Posted By Posting
Jul 14, 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.... :(
Finally talked to Sebastian's GI nurse after getting tough on my messages! And the news ain't good
Well, I finally got a cal back from the GI nurse. I left an assertive message this morning requesting med changes, a full explanation of his endoscopy/flex sig results, etc. She finally called me back today and said that Sebastian has FOUR - NOT ONE LIKE THE GI IN THE ER TOLD ME LAST WEEK - EOSINOPHILS IN HIS ESOPHAGUS.This is bad for our "No, it is not EE" diagnosis. Anything more than 10 or so is usually EE, and around three our four can be severe reflux. However, what concerns me is that 1)Sebastian wasn't eating anything he was allergic to, so there wouldn't be a ton of eosinophils even if he had EE and 2) he is on a high dose of Prevacid.

The doc also said he has an elevated number of lymphocytes in his blood and GI tract, which made them think celiacs (we are waiting for the last of three antibodies tests - the first two are negative, but it is the third one that really matters because the other two are often false negatives). There are lymphocyte sin the duodenum, too. But there is also a strong possibility they could be from 1) EE and 2) non-iGe allergies. I think it is the allergies. There is also the inflammation of the stomach and intestines that I already knew about.

We had originally made an appt for JANUARY 2009 with Dr. Wood (that famous allergist guy), but my beloved allergist called and got us an appointment for Tuedsay, July 22!

Today, Sebastian had diarrhea and stomach cramps...he has been super gassy for a few days now (you might have read about this on my "explosive gas" post. He is now off all foods (except for Neocate) per the GI's request. I am picking up the PRevacid suspension tomorrow since he won't be able to have his capsules anymore. My poor little man.

Thanks for reading! Pray that we get some REAL answers for once next week from Dr. Wood!
Jul 14, 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.
Are you also on the other site kidswithfoodallergies.org? I ask because I see more kids there with these types of problems (some with reflux too)? I also see a lot about Dr. Wood there & quite a few kids who are taking ONLY Neocate. Eric will be undergoing all these tests, too, come Aug. or Sept. I fear the ee as well. I just can't fathom that I had a kid with all these damn allergies. I wonder if it will ever "truly" sink in (I guess I'm in denial for my sanity), but I am soooooooo careful about what he is fed. Anyway, thinking of you. Ellen
Jul 14, 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!
I am so glad that you got in next Tuesday! Tomorrow would be better, but next week is pretty darn good! I can only imagine the level of frustration you are feeling right now with all of this. We should not have to FIGHT with medical professionals to get the best care for our babies, but let me tell you are doing an excellent job advocating for Sebastian! I am so sorry that the news wasn't good, but hopefully with his diet restrictions he can get back on track. As always, I am thinking about you guys!
Jul 14, 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
Photobucket
Oh my goodness! that is so much! That is way way awesome that you were able to get bumped up with Dr. Wood ssssoooooo fast!!! Way to go!!! I really hope that he can provide you with some answers and at least a good treatment plan. It sounds like Q. I feel like everytime I try to introduce something aside from her formula, we are dealing with blood stools, bloody tummy residuals, gas, diarrhea and undigested poop. UGH!!!! I'm SO getting a new GI doctor! I hope things start improving soon. Poor lil booger has been through so much lately. -Sarah
Jul 14, 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
GOOD NEWS that you got bumped up. That is wonderful. I hoep that goes extremely wel for you and gives you many answers!!! Poor Sebastian....I hope this leads to great and wonderful things in the future.
Jul 14, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
although emi did not have eosinophils (and to tell you the truth i am really not sure what they are) her endoscopy showed mild/moderate inflammation in her stomach esophagus and intestines. She was put on a strict Nutramigen only diet for almost 4 months. We could have gone longer but i choose to start her on solid foods again at 11 months. After that formula only diet, introducing food went much better. We are still not 100% but food no longer leads to the hours or screaming, discomfort, no sleep and cramping anymore.

It was my understanding that a EDG biopsy for celiacs was THE test to tell if celaics was present. I was told by a few people and also have read that blood was not reliable. is that true? Celiacs was the orignial reason Emi had her EDG but she was negative for celiacs.
good luck with the suspension and i hope things go well with dr wood :)
Jul 14, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
Jul 14, 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
Oh I hope you get some more information soon! I am so glad to hear that you will be able to get in to see Dr. Wood sooner. Will be thinking of both of you - Libby
Jul 15, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Photobucket
So glad you got bumped up for that big appt. I am rooting for Bassy over here in CA and it sounds like everything will be figured out SOON. That at least is good news!
Jul 15, 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 he is having such trouble. That is just awful for you all. So frustrating that you were told incorrectly about the one eos. I am so glad you got bumped up. Hoping for answers for you guys soon. Hugs!!
Jul 15, 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.... :(
Thank you, everyone. Bassy and I appreciate you thinking of us!
Jul 15, 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
Darn, this was not what I was hoping to hear. I'm glad that you'll be able to see Dr. Wood next week - hopefully you'll be able to put together a game plan then. Keeping both of you in my prayers.
Jul 15, 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 man! i dont know what to say. i guess my theory was a dumb one, huh. how could he have this much damage at his young age-esp. sinces he's had so few solids and exposure to foods other than neocate?

i'm so glad you got in on the 22nd. that is AMAZING!! I bet you can't wait for that appt! its the day b4 my bday.

he's so lucky to have you. i'm sorry you've had to push and push for answers but maybe this guy will FINALLY be able to give you some good information.
Check with your
doctor first!