Posted By Posting
Mar 05, 2011
hannah
Doctor wants to stop meds - help!
Hello, My daughter Ella is 18 months old and has had severe reflux (GERD) since she was a couple of weeks old. She is now on Prevacid according to the Marci kids dosing and it is working great. However, the specialist we are seeing for her reflux said that we will have to cut down or stop giving her the medicine soon so that she is not on it for too long. Has anyone else heard this from their doctor? And for those of you who have older children with reflux, how long have you been giving your child medicine and what kind? Has anyone tried any alternative medicine/holistic approach to treat reflux (When I was only breastfeeding her I did the elimination diet, she is not having any wheat or dairy or any other food that is supposed to make reflux worse, and I am giving her probiotics)? Any tips on how to keep a toddler comfortable with less or without medicine? The last time I tried to cut down on her medicine she was clearly in a lot of pain and the only way she would sleep was in my arms, holding her upright. I am really scared of how things will be if/when we have to stop the medicine! Any advice would be greatly appreciated! Thanks! Hannah
Mar 06, 2011
ljoy_22
Sorry to hear you're having to go through that! I know what it is like to have a less than supportive dr. We've switched a few times because of that. Unfortunately, I don't have any helpful info since we are just figuring things out ourselves, but I feel for you!
Mar 06, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
The doc cant make you stop the meds. Can only advise. If you do not think she is ready yet... wait. Or try a smaller dose and she how she does. I wouldnt stop cold turkey anyway. We have been on the wean down for awhile.
Mar 07, 2011
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
I agree with Karen. I would give concerte examples of the improvement and I'm always game to wean down if there's been a honeymoon period, but if she flares, then back up you go. Don't ever feel like they know better than you...truthfully they usually do not, they are flying blind while you live with your daughter every day. No,t aht said, Zacky was on Prevacid every day of his life from 4 months on and he's now 3.5 (we've since switched to Zegerid, but it's the same basic med)...he has no side effects of the med, his teeth are great and it's been a lifesaver.
Mar 07, 2011
jeddsmommy
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
Unfortunatly if the GI wants to stop, they really can MAKE you stop. They will just refuse to write the script for them. Then you have NO choice.

You can, however, go around the GI and ask the Ped for meds. I've done this in the past when needed. Our first GI was awful. She was more than happy to help out.

Jedd has been on GERD meds since he was about 12 weeks old or so. He is now 4.5 years old. He started out on Zantac and pretty quickly went to Prilosec. Was on that for a long time. He had been on Axid now for about 18 months.

At his next appt. we are thinking about asking for a trial of Prevacaid as we think his Axid is not working. We can hear him refluxing and he is saying he's in pain.

Unless you are really attached to your GI, I'd ask for a 2nd opinion. Yes, some kids can grow out of GERD bu tnot all children do. GIs should know this and work with you to ensure you child's best interest is at heart.

Mar 08, 2011
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
However, most PPIs are over the counter now and more if on there way. So you do have options as a parent.

Don't get me wrong, I am not advocating going rouge or anything.. more just saying that the parent is the one in charge... The doctor should be there for consultative and educated advice.

As a parent we are with our kids every day... We know how they are felling, what's working and what's not working. Finding a doc that will listen to you, take time to explain things and will treat you like a valued partner in your childs medical decisions is critical. You can ask 5 docs the same question and you will likely get 5 slightly different answers so finding a doc that you can partner with is key.

Mar 08, 2011
shelefisher
Michelle
Noah 6 years
Paige almost 4 (GERD graduate!)
Soren 11 weeks - (GERD, Soy and Dairy sensitive) 15mg prevacid + 2mg zantac
We were able to wean Paige from Prevacid when she was around 2 but we did it very gradually and the GI was supportive of us going back up if necessary. If your daughter is in a lot of pain by cutting down the dose then the GI should be supportive of her remaining on it. Our GI recommended cutting her pill (at that point she was on 1 15 mg solutab/day) to 3/4's (tricky and I just tossed the 1/4) obviously this wasn't an exact science. After 3 weeks on that we went to 1/2 for about a month til I felt she was at a steady state then our GI had us try 1/2 tab every other day for several weeks then every 3rd day etc.... til she was off. I would talk to your daughter's pediatrican if the specialist isn't responding.
Mar 08, 2011
jeddsmommy
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
I would only be leery of doing it with an over the counter med because unless you are weighing it and measuring it very carefully, you can dose wrong and I would not want to over dose. KWIM?

it would jsut make me really nervous. More often then not I think a sensible Ped would go ahead and dose the med for you.

The OTC (over the counter) stuff is designed to be used by adults so I would proceed carefully.

Mar 09, 2011
joy
Dd (7) w/ SPD (sensory processing disorder), hypotonia, GERD, since birth. Previous PT, OT, Early Intervention, special ed, feeding clinic, feeding therapy from 2-3. Reflux meds since 2. Overcame severe feeding challenges, dysphagia, oral aversions, anxiety disorder. Weaned from reflux meds @ 6 1/2 yrs. A true miracle!! Ds (4) Prevacid 30mg, split am/pm; upcoming endoscopy. Ds (9 mos.), nursing, pureed foods, Zantac 1.2 mL 2x/day.
Why does Dr think she shouldn't be on it for too long? I've experienced some pressure too, over the years, for weaning off drugs but reality is, if they need it...they need it. My dtr took Prevacid (among other things) from 2-6 1/2. DS has been on Prevacid since 1 (Zantac prior to that), now he's 4 1/2, and we just recently took him back up to his full dose again.
Check with your
doctor first!