Infantreflux.org | help with next steps for my baby girl

This topic has 5 replies, 1 voice, and was last updated 17 years, 1 month ago by hellbennt.

Viewing 6 posts - 1 through 6 (of 6 total)

Author

Posts
July 14, 2009 at 5:22 pm #63280

Anonymous
Inactive

Hi everyone….I am new to posting but I have been “lurking” for about 4 months now. All the information on this site and what has already been posted has been such a huge help to me in trying to make my daughter confortable. However, she is 7 months now and we’ve got to start trying something new and I would love any advice on how to proceed.

A little background: My daughter is 7 months old (born 12/3) and weighs 9.1 kilos at her last checkup. We suspected reflux very early on as she has never ever slept or been comfortable lying on her back. At about 1 month old she was prescribed 3ml of Zantac daily, which we used for a month with no improvement, so we discontinued it, thinking we were wrong about the reflux. She is a silent refluxer, and rarely spits anything out, although she chokes on the acid all the time…fast forward to her 3rd month where she started screaming in pain for up to 2 hours a day, every day. She very quickly progressed to exhibiting Sandifers Syndrome and having what looked like seizures (thanks to this board and youtube for helping me figure that out!). After an EEG to rule that out, a blood test, ultrasound and upper GI test, she was offcially diagnosed with GERD. We were prescribed Prevacid and started using the Zantac again. We spoke with a GI specialist at our local Childrens Hospital, who suggested prevacid (15 mg solutab)cut in half, given morning and afternoon and Zantac in the evening. This stopped the long streches of crying and has been our routine ever since.

The problem is that my sweet girl has never slept more than a few hours at a time. Some nights she wakes up every hour or so, crying in pain. You can feel the acid in her chest, like a hiccup without sound. She also has painful gas. We don’t know how to help her anymore. We went back to the GI doc, and he suggested giving her the prevacid in the afternoon and evening, keeping a food log to see if I was overeating anything, and then perhaps giving her a hypo-allergenic formula at night. This upset me because I asked him at 3 months if it could have anything to do with what I’m eating and he said no way. So now he is shrugging his shoulders and saying that this is all he can suggest. I asked about upping the dosage of her Prevacid, and he said that wouldn’t do anything. However, the Marci-kids website says she can have from 8-12 mcg of Prevacid 3x per day. Currently she only gets 7.5mg 2x a day. So, to make a long story short, we are at a crossroads…

Do I up her prevacid dosage, despite what the GI doc says? Or do I try the hypoallergenic formula at night approach? She has been solely breastfed up until now and I am so scared to give her anything that will further upset her tummy. I am hesitant to try an elimination diet, because I am a vegetarian (meat makes me very sick), and doing so would essentially make me a vegan, which wouldn’t be great nutritionally for me or for her. I need to do something different becuase we all need some sleep…it has been a long 7 months, and more importantly, I want to stop hearing those horrible cries 🙁 Thank you for reading this far and I would truely appreciate any advice!

July 14, 2009 at 9:36 pm #63283

Anonymous
Inactive

I hope that some of the other moms will chime in about the breastfeeding and I will leave that to them as I was not successful at it so have no real advice on that topic for you. About the meds I would give her the prevacid in the morning and then before bed I assume you nurse before bed so give it to her 30 min or so before you plan on nursing before bed. Then I would figure out what her max dose of Zantac is (laura can help with that) and then i would give 1/2 dose mid day (of course spaced 4hrs from either prevacid dose) and then save the other 1/2 for middle of the night to see if that helps with sleep. If that doesn’t work I would find a doc that is willing to up your dose to the 22.5mg/day (have you tried asking your ped if they are willing to increase the dose?) HTH, good luck.

July 14, 2009 at 11:52 pm #63285

hellbennt
Keymaster

your diet: if poops are normal breastfed baby poops then you might not have to address diet…you do mention gas, though…is it foul-smelling? does she strain and grunt to poop only to have it come out normal and soft?

these things could point to protein issues…

can you find another ped GI or

address current one re: marci-kids dosing?

FAX FAX FAX the dr

dont wait for a call…

start off w/ a THANK YOU

keep it short & sweet

stick to the facts (no feelings and no rambling emotions)

state current meds, doses, symptoms

make request- flat out- short & sweet

THANK AGAIN

follow up by calling office to say fax was sent

call again later to discuss requests in fax, ie: have you called in the increased prescription yet? THANK YOU

sample fax: https://www.infantreflux.org/forum/forum_posts.asp?TID=10633&PID=90325#90325

About faxing the doctor (& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&TPN=1

have you tried mylanta? try mylanta cherry supreme or any store brand equivalent, looking at the ingredients to see that you choose the one w/o any aluminum. it’s the adult kind and safe for even newborns. give 1ml and see what happens. you can give up to 5mls over the course of the day & if you see loose stools, just back off some.

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

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

9.1 kilos x 10 = 91mgs total for the day of zantac

bottle should read 15mgs/ml

so divide 91 by 15 = 6.1 mls total for the day of zantac

you can divide the 6.1mls into 2 ‘uneven’ doses and give the higher portion at night

make sure to space the zantac 4hrs from the prevacid

and make sure to give the prevacid on an empty stomach, followed by a ‘meal’ 30 minutes later

the mylanta CAN be given with the zantac but it does need to be SPACED from the prevacid (4hrs)

hellbennt2009-07-14 23:55:37

July 15, 2009 at 11:25 am #63292

Anonymous
Inactive

I’m sorry you are having so much trouble… we are still having lots of problems too. Sam is breastfed, and i tried the TED twice with zero results each time. His diapers were occasionally mucousy but usually normal. He is also very gassy and strains to poop. I don’t know what to tell you about the formula…we’ve never tried. We have had weeks where sam will do wonderfully without me changing anything so I don’t think there are any external factors to his reflux. I’m sorry I don’t have any good advice…but keep in mind that if you want to keep breastfeeding and do decide to trial the formula, make sure you maintain your supply in case there are no changes and you can drop the formula. Good luck.

July 16, 2009 at 9:21 pm #63311

Anonymous
Inactive

Thanks so much for the help.

Her poops are normal, except she will wake herself up from it and kick around a ton at night. Sometimes her gas does smell really bad. Other than that, there doesn’t seem to be anything (blood, mucous, etc) to point to an allergy, but I just don’t know since we seem to be out of options.

Her normal ped. will let us increase the dose of prevacid…we tried for a few days but she was so backed up she didn’t poop for about 5 days, so we went back down and added the zantac back in at that point.

I knew about the prevacid on an empty stomach, but I didn’t know to space it so far from the zantac. Goodness, the meds schedule is demanding, no? We do use Mylanta when she’s having an attack, but I checked the ingredients and ours does have aluminum hydroxide…is that bad? I checked the store today and couldn’t find one that didn’t have that. Is that bad? What should I be using??

Lastly, has anyone heard of a case where adding in some hypoallergenic formula caused the baby more problems? I am willing to try formula at night only, but I don’t want to mess up her digestive system more than it is. THANK YOU SO MUCH AGAIN TO ALL WHO ARE REPLYING!!

July 16, 2009 at 11:09 pm #63313

hellbennt
Keymaster

you say her poops are normal and you also say say she didn’t poop for 5 days- this can be ‘normal’ for a breastfed baby- not sure about 7 months -but you could look at http://www.kellymom.com to find out- when she does poop is it soft? anyway, there’s no ‘rush’ to jump to elemental formula if you want to continue breastfeding- there’s the TED, etc.

the key to all of this is RESEARCH and, of course, support!

this link, Groupie Intro, should have links to info about changing your diet, etc: https://www.infantreflux.org/forum/forum_posts.asp?TID=853

and also this will really help too:

Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013
Author

Posts

Viewing 6 posts - 1 through 6 (of 6 total)

The forum ‘HELP!!!’ is closed to new topics and replies.