Posted By Posting
Nov 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
Questioning my decision, HELP!
Cooper is doing surprisingly well off of the prevacid. He is actually doing better than he was 2 weeks ago when we just cut the dose in half. While I am very thankful for this, it does have me questioning my decision to have the egd and probe done. I am a huge believer in the power of prayer and know that there are lots of people praying for us this week. I fully believe that that is why it has gone so smoothly. I mean, he is by no means 100% himself, but the screaming has been fairly small and his sleep hasn't been too disrupted. And thank God, I have yet to see any apnea/stop breathing spells. His stridor is really bad though and he is coughing/choking more. He is also still not eating as well and is only eating his short list of 5 or so foods. I just feel like I might be doing the wrong thing by putting him through all the invasive tests. Of course we want everything to turn out well, but I'm afraid I will be blaming myself for submitting him to anesthesia yet again before he is even a year old. KWIM??? Please don't get me wrong, I am so so thankful it is going well, but I can't help but wonder, "am I making the right decision, am I doing what is best?" I am really needing some support here. I am feeling like maybe I should cancel the whole thing. But on the other hand, he is still an almost one year old eating basically rice and peas! What do I do.!?!? I know we need to check for damage and EGID and judge the reflux he is having now. But right now I am wondering, is he really having that much. Or maybe he is just so used to it, he doesn't respond the same any more. I don't know what to do! HELP!!! Thanks guys.
Nov 15, 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.
you know how quickly reflux can rear its ugly head even in the best of situations, if i were you i would do it. ( but that's just me) i honestly don't think the GI would have offered it if he didn't see some reason for it. then again, you are the mommy and you must trust your instincts. a month or so ago i really thought emily was doing so well and her reflux was well controlled by her meds, but i was wrong, her behaviors proved otherwise. now she has gotten a bit more expressive i see it really hasn't gone away. but back to cooper, if you feel he has really turned a corner and he is doing well off meds (which congrats btw i hope it continues!! :) :) ) you can put off the test for now. EDG is not a once in a life time opportunity and if he gets worse the test will always be there. god forbid he does get worse, but enjoy him happy and off meds while he is doing so well now!
Nov 15, 2008
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 a tough call and I know how you feel.

IMHO I think you should stay the course.

A couple weeks before Katie's scope my husband was trying to talk me out of it because she had been doing so well. The mom's on the board urged me to keep the appt. and I am glad I did. We discovered that she had gastritis in her stomach and damage in her esophagus. With all the knowledge we gained from the test we were able to adjust her meds and it also gave me peace of mind that we knew what was going on.

Reflux is such a roller coaster and the mom's on the board reminded me how sorry I would be if she had a flare up and I missed the opportunity for testing.

Good luck!

Nov 15, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
My husband and I were not in agreement on whether to keep the scope for Meggy or not. We were also questioning our decision. We mutually agreed to give her till Mid. December on Ultracare for kids and the scope is rescheduled.

Just follow those Mommie instincts. Do whatever is best for your little one.

Nov 15, 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
Hey there! Those of us who have had the scope done have also questioned whether we should, in fact, do it at all. For me, I made the decision to proceed because I had to know if a damaged GI system was causing her feeding difficulties. In your situation, he has a really bad stridor and a frequent cough, which would indicate that reflux is still an issue for him. You have to consider what the next year will be like "not knowing", because the "not knowing" can eat away at you. At the same time, it is very very scary knowing that you have made the decision to put your child under anasthesia. The choice is yours alone, and it is not an easy one. If you've been having concern enough to have the scope scheduled in the first place, do not be fooled by his doing okay off of prevacid. Prevacid has side effects that can be pretty uncomfortable too. If this is the sole basis for your second thoughts, just be cognizant of the fact that these kids are total stinkers!!! They like to play tricks with your mind. I'm not telling you to do it. It could be that he WILL do better off of prevacid. Heavens, I'll be the first to say that taking Rory off of prevacid was the best decision we have made in a while. She eats like a horse now. What I'm trying to say is that I don't want you to have regrets if you don't go through with it, because it is so difficult not knowing if reflux is taking a physical toll. I know your decision will be the best for you and your family, and I wish you the best of luck!!!! I totally didn't make any sense, I'm sure. Rory is climbing all over me, and I can't keep my thoughts straight!
Nov 15, 2008
nicholasmom
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
It's never easy to make these decisions, especially when the little ones are so young and have been through so much. I tend to think I would go ahead with the testing if I was you. I do tend to believe that these reflux babies end up with a high tolerance for pain and discomfort and can have a lot of underlying stuff going on without all the outward signs. If it was me, I'd always wonder what was really going on inside. Pray on it and go with your instincts.
Nov 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
Hi! Glad to hear he is doing well off meds. Just remember that meds can take some time to get out of the system, and that he may not be demonstrating yet how he will truly be feeling off of meds. Also, make sure you are weighing the options too of NOT doing the test...are you going to be wondering over the next several months if there is damage? You can always reschedule but it might just be easier to do it now when it is all scheduled and he has already done his stint off meds to prepare for it. When we took ELyse off her meds to prep for her pH probe I almost canceled the whole thing bc she was doing so terribly off of meds...it might be nice to do his test now while he is feeling okay off meds instead of possibly doing it later on and having a bad experience off meds! For me, I needed to know what was going on in there...like rory, ELyse was having some bad feeding issues and i had to know if it was related. Also she had spit up blood a couple times.
Nov 15, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
i dont know what it all entails.... but I would do it too. I would also be a tetter tautter (spelling) about the tests... but if he is not eating as he should be something may be wrong
Nov 15, 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!
JMO-I would only cancel if he isn't having any issues at all. Since it seems that he is still having a little trouble, I'd stick with the plan. I know it's hard to put them through stuff, but I think it's best. Hugs!
Nov 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
Thanks ladies. Shortly after I posted this, it was confirmed that we are doing the right thing. We had a rough lunch where he kept eating the same little piece of chicken. He would chew it, sort of swallow it, spit it up and then do it all over again. He didn't get anything much down. He isn't even nursing all that much. Then he screamed during a diaper change, then stopped breathing briefly and then the "GULP". We need to do this. And I completely know what to expect. He has had the bronchoscopy and the pH probe before, so I am prepared. It was just one of those moments. Thanks so much for the support.
Nov 15, 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
(((HUGS)))) sorry you started to see some reflux. BTW Jedd was GREAT off of his meds for the time he had to come off of them for his Impendacne. BUT his probe resluts showed enough acidic reflux episodes to go back on full meds.

the body stores the meds int ehliver so it can take up to 3-6 weeks to see the full effect of having NO meds in teh system.

Nov 18, 2008
annegirl1919
sharlin, mom to aviah, smith and faye (4/08)-dx with acid reflux (mostly silent) at 6 months.
Looking back I suspect she's been dealing with this for most of her little life. She's tried about every formula in the book and is currently on liquid alimentum, which has really helped a lot with her fighting feedings. We also tried zantac, but she became MUCH worse, and so we've been trying to work on helping her through her diet. she's also taking probiotics, and i'm hoping to get her eating some solids more regularly.
i haven't read all these posts, and don't consider myself a real experienced person since i've only realized what i've been dealing with for a month and a half with my little one, but i sort of think that if i were you, i would hold off on the tests. if he seems to be doing better, i'd wait to do them until it was obvious that things were heading south again. i've heard many times that most babies outgrow acid reflux by a year (although this forum makes me worry) :) :( but maybe he really is going to be doing better. i think i'd just watch and monitor, and if things get bad again, think about the tests then. but that's just my two cents.
Nov 18, 2008
annegirl1919
sharlin, mom to aviah, smith and faye (4/08)-dx with acid reflux (mostly silent) at 6 months.
Looking back I suspect she's been dealing with this for most of her little life. She's tried about every formula in the book and is currently on liquid alimentum, which has really helped a lot with her fighting feedings. We also tried zantac, but she became MUCH worse, and so we've been trying to work on helping her through her diet. she's also taking probiotics, and i'm hoping to get her eating some solids more regularly.
sorry, i totally should have read these response before posting mine, because i didn't realize that taking him off the meds was just for the test, not because he had gotten to that point on his own. and also, i obviously missed your update. sorry. :(
Check with your
doctor first!