hi holly,

i'm glad you found this website, too, bcse i know how i felt when i found it!

has your dr. ever mentioned carafate? this coats & soothes their poor little throats & tummies...i'm sure there's a thread about it...it has helped jonah in 'times of need.'

we also used zantac along w/ the prilosec (& now the prevacid!).  yes, the usual full dose; you just have to space out the doses at least 2hrs a part. ask your dr.  also, i give the zantac w/ mylanta- there's a thread about this,too.

yes! jonah does those abdominal crunches! i know nothing about it.  however, it could be a way of moving their bodies to adjust themselves to tolerate any pain/discomfort they may have- that's the theory behind sandifer's- that the movements help them to deal w/ pain...

i finally go places w/ jonah bcse for the most part his reflux is under control, thank goodness! i make sure i always have zantac & mylant w/ me (i just fill up a syringe full of each, roll them up in a paper towel, tape it shut & stick it in my purse. i administer the syringes by 1st getting him started sucking on a pacifier, then pulling it out of his mouth, then squirting some in, then back w/ the pacifier,etc, until he's gotten his meds...i'm always prepared that we may have to cut an outing short & just head home if he starts shrieking...he's actually really good in the mornings, so that's when i try & get something done. just these past coupla weeks i've joined a moms group & an infant massage class. i feel so brave, lol.

i posted these posts about 'babywearing':

http://www.infantreflux.org/forum/forum_posts.asp?TID=358&KW=baby+wearing

http://www.infantreflux.org/forum/forum_posts.asp?TID=381&KW=hellbennt

hope this helps!

~laura

ps: when's Sierra's birthday? could you put it in your signature? i can't keep track & i'm always curious about the ages of our babies!

 

 

 

holly,

our little ones are 2 days apart!

if you find anything out about the crunches, let me know! i just thought it was gas, or him straining for a bowel movement, or just flexing those neck & stomach muscles. who knows?

you're lucky she's not crying! oh my god, jonah shrieked & shrieked, we used to say,"who's boiling the baby!?" he'd go on for HOURS and he even made himself hoarse once. it was pitiful. that's when i got on the phone & asked for more meds- he was on only zantac at the time (after being on pepsid & reglan).

now that he's been on the PPIs i haven't really noticed as much reflux that bothers him, unless it's an "attack." then, he screams in pain. he's actually quite a happy baby when his meds are working. it's sad but i really didn't see him happy until he was on the prilosec- he started aug. 23rd & on sept. 4rth we had a new Jonah. i know though, from this board we're some of the lucky ones...

now as far as reflux, that doesn't bother him, yes, i do notice it. it's what my husband & i call "glunks." it may be what others say is a 'wet hiccup' but, to us, we hear this wet sloshing sound deep in his belly and it sounds like "glunk." In the past, w/o the PPIs, the 'glunks' would send him off into a FIT no matter what.  Now, when we hear them we get worried bcse they may or may not send him off into a fit.  when they do, that's what i call an "acid attack."

lying on his back for to long can make him have an acid attack, as can crying too much. or, he can just have one out of the blue. it's too bad they can't realize that if they could just calm down, they'd feel better...but they're babies... & so he'll cry, get all 'glunky' then cry even more bcse it hurts & then it just escalates from there...that's when i pop him in the pouch, stick a pacifier in his mouth & just walk around...

eating as a discomfort: luckily, not too much, really. he'll whimper on the breast from time to time & then pull off, but he gets back to eating.  eating soothes him. he can eat a lot.

Sandifer's: from what i understand it's a result of the pain. so, if they're feeling better, they shouldn't exibit those behaviors. i haven't seen any back arching in quite a while! i use the sandifer symptoms as a barometer to see if he's doing ok. those, & the acid attacks!when i ask for more meds i mention that i see sandifer symptoms, more than i had when he first stared the original dose...currently i see him do his 'tic-dance-trance' after eating very rarely. it scares me, not bcse of the neurological aspects, but bcse i think "oh no, here we go again...time to adjust meds... and, in the meantime, how many hours of screaming will we have to face?"

outgrowing this: who knows? at birth they said, "oh 3 months or so" but i think that's just to calm us down! then comes "6 months or so."  it depends on the each individual. i'm prepared to have this go on for quite some time, BUT with the knowledge that it can be managed. yay for this board!!! (my husband is convinced it will magically go away at 6 months, so i don't argue...i just say something like whatever it is, we'll make sure he gets the right medication...)

To wrap this up:

IT DOES GET BETTER!!!!!!!!!!!

~laura

 

holly,

i'm glad to have info to help others, as others have really helped me here!

you know, funny how the mind works, but i realized while in bed last night that our name for the 'glunks,' described above, is actually 'GLERKS', lol .  I knew something didn't sound right...just substitute 'GLERK' for everything i typed above. ( There are 'Glunks', which are 'harder' and more like lower belly contractions/hiccups. they don't happen as often as the 'glerks.') jeesh i don't mean to get everyone all confused...i'm cracking myself up! gotta have a sense of humour! my husband & i say things like "he's glerking again" & "jonah McGlerkin"  then it's off to the zantac/mylanta combo...

jonah does cough, like a small little almost-choking sound, which startles me, but doesn't seem to bother him.

his voice is fine, although i've read that the acid can affect the vocal cords...it goes up & can get into the whole respiratory system- i think others have posted about coughs, ear infections, etc. w/ their GERDlings...

how sad for Sierra's little voice!  please post whatever info you learn about reflux & vocal chords.

& hope you enjoy your Adjustable Fleece Pouch!

~laura

Help....I know it hs been awile but I had bad night last night with Sierra. She is really pulling forward with those crunches and I can hear her straining...when she wakes up from a reflux attack I watch her and she starts to cruch forward even in her sling! Her little face gets red and I know she is not doing it just to practice sitting up etc. Its almost as if it was beyand her control. She does not cry but it takes over and she cant do anytign but strain and grunt. We had two really good days on the prilosec wich we upped to 15mg per day...she is 17 lbs. But its like out of the blue she starts to reflux so strong and constant that she wakes up and cannot sleep. I slep on the floor in her room and can hear the whole thing start..her poor head swings side to side(bald spot) and she holds ber breath for a second as the reflux event happens. I was up since two last night trying to get her to calm down. She does not cry but she writhes and pants...her respirations get faster...doe you know what i mean?
I am having a hard time decideing if Sierra needs more medicine because she rarely cries...she will cry out in her sleep once in awhile when teh relux goes on for too long but not during the day...so if shes "just uncomfortable...panting writhing and not smiling and talking is that still a good day.....is crying the meaure. What do we settle for when we say a reflux baby is having a "good day?"
Also the prilosec in still in a bicarb solution....7,5mg/ml so she gets 2ml per day...should i be givig that all at once or in two doses ?

i know this is alot but i am feeling overwhelmed and stumped once again!
hope to hear soon
holly

holly,

wow. the holding of breath is apnea. jonah did this at birth & turned blue (more than once) during his observation period in the nursery, so that's how we found out he had silent reflux. it was explained to us that they hold their breath bcse of the pain & maybe even to protect their lungs, the acid could come up that far!

i'm not sure if i'd go by crying as a measure of the prilosec working...i'd use the other symptoms you've described; clearly sierra is extremely uncomfortable ...

jonah was maxed out on 16mg of prilosec per day and he was only 12lbs then.  he's now 14 lbs & on 17.5 mg a day of prevacid (& i'm going to ask for an increased dose bcse he was given this current dose at 13lbs or so) ...AND we've always continued w/ the zantac, too...

kirsten wrote: "I have to tell you that by getting Sierra on the proper meds and proper dosage such as Prevacid compounded with either choco or caracreme base, it will completely make all the difference in the world!!!  That was what we called the 'miracle drug' of our house & sanity saver!!!!"

AMEN TO THAT!!!!!!!!!

hang in there,

~laura