Posted By Posting
Nov 24, 2008
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
need advice for my cousin's baby
Okay, so my cousin's lo was born with a cleft pallette. She has been convinced for a while that he had reflux but her doc blew her off. They finally dx it last week. They started thickening his formula, prevacid, elevating his matress and keeping him upright after feedings.

He is doing Oklahoma's version of Early Intervention and the therapist said that he probably needs to be on a hypoallergenic formula like neocate. But as most of you know being almost a year old changing formula is almost impossible. So, she would like to try neocate and see if it helps him but not sure if he will take it. If he doesn't do you guys have any suggestions? I have cans of neocate and that is what the doc and therapist suggested. Also, the doc is pushing for her to change to milk even though he is having surgery for his cleft on the 12th or Dec. To me that is too much at once. Plus, she is scared that he will react poorly and it will be worse on him. So, what about rice milk? Does it have the nurtients that he would need? Especially if he is doing liquids only for a couple of weeks after surgery. Sorry so long. I know that you ladies will give some good ideas and advice for her. Thanks! -Amanda

Nov 24, 2008
PAGER Volunteer Services Coordinator
Melina 7/24/02 now reflux free!!
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
If it were my child I would ask about delaying the transition from formula to milk until after he is recovered from surgery. That really means only a month or so, right? What kind of formula is he on right now?
Nov 24, 2008
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
I would wait until after the sx to transition. When she does transition we had luck with doing 1/3 of new to 2/3 of old (if he won't take it). Both of mine took right to it, but I hear that is unusual. Just slowly make the switch. How old is he?
Nov 25, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
She doesn't HAVE to listen to the doctor. They are there as a guidance. there have been MANY MANY times when doctors suggested something to me about Quinn's care that i either ignored or held off because I KNEW she wasn't ready for it. Milk being one. so i would definitely hold off on the transition until after he recovers from surgery. It would be easier so that way if he has any compliations after surgery, they can't blame it on the milk transition.
Nov 25, 2008
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
My son is also in line for a cleft palate repair (next week) and I would not try anything new before a surgery like that. If the baby has an adverse reaction it can delay the surgery and your cousin surely wants it to go ahead as planned. Which doc is pressing for the milk change? The GI or ped? That doc should consult with the plastic surgeon doing the palate repair. If the baby is doing well enough (gaining weight, etc.) to have the surgery, surely a couple of weeks on the old formula should not be an issue.
Nov 29, 2008
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
I agree with baby quinn's mommy - even though MD's act like it's an edict from God himself, it's up to you to decide. I'm doing the milk transition VERY slowly even though I was given the all clear from bother her docs (she still gets 1/2 toddler formula and 1/2 milk at 14 months.) Tell her to listen to the inner voice that is there for a reason!
Check with your
doctor first!