Posted By Posting
Jul 07, 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.... :(
Sebastian's biopsies show Celiacs disease, severe reflux, intestinal damage (???), and are otherwise inconclusive. More ordered for tomorrow.
Well, we finally got our results...sort of. Our GI called today and said the biopsies show a surge in reflux since his upper GI in Feb (is this even possible? I guess so. Thanks a lot, Prevacid). They also suggest he has early Ceclics disease (Sebastian had oatmeal for two weeks in April and rice for a week in early May...no wheat...although he is allergic to wheat and barley). I asked about EE and other EOS disorders, and she skirted the issue BIG TIME. She wants us to have more bloodwork done tomorrow morning and wants to have his blood checked for some chemical...I want to say Gastrin? I have to look it up. So basically, we know his reflux is bad (although I knew this already), that he could and probably does have Celiacs, and that he could have an eosinophillic disorder. I will keep you posted. In the meantime, I will continue to attend to my screaming, arching baby who never sleeps, pukes up everything, and still loves his doggie (and his mommy!!). Hope all is well with all of you!!
Jul 07, 2008
jedd'smommy
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
HUGE HUGE HUGS!!!

I hope the dr. gets home from vacation fast so you can get some answers.

Did they want to switch formulas....????? Or give you any advice on what to do NOW????? In the meantime??????

I pray that upcoming tests will go well and will help you to formulate a plan for Sebastian.
Jul 07, 2008
jmom
Josh 12 yrs colic as a baby
Jenna 6 yrs dream baby
Jessica (6/11/07) Silent reflux dx at 3 weeks
Went off meds successfully at 3 mos
Went back on Prevacid 8 mg TID 1/3/08
I'm glad you're getting some answers(slowly). I hope they can get a plan together quickly that works for your family. Cristy
Jul 07, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I'll say this...at least you're handling it with humor. What else can you do besides go insane? I believe when God hands these kids out, he knows who to give them to. That's why Maggie's case was so easy, lol.

Oh I just noticed your comment, lol. I wear polos with the collar turned up. (not)

Jul 07, 2008
seamus' mama
Seamus was born 7/6/07, one month early with Silent Reflux. Zantac since 3 weeks old, currently taking herbs and probiotics.
Goodness. I'm sorry the results weren't uplifting but at least you got some answers..there is so much info about Celiacs..There is probably a support forum like this one too. Why the reflux surge? Could it be due to his increased mobility/crawling/lunging/steps/etc? Hopefully the bloodwork will tell you more ..This kid is just full of surprises !! Love out to you!
Jul 07, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Sending big hugs and prayers your way.
Jul 07, 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.
Oh boy Melissa. I was really hoping for better news for you!! I can't believe that he can have Celiac's diagnosed at so young an age! Poor guy. My SIL has Celiac's ( she is the NICU nurse) so i'm familiar with celaic cooking and such if you need some help. i know that you have a great family support since you've spoken about others in your family with food-related allergies/issues.

Why would she skirt the EE/EOS issue? how could it be inconclusive? maybe cause he is mostly on elemental formula?

as far as gastrin, it is a hormone that produces HCI-the major component in stomach acid. If it is elevated he could have a disorder or a tumor causing that. i'm glad they are taking the bloodwork quickly. maybe they can give you those results much faster.

Did the GI give you any other plan of action? you need anything?
Jul 07, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
Oh Melissa, I am so sad to her this. I don't really know what to say, except that hopefully through these answers they will be able to find a way to ease his discomfort. Big hugs to you and Sebastian!
Jul 07, 2008
mommyto2
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
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I am so sorry. HUGS!!! I hope you get some more answers soon. Keep us posted. Thinking of you!
Jul 07, 2008
amber f
It sounds like you are getting some answers. I'm sorry that he is not sleeping well and still in so much pain. (((HUGS)))
Jul 07, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
I'm so sorry to hear this, but at least you will soon have answers as to how to treat him and keep him more comfortable. So frustrating that they were not more straight forward. Hopefully the bloodwork will be more conclusive. Hang in there. Keep us posted. HUGS.
Jul 07, 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 so sorry. Wow, that is frustrating about the EE issue not being addressed. hopefully once you get a definitive dx, you can get him on just what he needs and get everything straightened out. Praying for you guys! Hugs.
Jul 07, 2008
eswrede
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
Hugs and more Hugs! I am glad to hear that you have some answers although it doesn't sound like what you wanted to hear. Please let us know when you have any news. You guys are in our thoughts. Libby
Jul 07, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
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Oh my goodness!!! That is so much!!! How do they plan on treating it!!! I'm so sorry that you lil man has so many issues with his GI system. I hope that they can give you some insight as to what to do about it all. -Sarah
Jul 08, 2008
mommy2628
Sending prayers and hugs your way. I hope you get some answers and soon.
Check with your
doctor first!