Posted By Posting
Oct 15, 2008
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
Jedd's Mommy~
Thanks for the post. I live in GA. So he said the closest one here is at Emory. He wants me to see the OT w/ her first and then we can all meet as a team and see if we need to take her to this place at Emory. Do you know if insurance covers this type of thing? Basically she was eating like a champ when on regular formula. Solids were like gold to her. Then at just almost 1 year of age-she just went to war w/ food. Now if I give her puffs or crackers-she'll take them but nothing else. And if the food is wet or slimey-she has a fit! (probably the sensory thing) Now even when it's time to go into the highchair she knows what's coming and she starts crying. I never "force" her to eat but I can't say that I feel "great" when she won't eat. So I'm sure she senses that too. I've tried eating it first and then seeing if she'd eat but nope. She might do "ok" for one week and then the next two-three weeks she won't eat barely anything. She won't even eat if it's on OUR plate. She use to eat bananas (those are not dry!) but now she won't touch them either. She wants it instantly off her tray. I just don't get how she use to eat all the time and now she won't feed herself OR let us feed her. We eat together as a family each night but now that's strained because she refuses to eat and she doesn't want to be in her highchair. She use to like sweet potatoes so last night I made some myself and baked some chicken and used my food mill to combine it and gosh it tasted great to me but she wouldn't even try it. :(
Oct 15, 2008
alex's mom
Alex was dx with silent reflux at 3 weeks old. Previously on Prevacid SoluTabs 15mg daily, now on trial of no medication. Was thought to have oral aversion, saw feeding specialist who says he's just not interested in food--no aversion at all. Slowly coming around to food. 15 months, 19lbs, 7 oz.
Hi. I just wanted to let you know that we are currently going through the same thing with my son, Alex. He just turned 1 yo. He never ate like a champ previously but at least he ate and took more formula and everything was less of a battle. I have tried literally the exact same things you have done (with others feeding him, with different foods, with feeding myself first, with toys/TV as distractions, then no distractions). I've tried to "relax" during feedings but it's hard when you feel helpless and your LO won't eat. I'm sure Alex can tell that I'm not happy. Sigh. I have more bad days then good. I feel your pain and heartache. I've cried at least once everyday! :( I, too, don't understand the slow decline in food intake. I can't tell if it's what I'm offering and he doesn't like it, or if I'm feeding him too often (how can that be when he doesn't eat), or if his reflux is really not under control. I"m pulling out my hair. He likes the "junk food" more and will eat puffs and crackers. On a good day, I can get mac and cheese in but not lately. I"m struggling with what to do as well. I have tried not to "force" feed but my husband thinks that my constant offering does not help. We are looking into OT that specifically treats oral aversion. My fear is that things will get a lot worse before they get better. I just hope therapy will help and not make things worse. Sigh. Our GI doc thinks we will need a G tube long term if things don't improve. You will be in my thoughts. Please let me know how things go. I can give you my email and we can be in touch since our kids are almost mirror images.
Oct 15, 2008
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Just popping in to say I FEEL FOR YOU! Elyse's whole life has been a battle with eating/drinking. She has never ever been an easy one for breastmilk or formula (or any other milk-like substance either). When she was on babyfood (purees) she did SO GOOD. We felt like she ate a ton even though it still wasn't how much she was "supposed" to eat. Around a year she stopped wanting purees. For a long time it felt like she subsisted on cheese sticks and cheerios.

Also around a year, she started drinking less and less formula. She is literally down to 0-6 ounces or so a day, usually about 3 (we offer formula usually only twice a day now). She does not hold her own bottle although we know she can because she has before. We had to start giving her juice/water to keep her hydrated.

We go thru food roller coasters with her. She has gone a week before with eating/drinking almost nothing. Then the next week she will eat all day long. I hope it is just an age thing for Sadie and that she won't need therapy. I remember it was stinkin' HARD to find things for her to eat when she was making that transition from puree to foods with more texture. Oh, and another thing we found around that age was that she REFUSED to let us feed her, and would no longer finger-feed...she wanted a spoon and fork. Even though she was not very successful at first, we let her have a toddler spoon and fork because at least some would get to her mouth! Try that if you have not already. We were shocked that she wanted to use a spoon and fork at an adjusted age of only 10 months! They want to be so independent at this time in their life!

Oct 15, 2008
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site:
The best ones would be Richmond or KKI in Baltimore. I"m pretty sure you'd have to fail at the one closest to you first. Then you would really have to fight to see a different one.

I would set up an eval at the one near you and see how it goes. It may be a sensory thing. Some kids just don't like the "feel" of solids inside their mouth and then prefer to be fed liquids. They have to be taught to "tolerate" the feel. I think there is some thing called Sensory Processing Disorder.

I don't know alot about it but I know some kids who have it have eating issues just because they don't like the feel.

Don't despair!!!!!!! Clinics really can do a tremndous job!!!!! They really can. They also teach YOU how to deal with issues as they arise after you get home. And also teach you how to continue the work at home.

As far as insurance co, well that depends. Some really really don't like to approve them, and then you have a fight on your hands. We are just starting the process so we don't know if we have been denied yet. I know that the clinic we are going to will write letters and do calling to help on their end with getting approval. Sometimes it's just a matter of getting the wording correct.

We are FULLY expecting to be denied because of our ins. co. track record with denying Jedd's medical equiptment and past testing. But like always, we jump through the right hoops and will eventually get it approved.

To further help our cause we have been doing OT twice per week at home to help "prove" that Jedd needs something MORE than what we have been doing. Does that make sense...LOL We now get it once per week but our sessions are twice as long. New co. policy we had NO choice but to do that type of session.

Yes we have made progress at home but it has been a full YEAR in the making and Jedd is still only on purees and liquids and he wont' self feed th epurees and will not suck up on the liquids. Yes, we've made progress but NO where near what could be made at a clinic.

Hope this helps, le tme k now if you have more questions.

Oct 15, 2008
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
Ok, just popping in here to provide my probably unwanted opinion. As you know, we are going thru the same thing. some days are better than others. but i swear it seems like he eats nothing at all some days and other days he eats a minimal amount.. mostly foods like crackers and stuff. like for example, the other night he wouldnt touch the carrots and chicken i made. well, i put it on top of crackers spread it with cheese (laughing cow) and he ate the whole darn thing! oh, and if i feed him while he is walking around the living room he will eat a TON.. i think mine is just a busy body who'd rather not stop to eat.

i really truly think this is a normal picky toddler thing. and their requirements go way down because they dont grow as much in the 2nd year. now, for someone with a 17.5 pound 1 year old i REALLY want him to eat. So much so that i'm really lax with his eating habits.. i'll give him cookies even if he doesnt finish his meal. well, they are organic fig newtons :)

however, i've done so much reading on it.. i get confused. some doctors/experts (including our own pedi) say they need less than you think. in fact, the guy who wrote touchpoints said that the "minimal" toddler daily diet is :

18 ounces of dairy, 4 ounces of OJ or other calcium fortified juice, and 2 ounces of iron fortified grains. and do not even try veggies cause most kids just hate them.. he said to not expect most kids to eat like "adults" until the age of 4!! AND he said that priorty #1 in the second year is exploration & mobility and that priorty #2 is food. we probably have a hard time coping with that because most people love food.. and even overeat, really.

other information i've found says that they need 1000 calories a day AND that they should eat hard boiled eggs and 3 servings of veggies. my mom laughed at that information. mabye the people who write those guide lines are the freaks in the labs who dont know anything and put out information just to scare us!!

i stress every day. today, coy ate a good breakfast a crap lunch and an okay dinner. he usually eats good @ snack times. but, he pooped 3 times. so, he must be getting enough food to Poop it out! kwim...

then there is the 27 pound 11 mo. old across the street who ate an ENTIRE happy meal this evening..yes, the ENTIRE happy meal!!

so, is she pooping? how much milk is she drinking? is she still constipated? is she eating more @ snack times then you realize?? how is her weight? maybe you can pop in for a quick weight check and a talk with the nurse practioner? is she still puking?
Oct 15, 2008
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
Sadie, Katie refuses to eat anything that is slimy. We saw the developmentalist today ( I will post) and he said it is related to her GERD and that she has learned that food is not her friends and that hopefully with time and some OT she may get over it. Also, Katie has some sensory issues which I will go into later. HUGS!
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