XP: Reflux mamas--eating/drinking issues? Acid erosion?

Boo0512

Hello all, I've only posted to this board a few times, I usually post on May 2013. I'm here because I'm looking for someone who has experience with this. My DD is almost 14 months and we've had tons of eating/drinking issues with her. She started refusing a bottle at 4 months and still isn't eating solids well. Over the last month or so we've seen a tiny amount of progress with a straw cup but at most she'll drink 1.5 ounces a day (toddler formula, won't take WCM or BM). We started DD on Zantac at 3 months and last month we switched to Prevacid but she is still having reflux symptoms and Prevacid is supposed to completely stop it.

I've tried offering more food and less boob and it really isn't furthering her progress. We've also left her for 9+ hours on several occasions with my MIL and she'll barely eat or drink anything so we finally went to a speech language pathologist. The SLP said she didn't see an oral-motor issues but it was very obvious that she had a major oral aversion. After discussing DD's health history, nursing and eating habits the SLP came to the conclusion that DD may have GI issues from severe reflux. She was concerned about esophageal erosion and spoke to our doctor to get us a referral for a GI specialist at Children's.

I guess the point of this post is to ask if any other reflux mamas have had feeding issues (minor or extreme) or if anyone has had experience with esophageal erosion. We couldn't get an apt until early August but our SLP did let us know that if they couldn't figure out what the issue was at the initial apt, they may want to put DD under general anesthesia so they can insert a camera and look at her throat and GI tract. Obviously I'm hoping and praying we don't have to do that.

TIA for any feedback!

ashiscute

I'm a bit confused so I'm sorry if I'm not being very helpful.  So your DD was on Zantac from 3 mos to 13 mos and has been on Prevacid for the last month?  Was she continuously having symptoms for those 10 mos?  Has she been gaining weight appropriately?  

My DS is 22 mos and has been on Prevacid since he was 4 mos.  He started on Zantac at 2 weeks and we did not see an improvement so we were referred to an ENT because he also had aryngomalacia.  She checked his throat and when the stronger doses of Zantac were not helping we were referred to GI.  That's when we started Prevacid.  Prevacid has been much better for DS and is delicious whereas the Zantac tasted like medicine and he hated taking it.  It did take awhile (at least a month or two) on Prevacid though because of all of the damage from the reflux.  We have tried twice to wean him from the medicine and his symptoms return full force.  So for now he stays on it. 

We did do an upper endoscopy (the camera thing) last November after the first weaning attempt and it really wasn't bad so if you think it will help diagnose your DD I'd say do it in a heartbeat.  I held DS as he went under and the entire procedure took 25 mins or so.  They didn't find anything with DS which is good because it means there is nothing seriously wrong and frustrating because his symptoms have not gone away.  Our GI also suggested having DS stay in hospital overnight while they attached a camera down his throat to measure the amount of refluxing but because DS was gaining weight consistently we opted not to do it.  I definitely do not regret the endoscopy though.  

DS has never had any feeding issues other than a diary intolerance.  However, limiting his dairy intake has never helped his symptoms.  Have you attempted this for your DD?  My DD however does oral input issues in that she craves extra oral input.  So she craves extra spicy food and hard food versus soft baby foods.  She was being treated for speech and was diagnosed that and we are able to get her help.  Have you been referred to a feeding specialist?  

I'm sorry I can't be more helpful but honestly I don't know why DS is still dealing with reflux or if it will ever improve.  I know that GI isn't concerned because his weight is fine and his other issues (tubes, diary intolerance) are also minor.  I wish I could tell you that you will get definite answers from GI but I don't know.  Hopefully the prevacid will help your DD and it's just seeming like it isn't because she has not fully recovered from the damage done on Zantac.  I'm not sure why she was on Zantac so long if it wasn't helping or why your pedi didn't refer you to GI sooner.  Good luck

Boo0512

Thanks for the thoughtful response. Basically, the Zantac seemed to eliminate her pain but I know she is still having reflux because I can hear it, she coughs out of nowhere and her eyes water, has frequent hiccups etc.

I'm not sure why our pedi didn't do something sooner. For months we just kept increasing her dose. I requested the change to Prevacid because of her eating and drinking issues.

I've tried every type of food I can think of. Every once in awhile she'll eat what I'd consider to be almost a "normal" amount of food but 95% of the time she refuses all food or just chews it up and then spits it out. Luckily she is a healthy weight. She is nursing 3-4 times during the day and about 4 time at night (which really sucks).

I agree that further analysis is what's best for her if the GI thinks its necessary. I just wondered I these extreme eating and drinking problems were more prevalent than I realized.

It's so difficult because I am worried about her being in pain, for months and months neither of us has been getting more than 3 hours of sleep at once, it just sucks all around.

Boo0512

@ChickenOnSunday‌ I'm sorry you're going through this too. I can't imagine how stressful the weight issue must be. That's one thing we've been really lucky with.

Do you feel like Prevacid or Nexium is/was helping at all?

What were the results of the swallow study and endoscopy?

Are there any foods that your LO has taken a consistent liking to?

Thanks for responding!

ashiscute

DS orginially was given a solutab for Prevacid but the GI switched it to a liquid medicine.  The liquid medicine made all of the difference for us.  Zantac is supposed to remove the acid from reflux but does not relieve the actual symptoms.  Prevacid is supposed to stop them from refluxing but it can take awhile for the pain to go away caused from previous reflux.  She also may be struggling with food because of the anticipation of pain.  

I would push for food therapy if you can.  I think it's very common for LOs with severe reflux to have feeding issues since they have definitely made the connection that eating = pain.  We are very lucky that DS was having success on Prevacid before we transitioned to real food.  Try to do soft foods like fruit, cheese, and bread where chewing is minimal to see if it will increase her chances of swallowing.  

I understand where you are.  DS's first year was very tough for me because I was afraid to let him cry because I always assumed he was in pain.  At 14 mos he was still waking 1- 2 times per night to nurse.  I did wean him successfully before 15 mos and it had no effects on his reflux.  I hope GI is helpful for you

Boo0512

Once we transitioned to the solutab, she started to refuse all liquid meds. Ugh.

I do plan to incorporate food therapy no matter what the outcome is with the GI analysis.

Thank you both for the responses!