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My princess is a NICU grad, she was born 8 weeks early and did great, was only in the NICU for a month. But ever since she came home she'd fuss and cry and curl backwards (if that makes any sense) like she was in pain. Her tummy would get hard too, like she's straining. Her face would get red and it would look like she's pooping except she isn't. Sometimes these spells would wake her up at night and sometimes they would go like that for 5-10 minute stretches. I feel so bad because she seems like she's in pain. When she was in the NICU she had a bloody stool and they thought it might be NEC but determined it to be something else (they never pinpointed it) but they put her on Nutramagin and then she refused to eat that so they put her on Enfamil Gentle-ease. And that's when this all started and I thought it was the formula so we went searching for soy formula and had her on Similac Sensitive and that seemed to cure her! Except she was super constipated on that so I put her BACK on Gentle-ease and the cramps started again, so I tried just plain old normal formula, and they still were going on. (All formula changes were done over time. I never had her on one formula for less than a week because I didn't want to mess up her little system)
Sorry this is long but I don't know what else to do, her Pedi thinks it's just gas but I really think it's something more. I'm a younger mom and a first time mom and I think they're brushing off my concerns.
Did this happen to anyone else's LO? Any idea of what I should do next?
Have you tried Alimentum?
Is she on medicine for reflux? (calleigh came home on reflux meds)
The back thing is arching very common with GERD'lings. have you tried gas drops or gripe water?
My GERD'lings both were born early, crystal is 2.5yrs old and was born 8weeks and my newest is Calleigh 22weeks and born 10weeks early
calleigh was on breastmilk the entire time she was in the hospital (7wks) and came home and tested positive for blood in her stool. They gave me two choices. Eat cardboard (nothing milk or soy) to continue breastfeeding or to switch to alimentum (its milk and soy free).
The catch was I would have to stop breastfeeding for 1 week to get all the milk out my system and do formula anyway. After talking to all her doctors and that we decided that it was to much of a shock to go back and forth. So shes on Alimentum. Shes doing better on it but hasn't helped the reflux at all.
Calleigh is on 2 meds daily for reflux.
I would get a referral to a GI. Which they should be able to help you with thru your doctor. They are very well versed in what will help etc. Both my daughters have seen them since coming home..
Are you on WIC? Alimentum will be covered as long as you get a script from the ped.
Also the alimentum is completely broken digested milk protein which is a common cause of bloody stools in babies. Its also Soy free since theres so much debate on good/bad whatever...
YOu have to really push the subject with doctors. I had such a fight with my middle daughter. I noticed it right away in the nicu and kept telling them and they said ohh its because shes premature and blah blah blah. I went to the doctor weekly and complained and nothing. Finally I caught the other doctor who covers wednesday when our ped is off and he sent her for a Scanti Scan and started the GI referal. The scanti scan showed that my daughter had over 100 episodes of reflux in a 45m period that were extending 3/4's the way up everytime. So they immediately called and placed her on reglan (will never do that again) and zantac. It didn't help. The reglan was for her gastric dumping rate. Normal low is 27% and hers was 6%. so the food was just sitting there ready and loaded to come up. When we got to the GI they finally put her on prevacid powder packets, they are strawberry flavored and sadly been discontinued. She was ok but not great, sitting up and moving about was her turn around. Along with us removing the relgan and going to gentle natural ways to get her to go potty. She then did a trail study with our Gi and childrens hospital and it was for nexium. All these drugs are considered off label uses for pediatrics so they go thru trials before they will even think about recommending it. WeLl nexium was our godsend. It has controlled it the best it can for a year now. Then she had tubes and adenoids removed another golden moment. I hate to push push push. I finally told the doctor one day. I said I love my daughter but there are somedays she cries for 12hours and i can't take it anymore and would bring her here and leave. I said I can't see her suffer anymroe. I just can't do it. I broke down in tears sobbing. I felt like the worst mother in the land cause I had such a hard time bonding with her at first because all she did was scream. They finally got more proactive and listened. She has gone thru the ringer and pray everyday that Calleigh my newest daughter doesn't have it so bad but she sadly is starting to act like she is going to. She keeps having meds added and uped to no avail.
Good luck but just don't let it end. if they won't help you. Call your insurance company and tell them you want a referal to a pediatric GI and why and most have like helpers to aid in this. We have someone that calls regularly on if we are happy with our patient care etc.
Thank you Missi for the reply, I hate seeing Danica in so much pain. It's tough overcoming stereotypes, I'm a young, first time mom and they see me as overreacting. I just know my daughter. I never was one to call for nothing, every time I have called them it was for a real and legitimate problem. We have our appointment in ten hours, and I'm hoping and praying we get somewhere this time. I'll definitely post after our appointment!