Posted By Posting
May 07, 2002
Carla (drchastiti@hotmail.com)
Need advice!!
My daughter is 2.5 and weighs about 12kg. She has moderate-severe GERD. We've avoided surgery because she's growing well, but she takes Zatac (4cc po bid) and Reglan (2cc po qid). She doesn't properly vomit anymore (not even with a tummy bug); she swallows it back down when it comes up into her mouth. Gross, I know. I guess eventually it gets digested, but she's constantly uncomfortable. To make it worse we have every mitigating factor and annoying complication: CP, asthma/BPD with occasional aspiration pnuemonia, chronic ear infections, dysphagia, scoliosis, and now dental erosion from the GERD. Thanks to the dentist kicking up a storm, I'm finally being taken seriously, and the reflux is getting more agressive treatment. Possibly a fundolipication depending on the results of the endoscopy. First, I'm worried about side effects from the meds. She's been on the max dose for her weight of reglan since before she started to po feed at 7 weeks. She's been on the maximum dose of zantac since she was 4 months. The doctors say "well, it's better than the reflux"... but, I've heard some awful things about reglan. Second, naturally, I'm very nervous about the surgery, and would like to hear from other parents who went through it. Third, it's just kind of nice to read about other parents are dealing with Puke-o-rama or something similar. Thanks!! Carla
May 07, 2002
Susan McLane
for Carla
Hi, Carla. I'm sorry your daughter is having such a rough time. If you read the PAGER boards much, you'll find I'm a broken record on this topic. You are right to be concerned about the Reglan. My triplets all took Reglan for their first year solid, and my daughters ended up with Parkinson's-type head and head tremors. We stopped the Reglan, and thankfully, the tremors stopped. One of my daughters was diagnosed with some serious neurological problems just this past December and had to undergo major neurosurgery in February. The results are yet to be determined. I also never thought Reglan helped any of my kids with their reflux. As for Zantac, I believe it's relatively safe. My kids took this also, one of my daughters long-term and in high doses - the alcohol content concerned me (7.5%), but all her hepatic panels came back normal. We switched to Tagamet (lower alcohol content - around 2%, I believe) last fall, and it has worked just as well, if not better than the Zantac. Hope this helps. Susan Mom to Bryan, Bonnie and Shannon, 28 week triplets, now 3.5 years old
May 08, 2002
Don Bates
Need Advice -- re: Fundoplication
Carla, I'm so sorry to hear about the difficulties with your daughter. Our 16 month-old son had a fundoplication, at a very early age (7 weeks old). We feel it saved his life. There are pros and cons, however. He never really learned to eat well, and we relied on his g-tube to feed him. If your daughter already eats, then this may not be a problem. It fixed his reflux problem, though. He cannot vomit or burp, even is he wanted to. As an aside, we recently found out that needs more surgery. It seems he "popped some stitches", so he now refluxes some and now has a hiatal hernia. Hopefully we can get this fixed soon. If you have more questions, feel free to email me (Don.Bates@verizon.net) or my wife Marianne (pawprints.mrb@verizon.net). Since she's home with him all day, she can probably give you better information. v/r Don Bates
May 13, 2002
Jan Gambino Burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Arnold, Maryland
21012 USA
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
http://www.lulu.com/content/4999931
Blog: www.healthcentral.com/acid-reflux/c/96
More advice!
Carla, My daughter had the reflux/asthma/dental erosion problems too. I found that the proton pump inhibitors-Prevacid, Prilosec helped the most and even calmed the coughing/wheezing too. My daughter went through a stage where she coughed and vomited every morning. It took a while to find the right balance of asthma meds and GI meds to settle her. I know you are already worried about the meds. The asthma meds are just as scary as the GI meds. Some days I had to make a chart to remember all of the doses and times. She eventually had a nissan which helped the reflux greatly and even calmed the asthma quite a bit. She still needs meds for both but at smaller doses. She only uses steroids for asthma as needed instead of every day. By the way, Rebecca had 6-7 cavities in the year prior to her nissan. She has healthy teeth now-a huge relief to us all! Give your daughters dentist a big pat on the back for recognizing the dental problems caused by reflux. My dentist hasn't fully embraced the connection between reflux and dental problems yet. Jan
Jun 14, 2002
CHERYL DIAZ
REFLUX AND NISSEN FUNDOPLICATION
MY SON, LUCIANO, HAS HAD REFLUX SINCE BIRTH AND IS NOW LOOKING AT A FIFTH OPERATION[HAS HAD FOUR NISSENS ALREADY]. HE WILL BE THREE IN OCTOBER AND I WOULD REALLY LIKE TO HEAR FROM SOMEONE WHO HAS BEEN THROUGH A SIMILAR SITUATION. THE DOCTORS SAY HE WILL HAVE PROBLEMS THE REST OF HIS LIFE AND I'M AT A LOSS FOR WHAT TO DO. HE HAS A G-TUBE TO BURP HIM BUT EATS BY MOUTH,HAS HAD A PYLOROPLASTY FOR DELAYED GASTRIC EMPTYING,HAS HAD TWO HERNIA REPAIRS, AND HAD A MECKELS DIVERTICULUM THAT WAS READY TO RUPTURE. IF ANYONE CAN GIVE SOME ADVICE MY SON AND I WOULD GREATLY APPRECIATE IT.
Jun 14, 2002
Anonymous
Cheryl, Please read my son's story further down the page called Spencer's story & feel free to e-mail me at sknmom@aol.com Patti
Jun 15, 2002
Patti
Cheryl I've been in your shoes
Please read Spencer's story which is a few posts below. Feel free to e-mail me at sknmom@aol.com Patti
Jul 02, 2002
Melyssa
My experience with a fundiplication
I have a 5 1/2 month old son who was on all of the same meds as your child is. After a lot of hard research and internal searching, I chose to go with a nissen fundiplication. Not long after my heart renching decision, my son underwent a nuclear med study, and the surgeons said the surgery was no longer an option. My sons GERD was so bad they thought he would die from not being able to breathe with all of the fluids coming up from his stomach. At first, the fundiplication seemed like it did not work. My son is still on Reglan and Pepsid (Pepsid worked a lot better than Zantac on him). But a few weeks later it seemed like a miracle. I could lay him flat and he didn't need to sleep in a car seat anymore! He had severe erosions in his esophagus from all of the acid in his throat which cleared up within 30 days of treating it with Mylanta. Now, for the tough part. This procedure made it so my son could not burp or vomit. That is extremely painful too. Fortunately my sons GI specialist requested a G-tube be placed in his stomach so he could burp and vomit through it. Thank the good Lord for that! It would be sheer agony without it! I would talk seriously about it with your child's GI doctor. All in all I think it was a wonderful thing. I had Reflux during my pregnancy and it felt like someone was puting cigarettes out in my throat. I was desperate to do anything to save my son from that pain. This was his wonder cure. If anyone has any questions regaurding my experience please feel free to write me. -Melyssa monkeymama@foothill.net
Check with your
doctor first!