So tired I think I will cry – pls help

[Anonymous]

Hi All. This is my first time posting so I hope I do everything right. My DD is 4 months old. I began breast feeding from birth. At 3 weeks I got a terrible migraine and had to take medication that was harmful so i stopped breast feeding for 24 hours. during this time i tried Alexa on cows milk based formula and she had an allergic reaction (face rash and swelling). After that her she started showing symptoms of silent refulx and was diagnosed by the paediatrician. I cut out all dairy from my diet but do drink soy milk. She is also occassionally on soy milk formula (about once a day).

She started on Zantac and gaviscon but gaviscon was constipating her so we just kept the zantac going. Her symptoms improved but she was still squirming after a feed and particularly in the night. As she got bigger we had to keep increasing the dose of Zantac.

At about 2 months she was only waking once a night to feed. But at 3 months she started waking up 4 – 5 times a night. Last Friday the DR switched her to Losec (omeprazole) suspension which has been made up by a compounding chemist. She weighs 6.78 Kg and is on 8mg per day (4mg twice a day). The first day she was screeming 2 hours before her dose was due but calmed down after i gave it to her. The next two days she has been improving a bit.

She seems pretty happy most of the day -but only ever sleeps for 1-2 hours at a time. She needs to be rocked to sleep each time. But at night she is terrible. She wakes 4-5 times. She settles back quite quickly either with rocking, a small feed or some cooled boiled water. She falls asleep on me and I can see that she is riggling as though the acid is coming up in her sleep. I think this is what wakes her at night.

I have a 4 year old and an almost 2 year old so am totally exhaused with not sleeping all night. So my questions are:

1. why is she such a bad sleeper – is it the reflux is worse at night or is it that she really can’t fall asleep by herself with all the rocking?

2. how long does it take to see an improvement on the omeprazole?

3. should i stop breastfeeding and switch to a hypoallergenic formula.

Anyone with tips on how to manage the sleepless night please let me know. I am seriously going crazy!

[hellbennt]

hi & welcome!
keep breastfeeding if that’s what you want to do

I’m in a rush- otherwise I’d spend more time answering you- I will later!

check zantac dose, it most likely can be increased- it can go up to 10mgs per kilo- don’t just take my word on this, read here:
https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=1

you CAN give the losec and the zantac- just make sure to space them about 4hrs from one another.

most likely your compound isn’t being made correctly, I’m sorry to report- if you scroll to the last page of this post, called Prevacid 101 (it’s actually also about other PPIs like prevacid, too) you’ll learn why.
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1
I would inquire about Zegerid or Bufferbabies- this is all explained from the link- also the losec IKF it’s being made correctly) can take up to 14 days for you to see it’s full effects…so that’s another reason to stay w/ the zantac.
also make sure to check your losec dose here:
http://www.marci-kids.com/dosing.html

here’s about the elemental formulas-
https://www.infantreflux.org/forum/forum_posts.asp?TID=6013
everything takes two weeks so if you were to switch you’d have to give it two weeks and then there are no guarantees- you can also modify/alter your diet to make your own milk into an elemental formula of sorts- this is called the TED- total elimination diet-this also takes two weeks and then you start adding foods in to see what you CAN eat.

I have a LOT MORE to say, it’s Looong, but full of very helpful info, so refer back to it often!
it’s my ‘intro’ called Groupie Intro:
https://www.infantreflux.org/forum/forum_posts.asp?TID=853

you can do this!

oh and to as why your baby can’t sleep- many reasons: uncomfortable, meds have worn off, meds aren’t effective, gas, reflux, baby isn’t distracted like in the day, etc
read post two of here for more about the relationship b/t reflux and food intolerances/allergies:
https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

More later!
So glad you found us!
~laura

[Anonymous]

Hi Laura,

Thanks so much for your information and support. I am an Australian living in Singapore and it is really hard to find people in the same situation as me. I read your intro to reflux yesterday – that’s how i found this forum. It was a really great help.

I forgot to mention that Alexa has become quite fussy feeding from the breast and at least 3 feeds per day I have to pump and bottle feed her.

Today she vomited up her morning losec dose (which would be too low according to the marci-kids charts). She was crying the whole day. slept only an hour and refused to eat. At 3pm I was feeling so bad for her that I gave her another dose. She was happy after that. Kids really are amazing. no feeling sorry for themselves.

She seemed to tolerate the Zantac better that the losec (she seems to chuck up a lot more on the losec). I have only given the losec 4 days so i guess i should stick it out a bit longer. Would you suggest switching her back Zantac?

I have also purchased some Neocate (can’t get elecare in Singapore) and am going to try her on that for a few days (and pump the feeds so i don’t lose my breast milk).

I am just at the point where i can’t work out what is actually working and what is not. I know she needs meds because she is a mess without them, but she is moderately good not great.

Thanks again and any more info that you and other mom’s can give me about sleep would be great.

[hellbennt]

ok what I would do is: increase zantac dose to 10mgs per kilo and also give the losec, making sure to space it four hours from the zantac.s

I would also try the TED IF you think it’s ‘food’ related- you do ‘know’, from the milk-based formula trial & results, that she reacts to milk proteins, so you MUST take out ALL milk proteins from you diet INCLUDING the ‘hidden’ milk proteins listed as ingredients IN things. a large percentage of babies who cannot tolerate milk proteins also cannot tolerate soy proteins, so you may want to try eliminating that (soy in formula and in your food intake), too, & see if things improve.
Some signs that other proteins (soy, etc) are affecting her are( but are not limited to):

poop:

watery
poops, poops that are NOT ‘normal breastfed baby poops (normal poops are
mustardy/yellow w/ ‘seeds’ that you can see), green poops (some green poops are
perfectly normal! just not all the time!), mucousy poops (stringy like the inside
of a banana peel, curdy like cottage cheese, looks like snot)

gas: foul-smelling, painful gas

grunting & straining to poop: looks like she’s
having difficulty passing a stool, bu,t when it comes out, it is soft

you can either ‘just’ start eliminating soy (along w/ the milk proteins) OR go for the full Total Elimination diet. as for breastfeeding help (vs pumping): can you find an international board certified lactation consultant http://www.ilca.org/falc.html ALSO can you find mylanta there? Try to find a mylanta/maalox w/o any aluminum in it- you may have to order it online? you can give this before a feeding to help settle her down. if you can’t find it maybe ask for a prescription of carafate- this is a SHORT-TERM ‘fix’ – it’s a coating that is used for ulcers but it works wonders (as a ‘band-aid’ type medicine) for little refluxers- it’s coats the esophogus and allows it to heal…if you do get this medicine, you’ll have to space it apart from the losec…

another thought:

BABYWEARING! this SAVED me. US.

[Anonymous]

Hi there, we went through a similar experience with my daughter. The sleep deprivation was horrible. We tried raising the crib mattress which didn’t help much for us. Some people had some luck with a tucker wedge/sling combo. I would guess that her losec compound is probably not made correctly… I never did manage to find a pharmacist who made it correctly. Even at the best compounding pharmacy in our large city. They added flavouring which degraded the med, and also didn’t put enough buffer. I’m not sure if you have access to any over the counter meds there like OTC losec or prevacid, but those may be options, though hard to give to a baby, but you could order buffer babies to help. I also agree with Laura with babywearing, it helped us out too! Hang in there.

[Anonymous]

Thanks so much Laura and Lori for your advice and words of encouragement.

I have cut out soy from my diet as well and have not given her any soy formula and her poo seems to be a better consistency. The pediatrician has upped her losec dose and given her motilium to help her keep it down. I have really perservered with the breast feeding as I think she is better with breast milk and she seems to a lot less fussy.

Here’s hoping the Losec will kick in soon.

Thanks again!

[hellbennt]

Amanda,

I also suffer from migraines! There are medicines you can take that are safe when pregnant/breastfeeding- what I discovered was Butalbital

Brand names

Amaphen^®

Anoquan^®

Butace^®

Endolor^®

Esgic^®

Fioricet^®

Medigesic^®

Repan^®

^{Also you can ‘make ‘ your own ‘cocktail’ by having a cup of coffee & taking acitomephen and ibuprophen (there is a point when breastfeeding when you can have the ibuprophen- I forget when that is)}

hellbennt2010-06-24 17:18:01

[Anonymous]

Thanks Laura. Your advice has been great!

I tried all the safe medicines including your cocktail but it was so severe that after 2 days in bed throwing up i needed imitrex. This is unsafe in breastmilk for 24 hour so i “pump and dump” if i need to take it.

On a good note, Alexa has been doing a lot better the last 24 hours. She is keeping down the Losec thanks to the motilium which is making her symptoms improve. She is doing normal poos and the gas is significantly reduced thanks (i think) to the elimination of soy in my diet and soy formula. She is back breastfeeding -just really perservered with that.

So all in all we are having a good day! I am so appreciative of everyone’s advice.

[hellbennt]

the losec compounded from the pharmacy is ‘only’ good for two weeks- if they’ve told you otherwise, then TELL them to please humour you & you need a new batch every two weeks- you may even see that as you get to the two week-mark that the meds aren’t as effective…just giving you a ‘heads-up’ lol

I hear you on the migraines!
I’m on day three of a low-level one- I’m functioning- I don’t like to take imitrex when it’s like this- I need to keep going as long as I can (that’s how I feel) bcse for me when I take the imitrex (I use maxalt) it’s when I’m incapacitated and need to lie in bed…)

[Anonymous]

I would also look into raising the zantac dose as I had the same issue with my daughter. I also had major issues with the sleep problems as well and found an incredible amount of success with the Nap Nanny. I honestly never believed a product would work so well- I was very skeptical but the way my daughter sleeps now is unbelievable. She really is a new baby- sleeping through the night and we are all much happier as a result! I understand what you’re going through and it’s so frustrating but it gets better. I would look into the Nap Nanny, it could be the answer for you! Good luck, it will get easier!

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