Bottle Refusal, Worsening Reflux, Tired Mom

[Anonymous]

My daughter was born at 23 weeks. She is now 9 months, about 6 months adjusted. Our story is long and winding, but I will try to select the parts I think are pertinent to the reflux that currently seems to be the cause of many of her issues.

She had an NG tube for most of her 128 days in the NICU (I was told this could lead to difficulty with the sphincter’s ability to close for some months following). She has basically been on Prevacid since her first milk (which was breastmilk then) at a month or so old. Due to her paralyzed vocal cord (from PDA ligation), we had to go to thickened formula feeds near the end of her NICU stay. After a swallow study and several formula changes (Enfacare>Alumentium>Neocate), we are now on Neocate at honey thickness with Thickit-2. She is still on 1/8 Ltr of oxygen at night; though her sats are high (almost always 99-100) we have left her on O2 until we can get her reflux under control.

She is choking (with and without eating), vomiting, seeming to aspirate some vomit from time to time. Sometimes she sees the bottle and refuses it entirely. She takes anywhere from 8 to 14 oz per day (a couple of months ago, she was taking 25 to 28 oz daily). She is on solids (oatmeal, fuits, veg) which she enjoys eating most of the time. She requires sitting up straight for at least an hour after feedings. She used to sleep through the night, but now she is waking 6 or 8 times. It is hard to tease out whether this is reflux, oral/motor skill issues, or something else, but I personally think it is a mix of severe reflux and oral/motor. We know reflux is irritating her esophagus because she has been scoped several times and it is red and raw.

We see many docs (GI nurse practitioner, ENT, neonatologist, pediatrician) and are currently on 2.5 ml of Prevacid 2x a day and Zantac (just started yesterday) 1 ml 1x day.

Questions:

I am really unclear on the timing of Prevacid and Zantac, and have been given conflicting advice about timing and empty tummy/doesn’t matter.

I’m also not sure how far apart to give them and would deeply appreciate advice about this. (I could provide a typical day feeding schedule if that would help.)

I’ve read in other posts on this site about Carafate (which I have taken before myself) and am curious about that, as well as about the non-aluminum Mylanta (or off brand).

Gosh I am so thrilled to have run across this site today. I know working mom is an oxymoron, but I have a very busy job and am torn apart and unable to concentrate as my job takes time away from my first priority–my little angel! I just want to help her as I know so many moms on this site do. Thanks in advance for your time.

[Anonymous]

Hello Mama and welcome to this site!

It is a great place to find a lot of help and support. If you want to look up certain things you can go to the top right hand corner and use the search button. Choose to go back 6 months and beyond as that will give you more answers and options of threads to look at.

Although my children took Prevacid and Zantac, it’s been 3 years ago and I don’t have nearly as much knowledge on medication dosing as another mom on here, Laura. And I am sure that she will soon come on here to help you out with that. She also knows a lot about the Mylanta and Carafate. I know even less about them as I never even heard of it until I came onto this site in the last year. but again… Laura is the one with answers!!!! 🙂

I am so sorry that your little one has been suffering so much. I can relate some but my children were not born early and never had feeding tubes. But I certainly do know what it is like to worry and try to figure out and make decisions about what is best for your little one. It can be SO hard sometimes. (((HUG)))

I have created a blog so that I can share with others what we found to help out children with their acid reflux and food intolerances. I by no means am saying that what worked for us is a cure all but many babies have found help the same way mine did. My children are not cured but their digestive problems have been GREATLY reduced. Here is a link to a couple of stories from other moms that have children with refusing to eat, reflux, etc. http://help4acidreflux.wordpress.com/lorraines-story/ At the bottom of Lorraine’s story is a link to another moms story that is very interesting.

I hope that you can find the help and answers you are looking for SOON!!!!

[hellbennt]

HI!

Welcome!

You need to please research all you can!

I never want someone to ‘just’ take my word for things!

I’m ‘just’ a mom and dedicated volunteer and advocate for GERDlings!

The prevacid dose looks low…

Prevacid 101:

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)

https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

From Prevacid 101, look for: Marci Kids PPI Dosing Chart

Mylanta Cherry Supreme is the one variety of mylanta that does not contain aluminum.you can’t find it anymore, but you can find store brand equivalents. Try rite-aid, cvs brand, walmart, target, Bartell Drug (West coast), Dollar General, brand names: Geri-Care & Geri-Lanta Supreme, meijer, etc- just look for one that does not list aluminum in the ingredients. you can give 1ml up to 5 times a day- it’s safe, even for newborns. if you see loose stools back off.

In Prevacid 101, ‘Products’ are mentioned

You can purchase these products at:

http://www.infant-acid-reflux-solutions.com/contact-us.html

& learn about them here: https://www.infantreflux.org/forum/forum_posts.asp?TID=14939

Zantac dosing- my/other’s question (has axid & pepcid doses, too):

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

OTC zantac:

Yes you can crush it and simply add it to the Mylanta Cherry and shake well.

75mg in 5 mL

(this link is found in Prevacid 101)

Here’s a handy chart to convert lbs to kilos:

http://www.sfca.co.uk/match/kilolbs.htm

your bottle of liquid zantac says 15mgs/ml

this means that for every 1ml of liquid you give, there’s 15mgs of the medicine zantac in that 1ml of liquid

OK: spacing/timing:

FIRST research FORM of prevacid- a PROPERLY compounded PPI (there are instructions to TELL dr how to prescribe it & how to get pharmacist to compound it in Prevacid 101) & a PPI used w/ a ‘product’

can be given at ANY TIME – does NOT have to be timed around meals

zantac needs to be spaced 4 hrs from a PPI

mylanta needs to be spaced 4hrs from a PPI

zantac and mylanta CAN be given with, or near, one another

I hope this helps!

you’ve found a fabulous place to research!

~laura

[Anonymous]

Hi – just saw your post –

My 3 month old just moved off of prevacid to Nexium. But we were using the dissolvable tablets rather than the compounded version. At 2 months and 10 lbs she was taking 3/4 of a 15 mg solutab per day (1/2 in am, 1/4 in the pm). Our GI specialist told us that does has to be constantly adjusted due to weight.

I know you have a lot more going on, but our baby can’t sleep laying down. When we’ve tried that she makes it 30 to 45 minutes asleep. Then she’s up again. You didn’t mention if she’s laying flat to sleep. If she is, check to see if you can elevate her head (with a foam wedge, swing, or raise the head of the bed). I have severe reflux as well. I sometimes wake up coughing because I’ve aspirated acid into my lungs in my sleep. It burns my throat horribly when that happens.

Our GI recommended Maloxx or Mylanta several times a day for 2 weeks to coat her throat and while her esophagus has time to heal. If you aren’t doing that, that’s something else that might help.

Good luck – hope your little one is making progress since your last post.

[Anonymous]

Thank you all so very much for this helpful feedback and support. I am sorry for the delay in replying–insanely busy and I wanted to have time to search through some of this before generating a response.

Some good news since last time . . . she actually slept “through the night” (meaning like 1 wake up versus our previous 6-10), so I’m thinking the Zantac is working. I have ordered a Tucker Sling in hopes that it will keep her from rolling and we can really get that bed more elevated than it is now (I guess it is probably at a 20 degree angle or so–not enough!). She is eating a bit more (like 14-17 oz). And she isn’t choking as much (perhaps the biggest relief).

I went through the Marci Kids dosing chart and YEAH–dose of Previcid looks low. I also went to dosing information on drugs.com and that was helpful to look through. I now wonder (a) if the dose is not sufficient and (b) if it is being correctly compounded. Like I said in my initial post, though, we’ve got swallowing issues so it has to be in some medium that can be thickened. We tried the beads in some applesauce and they just ended up stuck all over her forehead and fingers! I still need to look into the Tummy Buffers, etc. Maybe that would be an option for us.

I am going to ask about Maloxx and Mylanta–could these really be what we need!? I am excited to try.

dmariehill–it must be so scary for you to wake up choking! Oh my goodness. And to know yourself how it feels and know that is happening to your baby. Oh, my heart goes out to you. I am glad you described your symptoms. Makes me determined to get more aggressive about this right away.

Our long-awaited speech therapist who specializes in pediatric feeding issues will be coming to the house for our first appointment FRIDAY! I am so hopeful that this will help our little miss Izzy. Before I knew this therapist was locked in, I was searching feeding specialists in our area (Little Rock, AR) and ran across the information I pasted below. I put it there in hopes that it would help someone else down the line. I just had to gulp when reading it because I feel like this is precisely what has happened with our dear one.

Thank you all for being wonderful resources.

http://allchildrenstherapy.org/oral_motor_feeding_disorders
The role of reflux in developing unusual eating patterns

It is clear that many infants and children with GERD develop negative associations with feeding due to the reflux pain that feeding has caused them. If their pain is not managed adequately, the infant or child may develop secondary behavioral symptoms of food refusal, selectivity and oral sensitivity which can negatively impact growth and maturation and can lead to delayed acquisition of feeding skills. Infants and children with GERD may be hypersensitive to tactile sensations therefore do not explore objects with their mouths, which can lead to a lag in the development of the oral sensori-motor skills required for feeding. Introduction of spoon feeding may be delayed due to lack of readiness skills or noted increase of symptoms with introduction of solid foods. Young children also may have difficulty advancing to textured foods and may gag or choke while feeding. These symptoms (i.e., food refusal, selectivity and oral sensitivity) put stress on the feeding relationship between the young child and caregivers and may lead to counter-productive feeding practices.

The associations that infants and children make between the pain of GERD and feeding can remain even long after the pain of GERD has subsided. Young children may also be taken off medication when the obvious symptoms of reflux disappear yet their reflux may continue silently (meaning that stomach contents go into the esophagus but does not result in vomiting) and cause continued feeding problems. Therefore it is vital that the young child receive proper medical diagnosis and treatment of reflux, especially pain relief, before attempting a feeding intervention program. Although feeding therapy can be effective in addressing many types of feeding difficulties, without effective pain management, oral-motor, sensory and behavioral feeding interventions may yield disappointing, ineffective results.

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