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Feb 06, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
New here - Feeding troubles
Our 4 month old baby was diagnosed with silent reflux around 6 weeks (my gut feeling/many nights of tears because 'something wasn't right'). She was started on Losec, didn't work. Dosage increased. Didn't work. Switched to Prevacid once per day - saw some improvement in symptoms but now we are dealing with feeding issues and doctor has added Zantac twice per day. The problems with feeding are: clawing and pushing at bottle, turning head, bending forward like she is having abdominal pain. She is obviously hungry when she does this as she'll latch quickly then unlatch. The problems are much worse when she is very awake. Sleep feeding is easier but still twists her head and does the 'bends'. Occasionally will wake up screaming and only thing that soothes her is a few sucks on the bottle. These problems have steadily gotten worse since Christmas (used to be with occasional feeds, now is with all). Our pediatrician seems to agree that this is Sandifer's Syndrome but keeps 'reassuring' us that this is 'normal' with reflux and she'll grow out of it. The pediatrician is not concerned because she is still gaining weight. I'm terrified that my baby will just stop wanting to eat alltogether. We just started the zantac (in addition to the prevacid) a couple of days ago. Has anyone else had similar problems? Any advice would be appreciated. We're first time parents and this has been so hard....
Feb 07, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Yep, this sounds like us exactly only we were breastfeeding. Sadly, in the last 10 days we have tried and eliminated Alimentum formula and are now on Elecare. Seems to be helping. Have you looked into different formulas? Is your LO having trouble swallowing? Are you burping frequently during meals? Sometimes a big bubble would make Isobel squirm and flail during feeds. What about feeding in a more upright position? A dose of Mylanta just prior to feeds to help with any breakthrough pain? Just throwing out things I tried before giving up breastfeeding. For Isobel, total elimination of milk and soy protein did the trick. I posted "two sucks, yell" last week and got lots of responses. Welcome!
Feb 07, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I would give the medicine time to work. Also, I would try different formulas. I am not sure which one you are on but we hit the jackpot with Nutramigen. It made all the difference. I think when Nutramigen/Alimentum don't work the next step is Elecare as mentioned above.
Feb 07, 2009
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
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Also, make sure that you aren't giving the Prevacid and Zantac together. I think they need to be at least 2hrs apart. Check with your pharmacist. Also, make sure that you are giving the Prevacid on an empty stomach and wait 30mins to feed. This is important so the medication is most effective. What formula are you using? We had the most success with Neocate b/c Abby was MSPI (milk soy protein intolerant). We were on Nutramigen for the first 4 months then change b/c she was screaming during feedings and really just in pain. The change helped tremendously. Also, I would suggest seeing a pedi GI. They have most experise with treating reflux.
Feb 07, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
Feeding troubles
Wow, thanks for the responses! It really helps to know that we are not alone especially since our health care providers are less supportive that I would like. Mallory is on Alimentum formula and has been since our first visit to the ER back in December (after one of many choking spells). She was fine initially on that and as I said the feeding problem has gradually worsened. I imagine if it was an allergy she would have fought the feedings from the start? What might some other allergy signs be? We tried switching back to the Good Start yesterday just as an experiment to see if maybe she wasn't liking the Alimentum anymore but she wouldn't take it. To answer the other questions, it doesn't seem as though she's having trouble swallowing - and our pediatrician didn't think so either. We do burp about every 3 oz - if we try more often she gets mad! We try and keep her at about a 30-45 degree angle when feeding and afterwards. Unfortunately right now she needs a bottle to fall asleep so it's hard to keefp her really upright at all times during feeding. We're thinking of trying sleep training soon to try and break that habit - of course she takes the bottle best when sleepy so I'm not sure if that's such a good idea. I've never tried the Mylanta - is it something that can be given frequently? Does it require a prescription? Does it interact with the other meds? We aren't giving the Prevacid and Zantac together. Our pharmacist recommended at least 1/2 hour apart (we usually do more - about 2-4 hours). And unfortunately Mallory won't take the medication by syringe. We HAVE to put it in her formula otherwise she spits it all out! The pharmacist said it would be OK given that way (the prevacid is in compounded form and zantac is liquid). And as for the pediatric GI dr. - I wish! I've already asked for this and the wait time is 6 months!!!! Argh. Our pediatrician said she consulted a GI dr. and that he just said to 'reassure' us because this is all normal with reflux. (Maybe would be a different response if it was his own kid.....). We will give the meds time to work and then I think we might try switching formulas. Thanks again for all the advice. I just want my baby to be happy/healthy and will try anything....
Feb 07, 2009
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
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When using a compounded medication it is VERY important that it is made correctly or it will become unstable and not effective. Most her use the Prevacid solutabs. We break ours in half using a pill cutter and put 1/2 on a baby spoon with a little water let it break apart and feed it to her. We have been doing it this way since she was just weeks old. Here is a link telling about how to have a med compounded correctly http://www.infantreflux.org/forum/forum_posts.asp?TID=4505

Abby didn't always show the symptoms when she was eating. They gradually got worse and that is when we changed to Neocate. Some babies show other signs like blood or mucous in the stool or a rash. But with Abby's MSPI she didn't have these. Lo's with allergies could have a more severe reaction but Abby has an intolerance and not an allergy.

Feb 07, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
If I were you I would get on that waiting list for the Ped.GI. If things worsen at least you have an appt. coming up. If things get much better you can always cancel. There is always a long wait for the ped.GIs - that is the hardest part.

seeing a ped. GI is key if you are having difficulties.

I would shoot for the Elecare or Neocate. It isn't normal for your baby to be in pain! I would not accept that explanation.

Feb 07, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
diddo on the solutabs! I would ask for those instead of the liquid.
Feb 07, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
I'm lucky enough to have a cousin and uncle who are pharmacists- they have been great resources for me. The info I have gotten from them is if I were to give Prevacid with food I might as well save myself the money and not bother giving it. It simply does not work with food. We use the solutabs, cut them in half and use a syringe. At 4 months you should still be able to shoot it in the cheek pocket. The solutabs taste so good my LO sucks the tip of the syringe to get the grains out!

We saw blood in Isobel's stool for the first time last week when trying Alimentum. From what I understand, Good Start proteins are even less broken down. I'd be tempted to try Elecare or Neocate. Many times it IS a build up of offending allergens that finally create a measurable response.

Feb 07, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Oh, Mylanta is OTC - always ask your doctor. And, it is NOT normal for your babe to be in pain !!!
Feb 07, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
Feeding troubles
Great advice, thanks! We have found that pharmacists say different things about how long it takes the meds to work, how long they stay effective when compounded and how they can be administered. That has been frustrating for us. Plus the pharmacy we are using is only one of two compounding pharmacies where we live and they have been incredibly rude. I will definitely try the solutabs. We'll give the meds a bit more time and then look at switching formula. Today has been a good day.... she slept last night for 13 hours with only one waking!
Feb 09, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
Feeding Trouble
Sara, your story sounds very similar to ours. I was just wondering how your baby ended up on both prevacid and the zantac - did you trial the meds individually and then try them together? How long did it take before you noticed a difference? I'm just trying to decide how long I give the zantac to work before I see the dr. about switching formulas. By the way, we tried the prevacid solutab this morning - it was comical! I dissolved the tab in a little water and then 'finger fed' it to Mallory. She didn't know what to think but I got most of the beads into her.
Feb 09, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
We tried Zantac first and knew almost immediately it wasn't going to work. We added the Prevacid and because that takes a while to work kept going with the Zantac. Once the Prevacid kicked in we tried to get rid of the Zantac but noticed increased pain so back on Zantac too. Doc said Zantac hits 30% of acid and Prevacid 75% but together they work to reduce by 80% and some kids need that.

We were BFing but noticing MSPI like symptoms. I am vegetarian and managed to eliminate dairy and soy but couldn't eliminate eggs and nuts and still survive! She did much better but my supply started to dwindle and she was having feeding issues so we started to suppliment with formula. Alimentum immediately caused blood in her stool but so far so good on Elecare(fingers crossed).

I wouldn't be nervous about changing formulas - compared to meds, trying new food is innocuous and can really make a difference. My email is sara at hamandi dot com if you'd like to chat/ want some support.

Feb 09, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
And Prevacid makes a dosing syringe ask your doc. If they don't have ask for a 5cc slip tip syringe. Pop the plunger pop in the tab put the plunger back In and draw up a little water - super easy to shoot it back into the cheek pocket much easier than finger (I think anyway)
Feb 09, 2009
mallory'smom
Shawna: First time Mom to Mallory (10/07/08). Silent reflux diagnosed at 2 months. Alimentum formula fed. Trial of Losec (minimal effect). Now Prevacid 1x/day plus Zantac 2x/day.
Feeding trouble
I'll try the syringe tomorrow and see how it goes - thanks for the advice. Do you need a prescription for the neocate/elecare? I am in Canada (Edmonton) and not sure which one is available here. Thanks again.
Feb 09, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
I know nothing about the Canadian med system. Down here you can order elecare direct from Abbott - I don't know about Neocate. The elecare is $189 for 6 cans with free shipping in the US.
Feb 10, 2009
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
Photobucket
You can also order Neocate direct from www.neocate.com Some get a script for it and then can get it through a pharmacy if there insurance will cover some of the cost. But if the insurance won't this is more expensive then ordering it directly through Neocate. You can also get if off of Ebay. We ended up being able to go through a healtcare company b/c our insurance covered 80% of it under durable medical equipemnt but we had to get a script for it from her GI.
Check with your
doctor first!