric's GI Dr. wants him back on Prevacid for 6 weeks before rescoping for ee. I called the co. & was informed the solutabs have dairy & maybe soy and the capsules are made with soy (geletin), but the inside granules are dairy/soy free. I'm leary of cross-contamination. Does anyone know of a PPI that is completely free of dairy/soy/egg/peanuts? Eric will also be having a modified barium swallow study. Is anyone familar with this test. He is completely out of control around Dr.s, so I'm nervous about any test where he is awake. Thanks guys!!! Ellen
Jun 28, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
I'm not sure, but we do the capsules and pour the granules over the food and it seems to not be an issue at all for Cooper, even though dairy/soy even in trace amounts through breastmilk is. But this really frustrates me. Why would they use soy/dairy in something that is frequently given to ones w/ d/s issues! Urg!
Jun 28, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Hi! Sebastian's numbers for soy are quite high, but we have no problem with the capsules. I actually didn't know about the soy capsule sleeve, but our allergist (who I worship) never mentioned it to us...and he is extremely observant. Are you sure the gelatin woul dbe a problem, as it is not a protein? You might look into Nexium, though. I don't know the ingredients, but maybe that one is completely allergen free.

I, too, am EXTREMELY worried aobut cross contamination - I eat nothing that Sebastian is allergic to when he is awake (this makes for a lot of corn tortillas, baked sweet potatoes, and sliced turkey). I also keep my entire house free of anything that is even processed in a plant with treenuts, peanuts, and eggs, and I gated off th ekitchen so Sebastian can never go in there in case I dropped a bread crumb or something....
Jun 28, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Oh - the barium swallow. Sebastian had one of these a few months ago. It was much better than I thought. They made us starve him beforehand so he'd be nice and hungry, and then they gave him a bottle of barium mixed with something sweet to suck on while he rolled around (unrestrained) on an X-ray table. We got to be there with him the whole time, and no one was breathing down his neck or holding him down. we just had to make sure he didn't roll off the table. Of course, he wasn't sitting up then, so it was probably a lot easier than it would be for an older child/baby...

By the way, the barium causes EXTREME constipation, and no one told us that. Poor Sebastian has that problem anyway, and it was horrendous when the barium came out. He popped blood vessels on his forehead and in his eyes from screaming while he tried to push out a white rock. I had to help him, and his butt bled. It was awful...but you can avoid it by giving him extra drinks or a laxative or something now that you know!
Jun 28, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
coy has serious issues with soy and dairy and could not do the solutabs. however, we've had limited success with soy lecithin so i think the dairy in the tabs were what did it. can't they compound it for you into a liquid so you can hide it in his juice? or coy even drinks his straight up now (zantac) as it is grape flavored .. but it tastes like booze to me!

i too am leery of cross contamination. i don't ban my house of foods but i never eat peanuts while he's awake and always wash my mouth & hands after. i also won't feed him with my hands while i'm eating something that he has issues with. i eat standing up in the kitchen mostly anyhow:)

are they rescoping to see if the elimination diet has cleared him?
Jun 29, 2008
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.
We are going to have him rescoped primarily because it's been over 1 1/2 yrs. since his last one at approx. 10 mths. of age (& of course, he had only been on solids for about 4 mths.), but mostly because he is still swallowing oddly & choking on small amts. of foods & has such horrible food and environmental allergies. We really need to rule out ee, in order to understand if reflux is still causing all of this. Thanks & maybe I will see if the allergist has a problem with the capsules being broken open. Ellen
Check with your
doctor first!