Screaming until he turns bright red

[Anonymous]

I just need to vent and cry… My DS is 9 wks old and we are still trying to figure his reflux out. He is on day #4 with prevacid OTC with applesauce (waiting in caracream) 3xdaily. He has very little (happy) waking hours. Then when he throws his crying (screaming) fits of pain I wanna cry right with him. To see my DS in pain breaks my heart like nothing else, and we are trying to make it better for him but we don’t know what exactly will work in the end and it takes 2 weeks to see if it will work. He went from zantac to prevacid compound to prevacid solutab to now prevacid OTC. Oh and not to mention the many formula changes, he is on nutrimigen.

He has an Upper GI scheduled but they couldn’t get us in until May 9th, almost 2 wks from when I scheduled it, WHAT??? And he has an ear infection and sounds so congested that Im worried he has pneumonia. Being a first time mom and all this happening makes me feel like a horrible mother and my mother n law makes me feel that way too… When we are at her house and DS throws a screaming fit of pain she says things like, “oh no honey this is not right, there is something wrong, this isn’t right. Oh honey grandma so sorry, buddy whats wrong…” she just makes it worse and ya duh there is something wrong and we are trying to figure it out, it’s not like Im not trying.

No one knows what it’s like to have a reflux and MSPI child until you go through it and all these seasoned mothers and mother n laws and grandmas want to give me all this info and say “oh maybe he doesnt need all this med in him” well if he didnt have it then he would be in much more pain. AGHHHHHHH Everyone just shut up if you haven’t been through it because you have no idea ( not directed to anyone personal) just venting.

So please if anyone had any advice I would greatly appreciate it.

[Anonymous]

I know what u mean. oh try this, oh just add cereal,oh hes got colic…..I stopped telling people b/c unless they can fix it ,then i dont care what they think. Mean i know but i got tired of the comments too.

I would keep giving him the zantac at least until the gi appt. space the ppi and zantac 4 hours apart. Ask the gi about his formula too. u might want to try elecare/neocate.

[hellbennt]

how much does he weigh? I’ll help you figure out zantac dose.

I would give that, too, until you get things straightened out…

i understand how it is. I also stopped telling relatives about it…

the upper gi is good to see if there are any structural abnormalities. it is not for diagnosing reflux itself. it’s a snapshot in time, so if baby happens not to reflux during the upper GI you might be told that your baby doesn’t have reflux. this is NOT a true statement, as it just means baby wasn’t refluxing at the TIME of the test, not that baby doesn’t have reflux…

the ear infection most likely is from the reflux. my son had lots of them. saline helps. no need to get little noses brand, just buy the adult kind (compare the ingredients just so you see what I mean)- little noses is expensive & it’s the same thing as the store brand adult kind. squirt up baby’s nose at every diaper change. no need to suction anything out (in fact, suctioning can make things worse- irritates inside of nose so that it makes even more mucous) and then let gravity do it’s thing (saline drips out). baby won’t like it but the pressure of the saline going up helps clear things out. Oh boy do I hear you!

[Anonymous]

He weighs 10.6 but I discarded the prescription liquid of zantac and I dont know if the doc will give me a new one.

[Anonymous]

Have you tried different formulas? My son use to cry all the time and seemed to be hungry,, we are now using ready to feed alimentum.. The powder stuff does not work.. Not sure why just a thought.. I so understand what you mean about everyone’s advice that has no idea what your going through,, it gets so frustrating.. My son had a fundalication and a G button placed 6 weeks ago.. He was aspirating cuz of the acid reflux.. I wish you the best of luck and <—-HUGS—->!!

[Anonymous]

How long has he been on Nutramigen? Could it be that he’s still reacting to the milk protein chains in that formula? If it’s been a few weeks and he’s still having problems, then I would ask the GI about Neocate or Elecare, it may be that your LO needs an amino-acid based formula.

My LO also has MSPI (well really MFPI beucase he reacts to egg and tomato too) and at first since I’m BFing him I got a lot of comments too about all the stuff I couldn’t eat, especially during holiday dinners. Some people just don’t get it, don’t let it bother you, you’re doing the best for your baby, be confident in that!

[hellbennt]

TELL dr you need new rx for zantac, don’t 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

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