Infantreflux.org | At our wits end.. baby crying non stop...

This topic has 11 replies, 1 voice, and was last updated 15 years, 2 months ago by hellbennt.

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June 5, 2011 at 3:51 pm #68472

Anonymous
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My husband and I have a 7 week old baby girl. She was GREAT the first 2 weeks. (she was born 2 weeks early) She then started spitting up and was diagnosed with relux. She had the classic symptoms… “wet” sounding breathing…spit up..very fussy after eating etc…. We tried EVERYTHING..changing bottles, changing formula, wedge pillows, rice formula in cereal, keeping her upright, slings/wraps…you name it WE HAVE tried it.

She is now on a dose of Zantac .. I believe it is 15ml twice a day. Here is my question…. she SCREAMS 90% of her waking hours!! The only quiet time we get is when she is eating. People think we exagerate… but the other night it was from 6-11 with NO BREAK! You CANNOT put her down in her Nap Nanny (wedge pillow), bouncy seat etc… the ONLY way she will sleep in propped up on one of us on the recliner. We are really losing it! There is not 1 second during the day that she can be put down or for the most part, is not screaming her head off. We have tried different position to hold her etc… the ONLY relief we get PART of the time is if you walk with her… and that is not a guarentee. Wehave read that some people go through this for 7 or 8 months. In all seriousness.. I don’t think we can do it! It is really hard to feel ANY connection to her. People with babies that do not have this issue may think we are uncaring … but right now we are thinking WHY DID WE DO THIS???? THIS has RUINED our lives!!! We cannot bond or have ANY “good” time with her.

I guess we are asking if ANYONE has some words of wisdom and or how anyone has done this.. if you have. Our Dr says you have to try the meds for at least 2 weeks to see if they will work… but at this rate it has been 10 days and it is worse than ever. Can something other than Reflux be wrong with her??!?!?

Thank you for listening and any opinions/suggestions are appreciated.

Mike and Tara C

June 5, 2011 at 6:59 pm #68473

hellbennt
Keymaster

this was my baby. non stop shrieking/howling. no one understood the severity of it. one night he even LOST HIS VOICE.

I have A LOT to say- you must research all you can, decide on a course of action and TELL doctors what to do. this is a sad state of affairs, but I have found that many doctors must be TOLD.

how much does baby weigh? I can help you figure out zantac dose.

as we do this, read GROUPIE INTRO and from there read PREVACID 101.

please list current formula, or breastmilk, too.

hang in there! i HAVE been where you are. it DOES get better!

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 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

June 5, 2011 at 7:40 pm #68474

Anonymous
Inactive

First of all… THANK YOU for the kind words! It is no nice to know we are not alone.

As far as formula…

She started with Enfamil Newborn. The Dr then suggested adding rice cereal to it when she started having problems at about 4 1/2 weeks old. We tried this for 2 days and she VOMITED it up every time… and did NOT burp well with it at all. Almost like her body was rejecting it. So we stopped.

We then tried Enfamil Gentlease Lipil. She has been on that for a week. She is screaming MORE than ever. Also, she went from pooping a few times a day…and it was oatmeal like. To once every day…this poop is thick and a dark green and fills up her WHOLE diaper!! Also her face has broken out and gets splochy at times.. but I have read and have been told by friends that is a normal things babies go through. It is not really severe… but almost looks like heat rash (which it may be from her laying on me all night long 🙁 Considering this all started a week ago… I GUESS it is the formula….

We feel like we have no direction on what to do next. What formula do you try? How do you know if it is working and how long do you give it ??? We are putting her back on the original Enfamil for newborns until we figure out what to try or do next. I feel bad changing formula’s again… but at least on the Enfamil infant she did not have colic… unless it developed in the last 2 weeks…. ugh! You see how frustrating this can be ??!!??

As far as medcine goes… She is currently taking Zantac every 12 hours. (1 ML). She currently weighs 10.8

THANK you again and we appreciate you helping us through thsi journey !!

Mike and Tara

mikeandtarac2011-06-05 19:42:55

June 5, 2011 at 8:00 pm #68475

hellbennt
Keymaster

ok: first of all every change takes TWO WEEKS to see the full effects…so, pick a formula and don’t change it for two weeks (unless of course you see a rash or hives or something really out of the ordinary). The frustrating thing (ok ONE of the frustrating things) is that it might not even be the formula…but, deep breaths, first things first. Go back to the enfamil infant and GET ANOTHER DOCTOR. ok, sorry to scream. I’m just passionate about this, can’t ya tell?

no, really, FORGET adding rice or anything at this point…your baby already has a sensitive system…why add more stress?

anyway if there was no rash w/ the enfamil infant then stick with it for two weeks & research all you can.

ok, now we can address the zantac. How do I know all of this stuff? I’ve been on this board for just about 8 (!!) years now and I’ve dedicated myself to helping people like you, because 8 yrs ago this place SAVED my baby/ME, my FAMILY.

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

10 lbs 8 oz = 4.8 kilos

maximum dose of zantac by weight it 10mgs per kilo so

10 x 4.8 = 48mgs

that’s 48mgs a day of zantac for the day

your zantac is in liquid form & the bottle says 15mgs/ml

this means that for every 1ml of liquid zantac you give your baby, your baby gets 15mgs of zantac

so: 48 divided by 15 = 3.2

this means that you baby can have 3.2 mls of zantac a day

this means you can increase the zantac dose!

do NOT just take my word on this!

read here:

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

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

I am NOT a medical professional, I am just a self (& other!!) proclaimed expert on all (ok most) things infant reflux related. YOU are the parent and YOU must research and decide what to do. If you are not comfortable just increasing the dose on your own, then TELL your doctor. do not ask. TELL.

FAX FAX FAX the dr

don’t wait for a call…

start off with a THANK YOU

keep it short & sweet

stick to the FACTS (no emotions and ramblings)

state current meds, doses & symptoms

make request- flat out- short & sweet

provide pharmacist name & contact info

THANK AGAIN

follow up by calling office to tell them fax was sent

call again later to discuss requests made in fax, ie:

is RX called in 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

Here’s some more light reading for you, LOL.

MSPI ‘Main’ page:

https://www.infantreflux.org/forum/forum_posts.asp?TID=2697

best EXPLANATION OF FOOD ALLERGIES/INTOERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: https://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2

babywearing SAVED US!
https://www.infantreflux.org/forum/forum_posts.asp?TID=1044&PN=1

http://www.thebabywearer.com/forum

June 5, 2011 at 8:01 pm #68476

hellbennt
Keymaster

or…not to confuse you further, you can try alimentum or nutrimigen for two weeks…I *think* it’s explained here?

https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

June 5, 2011 at 8:23 pm #68477

Anonymous
Inactive

It will get better, I promise! I could have written your post just a few weeks ago. My little one is 11 weeks now and doing much better. At 7-8 weeks, the crying was at it worst for both of my kids. Slowly, the crying will get less and less, we are down to about 3-4 hours of crying now (total) at almost 11 weeks.

Here are the things we’ve done and found that work to help stop the crying – note that I think it’s a combination of things that helps not just one of them:

1) Formula and Meds – we started her on a hypo-allergenic formula (Similac Alimentum) and Prevacid about two weeks ago. The Enfamil version is Nutramigen. They say you need to give formula switch about two weeks to work. I saw your doctor put your little one on Zantac, we didn’t try that with this dd but it did not work for my other dd, so we went straight to Prevacid with this one.
2) Bath – this pretty much always stops the crying. Give one every night if you need to.
3) Car ride – my dd screams when being put in her car seat but as soon as we start driving, she’ll usually fall asleep.
4) Walks outside – this usually stops the crying.
5) Positioning – My dd will only tolerate being held facing outward and walking in this position. All other holds make her fuss and cry. Experiment until you find the right way your dd likes to be held.
6) I bought a play mat at 8 weeks and she would tolerate it for short periods of time – the best one I found was the Fisher Price Rainforest mat. It’s good because it has lights that she can look at above her. She will tolerate it for about 10 minutes now and she’s smiling at a cute monkey on it. She’ll also tolerate the bouncy and swing for short periods of time so we rotate these in between the walking as long as she’ll tolerate it.
7) Sleeping – I hate to promote more products but Fisher Price makes a bed that has been a LIFESAVER to my dd!! I only wish this was around for my first dd. It’s called the Fisher Price Newborn Rock n’ Play Sleeper. It’s perfect positioning for reflux because it’s at an incline and it’s also nice because the way she fits in it seems comforting. I have it right by my beside and if she wakes in the night I can rock her if needed or peek over to see how she’s doing. I would run out and buy this thing – it’s THAT good!!!

Hope some of this helps. Hang in there, it will get better!

June 5, 2011 at 8:27 pm #68478

Anonymous
Inactive

Here’s a link to that rocker, doesn’t look like much but it’s sturdier than it appears and has been a lifesaver for sleep time!!

http://www.amazon.com/Fisher-Price-Newborn-Rock-Sleeper-Yellow/dp/B002M77N22

June 5, 2011 at 11:39 pm #68479

Anonymous
Inactive

I could have written your post as well (almost 7 years ago now – wow!). I tell people that she screamed 24/7 for 9 months. No one ever believes me – except for the family members and friends that helped us get through it. To help it seem less intense, things did improve right around the 4 month mark. She finally started sleeping on her own at that point.

Laura’s links are all wonderful. Stacey’s list of suggestions is great. Almost all of them worked for us (except 6 and 7). For us, putting her down never worked and she would only sleep flat on her stomach, preferrably on us.

Other things that we learned. If allergies run in your family, keep an eye on the rash issues. My ped told us that her rash was just excema. We had issues with Alimentum, but used Nutramigen. She had a lot of improvement on Nutramigen (and with prevacid). But her rash continued to get worse. At 14 months, I insisted on allergy testing and we discovered that she was allergic to milk (along with other foods). Nutramigen is broken down, but it still contains milk! If we had known that sooner, we could have made all of our lives easier. So, my point is, if the rash continues, consider an allergy (or a protein intolerance). If you think something is wrong, push to get answers. I let my ped make my doubt my instincts and we all suffered as a result.

On a much more positive note, you will get through this, and it will become a blur. My dh and I took turns staying up every night with her (dozing fitfully while she slept on our chests, never more than 2 hours at a time). He barely remembers it, and I actually have almost fond memories of it (almost like a war story). My dd is a bright, happy, energetic little girl who is excited about turning 7 in a few weeks and has absolutely no memories of that horrible time in our lives and never needs to know that my dh woke me up on one of “his” nights to ask me to take over for an hour or two because he was fantasizing about jumping out the window with her. Reflux is a hard thing to live with, but you’ll make it through and end up being proud of yourself for the strength that you never knew that you had.

June 5, 2011 at 11:43 pm #68480

Anonymous
Inactive

I forgot one thing. There is actually research that a reflux baby (especially a spitter) is safer sleeping on their stomach. We found that both of my reflux babies slept better on their tummies. With my older dd, she was on a pulse-oximeter monitor, so we were comfortable letting her sleep on her tummy. With my younger dd, we considered getting an angel care monitor to make us feel safer with her tummy sleeping.

June 10, 2011 at 8:11 pm #68496

Anonymous
Inactive

Can’t type much, as I have my 6 wk old GERDling sleeping on my chest, but wanted to second the Fisher Price bed rec. We also have a newborn that won’t be put down for longer than about 2.5 minutes anywhere, but was able to sleep in that little bed for 4 hours the other night!!! The rest of the time he sleeps tummy down on my chest. We tried every kind of contraption you can think of with our last two GERDlings, and this bed is a great deal. Aside from a Tucker sling where they can sleep tummy down on an angle, it’s the best option. We also have a Snuza movement monitor so we don’t have to worry about his breathing as much.

Hugs to you–things will get better but I know it’s agonizing until they do. I’ve not decided that I’m officially ‘back’ to this board (still hoping this new little one has dodged the bullet, but signs point otherwise), but you’ve found the exact right place.

June 17, 2011 at 8:46 pm #68532

Anonymous
Inactive

Well, our dd responded fairly well to the Zantac when we upped her dose… for about 4 wonderful days she was just like we had hoped our baby would be. But now she’s returned to her old self with the gurggling cry, frequent spitting up, constant crying and scrunching, all while seeming incosolable.

On a somewhat more positive note she seems to be doing much better on the Soy formula except now she is regularly constipated (only going about a dime sized hard play-doh ball a few times a day while struggling mightily to get that out) and we’ve tried all the Dr suggestions to alleviate that to no avail.

We’ve got an appointment on the 21st with her pedi and we’re going to make a strong suggestion of switching her to something a little stronger than the Zantac and try to get other ideas for the constipation (we’ve tried diluted baby apple juice, diluted prune juice, karo syrup in water).

We’re keeping our fingers crossed and keep counting down the days until we out run this really difficult time… and thanks to everyone for the suggestions and support.

Sydney Grace’s Mommy & Daddy

mikeandtarac2011-06-17 20:47:04

August 5, 2011 at 10:02 pm #68793

hellbennt
Keymaster

any updates?
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