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[Anonymous]

Hello everyone. My name is Kendra. I have two girls, Madeleine is 2 and Reagan is 5 weeks. Today Reagan was diagnosed with silent reflux. I am so exhausted and reaching out for support from others who have experience with the pain my poor baby is experiencing. The pediatrician really didn’t offer much support or advice and I’m devastated that I gave up breastfeeding 4 days ago because I thought she was not getting enough milk from me and it was so exrememly stressful at each feeding session that I switched to formula in hopes of a cure. When her condition continued to worsen I took her to the doctor to find out that it was silent reflux and breastfeeding was actually better than formula. I’m so lost.

[hellbennt]

welcome! read all you can!

Recent ‘welcome’

https://www.infantreflux.org/forum/forum_posts.asp?TID=15597

I have a LOT to say and most of it’s here, in a link called ‘groupie intro.’

it’s looong but TRULY will help you- read through it, refer back to it, scroll through it/skim through it. You’ll find yourself coming back to it!

https://www.infantreflux.org/forum/forum_posts.asp?TID=853

you can do this!

please, when you get a chance (you have a lot to read!), go to the top of this page, click on Settings and please then click on Edit Profile, then scroll down to

Signature & put:

baby (name if you want or nickname), age (can put month & yr of birth), meds, doses & forms of meds, breastfed or formula fed

thanks!

so glad you found us!

laura

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

for free w/ your questions: The La Leche League Breastfeeding Helpline w/access to toll free breastfeeding help 24 hours a day. Just call 1-877-4-LALECHE (1-877-452-5324)

to find a local internationally board certified lactation consultant (IBCLC) click here:

http://www.ilca.org/falc.html

[Anonymous]

My heart goes out to you!!! Because I’ve been in your shoes! (((HUG))) Please take the time to read my blog. (see signature) Wish I time to say more but for now it is very late and I should have been in bed hours ago. 🙁

[Anonymous]

Thank you

[hellbennt]

please, any updates?

what’s working?

not working?

when people find this site they always say that they want to know what *happened* to all the babies…I respond by saying that once people find the board & find the information they need, then they don’t come back

but, posting everything helps others who find this board out of sheer desperation

who is your doctor? if you’d like to send me a PM (private message) that’s ok, too! but people should know who the good drs are and the ‘bad’ ones and the so-so ones, etc

thanks!

[Anonymous]

I’m sorry I haven’t been on. We’ve been struggling and I can’t read enough about this subject! I will be as regular on this forum as possible. Sleeping on her tummy allows her to sleep for up to 2-3 hours at a time which is way more than she’s been getting, but it makes me extremely nervous to do this at night only during the day when I can monitor her. At night I put her in our “Kickin’ Coaster” which is elevated at the head and keeps her body straight. She hates the swing and the carseat so those are not options.

Feeding is still a battle and we both end up crying after an ounce and a half. She has been on Nazitidine 0.9 ml since Thursday of last week and we have switched her formula to Similac Allimentum as of Saturday. Feeding her on a pillow instead of holding her in the crook of my arm does seem to help some and we obviously burp very often.

I’m going to get video of her struggling through a bottle later today to take to the pediatrician. Our pediatrician is great and easy to talk to and seems sympathetic. I just don’t know what to do. How long do I allow her to suffer while we attempt different meds and things? Or should I request a consult with a specialist?

Thanks for checking on us. I feel like everyone here is so much further than I am and they have been through worse than us and I don’t want to whine, but I am feeling defeated by this.

[Anonymous]

Hey, don’t feel like you’re complaining! Nobody minds! 🙂 Plus you need a place to express yourself.

I understand your concern of tummy sleeping for your baby but when/if my boys slept it was normally in a swing but if it was in their cradle it was always on their tummies. I even found that putting my boys in their swing on their tummies felt good to them. Ya it looked weird and uncomfortable but it kept their tummies from being scrunched up like they do sitting forward in the swing.

I think that is a really great idea to get a video to show your doctor.

I’m sure Laura can help with different options for meds as she is the med expert. 🙂 There are many different kinds of meds for reflux and some work better than others for different babies. Also she knows a lot about the right dosage to give according your baby’s weight. Sometimes doctors are not prescribing meds high enough.

I’m really sorry you had to quit nursing but for me, nursing was so stressful and it was not a time of bonding. There are many many good moms that are able to go on very strict diets to be able to keep nursing their little ones. For me, it just didn’t work. I nursed my first one till he was 12 weeks, my second till he was 8 weeks, and my little girl till she was 8 MONTHS!

Have you ever tried probiotics or digestive enzymes on your little one? I don’t claim them to be THE cure but for my children (and many others) they helped more than meds did. They are not harmful in any way so they might be worth a try. And if you ever decided to have another baby, I would highly suggest you take probiotics and enzymes while pregnant and nursing and see if it makes for a happier baby and better nursing. To be honest, I didn’t want any more children after my first two because I felt I couldn’t handle another refluxer/screamer.

[hellbennt]

look into an angel care monitor – this allows babies to sleep on their tummies- it has an alarm- if they aren’t made anymore (I think they still are!) then there should be another product that allows babies to sleep on their bellies- it gives an alarm if they stop breathing

for naps I used to put a beanie baby on my baby’s back so I could watch it go up & down & know he was breathing!

Nazitidine = Axid.

how much does she weigh? I can help you to calculate a proper dose.

it seems that many babies seem to plateau on h2 blockers- you’ll see zantac mentioned a lot – it’s another kind of h2 blocker. then, once they plateau, it’s usually time to ‘move on’ to a PPI. It’s all in Groupie Intro

https://www.infantreflux.org/forum/forum_posts.asp?TID=853

I would get an appointment with a ped GI; they’re usually hard appts. to get, so you might as well make one & you can always cancel if you need/want to. But, personally, I think another opinion can’t hurt…

Read all you can and then TELL your dr what your baby needs…

you can do this!

hang in there!

[Anonymous]

Thanks ladies. They do still make Angel Care Monitors. They are expensive, but DH is going to ask his parents to help us with the cost. hellbennt she weighs 9 lb 11oz and is on 0.9ml twice daily. She seemed to get better for a bit and actually slept for a few hours here and there on sunday and monday, but today has been horrible. She hasn’t slept at all since 4 am and she’s only taking 1 1/2 oz at most at each battle feed. She’s been screaming off and on since noon. I am making her another appointment with the pediatrician tomorrow and due to our insurance (military) I have to get an okay and a referral by them to go to a specialist.

[hellbennt]

I don’t know where you are, but Walter Reed (military) is actually good for reflux babies – maybe your dr can consult (telemedicine? a phone call?) w/ a dr from there?

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

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

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

https://www.infantreflux.org/forum/forum_posts.asp?TID=8288&PN=3

9lbs 11 oz = 4.4kilos

ok from the above link, (don’t ever just take my word for anything! I mean you can but seriously, research all you can; YOU must make the decisions)

axid dosing:

Here is recommended dosing of Axid (also called nizatidine) for the treatment of GERD in infants and children:

Children <12 years: 10mg/kg/day divided into two daily doses.

However, Lexi-Drugs states that Axid may not be as effective in children under the age of 12 years as it is for adults and children 12 years and older

ok so baby weighs 4.4 kilos

dose is 10mgs per kilo, so:

4.4 x 10 = 44

that’s 44 mgs a day

what dose your bottle say?

it says a number #mgs/ml

my guess is it says 15mgs/ml

that means that for every 1 ml of the liquid, there’s 15mgs of the medicine axid

so 44 divided by 15 = 2.9

that’s 2.9 total for the day

so to get two doses, divide 2.9 by 2 = 1.45

you could increase the dose from 0.9 twice a day to 1.49

ask the pharmacist to please humour you and to look up infant dosing of the med – see if it’s 10mgs per kilo – I don’t know if pharmacists still use something called the “i-pharmacist”

but smile and ask her/him to please look it up (blame a cousin that told you or something )

I cant tell you to increase the meds on your own…but I can tell you that it could be a bit higher…

[Anonymous]

She is currently doing well. We have upped her dose of Nazitidine and she is on Allimentum formula. Just jumping on to let everyone know real quick because I had to go back to work last week and it’s been so crazy!

[hellbennt]

thank you!

please share your dr info (you can send me a PM) – the good & the not-so good

thanks!

[Author]

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