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Sep 30, 2008
elysabethsmom
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
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Who would have thought (LOOOONG)
...that feeding your child could be so traumatizing and stressful. Today Elyse is 16 months old, which means for 16 months I have been fighting to get her to eat and drink. The past 6 days have been torture. Last Thursday she almost flat out quit eating and drinking again. She hit her all time formula low today, of one ounce.

It would not bother me so much if she would drink enough water or juice or really anything else to make up for it. But 6-10 ounces in a day of total liquid intake seems not okay to me, especially when she stopped eating on top of it. Cheese sticks used to be the only thing we can count on, and she won't eat those now. She won't eat a cookie, or a popsicle, or anything else we have tried that is "junky" so I know it is not that she is just being difficult about healthy foods.

I am really worried about what the winter might bring. When she gets sick it is pure torture getting her to drink, and right now it is even HARDER. She used to drink pedialyte and now she won't touch it; that was how we got her thru illnesses.

I am sooo depressed over this. I tend to not worry over the not eating part of it, but I always worry a lot about not drinking, and the combo scares the crap outta me. i realize it could be teething or whatever, but she has also been silent refluxing more (I notice her swallowing and swallowing sometimes) so I am going to call the GI tomorrow and ask about going back on prevacid for a few weeks so see if it makes any difference. Sorry I am always on here complaining about ELyse's "Drinking problem". I don't know what to do. She is too young for it to be a behavioral feeding issue according to research on feeding disorders, but she is getting close to the age where it can easily become behavioral if the medical aspect of it is not resolved. (I took a feeding class for SLPs and we were told that 16-18 months is the time when the issue becomes behavioral, because that is the point when the child is cognitively able to control his eating).

Oct 01, 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
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How is she growing? how is her development? if those seem to be ok, picky eating is not uncommon at this age. I always bring up my little nephew, but that's because he is a big part of my life and he seems to eat less than a freakin bird! My little nephew is the tiniest two year old EVER!!!! He doesn't eat a darn thing! I always try to feed him. We always try little tactics to get him to eat. He just won't eat more than a few bites, but if it's something he likes, he will eat about half of what a kid his age should eat. But he grows... very slowly, which is to be expected with how much he eats. I still cannot understand how on earth he is not really, really sick given how little he eats. Quinn used to eat more than he does, but it still was not enough for her to survive on. She didn't eat much, but it was more than he eats now and she was still in the hospital for malnutrition, dehydration, underweight and she would get really sick from it. So I guess in my opinion, given what we see with our nephew, if she is growing... even if it is slow and she is developing normally, it probably isn't too big of a deal until her health starts to take a toll. What we do for my little nephew is we give him something to eat in the morning with 4 ounces of milk. If he doesn't eat it all, he only gets water until lunch. We try to see if he will eat lunch and juice and if he doesn't eat lunch, he only gets water. We sit him down to eat his goldfish or snack and give him some juice and if he doesn't or does eat it all, that doesn't matter. Then at dinner, we try to feed him again and if he doesn't eat, then he doesn't get anything, no snack, no milk, nothing but 2 ounces of water until bedtime. We just started doing this recently so not much to report. He is still a really picky eater, but he has NO reason for him not to eat. He is healthy in every other way so i think his hunger should drive him to eat a bit more at mealtimes. if this doesn't work, we will have to come up with something else, but perhaps you can try that with Elyse??? I'm just sharing my experience with my VERY picky nephew. -Sarah
Oct 01, 2008
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Sorry she isn't eating or drinking for you right now. I hope the Prevacid helps her. If she is silent refluxing a lot it could be causing her pain and therefore making her not want to eat. Whatever it is I hope it works itself out soon. I totally understand the worry. No need to apologize for venting here. You aren't complaining you are just talking about life and we all understand that here. So vent away anytime. Hope the GI has some good ideas for you tomorrow. Maybe Carafate until the Prevacid kicks in?
Oct 01, 2008
engin117
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I am sorry you are having such a hard time. It is very discouraging, but you are a strong woman as you have proved these last 16 months. I am sorry I can't provide much for you., but I will tell u what I can.

Meggy goes through these stages too. She picks one favorite juice and one favorite food to eat at a time until she is bored with it. She doesn't want anything else during this time. Sometimes it can take hours to get a couple ounces of food into her. Sometimes she also has this swallowing. She seems in pain a lot and refuses to eat. Sometimes she cries at the mere sight of food.

We were told over and over it was reflux till the last endoscopy when reflux was ruled out. I often notice a visible spasm in her tummy, then hear the loud gulping sound and she screams and screams. John Hopkins told us she may have reflux but if she does it is secondary for sure. The GI says it is not a pyloric spasm! Then, what is it?

When I look up the symptoms and watch my daughter, I am curious if her stomach muscles are coordinated with her throat muscles. It seems the esophagus is trying to push the food down while the stomach is pushing it up.

She had an abdominal x-ray a few days ago. It says normal, but I question the report. I am not a radiologist so I don't really know but something looks off. you can see some loops in the intestine area, and what looks to be air all in the chest area. I know u have heard the story enough, sorry, just hope I can say something to help.

We were given hope at John Hopkins when they told us even the pain is allergy related. They said if we can figure out her allergies and totally eliminate them, it might make a difference. The allergist informed us that even one grain of the wrong food can cause pure misery.

I know I keep saying this over and over again, but all of the things u mention being her favorites have corn in them, unless you have gone out of your way to find special foods for her. It is in most everything. It is hard to find enough to eat without.

Have you tried completely and totally eliminating her allergy foods or intolerance food from her diet? I know this is no easy task.

We found rice spagetti, rice protein powder to make shakes, rice based breads, then we give meats, vegetables, and fruits. It is not much variety, but it keeps her allergy foods away. The spagetti sauce however is questionable as it list spices as an ingredient-hmm-bet they contain something she shouldn't have.

We were going to whole foods store, but there is no gas and it is 15 miles away.

Can u tell me more about her current meds and formula? Is it possible that the dairy she is on is causing enough pain to make her not want to eat? When was her last endoscopy with biopsy?

When the doc. told us that Megan's problems are behavioral (she was 3 months old.) I thought yes they are, she learns food hurts more than hunger pains and stops eating. I thought more about it and know if everything that went into my mouth caused pure misery, I would be hesitant to eat too.

We re-examine Meggy's diet every day to make sure we haven't missed ingredients. Not sure we have made progress yet, but it takes time.

Wishing you the best.

Thinking about you

Engi

Oct 01, 2008
elysabethsmom
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
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Sarah, she is growing fine right now. i worry about the not drinking part of it. We leave different kinds of cups all over the house now for her. She is offered 3 meals a day and usually 2 snacks. We offer a variety of foods/drinks (she will drink water and different juices, nothing else). I know kids can be extremely picky at this age, but it seems extreme that she won't touch her fave foods. thank you for sharing about your nephew being fine while not eating much. If Elyse would freely drink water thruout the day that would be fine with me, but she does NOT.

I have thought for the past few months that with all my worrying, she is still fine, and that her body must run totally efficiently on half of what all the books say she should eat/drink. She will be in trouble weight-wise if she ever starts liking to eat a normal amount! Just freaked about the not drinking. I reviewed all the signs of dehydration and she is not lethargic and still has a wet mouth. I could go the whole day not changing her diaper if I waited for it to get "full" though...she is still peeing but a very small amount.

Mary, we tried carafate several months ago when she was spitting up trace amounts of blood. It didn't change anything (and it is stinkin' hard to time around eating!) so she was taken off of it after her endoscopy in January showed no damage. thank you for your input!

Oct 01, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
I'm sorry things are so tough right now with Elyse and eating/drinking. You two have been through so much over the past year and a half, and I know how difficult it can be to face the fears that there may be more challenges ahead. Parenting is the biggest leap of faith ever, the biggest balancing act, the best proof that the human heart can open and love in spite of everything. While it is probably best to try address what you know, and minimize the worry about what you don't know, a mother's worry and concern exists for the survival of the child. It is our innate ability to notice and be concerned about our children that allows us to notice and intuitively understand problems before they become dangerous. Celebrate your worry, if you can -- make friends with it, invite it to sit with you and share what it has to say, and trust your mama instincts to let you know if it is time to tell it to leave you alone, or if it is time to act on what it tells you... ((HUGS))
Oct 01, 2008
mom2coy
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.
I'm so sorry that you are going thru this right now. I wish that I could be of more help. I understand your worries and frustrations. :( hugs
Oct 01, 2008
jedd'smommy
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: www.caringbridge.org/visit/jedd
I am soo sorry Sharon. HUGS feeding issues are soo stressful aren't they???

IMHO I don't think she is too young for a clinic. Even if she is by the time you get all the paperwork done and get apporved and wait your turn on the waiting list, she will be plenty old enough.

Also, and please don't get mad at me for saying this, but her not taking in nutrition will make her weak which in turn will make her NOT want to eat more. Hence the reason why some kids end up on tubes. She needs to build up her strength and the only way to do that would be to eat or drink whenther orally or by tube.

Have they discussed doing one??? I would think that with a feeding issue that has gone on that long and is currently having intakes of 1oz per day, that it would be critical to get something in her even if the NG is used short term for a few days to see if that will get her srength back to eat.

A tube can also take the stress off of an already very stressful situation. You could feed her orally and then whatever she didn't take could go in the tube.

Just a thought.

Oct 01, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Keep track of the total oz.s she drinks for a few days & what she eats too & definately discuss with the GI or pediatrican. This shouldn't be all on you. We aren't the trained "professionals" (not that I put much faith in them). Someone should be able to tell you what to do in this case. Ellen
Oct 01, 2008
elysabethsmom
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
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Hey jessica, I probably made it sounds worse than it is, i was extremely stressed when i wrote that....she is picking at foods again now, and the one ounce was her formula intake, not total liquid for the day. There has been no mention of ng since she was 3 months old, and I don't think anyone thinks her eating/drinking issues are bad enough for a clinic. I feel kind of stupid bc I am a SLP and I should know what to do, but it is not my specialty. I am reading a book right now about medical/behavioral feeding issues in the hope that it will give me some ideas. I know that a tube can take off a LOT of stress, I can't tell you how many times I have wished for a ng tube . I also wonder if she can feel my stress, even when she was a newborn, and if that makes the problem worse.

As far as being weak from not eating, this girl is one of the most active children you will ever see. She is constantly running around doing things and is not acting weak or lethargic at all. Everyone thinks she looks totally normal and I bet some of my family members think i am insane for being so worried because she looks FINE.

Engi, thank you for your input. It does not seem to me that she is in pain, but maybe she just puts up with it if she is bc she has been in so much worse pain. I never thought about the dairy, etc causing problems still because she usually doesn't throw it up anymore. i guess I thought that if she stopped throwing up it meant she was tolerating it. She has eaten corn kernals a few times now and seemed fine (used to get a bad rash) and seems to tolerate corn products as well. Wouldn't I see some kind of reaction if there were a problem? She had an endoscopy with biopsy in Jan which came up with nothing and the GI felt that all her issues are caused by reflux. For meggy i wonder if you can get a second opinion on radiology? Since you are seeing wierd stuff? For Elyse they just showed the same films to another radiologist and he was able to dx her without doing any extra testing. He was a pedi radiologist so he was more experienced I guess at seeing things in a tiny body.

Part of me wonders if the recent issue with E is all teeth-related. Like, she was already reluctant to eat, and with teething troubles it makes it 100x worse?

Lorenzosmom, thank you for your input about mommy intuition!

Oct 01, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
My friend who has the preemie around Elyse's age could always count on her daughter to eat like a moose. But all of a sudden, she is gettins super picky and drastically reducing her food intake. Not sure why, but it is starting to drive my friend nuts. She totally thinks it could be behavioral, as the baby is asserting her ground in many other ways, too. I realize this is not a help at all - I am sorry! I"ll jsut send hugs instead. HUGS!
Oct 01, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Meggy was on the weak side yesterday. We took a 10 ml syringe and gave her full fat coconut milk. She took 2 syringes like this. Not much, but 160 cals and enough to give her the strength for the day and to eat more.

She thought it was medicine which she will usually take other than Zantac.

Oct 01, 2008
katiesmommy
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!
HUGS!!!!!!
Check with your
doctor first!