Posted By Posting
Jun 22, 2010
shine_on_you
Completely refusing to eat
Thank you everybody who responded with info on hypoallergenic formulas/blood in stool. I am in total dispear--for about a months now I have only been able to feed my now 3 months old son in his sleep. And a few days ago he stopped doing that too--just turns his head away and either starts crying or keeps sleeping. He lost 5 ounces in the last 2 weeks. We were in the hospital for 3 days--they hydrated him and started on high dose Zantac--it's been 2 weeks and I see no difference. GI said next step is hypoallergenic formula--I honestly have no idea how I'll get it in my son. GI said he will eat when he is hungry enough no matter what pain he is in--sounds harsh, plus today he honestly went the whole day without eating... I cry all the time and I am very scared of what is to follow... All this in addition to blood in his stool... Anyone who has experienced a complete refusal to eat please help. What other ways to feed can I try? Should I let him go without eating for days and wait for him to get hungry?? I have my follow up with GI this Thursday--any medication suggestions I should ask for? As I said before GI would not prescribe PPI (prevacid)--claims it is not safe for 3 months old. I am so scared of what will happen to my child and feel too depressed to even think logically of what to do. GI says my anxiety is the major cause of my son not eating--I don't even know what to reply--I think any mom would get beside herself if the child was not eating. My poor 4 year old is totally neglected--I spend the whole day trying to somehow force my infant to eat. Sorry for the long post, any advice would be appreciated.
Jun 23, 2010
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Two words; second opinion.
Jun 23, 2010
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Ok, that waasnt helpful, but I get SO mad when I hear about bad doctors! If you're LO has been hospitalized for dehydration your GI should be really working with you to get her eating again. "She'll eat when she's hungry" is something you say about your 6yr old who won't eat his veggies, not a 3 month old who is hospitalized for dehydration. Fire your GI. Not kidding.

My son (my second reflux baby) is a month old and also has blood in his stool. He was super fussy, super reflux-y, just miserable. Things are much MUCH better on EleCare. He takes it just fine even though it smells and tastes like, well, puke. It's gross, no lie. They poop gross on hypoallergenic formula too, but he's SO much happier. My GI recommends adding a packet of splenda for every four ounces of EleCare. I know, I know- chemical sweetener, BUT he drinks it. I'm a vegetarian, organic produce buyin', Birkenstock wearin', long haired hippie chic and if a packet of Splenda makes him take puke flavored formula then that's what I'll do.

As far as the risks of PPI go, I have other opinions. I'd ask the doc what the risks are of not eating, losing weight, being hospitalized and possibly creating a future of oral aversion. My girl was on Prevacid by 3 months and she's shown no ill effects. Lots of the ladies here have/have had their kids on a PPI at a very early age. I do know that the studies have all been done with kids over 1 year, but there's lots of experiential knowledge in the GI community and it's pretty well accepted to write (Rx) a PPI for infants.

Bottom line, when your infant refuses to eat there is a problem. If your GI refuses to address the problem then (IMHO) it's time to find a GI who is willing to help your child. I wish you lots of luck. It's heartwrenching to watch your child suffer. Hang in there and keep pushing for help. This too shall pass (that's my sanity-saving mantra).
Jun 23, 2010
samsam
I usually try to be quiet about these things but I was truly horrified and outraged while reading your post. My mouth was literally hanging open. I agree with the previous response that being told that your baby will eat when hungry is not going to work. My daughter would rather have starved than do something that caused her to writhe in pain. I never thought I would be so desperate as to call her GI and beg for her to be admitted and get an NG tube. Yes it is true that PPIs are not FDA approved for babies yet. Keep in mind, approval could take years if ever and in the meantime your child is suffering. Supposedly the effects of Zantac wear off after a few weeks and only PPIs remain effective long term. Many, many GIs prescribe PPIs for babies. I agree you need to find another GI immediately.
Jun 23, 2010
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.
Just for the record, my son (age 4) still drinks unflavored Neocate (nothing added) and doesn't mind. He got used to it at about 17 mths. of age. We did half & half for a few days, then pure Neocate. I would think your child may eat more if he was out of pain. Either way, I agree that he needs nourishment now & an ng tube (temporarily) may be necessary. Please let us know how you're doing. I remember how hard it was with two other kids being neglected at the time. Guilt, guilt, guilt.
Jun 23, 2010
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.
I also agree that that GI Dr. sounds scary. Are you near a children's hospital?
Jun 23, 2010
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
oh my god...I'm so sorry, but like the others I'm FLOORED by your doctor's comment...my son would starve himself for 10-12 hours...soemtimes I could only get 5 ounces in for a day when things were realy bad...we were sleep feeding, syringe feeding..it was a total nightmare and my son had NO hunger cues...he never cried to eat...never cared. I hope you can start on an elemental formula...we did Elecare for a long time and it helped. Blood in stool is a classic MSPI symptom. Lastly, my son started on Prevacid at about 2 months...your doc...well..needs to NOT be your doctor anymore. I hope you can get in to see someone else. Where are you located??
Jun 23, 2010
shine_on_you
Thank you for responses--I am in suburban Chicago. We have HMO so for second oppinion we need a refferal from primary, plus it will probably take some time to get in--he is not eating NOW--I have a scale at home--he is loosing weight again--we will probably end up in the hospital again. When we were admitted a month ago I was so terrified they will do endoscopy on him or put NG tube--I did not sleep all 4 nights we were there and just nursed him in his sleep all night long--he gained 2 ounces so they discharged us and told us things will get better with Zantac--well, they are worse. I am seeng GI tomorrow--any suggestions re: what I should ask for? If it takes 2 weeks for prevacid to work how do I feed him in the mean time??? At least breast I can try sneaking to him at night hoping he would nurse for at least a minute, when I try the formula he wakes up and screams. They gave me some Alimentum samples--I've been force feeding it to him for 2 days--he'll totally refuse it also. Yesterday he was worn out, so I managed to syringe feed him 1 oz which he immediately threw up.
Jun 23, 2010
shine_on_you
Zack's mom, how long did it take for Elacare to work? Did you try Alimentum/Nutramigen first? I've asked GI if I should go right to Elacare, and he said Alimentum is first choice... I am completely devastated I can not breastfeed him... I've eliminated top 8 allergens from my diet for weeks, but things are just getting worse...
Jun 24, 2010
jan gambino
The Reflux Mom
www.refluxmom.com
Sleep Feeding Ideas
Hello- Sleep feeding seems to be a reaction to pain from reflux. I wrote an article about it a while ago. Here is the link:http://refluxmom.com/?p=123. Sleep feeding a baby is difficult-yet breastfeeding a baby who is sleep feeding is even more challenging. I think some moms end up pumping and refeeding. At least that is my experience. The goal is to reduce the pain so little Danny can eat while he is awake. Sometimes diet and medication are the key. The blood in his stool is worrisome. Often there is a negative behavioral reaction to eating so a feeding therapist may be needed to address any behavioral issues and also assess any oral motor issues. A feeding therapist can also assess feeding and give valuable information to the peds and gi doctor. There is a network of sleep feeding moms so send me an email if you want me to connect you. Jan Gambino The Reflux Mom refluxmom@gmail.com
Jun 24, 2010
adelines mom
i agree to move on from your current doctor. this is where you turn into a VERY aggressive protective mama bear and make them listen to you! our doctor, at our request, put adeline on axid first (this was in the second month) and that worked well for awhile. then we moved to prevacid and that worked well for awhile. then overnight it stopped. then we moved to zantac, that did not work at all! then we moved to compounded prilosec which she has been on for over a year and a half. different drugs work for different children! i would highly recommend reading Beth's book The Reflux Book. Know you don't have time to sit down and read a novel, but i always say her book saved my life. i would read a chapter a day and so would my husband and my sister. we were in the trenches and i know how bad it can be. it really helped to educate me on our situation and opened the door to so many other resources. i have tried a lot of alternative things. took adeline to a chiropractor at 2 months and have been going back about every three months or so. had her by c section. it is amazing to watch her respond to the doctor. she is a non force practioner. she thumps her with this tiny little pogo stick and realigns her. the area along her spine where the stomach muscles connect is her hot spot. think from the reflux. i was and still am willing to try anything to help my child. she has been in a lot of pain. she has had really bad reflux since birth and looking back, she had colic too. have you thought about infant massage? we had a good friend who was a massage therapist and she came over to the house and worked on adeline for us. just trying to throw out any thing out to try to calm him and make him feel better. we are going to see a cranio sacral therapist next week. lorenzomama has recommended this for a long time on this site and know it has helped her son. we also have stayed on a VERY strict schedule since birth. we have fed her at 6:30 a.m., 9:30 a.m., 12:30 p.m., 3:30 p.m., 6:30 p.m., 10:00 p.m., and 2:00 a.m. we eventually dropped the 10:00 p.m. and 2:00 a.m. our baby nurse started this and we have stuck to it and really think the structure/routine helps with reflux! At two years old we are still doing this. we did a barium swallow test on her at about four weeks to make sure there were no blockages. she was refluxing high, but protecting her airway. she did have a poor suck swallow though. we basically had to teach her how to suck. as i said before she choked on my breastmilk and we quickly got her on alimentum. i pumped every three hours for four weeks and froze it and reintroduced it at seven months with her formula. the doctor brown's colic bottles really helped. wanted to point out again about warming the bottle! i kept a noice machine going for the first year in her nursery and we still sleep with it at night. also we use the seventh generation organic diapers and organic lotions. one other thing i have read about is epsom salt baths to calm. we started giving adeline these about two weeks ago and think it is helping to settle her and she is sleeping a little bit better now. run it by your doctor. we did give her mylanta at night. make sure it is aluminum free. can get it a cvs or they can order it for you. think it helped some with break out pain at night. adeline had a lot of gas and we used the dye free mylicon drops from target. think this might have come from the simply thick. we have had her on miralax for constipation for well over a year and a half. it has been a miracle worker. she was straining so hard she would reflux up through her nose. so uncomfortable! i know i have been all over the place in this email, but we have had so many things go in the first two years. don't know if any of the recommendations will help, but you may encounter some of this down the road. i remember nights thinking how am i going to get her to drink this bottle and how am i going to get this to stay down and how in god's name is she going to gain weight. hang in there! good luck and DO NOT TAKE NO FOR AN ANSWER! p.s. when you see your gi, ask them to do a complete metabolic blood workup on your son and see if anything is going on there. also ask him/her to bring a nutritionist on board to help you.
Jun 24, 2010
adelines mom
forgot to add one more thing. when adeline was born she was placed in the progressive care nursery at our hosptial for 10 days. this is a step down from the nic unit. we worked with a wonderful feeding specialist that was employed by the hospital. she came every morning to the nursery to work with our daugther. after we checked out our pediatrican wrote a script for us and we worked with her for the next year. it was great, i could email her all the time. now working with a feeding specialist from early intervention and will probably move on to our local children's hosptial. see if that is available to you.
Jun 24, 2010
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
although we did not try Alimentium, we did try Nutramigen. Zack refused it completely. At least the Elecare he drank...he never LOVED it, but he drank it...and he puked it less (at that point)...The prevacid can take two weeks to work...I would suggest having the doc keep you on Zantac for the interim...they are two different types of reflux meds and can be taken simultaneously. Make sure you ask about timing...they have to be spaced carefully (someone here can help you). We started out on 15mg at a very young age...I would suggest the same dose for your child..he sounds EXACTLY like my son. Now, Prevacid wont stop the puking...it just protects the esophagus so there's no pain...pain management is key. The elemental formula + prevacid is basically covering all your bases...reflux and MSPI. Lastly...are YOU on an elimination diet? If you are drinking dairy or soy or eating it...so is your son..I didn't see if you wrote that somewhere. Oh, and to answer your original question...Elecare helped almost immediately...it didn't fix everything and my son developed an oral aversion, but it was clear that he needed it. I wish I had some left, but I only have the toddler version...for over a year old. Baby Elecare smells like rotten potatoes...it's nasty, but it seems a little better than Alimentium Truth is they are all similar...Alimentium is SImilac's brand, Nutramigen is Enfamil's brand...Elecare is it's own thing....
Jul 02, 2010
jeddsmommy
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
O.M.Gosh My computer's been off...switched internet access and solved it so sorry I'm late to this party.

Let me tell you, Jedd went days and days without eating and now even at 3.5 years old he will gladly still go without eating. as an infant he would have starved himself to death without batting an eyelash.

You really need to get seen by a different GI the first one isn't worth dirt to put it nicely.......BTDT got the t-shirt.

Jedd was taking a PPI at a very young age so it can be done.

For him to say that it is YOUR fault, that is totally acceptable in my opinion and makes me want to march down there are teach him a thing or two about feeding aversions. Jedd was the KING of feeding aversion I think.....LOL

Hopefully by now you are on your road to another GI.

Aug 12, 2010
dcd
So horrified by this post. Your anxiety is the cause of your son's feeding aversion? A 3 month old will eat when he gets hungry enough? I can't believe a real doctor, in 2010, would say these things. I hope you have long-ago fired this jerk and are now working with someone committed to actually HELPING you. Good luck.
Check with your
doctor first!