Posted By Posting
Nov 10, 2009
mommy2four
Silent Refluxer....I am new to this site
I have had 3 refluxers and just had a baby who is 6 weeks. She is on 1/4 of 15 mg prevacid solutab 2xday. Which I had to beg her ped for. 1/4 of 15mg just was not enough. She does not throw up which I have had one of those too but she is CONSTANTLY gasping, grunting, choking and coughing. She always has a stuffy nose. Last night after reading this website for 4 hours I was in tears bringing back the feelings and experience of my son who had severe reflux requiring a scope, FTT, food aversion. I was taking him to the dr. weekly and vowed I would never do that because I never got any real answers. He is now turning 4 in Dec. and just got off of 30 k/cal formula in April (HOORAH!!) Well I have this little one who is getting worse. My kids also have allergies which I think complicate reflux. I WISH I would have found this site when going through this with him. But we are here now with this little princess and she is struggling BIG time. After reading posts, I added mylanta during the night and it seemed to help. I BF and I know I produce an abundance of milk and have never been told that can make reflux worse which makes sense after reading comments. I tried today to do block feeding and I hope that will help. I am grasping at straws and hope that someone may have some recommendations or suggestions. Is there different problems with the silent refluxer vs. the baby that throws everything up. I do not see the weight being any better than my son because she is refusing to nurse at times. Which meds for the silent reluxer? My ped. wanted me to put her on Reglan but in my gut I do not feel good about it? I have an apt. at the end of the month with an allergist who I have taken my other kids too. I am suspecting a milk, egg and peanut allergy same as my other children. I read in a post that Prevacid solutabs have milk. I called the pharmacist today and sure enough there is lactose in there. She has real bad eczema which I know is linked to something I am eating (which I am cutting all possible allergens out) but I am wondering if it from her prevacid? I know when my sons allergies would flare it would make his reflux worse? Any ideas or suggestions for my little one? Any help would be greatly appreciated.
Nov 11, 2009
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Well, I am very sorry you are here but glad you found us!! Reflux is so hard but it helps to chat with other moms who have been there, done that.

Silent reflux is treated in the same way as reg acid reflux with puking. I found the food refusal to be so difficult. I would encourage you to push to find the right medicine to work. Sometimes it can take trying a few to find the right one for your child... I had two refluxers (out of my three children) and they each took different meds. LOL. Just to be difficult, right? ;)

I totally think allergies and reflux run together!! Our last newsletter has a lot of info on allergies. I don't think it is up yet on the site but I can forward it to you. My email is RackleyFive@cox.net if you want to e-mail me and then I can send it to ya! I would look into the elimination diet for breastfeeding. Dr Sears has a lot of info on it on his website. There are also several moms who have tried it on here so hopefully they can also chime in on that as well.

I also have found that sinus drainage alone (either from cold or from allergies) can make our girls' reflux flare up too.

I have talked with moms who have problems with the lactose in prevacid. Many DRs will tell you there isn't enough to cause problems but from the parents I have talked to.. they definitely say there is enough lactose in the solutab to bug their children. Have they talked about trying a different medicine? I mean, if the mylanta helps then it tends to make me think it is an acid problem that just needs to be gotten under control. KWIM? Maybe a different med would do the trick!?

Do you think there is a motility issue? I must say that we DID use reglan with our youngest refluxer and it was a lifesaver for her... she aspirated with out it. My oldest however was UNCONTROLLABLE on it. Out of her mind! I think if you are going to try it you need to discuss all of the potential side effects and have a "plan" for how long you will give it. In hindsight I believe my youngest was on it for way too long. We should have had a plan to wean her as soon as her aspiration issues were lessened.

There may be other meds for motility... maybe they could try something like the erythromycin first? My GI DR mentioned that they sometimes use bethanechol but it wasn't an option for my girls because they have asthma. I don't know much about it but it might be worth discussing with the dr as well.

Again, I am very sorry you are dealing with all of this. :( Just one more thought... were any of your kids ever checked for Eosinophillic Diseases? EE can be an allergic response that looks like hard to treat GERD.

Hope they find something to help ASAP!! Please let us know how she is doing when you get a chance.
Nov 11, 2009
mommy2four
Thanks JenRackley! It is nice to have someone to talk too. My son was checked for EE which they say he old had one and he needed more than that to be diagnosed. Frankly, I was so excited because after reading about EE I had a lot of sympathy for those that have that disease. How many of you are actually on the dose that Marci Kids website recommends for PPI? She is only on 7.5 mg/day and the website says up to 21 mg/day. I thought that was high but maybe that is why she is not having relief? I had to pull my peds. teeth out to get him to write it for 7.5 mg/day. How many times do people use mylanta a day and how much? I feel sorry for my son after reading this website knowing that I could have done so much more for him. Man, you just trust dr.s so much and think they know what is best. I ended up having a child in OT every week for the last 2 1/2 years because of the trauma assoc. That's over now but he is VERY small from not eating. Anyway, thanks for all your help!!!
Nov 11, 2009
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
Hi! Glad you found us but sad to see you are in the same boat with us.

Ryan is a silent refluxer too. What is really hard about the silent kind is that it burns going up and burns going down and a lot of it ends up in their sinuses (the stuffyness) and their ears (ear infections) Ryan too was a gasper, grunter, choker and cougher. Sounds like we have the same kiddos. I too fought my doc and as a result it went on too long and he developed an aversion to fluids. We are mostly thought it now but it was ugly ugly ugly. I think I still have PTSD. : )

First piece of advice... If you have the same doc that you had with your son, run for the hills and find a new one. NOTHING can make a bigger difference than finding a doc that partners with you, listens to you and is in the fight with you. I know I know it feels wierd to change peds but trust me on this one. Just do it.

Ryan was on 30mg a day of Prevacid. My GI refused to go this high for a long time but after the scope and upper GI he gave in. It was the deal I made with him prior to the scope. Every child is different though. Some need the high dose of Marci Kids and others do not do well with that high of a dose at all. Walk up those stairs slowly.

If you are dealing with DGE you might want to consider Zegrid or if your doc wont perscribe it then Caracream. The beauty of those products is that you dont have to worry about wether or not their stomaches are empty when you give them the meds like you do with PPIs alone. PPIs have to be given on a empty stomach... Good luck finding an emply stomache with DGE.

On your Mylanta question make sure it is the Aluminum free Mylanta Cherry Supreme. You dont want the aluminum in your daughter. Your pharmacist can give you the dosage. 1/2 a tsp is what I remember and no more than a couple times a day? It may get her pooping more so be aware. In my son's case that was a great thing. It help to speed up his digestion. Ask a pharmacist.

Again, my best advice is to find youself a new doc. Please do not put yourself in a position again that you are beating your head against the wall and feeling like you are fighting this fight alone. It is too stressful for that and you have 3 other children that need you too.

PS. I applaud your bravery... If Ryan had been born first... there wouldn't have been an Allyson. : )

Nov 11, 2009
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
One more thing... keep the mylanta at least 2 hours apart from the prevacid or it will deactivate the prevacid. Sorry if you knew that already.
Check with your
doctor first!