Posted By Posting
Jul 15, 2008
grammy b
Bethann D
My grandson Jack
Hello everyone I am new to this site and hope some of you may help me. My grandson Jack was dxed with reflux and reflux related apnea and 6 weeks old. He has been gaining weight great. He has had an episode where he completely stopped breathing and was life flighted to a pediatric intensive care hospital where he spent four days and that is when he was diagnosed. He was sent home on an apnea monitor which since has been stopped. He weighted 11.4 pounds when discharged from the hospital on June 26th. He weighs 12.2 pounds now and on July 12th we had to take hin back to the er when he had an episode of choking and trouble catching his breathe. We have never dealt with anything like this and my daughter and her husband are young and this is a very scaring thing. He is on baby zantec 1.5ml twice a day and he is on soy based formula. If anyone has any advice please feel free we want to learn everything we can and all help is welcome. Thank you all for your time.
Jul 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
Here are your first lines of defense against reflux.

1. elevate the head of the bed. Gravity will help keep the reflux down.

2. thicken feeds so that the food will be heavier and stay put. You can thicken with cereal. Keep in mind tha tthickening will cause the belly tp empty slower, so be careful He may not eat as much this way.

3. If he still seems like he is in pain form the reflux I would switch dripgs to a PPI. They are stronger. A PPI would be like Prevacaid or Prilosec.

You may want to suggest doing a swallow study to see which way he may/could be aspirationg from. By aspirating I mean that the reflux is either coming up and into the lungs OR it is going down and into the lungs.

A video swallow study will show which one is causeing the blue spells and apnea needs.

You can also do an UGI (upper GI). This will show if the hcild's anatomical parts "grew" properly. That will ensure that the esophagus is A-OKAY. Some kids have "holes" in their esophagus and that causes the blue spells. Not too common but a ped. GI normally does this test first to rule that out.

The UGI can also tell if he had Pyloric Stenosis. Another thing they like to look for first.

Let us know if you ahve any other ??? Jessica
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
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My baby did the EXACT same breathing thing. She would gag, choke, and then do this scary gasping for air thing. She was admitted too for it. When we finally got a nurse in there when she was doing it, is when they started really taking it seriously. She had other major issues going on, but after we came home she was still doing after they thought they "fixed" her. What finally helped us is finding the right medication. Jack, in my opinion, should be on a PPI. I beleive that Prevacid (solutabs) saved my dd's life. Please ask for a stronger medication. Peditricians don't like to prescribe it, but a GI doctor will if you can't get the pedi to at least try it. Tons of the kids here are on a PPI. We weaned off ours in February, but she is still on Zantac, which is very mild compared. Our GI said Zantac is a 30% reflux controller and Prevacid is a 90% controller. She still threw up tons on prevacid, but she had ZERO ALTEs after starting prevacid.
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
Hi and welcome. Wish you didn't have to be here, but I think you'll find a lot of good information and support from the PAGER parents.

Jessica gave you a lot of great advice. I'm concerned with aspiration as well - if he hasn't had the swallow study done, you probably want to get him in as soon as you can. Protecting his lungs is very important.

I also agree with the pp that if the Zantac doesn't seem to be helping, a PPI like Prevacid or Prilosec may ease the pain. If he does stay on Zantac, keep in mind that it is very weight sensitive, so his dosages will need to be increased as his weight increases.

I'm not sure if you're doing this already, but try to keep him upright after feedings for at least 30 minutes (not an easy feat at 2 am, I know).

One last thing - a lot of refluxers seem to have problems with the soy formula. If you start seeing mucousy bowel movements, you may want to consider moving to an easily digestible formula like Nutramigen or Alimentum.

Feel free to post any other questions you have - we're glad to help.

Jul 15, 2008
stickybean
hi gammy! Our daughter has the same thing your grandson has. She stopped breathing at 3 days old and turned blue twice. She was rushed to Scottish Rite (Children's Health care of Atlanta) for 4 days. They did every test there was... honest. They did a barium swallow last and that is when we saw the reflux. She was dxed with silent reflux and apnea. She is on the apnea monitor as well. She is gaining weight as well. She lost about a lb after birth (while at Scottish Rite). But since then she has been gaining well. She was 7.6 lbs at birth went down to 6.7 at scottish rite... at her last check up (June 24) she was 9.15 lbs. The next day at her GI specialist she was 10.2 lbs (just after a feeding though) She is breast feed. Joslyn's apnea was her aspirating int her lungs on the way down. I feed her with her like she is standing up. we are belly to belly during her feedings. We keep her elevated for 30 mins following a feeding. We burp her after each side (or after every 1/2 oz- 2 oz if by bottle) She is slightly elevated at night (luckily she has no porblems sleeping.. she has been sleeping through he night since she was a week old.) Our GI doc said to use Maalox if she is having a reflux episode during a feeding. We had to use it once so far and it really works immediately. We have been on here for only a short time... but the parents on here are so great!!!!! They truly know how horrible and scary reflux is! Please send hugs to your daughter, son in law, and grand baby. My husband and I are in our mid 20's........I think no matter how old you are it is a scary thing to go through and watch your baby stop breathing...... or have issues with reflux. Hope this helps.... If not let us know! Jacky
Jul 15, 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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Um wow! You are walking in my shoes!!!! WE had to do the exact same thing with my daughter, Quinn. When she was three weeks old, she choked and stopped breathing, turned blue and we called the ambulance. She had pneumonia. she was sent to a small hospital for a week to be treated for pneumonia and on the seventh day choked again, turned blue, went limp and then was transferred to the NICU for heart complications for an additional week. we were sent home on the apnea monitor and a diagnosis of reflux. It got better for us as far as her choking so much and turning blue. But eventually we had to get the fundo operation. On the other hand, that is for severe cases that they don't particularly outgrow. Everybody gave you some great advise, I just wanted to let you know that you are not alone on this and we can definitely relate to the worry about this! Welcome! We are here for you. for questions, advise or just to lend some support as we all know how trying GERD is for us and our kiddos. -Sarah
Jul 15, 2008
lanymama
Mom to Eddie 1/07 and Nicholas 6/08. Eddie allergic and refluxer now on cow's milk!!!! Nicholas also a refluxer on prevacid and breast milk. Mom on elimination diet AGAIN!!
I hope I am not repeating what others wrote, but some things that helped my first were the dosing of the meds, when he was on an H2 blocker the GI switched him to 3X a day instead of 2 infants metabolize drugs faster this helped, also the timing of the dosing made a difference I also kept a journal I would write everything this helped me play detective as to what triggered it I the reflux flare ups. And last, the GI let him use Mylanta, it helped us tons with the breakthrough reflux. A great site with info is marci-kids.com Hope you ind some relief soon. Oh and I forgot what my new lO is doing is sleeping in the carseat or glider, the glider is great it keeps him upright and he is happy.
Jul 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!
I really don't have much advice to add. The pps have covered it! How long has he been on zantac? If his symptoms are still persisting, I'd def. look into tests and a ppi med. Are y'all seeing a pedi GI dr or just a pediatrician? Sometimes a pedi GI specialist is needed.

Elevating the crib and keeping Maggie upright most of the time were the biggest lifesavers for us. If they think the soy based formula is causing trouble, you might try alimentum or nutrimigen(sp?).

Jul 15, 2008
grammy b
Bethann D
My Grandson Jack
Hello, and thank you all for your responses. Some more info. He has had the UGI done and seen a GI Specialist today who said to keep doing what we are doing. Which is elevating him, and keeping him upright after he eats and so on. His Zantac has already been increased once and will most likely will be again, my next question would be how much of the Zantac is too much before we should see about a different medicine?
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
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I can't remember how long ELyse was on Zantac before we switched, but she has been on reglan, pepcid, prevacid, nexium, carafate, zegerid....I think that's all the reflux ones we've tried. It wasn't more than a few weeks before the pedi upped her to a higher class drug, and then the GI took over when she was still turning blue. Another note-my dd was NOT aspirating (thank God), the dr said that her gagging/blue episodes were actually protecting her airway, so it is certainly possible that his airway is being protected (as well as possible that it is not), just wanted to make sure someone who had the opposite experience threw that in. Elyse had all the tests done too, your grandson may end up having a pH probe or an endoscopy or both. oh yeah, and really look for those MSPI signs. My dd's reflux improved a little when we switched from breastmilk to an elemental formula (neocate or elecare, which are prescription formulas), and her willingness to eat improved a LOT (though we still struggle with that, and she is 13 months old).
Jul 15, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
Just sending more hugs. My son was on an apnea monitor until he was almost 3 years - b/c he would always stop breathing - pretty much every day whenever he was asleep. He saw a pulmonologist in addition to the Ped GI. He was on Zantac, then Prevacid, now Nexium. We switched meds when we found that this was not just "infant reflux" and he was not going to outgrow. :( But he should have been switched earlier - but this was years ago. He is a big guy now! 8 years, and still bad reflux.
Jul 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
Yep I'd switch meds then afte rreading the extra info you posted..I'd ask for PPI like I said earlier. don't be afraid to ask for a higher dose thne you are givin if you don't see any affects within a week. A PPI would be Privacaid or Prilosec.
Check with your
doctor first!