Don't know where to go from here…

[Anonymous]

I stumbled upon these forums by chance.. can’t believe it exists

I know there is a huge intro post with links and links galore.. I did try to navigate through some of them. It’s very overwhelming and a lot of information. I’ll give you the best abridged version I can of our story…

My son is 6 weeks old and we’re experiencing what I believe to be pretty decent reflux. Since he was about 3 weeks, he has become a very grumpy baby. If he’s not eating or sleeping, he’s crying and fussing. He was spitting up a ton, and from one feeding to the next – he’s been on Nutramigen for almost 2 weeks. Seems to have helped the spit up, but not the crying and fussing.

After 3 days on Nutramigen I begged the doc to let me start Zantac because I needed something else besides new formula which wasn’t doing the trick. So he’s been on Zantax (15 mg/ml) 0 he gets 1 ml twice a day. Giving it to him is a trick and a half, too. tastes terrible. We try to syringe it after he’s had a few sucks on his bottle. usually works but he’s spit it out a few times, too. It doesn’t seem to be doing anything for his reflux symptoms.

During feedings, he eats and eats and eats. They say you can’t overfeed a baby, but I swear if I put 10 oz in the bottle he’ll drink it. He was doing 3.5-4 oz every 3 hours for a good week or two. But lately he’s sucking the bottle dry and screaming bloody murder when we try to burp him and when he’s finished. So as of the last 24-48 hours I’ve been trying to ‘stay ahead’ of him. Two feedings today he got 5 oz – and drained it both times. At 6:30 he was overtired (doesn’t sleep, see below) and drank 2 of the 6 oz we put in, then passed out COLD. He just woke up (1 hour later) and DH is giving him the remaining 4-5 ounces.

His general behavior, though is constantly fussy. He always has his head arched back and turned to the side, his legs kick straight out. He’s almost kicked out of our arms. When close to our chests, he buries his head and moves it from side to side, never settling. His tongue is constantly in and out of his mouth, and he makes faces hours after a feed like he has a bad taste in his mouth. He’s always moving. I might get 30 minutes in a 24 hour span where he’s still and not fussing. He almost never goes down to sleep by himself. He’ll sit there and kick and grunt and flail his arms forever , even if he’s clearly exhausted, until he starts crying. We rock & swaddle and if he falls asleep in our arms 75% of the time he’ll hit the crib and be wide awake and kicking again. We give him white noise, but it doesn’t help him fall asleep.

His crib is inclined. We try to keep him upright. We use the FP Rock n Play sleeper a lot. He breaks out of almost any swaddle he wants to (and we use a few) but he needs to be swaddled to sleep soundly – he has horrible startle reflexes.

In general we’re just exhausted and frustrated. I don’t know where to go from here. We see the MD on Tuesday. She might want to get us to a Pedi GI…. what should I be saying, encouraging, demanding? What’s the next best step?

All I wanted was a happy healthy baby and he’s so cranky and restless

[hellbennt]

hi & welcome!

first of all how much does he weigh? I’ll help you figure out PROPER zantac dose until you can get your baby on a PPI (medicine like prevacid, prilosec, nexium).

you can also use mylanta cherry supreme to get the zantac down. it’s hard to find acutal mylanta, but you can find the store-brand equivalent- like cvs brand, rite aid brand, etc- the thing to look at is the ingredients and find the variety/flavor that does not contain aluminum

you can give in 1ml doses, up to 5mls over the course of a day, &, if you see loose stools, back off.

it’s safe even for newborns.

I am NOT a medical professional! research all you can! I am ‘just’ an advocate for these babies & I’ve been on this board for EIGHT years, so I do feel that I know my stuff…

nutrimigen sounds like it’s doing it’s thing- and it also sounds like now that ‘diet’ is addressed, it’s time to address medication.

YES, get to a ped GI

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

there are recommendations for ped GIs in your area…

and also look into BABYWEARING- it SAVED US!

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

http://www.thebabywearer.com/forum

I used to swaddle my son, pop him in the pouch and pace all around the house and outside…I hear you about the constant everything- pain, screaming, movement…

sounds like your son could have sandifer’s? from Groupie Intro (the long overwhelming post w/ links) here is:

* Jonah had Sandifer Symptoms before he was on the right medication & dose. It’s symptoms like back arching, stiffening a leg, twisting the head in one direction, & can also include seizure type episodes…i always use the symptoms as a barometer- as we got the meds figured out, the symptoms pretty much disappeared…

from: https://www.infantreflux.org/Forum/forum_posts.asp?TID=627&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;PN=1

sandifer threads: https://www.infantreflux.org/Forum/forum_posts.asp?TID=195&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=sandifer

https://www.infantreflux.org/Forum/forum_posts.asp?TID=417&am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;am p;KW=sandifer

hang in there!

~laura

[Anonymous]

Thanks for the welcome 🙂 I’ve read many of your posts!

At last check (2 weeks ago for his 1 month) he was 10 lbs exactly. From what I’ve read PPIs tend to work better than Zantac?
Define “loose stools” – his stools used to be more like peanut butter – but since moving to Nutramigen they’re already more watery – so I’d already call that ‘loose’ – is there something in particular to watch out for?

Sandifers sounds exactly like what my son has. I get concerned every day with the head arching and the leg kicking. It’s to the point where I have NO idea how babies are supposed to behave, all calm and coo-ey. He’s my first and all I’m experiencing is the frustration in his face 24/7 …

I do have a Moby – I haven’t mastered it – it’s huge and I’m short. I need to get another type of carrier (need to find the $$ first) – recommendations on the absolute best one? 90% of the time he’s OK in it- at least for a little bit. But if he’s having an episode even the Moby won’t calm him.

Funny, today I ran a couple errands and saw a new mom burping a little girl – couldn’t have been much older than my son – the girl was just hanging out on her shoulder, all calm. I had to look twice because I was certain that’s NOT how babies react. Shouldn’t she be wriggling, crying and fussing, making it nearly impossible to burp? Shouldn’t she need three hands – one under his bum, one supporting his crazy head and one to burp?….

JacksonsMom2011-09-09 20:41:15

[hellbennt]

so much to say-

ok here goes:

zantac dose (don’t just take my word on this!

read here:

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

maximum dose by weight is 10mgs per kilo

baby is 10lbs = 4.5kilos

so 10 x 4.5=45

that’s 45mgs total for the day of zantac

your bottle of liquid zantac says 15mgs/ml

this means that for every 1ml of liquid you give, there’s 15mgs of the medicine zantac in that 1ml of liquid

so take the 45 and divide by 15 = 3

that’s 3ml, total for the day of zantac

you can divide that into 2 uneven doses or even doses- not sure it will matter but maybe give more in the evening?

zantac CAN be given w/ mylanta

loose stools: peanut butter consistancy is good…

try mylanta and if they get way watery, then back off

moby is awesome- check out youtube for instructions and/or find someone locally who can show you- I only mastered my slings after finding local people to show me- the babywearer.com/forums has a babywearers near you forum…

trick is to have it smooth, straight and TIGHT (it loosens up but you need to start off w/ it almost too tight)

sandifers will lessen/dissapear w/ right meds…

hellbennt2011-09-09 21:16:50

[Anonymous]

Thank you.. I will talk to the doc on Tuesday and up his zantac .. probably keep it 1.5 ml/2x a day since he’s not more fussy at one time over another…

Will post back!

[Anonymous]

My baby was exactly the same and it is a nightmare when it is constant eating and then misery while eating..

I am not trying to push goat’s milk on anyone, but that is what saved our baby and us from a miserable existence. He could not tolerate ANY formula and goats milk is gentle to baby’s stomach, you can research it online and especially on Dr. Sears website.

I have our story under introduce yourself and general feeding issues, please read.

[Anonymous]

Thanks, sickofreflux. We’re getting a referral for a Pedi GI (saw the doc today). Not sure of the wait time – trying ASAP. In the meantime she’s calling an ultrasound of his stomach just to check things out there (can get that done locally…)

Will post back when I can.

[Anonymous]

Just an update that we finally have appointments with MDs, but they’re not tomorrow 🙁 Ultrasound ordered is Friday. Nutritionist (??? Didn’t even know they were booking me with one) is next Friday and the Pedi GI (the most important one) isn’t until 10/13.

In the meantime we’ve moved to about 12 different formulas (Nutramigen was just at a stalemate). Currently on a formula with added rice – will stick with either that or a ‘gentle’ (for fussiness and gas) until the GI appt… Tried everything, including soy, and nothing seems to be helping…

Of course when I called my doctor to inquire about the referral appts I made it a point to ask if my regular doc could prescribe a Prilosec or Prevacid. Her response “Oh, I don’t think they can give those to babies.”

good grief.

[hellbennt]

good luck!

formulas: did you give any of them a full two weeks?

two weeks seems to be the standard measurement to know if something’s working, whether it be formula or medicine, especially a PPI

[Anonymous]

hellbennt wrote: good luck!

formulas: did you give any of them a full two weeks?

two weeks seems to be the standard measurement to know if something’s working, whether it be formula or medicine, especially a PPI

Yes, my estimation of 12 formulas was an exaggeration 🙂
The only one he hasn’t been on for at least 10 days was soy. After 4 days he was plugged up so bad I pulled him off of it. He was straining to use the bathroom, and there was no difference in behavior.

After two weeks on an added rice formula + Zantac I thought were were making headway, but the last 24 hours he’s been spitting up for two hours after a feed. Using Dr. Brown’s bottles he seems to burp less, but he leaks like a faucet for hours after. And he still has 1-2 episodes per day where he cries and cries for seemingly no reason right after eating.

SO hard to know what’s going on.. we’re so frustrated. He gets his stomach ultrasound today… GI appt still isn’t for another two weeks.

I’m anticipating them telling me to feed him less and more often (right now he’s downing 6 oz every 3-4 hours). I’m terrified of this advice because any less than 5.5 ounces and he literally screams when the bottle is done because he’s still hungry.. any advice on this front? Could the 6 oz. be part of a problem? He’s 8 weeks today and around 11 lbs..
JacksonsMom2011-09-23 09:36:40

[Anonymous]

Update: Saw a nutritionist (who was useless) and a Pedi GI (today!)

She upped his Zantac (technically I could have done that per the calculations but I couldn’t have refilled the Rx before a certain date.. )

Giving that 7 days. If no help – can move to a Priolsec/Prevacid.

She mentioned Neocate.. but would rather not do that unless we absolutely have to…

[Anonymous]

UPDATE!: After increasing the Zantac did nothing, we started him on omeprazole. I kept him on Zantac for about 10 days during the Prilosec transition, thanks to all of you here and your advice.

I’m THRILLED to say my son is FINALLY starting to become a happy baby. He’s on 5 ml twice a day – right now we just give it to him in his bottle. ideally it could be given 30 minutes before a feed but I can’t always predict that and it’s impossible to get the liquid into him without him spitting it back out.

In any case, he’s smiling and cooing a LOT more. He’s 3 months now, and when he’s cranky we know it’s because he’s overtired or hungry, etc.

Looks like we got lucky… now the real test is how long we keep him on the meds before trying to wean him to see if he is ok without them!

he is still a MAJOR spitter. BUT that might never change, so for now it’s just a laundry issue, which I can handle.

[hellbennt]

yay for good news!

please

report about your Ped GI- the good, the bad, etc. This way you can help someone else who may find this board long after you’ve gone

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

there are recommendations for ped GIs in your area…

also: if you get zegerid 40mg packets (you need a rx) then you can give it at anytime & you don’t have to worry about timing the meds

if your liquid is a compound made at the pharmacy INSIST that they make it up in 2 week batches- TELL them, don’t ask & just SMILE and TELL them to please HUMOUR you…if the pharmacist won’t then TELL the dr (via fax if you have to) that this is how it must be done & to please HUMOUR you & to write the RX this way…please read more:

Prevacid 101:

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

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