My baby has never been very chubby but very happy and full of energy. I feel that he has become weak. Also in the very first week after his birth he was so active that he would turn/flip on his sides...now he is five months old and he refuses to flip on his sides, he hates tummy time too.
I am hoping for the best and hoping to get my happy and energetic child back.
Hi,
I am sorry you are going through this. I have done much studies on health and food over the past 5 years and strongly feel foods are definitely playing a part. You mentioned breast feeding...it would lead me to believe the foods you're ingesting may be irritating Avin's little belly through your breastmilk. If breast milk is your 1st choice I personally would change my diet as such....remove pork products and shellfish of any kind...including shrimp, lobster, crab etc. If it doesn't have scales AND fins I wouldn't eat it. Then, I would completely eliminate vinegar intake...being sure to read all salad dressing labels, ketchup, mustard, pickled products etc... I would remove all caffeine from my diet..sodas, coffees, teas (including green & black), and chocolate. I would also remove dairy products...milk, eggs, cheese etc.. and substitute with soy products. I am assuming you already don't smoke and drink since you are breastfeeding :) If you are substituting with a formula I personally would ONLY be using a soy based formula free from any dairy...whey or caseine. It should only be soy based.
Then, I also wanted to mention my Pediatrician's son was showing similar signs like your little Avin. She took him to a Cranial-Sacral Massage Therapist and after a few treatments he was much, much, much better. They feel the delivery process shifted some things in his body that needed to be gently shifted back. Avin may be experiencing pain by delivery induced mis-alignment. I am also a Massage Therapist and maybe massaging Avin real gently and softly would soothe him as well. Use a very lightly scented or unscented lotion to prevent friction from skin to skin contact.
I know the above dietary changes may be very difficult at first. There are many substitutes out there for the items you are removing from your diet. They have soymilk and soy yogurts. Eating more nuts and beans can give you the protein requirements. Many grains have good protein counts as well. The dairy, caffeine, pork and any fish without scales and fins I would completely avoid at all costs, and of course smoking and drinking alcohol. Tofu is a great substitute for calcium and eat more dark green veggies and pack in the fruits. Be sure to drink plenty of water too :) If you are faithful with the diet change and look into Cranial-Sacral Therapy I sincerely believe little Avin will become more energetic and not be so lathargic. Also, I would look into what an acupuncturist could do for your precious Avin too. They may be able to pin point immediately what is going on inside Avin's body. They have been trained to feel pulses throughout the body and look at the tongue to see color differentiations. These different "checks" can help them see the "health" of each organ in the body. They may be able to see what Avin's stomach organ is going through and why reflux is happening. Please search out other options for little Avin.
I must also say....if it were me, I would completely remove all the acid reflux meds. I would use many other different natural steps as possible until the right one is found. We are talking about a little tiny baby that has not abused his belly with years and years of abuse from bad eating habits. The food he is ingesting is causing these symptoms...these are just signs something isn't jiving with Avin's body. Taking medications will only cover/hide the symptoms and cause more problems later on.
I can see you are very concerned and such a loving Mom. I am giving you honest, sincere information that can help lead you to make a more informative decision. I will be praying for you and your family for health.
A fellow Mom and Natural Healthcare Provider 
Dear Sonja,
I was just telling my husband about your situation as I handed my little Frankie to him so I can write you, and his comment was " sounds familiar". I dont know how to help you but I would like to share our story and hope you'd know that you are not alone.
Our story is very much similar to yours, our little one started to refuse to eat at 5 wks and dx with Gerd at 5 1/2 mos. To make the story short, he went from breast, to bottle, to tube.
Frankie trained us to feed him while he is tired and dosing off, then to feed him while it is extremely quiet and dark (in the closet) while he is sleeping. The feeding got more and more difficult as time goes by. My whole entire day was spending on getting him to sleep so he can eat, to deprive him from sleep so he could sleep during the next feeding. I didn't mind all the work except sometimes I spent an hour in the dark closet and couldn't get him to eat. As time goes by, it was more and more difficult feeding Frankie. I was losing my mind. I extended my maternity leave to 9 months and my husband had to take off of work occasionally to help me care for him. The GI peds considered NG tube if condition doesn't get better. The thought of putting a tube in him really scared me, I cant believe that my baby is that sick. When he skipped 2-3 feedings a day, he had decided for us that he needed the tube. I was so sad when we took him to the hospital to have it installed, I asked my husband what we have done so wrong that it could be this bad.......Well, it has been 2 1/2 wks since the tube is in. We would offer Frankie the bottle, what ever he doesn't finish would go in the tube. If he refuse the bottle, dont cry and pull out your hair, we just put it in the tube. If he's not sleeping, we'd offer the bottle anyway although he wouldn't drink any of it and feed him solid while the tube is pumping. He had gained 1 1/2 lbs since. I cant say that the tube is all good, he is a little uncomfortable ( not too much as I thought it would be), there's more things to be washed, and he may eat even less by mouth. But for now, it is the best solution we could have. Also, it really helps if you to have another person helping you with the feeding if your baby is as difficult baby. My uncle is arriving from Vietnam on Christmas to help me care for our son for a few months so we are looking foward to better food, more exercise, cleaner house.....
We wish you best of luck. Take good care of yourself so you can care for your little one. Happy Holidays.
Hello Frankie's Mom,
Thank you so much for sharing your GERD story. I think it will help other parents to keep searching for a treatment plan that works. I am so glad that Frankie is responding to the tube feeding and that you can spend more time being his mommy.
Best wishes,
Jan Gambino
The Reflux Mom
Dear Jan,
I'm sorry I haven't had the time to keep in touch. It's been a tough week for us. Frankie has been feeling really bad and is eating less and less by mouth. You are right, the tube has become our best friend. We are planning to see the OT after the holidays. Sonja has mentioned a place in Paulo Alto and I'm hoping to get there feedback.
btw, congradulations on the publishment of your book. We will get one for ourselves. Happy holidays. Take care.
Frankie's mom
Hello All,
I am so happy to have found this page. Let me say first that I am so sorry to hear about everyone's struggles with feeding. I cried as I read these stories, my son is going through something similiar now.
I feel as though there is no help out there. My story takes a slightly different turn in the recent days... but my son does sleep feed as well. My son is now 5 months old. At 6 weeks he started refusing the breast AND bottle. I have always had a low supply and he has been supplemented with formula on and off since birth. I am one of those mom's that will take my child to the ped's office twice a week --- so needless to say, Gavin was diagnosed with GERD by 9 weeks =- something just wasn't right. Soon after that Gavin lost a significant about of weight and we also began seeing blood in his diapers. He re-gained his weight quickly and we continued with Reflux medicine (zantac and carafate) things did not get better ... so I took my son and myself to the peds GI angainst my pediatrician's advice.. they started prevacid and carafate (got rid of the zantac) . At the same time I removed all milk and soy from my diet and his formula switched to Nutramigen - partially hypoallergenic.
So for a little while we continued like this.... making no progress. Feedings were horrible some days he wouldn't eat at all and others it was a complete struggle, biting, scratching, screaming bloodcurtleing cries, arching etc. All the while i felt compelled to continue to pump and feed him pumped breastmilk and actually at 5 months am still doiing this. Soon, we learned that Gavin would eat while asleep! I was relieved at first because I was like "thank god he's getting the amount of calories he needs now." But as time is progressing I am feeling more and more bogged down by having to get him to fall asleep inorder to eat. Every two hours I pump, get him all bundled up, put him in his carseat, drive until he falls asleep and then I pull over to feed him. My life literally revolves around feeding him.
Recently, the GI doc switched meds around... he's now on Carafate, zantac and prevacid and we considered Reglan... but decided against it b/c the doc actually said she feels like the acid supressive therapy she used has been aggressive and he has not responded and the blood in his stools has returned. She feels like it is probably an eosinophilic gastro condition. (more allergies) So i am on a total elimination diet - eating only turkey, rice, and yellow zuccini and his formula has been switched to a very expensive amino acid based one. So again, even more now, I feel compelled to feed breast milk because of the cost of this formula. ($44/14oz can)
My fiance and I feel we've seen some improvements in the past few days. He actually ate a whole bottle while he was awake and his intake amount has increased from 3-5oz/per feed to 7-8oz per feeding, his dirty diapers have als decreased from 6 large poopy diapers to 1 sm one per day. but today has been horrible and most of his bottles have been fed to him in the car asleep. 1 of them he did eat in the car while awake! He has always nursed well at night, so i have continued to let him sleep in our bed and nurse all night, still at 5 mo.
I feel for everyone else who is going through feeding difficulties. My pediatrician says this happens, its normal - NO IT ISN'T. My fiance and I have no family in CO and really don't know anyone either... we have no time to shower or anything. It's wonderful to be able to talk with other people going through the same thing. Thank you. The onlt hope we have is to be persistant with our doctors. I hope we find some resolution looking into these esoinophilic conditions.
I wish the best for everyone and will keep you in our thoughts. There ARE answer, we most keep looking until we find the answers!
Best Wishes,
Maggie, mommy of little Gavin Reed :)
Dear Maggie and dear Frankie's Mom,
I am reading your comments and finding myself in tears. Yes, we are there for one another from now onward and we should try everything that is out there. I am planning to go to a third GI and I am planning to work with another ped who has a little more experience in aversions. I also got a contact of a good feeding therapist in this area and I will keep you both posted on that. I am going to try Chiro and massage (not without recommendations though).
I just pray everyday and ask God for more strength to take care of this child. I will pray for both of you too and your children.
Maggie, is it possible for your ped to put Gavin on Neocate? The insurance might actually pay for entire cost/some of the cost. I have heard friends who vouch that Neocate solves the problem-- again I am not an expert or ped but just a desparate Mom like you.
Lots of love and hugs to both of you and Frankie and Gavin. Keep in touch and wishing you and your family Happy Holidays.
Dear Maggie's Mom,
I'm sorry to hear what you have gone through. We are all in the same boat so I really understand how hard it must have been for you and your fiance. I really admired your effort to keep pumping for breastmilk. I wished I have done the same because it really makes a difference in how fast and easy the body digest breastmilk vs formula. I remembered blaming myself for months because I have given up pumping (I thought it would be better spending more time with my baby). Please keep up the good work. I will keep you and Sonja in my thoughts and prayers. We will eventually get through this and may laugh at what we have to do to feed our little ones. I believe God will eventually answer every prayers. Take care and keep in touch.
Frankie's mom
Thank you so much Frankie's Mom. I would have never dreamt of finding such wonderful friends in this virtual world because of Avin's feeding problems. You are right, some day we might look back at all this and just laugh.
I agree with you about the pumping too. I did the same thing, gave it up because I wanted to spend more time with Avin. Since then his weight stopped increasing at the same rate, his gas problems got worse and he has to strain a lot for his BM.
Hello Gavin's Mom,
I am so glad you have found a circle of support as you work to find the best treatments for Gavin.
Milk Soy Protein Intolerance can cause blood in the stool. It sounds like your doctor may be exploring this and food allergies. A restricted nursing diet may be necessary. If you need to supplement with formula or switch to formula, ask the doctor if she can get it authorized by your insurance. The cost is really high.
Also, some babies are so sensitive to hidden ingredients that you have to be careful about medications too. If you identify a specific cause of the allergies, you might need to go over the ingredients list of each and every medication (over the counter and prescription).
Mostly, it is important to find a circle of support as you go through the stress and worry of finding the treatment plan that works for Gavin. We are all here for you.
Best wishes,
Jan Gambino
The Reflux Mom
Dear Bao,
I am wondering how Maggie and Gavin are doing. I hope Gavin is drinking more while awake and doctors have been able to pin point to the source of his allergies.
How is Frankie? I hope he is doing a lot better than last time. Every single day I think about Frankie, Gavin, and another baby girl who's mother has posted elsewhere on this website. I pray that all our kids become healthy and enjoy their food, milk and/or formula.
Avin is not drinking as much formula as he should be. He also looks like he has lost some weight. At this point it is too early to say whether the therapy is working or not but I was really glad that the therapist has decided to work on Avin during the holidays. Unlike my previous therapist who just took notes and did nothing, the new one spent only 1/2 hr in evaluation and has been trying to get Avin to eat since then. The only thing I am worried about it is that he is making no attempts to introduce the bottle. That is scary for me. Solid food is alright but Avin is still too young for that (5.5 mo old). Let's see how it goes. I will keep all of you posted.
Love and hugs for you and little Frankie. Sonja.
Here is some new updates on Avin's problems:
We have tried three pediatricians so far: 1 st was really old school and denied that "reflux" exists. 2 nd was too inexperienced and was "uncomfortable" doing anything. She was more worried about the liabilities and so doing nothing/not treating beyond Zantac was what she did. 3 rd was great, adjusted the dose of Prevacid etc., but his staff is very slow at referrals etc. We felt like we were wasting valuable time trying to contact specialists through them. Now we are using concierge pediatricians and hoping that we might be able to ask them to give more attention to Avin.
We also went to two GI's so far. First at a Children's Hospital: were not able to speak with a doctor. RN saw Avin and gave Prilosec but the dosing was improper and there was absolutely no followup. She didn't return our calls either. Second GI was a private doctor, he saw us but absolutely a poor listener. We tried telling him that Avin sleep feeds but mostly during the ‘day' and he kept telling us how we need to quit the "night feeding"..geez it was so frustrating. So the only good advice he gave was concentrate his formula. He said minimum 20 oz liquid for Avin to avoid dehydration and minimum 30 oz equivalent (600 cal) formula to ensure weight gain. So when we prepare formula we take 5 oz water and 3 scoops (instead of 2.5) formula. This might be a useful tip for many parents out there looking for a weight gain in a 4 to 6 mo baby. Anyway, that GI had similar issues of not being able to return calls in a timely manner.
We also tried a speech pathologist. She called us twice. We travelled for two hours one way to see her and all she did was take notes and give us back a well written report of what we said. After the first session of evaluation, we thought that she might start him on bottle/ solids but we realized that she had no such intentions. She didn't give us a single suggestion in both meetings. The only thing that happened was Avin skipped two of his major "sleep-feedings" because he dozed off during the travel and then absolutely refused to sleep after reaching the clinic or coming home, therefore, no food. Then we tried a behavioral therapist but it seems like he is not used to dealing with kids Avin's age. 5.5 mo Avin is unable to sit on his own and/or eat huge quantities of solids. This therapist made him thick, high cal pasty food and literally shoved the food in his mouth. For first two sessions Avin, cried, gagged and choked. Then when he started showing interest, the therapist shoved more into him so that resulted in huge gagging and then vomiting. I have heard reports that this therapist has helped many kids but has also caused more agony for some kids-i.e their aversions got worse.
My question: If reflux is so common, why is it so hard to get to see pediatricians who have done this before. How come most peds don't have their own teams
of Ped-GI's, therapists and a whole setup to help a child with reflux and aversion?
Sonja, Thank you for the update. What an amazing journey you and your family have been on. I hope the New Year brings much health and eating for baby Avin!
You are asking an excellent question. I hear a variety of stories about finding assistance for feeding difficulties.
I am not sure if many doctors make referrals to a feeding team or a feeding therapist for a baby or child with reflux. I would like to hear what other parents have experienced. Does the parent need to suggest a referral to a feeding specialist or does the doctor suggest a referral?
I think part of the issue is not every community has a feeding team or feeding specialist and insurance often does not pay for this service.
Anyone else want to share their story?
Jan Gambino
The Reflux Mom
Hi Sonia,
Per your recommendation, I post Andrew's update story here again, So any reflux baby moms know to there is hope, there is beter day than today or yesterday. Some of you might have read my beginning story on Amy post. Just like Avin, Andrew was born two week early at 5lbs 8oz. The first two month went well. I do breast pump and enfamil supplement 20%. He is dx w/ GERD at 2 months, went thru G.I ped and speech therapist.
G.I told me due to his normal wt gain, he believe GERD play a pchylogical part in his behavioral oral aversion problem.He told me to let him be hungry enough then he will eat.However, I do not have the gut to do that, I gave up after 14 hr, and started his sleep feeding again, then trying very hard to distract him with toys or conversation while but the bottle in his mouth. While he forgot, he took 2 to 3 oz at the time. At one point, he completely withdraw from the bottle, I have to go through the entire month completely sleep feeding. Speech therapist does nothing except listening and recommend to give bottle of water instead of formula, to regain his habit of sucking. That does not work either. He is on breast milk up to 8 mons, at his peak, the doctors give me the list of diet 2 pages long of what not to eat to reduce food that trigger reflux. We change formula from enfamil to Similac also, nothing seems to make the differrent. We put him back to breast milk and enfamil. His reflux symptoms get better with 2 doses of Prilosec, and small meal at the time and 30 minute holding up post meal. As I mention with Sonia, he was also prescribed prevacid, but that med does not work for him, so we went backto Prilosec which seems to work out best for him. As he got older, his symptoms( vomitting) subsides, but then he is teething, with multiple eruption cysts just put him right back to where he was with reflux. He went back to sleep feeding 100%. And yes taking care of a sleep feeding child is very difficult, your schedule is revolving around him, I had my Mom to help me and I also have to hire a fully time nanny while I was at work. For months, we did not have any social activities.
I was desvasted and wondered if he is every going to get out of sleep feeding. I pray to God to let him go back to his normal feeding without we starve him to demand for feeding which might take up to a day or two as a recommendation from a friend whose his son going through the same reflux thing but he got starved unintentionally due to diahrea. As God answered my prayer, he starts his normal feeding about a month ago and demand for his feeding. As of right now he is 9 month and intakes on the ave 40 oz/day that break his normal record. He is still on med once a day. Vomiting occasionally once to twice a day at most. YES reflux babies will grow out of it, might be slowly, but they will, hang in there. Don't stop praying for them to be healthy and happy.
Sonia, thanks for the continued prayer and yes Avin will be in our prayer also.
Hanh
Dear Hanh,
Thank you so much for taking out time for this update. I am so much more hopeful because of your post on baby Andrew. Amy D also has an encouraging update on her post. Her little guy now feeds completely while awake too. Just like you, she took one day at a time and introduced solids and sippy cup and slowly worked on his feeds.
Thanks for the update on medicines too. Each child is different, and if one of the medicines is not working, we need to make that switch soon. We all hope that Andrew will soon be able to grow out of his reflux 100% and will have no more episodes of vomiting. Wish you and and Andrew the very best from all reflux mommies.
Hugs.
Sonja.
Dear Sonja and others,
First I want to apologize for not responding in such a long time. It is wonderful to hear that some kiddo's have improved.
Sonja, I am with you on your struggle. Let me tell you a little about Gavin's progress or lack of and what we are now doing. I started the amino acid formula along with an elinamtion diet for me. We did see improvements but not huge. We got to a point were our GI doc said she had treated the reflux so aggressively (prevacid, zantac, carafate and ALMOST reglan) that she really felt we were dealing with allergies. Ok, you guys knew that. Well I finally decided to stop bf'ing and good thing. Gav improved almost immediately, until we started solids and then we saw a huge regression again. I have switched pediatrician's, and GI docs. New ped is great... and new GI doc is awesome too. She says she hears this all the time "a baby diagnosed with reflux, not responding to PPI's (prevacid) and sleep feeding." Her first thought was the Eosinophilic Esaphogitus (sp) EE or other Eosinophilic disorders. We see our GI at the Children's hosp in Denver, they are one or two hospitals that have pediatric Eosinophilic clinics - most other GI's are not as up to date on this disease. It LOOKS just like REFLUx but does not respond to acid supressive therapy. We are doing a scope next tuesday to rule in or hopbefully rule out EE and other eosinophilic conditions. We also saw an allergist, he did skin prick testin for 17 foods and all were negative. I feel like we're getting to the bottomw of this.. .our old GI new about EE but didn't really do more about it. SOnja, just maybe research it.... just maybe Avin has a condition like this.. just maybe. KEEP looking for other GI's. One of the best is in Denver at the childrens hosp, others are in Cincinatti at their children's and the Children's hosp in phila also has great GI's ...
I willl let you guys know how the scope goes and what they find in the biopsy. Reflux babies have a white blood cell in the esophagus called eosinophils that SHOULD not be there.... babies with severe gerd who do not respond to therapy have many more of these Eosinophil's in the esophagus or other parts of the GI track. Not much is knwn about the disease, it's fairly newly recognized. I am no doctor at all.. just a struggling mommy adn I have found a GOOD GI doc who is almost certain my son has this EE - we will know for sure next week. It is caused by allergens but they could be anything or even sensitiives to foods, and even just airborn allergens can cause it. IT MAYBE WORTH it to travel to one of the two hospitals that have these Eosinophilc clinics. And lots of times the triggering allergen isnt detected by normal allergy tests.
I don't know sonja, maybe Avin does not have this at all - but If you can get a pediatrican to refer a really good gi clinic you could get to the bottom of this. Call them everyday and bug the hell out of them until you get the referal you want..
Some symptoms of EE:
"Symptoms vary from one individual to the next and may differ depending on age. Vomiting may occur more commonly in young children and difficulty swallowing in older individuals.
Common symptoms include:
* Reflux that does not respond to usual therapy (medicines which stop acid production in the stomach)
* Dysphagia (difficulty swallowing)
* Nausea and Vomiting
* Failure to thrive (poor growth, malnutrition, or weight loss) and poor appetite
* Abdominal or chest pain
* Feeding refusal/intolerance or poor appetite (*sleep feeding)
* Difficulty sleeping
Here is one link: http://www.apfed.org/
email me if you are interested in more info... if I am barking up the wrong tree... forget what I am saying, I won't mind. I am just looking for answers myself.
Another disease i have heard of that kind-of presents like reflux is Mastocytosis. But Usually not, but it is a possibility.
YOU NEED A BETTER GI. You seem a lot like me, not afraid to fire a doc when they aren't working.
I'd love to talk more sometime, my email is easier... so here it is Margarit.snyder@colorado.edu
I wish everyone the best of luck and your little precious babies too.
Best,
Maggie
Dearest Maggie,
Welcome back! I am so glad that you found a good ped and GI-- I agree with you 100%. I fired 3 ped's and two GI's. I have finally found a good team too!
There are some new developments with Avin too:
1. His pain seems to have disappeared completely and he has started gaining some weight. From less than 3 percentile, he is now above 5 percentile. He is also a lot more energetic and active than before but he will not stop sleep-feeding. Both doctors and therapists think that now it has become behavioral. This is a very serious issue too but there are a bunch of improvement that we cannot overlook either.
2. He can take solids in small quantities now but not with too much of granular texture-- we are going to evaluate him for texture sensitivities.
3. A blood and stool test confirmed that Avin does not have any blood i.e. allergies or EE (I have no idea how they did it but that is what it says). We also did a gastric emptying analysis by ultrasound and it came within a normal range too--so no Reglan.
4. Bottom line: we have experienced that he has made huge improvements on Prevacid: 15 mg given as a single dose in the morning. Very recently Drs have added another 1/4 to 1/2 prevacid as and when needed at night; in just 4 days his nights have bocome less fussier and he sleeps really well.
Having said all of this let me post a para that his ped-GI wrote for him on Friday (our pedi shared the entire dictation with us):
Avin shows severe aversions to the bottle and although he shows interest in solids, he cannot consume large quantities to support a healthy caloric intake. At his age this seems completely normal. Parents are working very hard to continue sleep feeding so that his nutritional demands are met. While they are able to do this with some success, I feel that time is on our side and that a sippy cup or stage 1 purees can be safely introduced, but only for fun and play. There should be no expectation on the part of parents, caregivers, doctors or therapists to make solids or sippy cup the main source of caloric intake. This will happen eventually when Avin's fear of feeding is overcome by his appreciation of new tastes and textures. Although, Avin's aversion seem behavioral, I do not recommed any behavioral therapy for him at this point of time. The need for this can be evaluated in future....
Having said all of this, I would really encourage other reflux parents to read your post here. In fact, will you please create a sharepost after all the tests are done for all of us? Tweety and Frankie's mom might want to double-check about EE with their GI too.
Your information is extremely valuable and no, you are not barking at the wrong tree. It is very common for reflux parents to help other parents by sharing whatever has been diagnosed with their child and warning other parents to take a look. I do it too and although it might seem useless for many, it has really helped some. I have two friends (feeding therapy support group mommies) who's babies did quit sleep feeding after reading some of my experiences and insisting their pedi's and GI's to intervene early-- I am so glad that their children will not have to struggle like Avin. You are just like me and other moms in so many ways.
Please keep us posted on Gavin's diagnosis. I wish him the very best and may all the test's go easy on him and may he feel 100% better. He is in our thoughts and our prayers and Maggie--so are you.
Hugs,
Sonja
Hi Sonja,
Oh I am so happy to hear that prevacid is helping Avin and that he's gaining!! This is wonderful news.
I will certainly create a Thread on EE - for sure, once Gav's tests are done. My finance and I are also starting a non profit organization... still completely in it's infancy to advocate EE and other EOS diseases that all too often go misdiagnosed as acid reflux. We will be creating a website -- probably www.kidswitheos.org (but i will keep everyone but to date on that when it happens and the domain is ours)
I DO NOT intend to correct you about anything but from my extensive research on EE and Eos disorders I wanted to just say something about the hematocrit testing (testing stool for blood). The hematocrit testing test for blood in the lower GI track. Gavin has had 10 done, all negative. The test is just that, shows the presence of blood, which can mean a virus, bacteria, or IgE immediate Allergie, such as a milk protein allergy, sometimes when eosinophils are present in the colon there may be blood in stool, but no garuentees. It in no way tests for EE. EE does not cause the lower GI track to bleed in anyway, other oes disorders may or may not have blood in stool. Jus b/c it's negative does not mean an Eos disorder is not there. The only way to test for and diagnosis EE, or rule it out is by doing an invasive, sedated Upper GI endoscopy where multiple biospies of the GI track.
So, just keep it in the back of your head still if Avin does regress when solids are started more regularly or even as a toddler, (vomiting after eating, the poops, gaggin, refusing food after a trigger food is eaten). EE and other EGID's (EOS disorders) usually go undiagnosed until 1.5-3 years of age. But, as doctors are becoming more knowledgable about it, they are getting better at diagnosing it in infants.
I will let everyone know how the tests go for Gavin. We are praying for a low number of Eosinophils....and NO EE !!! My thoughts and prayers are with everyone.
x's and o's
maggie
Hey Sonja,
I just re-read your previous post and your GI-doc's dictation... the idea about a sippy cup. Have you guys started to try? We just started doing this with Gavin, not too long ago and he really gets excited about the sippy cup! It's wonderful to see him happy about it. We are just using water still and are slowly slipping his formula in there - I have high hopes this will work for us too.
:) best of luck for you guys.
maggie
Hi Maggie,
Yes, we just started the sippy cup--I am still figuring out which one might suit him the best. I had lot of help from Amy D (who has a great post on her baby's sleep feeding). This was her tip originally but my GI agreed that that's the way to go.
Just one quick question: has your new GI discussed with you what may have caused the EE? And if it is detected what will the short term and long term treatment for that be?
I just shot an e-mail to our new GI voicing your concerns and he came back to me with a reply: most common cause for EE in infants: Acid reflux or food allergies. Among symptoms: diarrhea or many BM's per day is very common. Also children continue to lose weight despite calories.
Does this sound right?
He also added that no matter what as a precuation GI's will always put an infant on a very good dose of Prevacid or Prilosec for healing.
Again, thanks for this post and good luck for Gav.
Hi Sonja,
As for causes of EE, I've been told and researched some things. Basically the exact cause it still unknown. Researchers theorize several things. One that there is a genetic predisposition along with environmental toxins that are weakening the immune system and there is also the Hygeine theory. ( a kid born into a home that is too clean .. actually weakens the immune system??? ) - but they are just theories.
As far as what I am told EE is caused by a weakened immune system, and it in turn causes reflux of a different origin than just normal infant reflux. Allergies do not *cause* EE (like, if you have allergies you MUST have ee - its not like that) but rather IgE allergies and Delayed/intolerances can trigger EE, also Asthma has a link to EE and EE can also be triggered by airborn allergens, and not food in some people. People can also have multiple food allergies, but yet only, say one or a few of those foods are the triggers to EE. It's really very complex and I hope I am not being confusing! lol
When a certain allergen (food, cell mediated, or airborn allergen) enters the body, the body attacks that allergen by releasing toxins (Eosinophils) that are very painful, they cause the reflux.
There are 4 main types of Eosinophilic disorders - EE (Eosinophilic Esaphogitus) - in the esaphagus, Eosinophilic Gastritis (EG): high numbers of eosinophils in the stomach.
Eosinophilic Gastroenteritis (EGE): affects the stomach and small intestine.
Eosinophilic Colitis (EC): describes the occurrence of high numbers of eosinophils in the large intestine, Or there can be High nubers of eosinophils throughout the entire GI track.
As far as treament, short term. After a positive biospy for EE or another one of the EGID's, the patient, no matter the age, is put on a stict amino acid based formula, neocate or elecare, with no food for 2-3 months to allow the GI track to heal. They are also put on aggressive doses of PPI's and other acid supressive therapies (this is usually long term treament too) My doc said that if the Esophagus is damaged from the eosinophils already, they want anything coming up from any reflux (normal amounts of not) to be completely acid free. After the 2-3 month healing period the Biospies/endoscopy is repeated, if the number of eosinophils have decrease to normal, food trials may begin. If the Eosinophils have not reduced to acceptable range, Steroids are used for a period of time to supress the Eosinophils further.
Once food trials begin ... it goes like this. You try one food ONLY (along with the amino acid formula) for anywhere from 1 week to 1 month depending on doctor and circumstance, if the food has been well tolerated, you go on to another food until you reach 5 foods. If at any time you see an adverse reaction (vomit, diarrhea, seeminglyy odd food aversions, mucusy stool (esp in infants)) that food is stopped immediately and Never tried again. If you it make through all five foods with no adverse reactions, then the endoscopy is repeated, with a biopsy ... if the biopsy is clean - then all five foods can be kept in the diet. If the biopsy is not clean and shows an increase count of the eosinophils, then ALL five foods are taken out of the diet and never re-introduced. Sadly, some of those foods may not have been the trigger, but all must be eliminated. Doctors are currently doing research to try and find better ways to do food trials.
Some allergy testing can be done, but many times testing indicates food that are not the triggers and it has proven to be more effective doing the food trials. Some newer allergy tests are available that may be more reliable for EE/EGID triggers.
It is a rough diagnosis. there are kiddos out there that can only 4 foods, 12 foods, some even 20.... sadly, some of these kids slowly begin to become allergic to the previously OK foods and they too must be eliminated. There are kids out there that MAY NOT EAT ANY foods at all except for the hypoallergenic, amino acid formula, usually by a tube in the belly to allow the amount needed. But, those are extreme cases.
Is a scary disease that is on the rise. It in no way is a good thing to be diagnosed with it, but the earlier the diagnose can be made, the less pain and agony the child has to go through. Even if a child shows no symptoms such as vomiting or diarrhea, there insides could be burning, like reflux. Some children (toddler ages) will sometimes show no other symptoms then seeming odd aversions to a specific food - they must know it's a trigger. It is hard. A person does not have to have all of the symptoms, some just have a few, and can actually have just reflux or gagging, ect. Each person varys greatly and symptoms also vary greatly depending on what part of the GI track is effected. It'sbeen thought that in older patients w EE air born allergens are the trigger. It's soo ocomplex. Often times older kids have rashes or hives for no apparent reason, likeI said, it's so different from person to person.
Grants have been given to Denver and Cincinnati's Children's hospitals to do research on these diseases and newer treatments are poping up everyday! Steroids can often be used to supressed the eosinophils and sometimes foods can be eaten. But steroids can have negative long term efffects on the body and once stopped the symptoms return.
My theory is that as our world becomes more and more toxic, our children's immune systems are suffering and become compromised, and treat food in general as an attack. I coukld go on, and on............ about what all is "toxic" in our world and what is compromising our children's immune systems!
xox to all!!
maggie
Sonja,
I will def keep everyone up-to-date with what's going on with Gav. His scope is Tuesday, we'll knw what his insides look like, but biopsies will not return until the 17th. Even if Gav doesn not have an EGID - which is what our family is DESPERATLY praying for, my family will still advocate for these disoders. They are extremely scary and they are on the rise. We live in the right location where the doctors are educated about it - so, now we just have to educate the public, moms, dads, grandmas, etc about early signs that mimic allergies and reflux !!
I do not mind if you post my previous post on the feeding forum, except for the many, many typos and spelling errors! ( I only ever have a few minutes to do this! _SORRY :)))
Hugs to you all and I am so glad to hear of Avin's improvements, this is wonderful!
xoxo,
maggie
Hi everyone,
I wanted to take a brief moment to update you all on Gavin's biopsy results. His esophagus was perfectly normal (well, with some inflammation from reflux, but no EE.) The problem they found was actually in his colon. After the biopsy came back, they showed positive for extensively degranulated eosinophils throughout the colon... Eosinophilic Colitis (EC).
We're oddly optimistic. We're seeing a more specialize GI/Allgery team next month who care only for kids with eosinophilic disorders. EC is more rare than EE, but there is a small chance it's "outgrowable," unlike EE. It's also usually seconary to another conition that's usally treatable! Our GI's knowledge is limited on EC, but we will know more next month. We feel the scope was a necessary evil that turned out to b a blessing. most kids hgo misdiagnosed for a long time. My GI said she has never caught an Eosiniphilic disoder, personallly, this young in a child before. We are lucky.
I hope everyone is well,
Hugs
Thanks for the update Maggie. I remember you mentioning "bloody diapers" in one of your earlier posts. I am glad the doctors were able to get to the root cause. Gavin will feel 100% better now that you have a diagnosis for a completely curable condition. He will outgrow it. Good luck with everything!
Hello Maggie,
I am a little behind on checking back on this discussion...so glad you were able to get a diagnosis. Best wishes to you and Gavin!
Jan Gambino
The Reflux Mom
P.S. When you come up for air, it would be great if you could write a Sharepost letting others know your storyfrom diagnosis to treatment. I am sure another mom, dad or friend/relative searching the web would benefit greatly from your experiences.
Hi everyone,
This is my first time posting on this forum. I am crying as I read the thread because of how similar your experiences are to mine. I have a 14 month old daughter, Lila, who began to refuse her bottle at 10 weeks (I was never able to get my supply up and so we supplemented starting in the hospital when she was born). At 10 weeks, she started refusing the bottle, arching her back, crying, and becoming hysterical each time I tried to feed her, though she had been on a 3-hour feeding schedule for about 4 weeks by then. The pediatrician couldn't figure out what was wrong, and told me it was probably just a bottle strike that would go away in a few days or a week. It didn't, and we began to go in every 2 weeks for weight checks.
We eventually figured out that she would drink while asleep, and thus began my days of waiting until she was asleep, then very carefully picking her up and spending 1-2 hours with her in the glider, trying to wake her up enough so that she would suck but not enough that she would fully wake up and reject the bottle. She would drink about 50-80cc over the course of 1-2 hours. We took long walks in her stroller so that I could rock her to sleep, then feed her while she was asleep in the stroller. We tried Zantac, then moved onto Prevacid, and never really saw any results. Although she did feed while awake a few times when she was around 5 months old, it was never a regular occurance and soon she began to refuse the bottle again. Around 6 months, we started solids, and she was very happy to eat it, but we knew that it wasn't enough calories just from food so we still sleep fed her. She began waking up every 1/2 hour at night, drinking 20cc, then refusing the bottle and we had to rock her back to sleep again. As I was back at work, we sleep trained her (at around 7 months). The sleep consultant we worked with said that if she slept through the night and was hungry when she woke up, she would learn to feed while awake again. We tried this and it was like magic the first morning, she drank almost 7oz while awake! But each morning after that she refused the bottle again, although she had eaten nothing
for 12 hours straight.
Long story short, she is now 14 months old, and getting her almost all of her nutrition from solid food. She still doesn't have the habit of drinking, either from cup or bottle, though she will play with her sippy cup and take a few sips at a time. We spoon feed her milk, which she really enjoys, but mealtimes take us about 1 hour each time since we use a spoon for all liquids. She is a very happy healthy child, very small for her age (weight in the 3rd percentile, height in the 40th percentile), but extremely bright and verbal.
I have a 3-month old boy who began a bottle aversion last week. We were on the lookout for signs of reflux but as he did not vomit as she did we didn't think he had a problem. Now he is behaving in exactly the same way, arching his back, crying when we try to feed him even though he is showing signs of hunger. I am so sad and scared that this will happen all over again. I am calling the doctor tomorrow so that we can start him on prevacid, and resisting the urge to dream feed him because I think it ended up being a behavioral issue for my daughter, and although she is fine right now, she still doesn't drink from any sort of container by herself and I think she gets less nutrients and calories than other babies her age as a result.
Thank you so much moms for sharing your stories. I felt so alone before this because I couldn't find any information online or through my friends/pediatrician. My pediatrician and the GI specialists all told me they had never seen any case as severe as Lila's. I am glad to know that I am not the only one going through this. And I hope that my daughter's story will be a hopeful one. Even though it has been an extremely difficult, tiring, and lonely road, she has developed into a beautiful bright toddler. We are still wondering if her aversion and low caloric intake will affect her eventual growth, but she is speaking well before most kids her age, so we know that mentally at least she hasn't been affected :)
Sonja, I am in the bay area as well, any others in the area? Would be great to set up a support group.
Thanks so much again for sharing your stories. I feel less alone now.
Jenny
Dear Jenny,
Thank you so much for sharing your story with us. I am so sorry that you are going through all of this, again. It does seem like you son has "silent reflux" like my Avin. Avin is doing really well with the Prevacid now a days. 15 mg Prevacid was helpful too but as soon as the drs added anothe 7.5 mg in the evenings, he started feeding at bedtime and sleeps well during the night.
We have a local feeding support group in the SF Bay Area here and if you send me a private message by clicking on my name, I will be happy to provide you with details on how to join this group. It has helped me tremendously to know that we are not alone in the Bay Area and there are a few other sleep feeders out there.
A close friend of mine recently moved to the Bay Area, but is working with an out of state GI for their daughter and from the series of terrible experiences she had (and some of my own experiences), I learned that younger doctors (but 10+ years of experience) are more up to date with reflux related issues and will treat it quick and fast and usually aversions will not pop their ugly heads into the scene. Her GI has attended all the required conferences/work shops on reflux but he is not from California and cannot prescribe here.
According to my friend, this GI's personal choice is priolosec compound for children with aversions as it has some soothing property and something in it enhances hunger. Reflux kids have slow weight gains and usually using only Zantac keeps them skinny (according to the doc), but moving to Prilosec helps resolve many issues simultaneously. According to him when aversions are setting in, most children need about 10 mg to 12 mg prilosec a day. This can be given as 2 doses per day (with a Zantac in between) or as a three doses per day 4 mg in each dose with no Zantac after two weeks of starting Prilosec.
I am sending this because like me you too seems to be having a good experience of Prevacid, however, our kids are not ready to quit aversions due to medicines alone. Just check if Prilosec has these benefits. Also, your compounding pharmacist (someone like Abbot's at Berkeley, Haller's in Fremont and Los Altos Pharmacy in Los Altos) gives 15 days supply so that you can keep getting fresh prilosec every 15 days. Prilosec does lose some effect in 2 to 3 weeks.
Good-luck with everything and do keep me posted.
Hello Jenny,
Thank you for sharing your story. I am so glad you found this wonderful community.
I know you have received a mountain of advice about Lila. I wonder if she has been evaluated by a feeding therapist such as a Speech Language Pathologist or Occupational Therapist. A feeding therapist might be able to try some techniques to get Lila to drink any liquid from a cup. I know some therapists will use thicken pureed food in a cup and gradually thin it. Also, there are many straws and cups to try. A feeding therapist may need to use some trial and error but she can guide you and Lila to a solution.
When my daughter was a toddler, she drank barely enough to stay hydrated. Her stomach reacted badly to thin liquids. To this day, at age 14, she can still reflux on a glass of water... and water isn't on any reflux trigger list that I know of! I think the liquid is just too much for her sensitive stomach. So, the goal for Lila may not be to drink a huge quantity by cup but to drink a bit more than right now. I think babies and toddlers with reflux are very smart and they try as hard as they can to fix the problem.
It is a worry if Lila cannot drink fluids if she were hot, dehydrated, etc. Again, my daughter used to wilt in heat or with the stomach flu even to the point of needing IV fluids due to her inability to drink much.
Sonja and Amy are our sources of all info on sleep feeding so keep asking your questions and sharing your concerns with us.
Take Care,
Jan Gambino
The Reflux Mom
Dear Hanh,
My daughter Emma is also having sleep feeding problem just like yours. I am stressing out because I thought she is the only one with this problem until I stumble on this website. She does have GERD at around two months and is now on prilosec and alimentum formula. I just don't have the gut to starve her for hours and then feed her on demand at the risk of her loosing weight. She is four months old right now and average intake around 22 to 23 oz per day.
We tried to feed her when she is awake and hungry and she can take only 2 oz but with much difficulty. Her doctor just increased her prilosec to twice a day and is recommending us to see a feeding therapist. Her reflux symptoms improve but I am just wondering if she will ever grow out of it. I am scared thinking about it.
Ihave my second one now, he is also 4 months old, very difficult feeding too. Each feeding he only gets 2 oz, but he tolerates well with two oz( exactly 80ml, a little more than 2 oz) but for his age that is a little less than normal, but I increase the freq sothat he will get enough. Freq of 1.5 hr to 2hr either during sleep or awake. Small feeding seems to work well for him. He gains weight fine with this strategy but a lot more work for care taker, cannot send to day care.
Does the med help your daughter? There is nothing wrong with sleep feeding as long as she does not have teeth yet. When she has teeth you have to watch out for rampant caries( speaking from a dentist perspective). For my older son the med does not work very well therefore with the second one, I try not to use it at all. Remember, it will eventually be easier at some point, some can last until one year old
Let me know if you have any further question.
Hanh,
Thank you so much for your reply. After Emma's four months visit to the pediatrician on friday, the doctor said that she is growing nicely but her feeding aversion is concerning. She decided to increase her prilosec dose from once a day to twice a day. Emma was orignially on zantac for one week but that didn't work out so when she took prilosec, I noticed her symptoms got better however she was still refluxing a couple of times a day. Now that she is taking it twice a day, I am seeing her symptoms are improving even more.
We tried to introduce her the bottle during awake time, she would not take it and would just tongue the nipple out. We did a trial on Saturday and she would go for five hours without wanting to eat. I gave up later in the day because I know her daily consumption would decrease drastically. So we decide to just try the awake feeding later in the evening and when she has already taken a certain amount already. When my husband fed her in the evening after 4 hours of not eating, she probably take a couple of oz awake but with some resistance.
Did your son just grow out of it without you having to train him? How was his transition to solid? How is his eating habit now?
My mom lives with us so she has been tremendously helpful and patient in feeding Emma. She would have to sing her to sleep then feed her. She actually can eat if she is drowsy and sleepy as well. It is exhausting :( I know every baby is different but I just want to see a better day. I am just afraid if she will be like this forever? i know its crazy to think it that way.
did you son see both GI specialist and feeding therapist? How was that experience?
Thank you so much for taking your time to answer my questions. I truly appreciate it.
Vy
Dear Vy,
My son Andrew went on strike between 4 month to 8 month, meaning all his feeding pending on his sleep, I was worried because as they grow older, they sleep less, meaning less intake. One day, I still remember it vividly, it was Thanksgiving, I had guests coming over, therefore his feeding schedule was interupted, I offered the bottle, but he refused, so he went on for not having anything about 6 to 8 hrs, then I offered his bottle again this time, surprisingly,he went on and took it well. Then the next time we tried again, he took the bottle with distraction of watching baby boost program on TV. Subsequently, he still continued to take bottle awake but with distraction of toy or TV or live entertainment from his Dad.
Then when we weaned him off the bottle, that is another problem, he refused to give up the bottle. We gave him the sippy cup, but he never finished the cup. So my friend and I who have sons of the same problem, we came up with using the medicine syrine to pump to them and make sure the cup is empty after the first few sips that he tried. Kids with GERD always need more attention and picky eater. When they start solid, they have to tried out the smooth texture first, anything with texture that they don't like they can make themselves throw up on purpose. I did not start solid for Andrew until he is 8 months, apparently, he does not like solid food either. When he passed 1 year old, they still do not enjoy table food as any other kids. They might try the food, but if they gag and throw up,they might not want that food again.
How much does Emma weight right now? Remember the less she throws up the more likely for her to take the bottle awake later. You just have to keep trying with these babies. They need more TLC . Even is she taking 2oz awake, it is still a progress. Yes my son went to GI specialist, speech therapist, but they cannot do anything for him, it just a waste of time. The GI specialist told us there is nothing wrong with his medical condition, he just had attitude, let him be hungry enough he will eat. Speech therapy told us to let him have a bottle of water instead of milk to let him relearn sucking habit. They scheduled for us to return, but I didn't think there is anything they can do, so we did not return. My son was on breastmilk, if your daughter is on formula, you can try different formula to see if they like the taste better. My friend's son response to Similac for sensitive better than all, some with special enzymes as the one you used or Enfamil Gentlase might be a little difficult to taste. ( Asian Kids also are more high maintenance than any other races) I hope these info will help.
Hanh,
I have to say motherhood is extremely rough :( Sometimes I want to cry....I am grateful that my mom is with me. She is extremely diligent and is a perfectionist so she would wake up at 4 am every morning to feed Emma so that she can be fed more often. I don't know how we would survive without her. Emma's bedtime is around 8pm or 9pm. I would nudge her around 11 pm to give her a bottle and she would continue to sleep until the morning. I know what you mean about babies would sleep less as they grow older. My mom has this routine to put Emma to sleep by singing to her. Emma would fight her initially but my mom would keep on singing and after a few more minutes she gave in and felt asleep. It is amazing how she can do that.
I had a chat with the pediatrician on Tuesday and she told me that the speech and swallowing therapist said that Emma does not have a swallowing issue and more of a sensory/behavior problem. As you have mentioned, they advised us to change the formula. We have tried the good start gentle which was what she took in the beginning, the similac alimentum, enfamil gentle. This morning was an odd day for my mom because Emma refused her usual 4 am feeding in which completely stressed my mom out. So i used the opportunity to try the similac advance but she also refused. Maybe I should try the Similac Sensitive? I told my mom that sometimes we will have an odd day where feedings would be more difficult ie our failed attempt to feed her awake this evening. Anyways, the pediatrician told me that since we increased the prilosec to twice a day we will give it a couple of weeks to see how Emma responds. We will check back with her ina couple of weeks. Did Andrew get an endoscopy through his GI? I know its an invasive procedure so I am not sure how GI consult would be.
Emma's weight was 13 lb 9oz on friday well visit which put her on 51 percentile compared to her last visit which was 45 percentile. How is your second one doing? I hope you are not facing the same struggle as you were with Andrew. How old is Andrew now? Is he eating better? It is realy crazy how babies have mind of their own. I am praying everyday that Emma will grow out of this feeding aversion.
I know at this point there isn't much that anyone can do but trying out best to feed her. I just feel so bad for my mom because she feeds Emma most of the times since I went back to work. Do you have help at home? I remember you mentioned that you have a nanny? you are completely right about the daycare problem. I don't know how our little ones can get the attention through daycare. So I am blessed that my mom is helping us right now.
Please write back when you can. Your emails have been extremely helpful. Thanks again.
Vy
Hi Vy,
I read your email from the beginning you have mentioned that Emma's problem starting at two month, meaning at birth to two month she was eating okay. ( by the way, did you ever do breastmilk feeding for her). The peak for reflux starting at 6 weeks, most kids have some sorts of reflux at this peak, it is more for premie baby. As I mentioned in one of my old post, Andrew was 3 weeks early. Andrew did not have endoscopy because,it was determined that it was behavioral problem, not medical one, because he intook just fine prior to 6 week of birth, so there should not be any anatomical defect that causing the aversion. The reason Andrew has aversion, because he threw up so often to the point that he subconsiously did not intake anymore to prevent the throwing up problem. As the matter of fact with just sleep feeding alone at 4 month Andrew was 16lbs putting him in 75 to 80%. I know it is very frustrating doing sleep feeding, but I refused to let my child to retard growth due to aversion, I will do whatever it takes to fight it. I used to cry if I tried so hard on sleep feeding then suddenly he coughed and threw it back out. I tried Breastmilk, all different kind of formula because at the beginning the doctor thought that the reason he got aversion to feeding because certain thing in my diet causing disagreement with the baby so they gave me the whole long list of foods not to eat, but when I look at that list, it does not make sense, because it pretty much rules out all food. After all the trials, the final winner is breastmilk to Andrew.
When Emma is awake did you ever tried to entertain her with toys while feeding, She might pay attention to something else by distraction she will suck at the same time.
You can continue sleep feeding for now until she is about 8 month if she grows out it is great. Otherwise, as I told you earlier, I adviced some mom with the same problem either spoon them the formula while awake or use medicine dropper or syrine so it is faster and cleaner.( Remember, syrine technique is also a learning curve for the kid, don't discourage if you are not successful the first time. It requires some practice on both sides)
After one year old for Andrew I still keep him on formula called Enfagrow made by Enfamil for children up to 36 month. Andrew is just turning to 3 y.o. not too long ago. Andrew is such a picky eater. He is in preschool now, but he still does not enjoy school food, some days he does not touch a single bite. We have to pack food for him to go to school, when he came back his food is empty, we were surprised because he never finishes his food at home without someone spoon fed him. It turns out he gave his food away.
I know it is frustrating but it will eventually passes. My second son came from the same gene pool, but we have experience this time, so we won't be too worried. My second one Anthony,always takes small feedings. He sometimes skip his feeding awake. My Mom refuses to surrender. She said okay if you don' t eat now, you will eat when you sleeping. With the small feeding his vomitting is much lower unless he is fighting.
You can try solid, but remember solid is not nutritionist as formula or breastmilk. Only treat solid food as supplemental. Too much food will not leave much room for formula.
Let me know what you think
Hanh,
Yes, I tried breastfeeding for one month. I even had a lactation consultant because Emma had problem latching and staying on breasts. My supply was too little and so after much effort of pumping, I realized that the stress really outweighed the benefit. Emma was losing weight in the beginning so we had to supplement her with formula anyways. I felt guilty and torn about it for a while but learned to accept my decision.
I am glad to know that Andrew gained weigh nicely through all the sleep feedings. I know what you mean about not letting your baby lose weight at all cost. It is so hard sometimes though and when I see other babies eating so much wide awake, I wish Emma would eat like them. My worry is I don't know when she will grow out of it and if she will lose weight at some points.
Emma did not spit up that much. She did spit up some before but now she only spit up when she is on her tummy while being very active on her playmat. I notice before after we burp her sitting up, she would spit up some but now not anymore. However, when she reflux which means she does not spit up but all of the sudden, it probably irritated her esophagus so she would cry and arch back. So far, those episodes decreased to once or twice a day. I am monitoring it to make sure that the symptoms will disappear completely if that. I am hoping now that we are increasing her prilosec dose, her symptoms will be control. As long as she feels completely comfortable, our hope for her to drink awake might happen. What do you think?
I am contemplating on getting different formula for her to try ie similac sensitive, similac soy? By the way, I forgot to mention that I mixed high calorie formula for Emma which means 3 scoops per 5 fluid oz instead of 6 to get more calorie for her.
Hows Anthony doing? how much does he take now?
Let me know how you are doing as well. Thanks Hanh!
Vy
Vy
How is Emma today? Any Change? When and what trigger the feeding aversion on Emma? You have said that she arches her back "in the sudden", can you elaborate on it. Did she arch when you attempt to feed her or while on sucking the nipple? Did her ped see she arch her back and dx her with GERD? You said she rarely spit up, this happens before or after the medication was prescribed? Do you hold her vertical after feeding 30 minute before putting her down? Does she sleep on her back on the crib or does she prefer the swing? If she has sleep feeding, how much does she take at the time? How often does she nap? Does she sleep over night yet?
Emma probably has silence reflux like Anthony, my younger one. Andrew had reflux with bad vomiting. From the day I brought Anthony home from the hospital, I already noticed he is arching his back while feeding, therefore I break his feeding into small one like 2oz at the time, I burp him at one oz then continue feeding. He does not like feeding as any other kid his age. I have enfamil gentlase available at home besides breastmilk. Now I tried to feed him 80 cc every 1.5 - 2 hr, sometimes he fights hard and refuse feeding. Then we wait for him to falls asleep to feed the missing meal. I currently pump and bottle feed him breastmilk, I never try to have him latch on, because I work full time and I return to work 5 wk postpartum. My Mom is helping me, she does have experience with Andrew sleep feeding, so we less stress out compare with what we are going through with Andrew. I even have to hired a Nanny to help my mom out with Andrew back then because it is way to hard to do solely sleep feeding.
I am not against concentrated formula, however, there are two thingsyou should consider. One is to supplement water to prevent constipation, and inadequate water for hydration. two concentrated formula change the taste, and baby knows it. What you can do is when you offer her bottle awake, should mix the correct concentration, so she does not hate the taste of it. If she does not take it at all then you can add more powder for sleep feeding. When she is awake, offer her the bottle of water, to reintroduce her the fun of sucking. She might programmed herself to dislike the taste of formula, but she might take water, that is what Andrew did. You can also offer water in the dropper or spoon.
Unlike Andrew, Anthony takes some feeding awake with much effort of distraction by toys or a live person's entertainment. I know what you mean when you said seeing other kids taking the bottle out in the public and wish our kids are the same. Believe it that what I wish, but I learn to accept each child is individual, and not the same, we took one day at the time. Even with sleep feeding solelly or partially, with my Mom's help, both kids are doing very well with their growth chart, Andrew is btw 75-90 percentile, Anthony is 90 percentile on weight and length. My Mom told me don't be sad about the feeding habit most Asian kids are picky, the pickier they are the smarter they are later(at least that how it runs in my family, no kids are easy). I am not sure if it is true, Andrew is quite gifted(probably in his parent 's bias oppinion) He is 3 y.o.now but in the 4 y.o preschool program, he can read pretty well and do some math, his teacher is quite impressed. Keep that comfort thought in your mind.
Your goal now is to get some awake feeding to Emma. But like I said if you are not successful at this month, don't be discourage, Andrew went on strike completely for four month straight. I am not sure if I mention, I only had Andrew stayed on med for about a month or two month at the most. My husband is a family practice physician himself therefore he did not want his kid to stay on med if not too symptomatic. Andrew 's pediatrician does not believe much on the med either, but the med is prescribed from GI doctor. By the way, how did you get Emma to take her medication?
You can email me directly if you want at trieuhanh@yahoo.com. Sometimes, I could not open your email due to broken link.
Hope you have a good day with Emma today.
Hanh
Vy
How is Emma today? Any Change? When and what trigger the feeding aversion on Emma? You have said that she arches her back "in the sudden", can you elaborate on it. Did she arch when you attempt to feed her or while on sucking the nipple? Did her ped see she arch her back and dx her with GERD? You said she rarely spit up, this happens before or after the medication was prescribed? Do you hold her vertical after feeding 30 minute before putting her down? Does she sleep on her back on the crib or does she prefer the swing? If she has sleep feeding, how much does she take at the time? How often does she nap? Does she sleep over night yet?
Emma probably has silence reflux like Anthony, my younger one. Andrew had reflux with bad vomiting. From the day I brought Anthony home from the hospital, I already noticed he is arching his back while feeding, therefore I break his feeding into small one like 2oz at the time, I burp him at one oz then continue feeding. He does not like feeding as any other kid his age. I have enfamil gentlase available at home besides breastmilk. Now I tried to feed him 80 cc every 1.5 - 2 hr, sometimes he fights hard and refuse feeding. Then we wait for him to falls asleep to feed the missing meal. I currently pump and bottle feed him breastmilk, I never try to have him latch on, because I work full time and I return to work 5 wk postpartum. My Mom is helping me, she does have experience with Andrew sleep feeding, so we less stress out compare with what we are going through with Andrew. I even have to hired a Nanny to help my mom out with Andrew back then because it is way to hard to do solely sleep feeding.
I am not against concentrated formula, however, there are two thingsyou should consider. One is to supplement water to prevent constipation, and inadequate water for hydration. two concentrated formula change the taste, and baby knows it. What you can do is when you offer her bottle awake, should mix the correct concentration, so she does not hate the taste of it. If she does not take it at all then you can add more powder for sleep feeding. When she is awake, offer her the bottle of water, to reintroduce her the fun of sucking. She might programmed herself to dislike the taste of formula, but she might take water, that is what Andrew did. You can also offer water in the dropper or spoon.
Unlike Andrew, Anthony takes some feeding awake with much effort of distraction by toys or a live person's entertainment. I know what you mean when you said seeing other kids taking the bottle out in the public and wish our kids are the same. Believe it that what I wish, but I learn to accept each child is individual, and not the same, we took one day at the time. Even with sleep feeding solelly or partially, with my Mom's help, both kids are doing very well with their growth chart, Andrew is btw 75-90 percentile, Anthony is 90 percentile on weight and length. My Mom told me don't be sad about the feeding habit most Asian kids are picky, the pickier they are the smarter they are later(at least that how it runs in my family, no kids are easy). I am not sure if it is true, Andrew is quite gifted(probably in his parent 's bias oppinion) He is 3 y.o.now but in the 4 y.o preschool program, he can read pretty well and do some math, his teacher is quite impressed. Keep that comfort thought in your mind.
Your goal now is to get some awake feeding to Emma. But like I said if you are not successful at this month, don't be discourage, Andrew went on strike completely for four month straight. I am not sure if I mention, I only had Andrew stayed on med for about a month or two month at the most. My husband is a family practice physician himself therefore he did not want his kid to stay on med if not too symptomatic. Andrew 's pediatrician does not believe much on the med either, but the med is prescribed from GI doctor. By the way, how did you get Emma to take her medication?
You can email me directly if you want at trieuhanh@yahoo.com. Sometimes, I could not open your email due to broken link.
Hope you have a good day with Emma today.
Hanh
Hi Sonja,
My 2 month girl has been on Zantac since she was 3 weeks old. She is having the exact same symptoms now - refusing breast when she is awake. She does not even want to be held by me. Initially she was gaining good weight and then after her 2 month appointment she started to slow down.
The doc has doubled the Zantac dosage and it does not seem to help much with her wake time feeding. I have been feeding her ( just breastfeeding ) in her sleep. It is getting harder and harder to get to even latch on when she is awake.
I even have an infant weighing scale now.
We had the exact same issue with my 3 year old and she did not gain much. But the issue went away on its own if this of any solace.
Any help is appreciated.
How is it going for you ?
Hello Lava,
Sometimes it is helpful to consult a lactation specialist. It may be challenging to find one with experience dealing with reflux and related issues so you may need to call around to find someone who understands what you are going through. There is some info from LeLeche that correlates a foremilk/hindmilk imbalance with increased fussiness and reflux like feeding problems. Again, a lactation specialist may be able to look at the feeding schedule and evaluate your daughter's suck and position, etc. With nursing, it takes both the mom and the baby working together. Try not to blame yourself.
It is really important to have frequent contact with the doctor too. Weight checks, overalll health, treatment options are all things that should be discussed on a regular basis. I know some parents who visit the pediatrician every week or two. Sometimes it is just to check weight, other times to look make adjustments to the treatment.
As a way to evaluate her feeding further, you could try pumping your milk and place in a bottle. The doctor can decide if thickening would help-if there is an overactive let down or the food comes up easily.
Upright positioning and sleeping on an incline may help too. More to chat with the doctor about.
keep in touch and let us know how you are doing.
Jan
Thank you very much Jan for all your support.
I have to look for lactation consultant in my area who can help me coz the one i saw just told me to feed during sleep.
The trouble is she will not go to sleep with me that easily. Infact she starts crying the moment i hold her when she is awake. It is almost as if she associates her feeding pain with me.
Meanwhile we are monitoring her weight using hte infant scale that we have bought.
Is it ever possible for her to eat when she is awake.
I was trying to find the post by someone mentioned Amy D but could not find it. Could you please send me a direct link to it.l
To add to this she does to take the bottle. So i am up all the night and even she is asleep feeding her. It is very tiring.
Also will the child be able to eat solids like cereal after the 4-6 months time frame ?
Hello!
I wonder if you have been referred to a gastroenterologist or feeding specialist. If the lactation specialist did not see a problem with her positioning/drinking, etc, it is probably time to move on. What you are describing sounds like a fear of eating. The doctor needs to find out why.
The lactation specialist is right that you can sleep feed (even though it is exhausting) while you explore a treatment that will allow her to eat while awake.
At the top of each HealthCentral page is a search function on the toolbar. If you search AmyD or Sonja, you will find the links to a rich discussion on sleep feeding and feeding a baby with reflux.
If you cannot find it, send me a private message and I will get the link to you.
Jan Gambino
The Reflux Mom
Thanks Jan.
I am so happy to get a response from you.
yes the lacatation consultan found no issues with her feeding position etc..
She is afraid to nurse due the pain - zantac seems to help but not completely.
I shall read the posts by Amy D and Sonja as well.
Thanks again and i really appreciate you taking time to respond
Dear Lava,
I'm really sorry to hear that your are having to go through this pain of feeding your baby. But the good news is that she is just 3 months old now and you have lot of time to correct the problem now itself by being aggressive in getting help early. My son too had the same feeding issues. I'm still giving him pumped breastmilk but in a bottle because he too was not feeding well on the breast. We too started with Zantac, which did not help much with weight gain and now he is on prevacid. The medication is helping him, he doesnt have any pain now but sleep feeding has become more of a behavioural issue now. If Zantac is not helping you then probably its time to move on to a PPI like prevacid and its very important that u address the issue of your daughters pain so that she can right away quit sleep feeding and not wait till it becomes behavioural when nothing can help, only time. Please book an appointment with a very good GI specialist right away as it will take atleast a month to get the appointment. If your ped doesnt refer to GI, you need to explain to her and insist that u want to see a GI. My ped did not refer us to GI specialist earlier and she never thought that sleep feeding was a big issue and I always feel so bad that she screwed up my son's life by telling us to force feed him. Please do not force feed your baby at all. Try feeding her awake as much a possible and if she doesnt, feed while asleep. Meantime try to find a way to address her pain asap. Please feel free to call and talk to me anytime. I'm ready to help you in whatever way I can.
There is lot of hope for your daughter and dont worry at all. she is just 3 months old and if she gets help asap she will right away quit sleep feeding. You can call contact me for any kind of help and support.
Good luck!!!
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Oh Sonja, I am sending virtual hugs to you today. You and your family have been on such a difficult journey together. I hope that you continue to work with the medical team and find some success with a combination of the medical treatment and the feeding team.
There has been a great deal of discussion on the HealthCentral/Acid Reflux Connection about sleep feeding. I have written several blogs about sleep feeding and I would be happy to talk with you further about this special feeding method. I hope some other parents of sleep feeders will offer their support and ideas too.
We are here to listen and offer our support. Let us know how we can help.
Best wishes,
Jan Gambino
The Reflux Mom
Dear Jan,
Thank you so much for your kind words. I read all your posts about sleep feeding-- I am going to try all those tricks, slowly, one at a time. Yes, it does help feeding him in a dark quiet room but we have not been quite successful at feeding him while he is awake. Music helps too. He can take an ounce or so but then he abandons the bottle.
Have any of your readers or anyone you know been successful at overcoming this phase? We don't mind if it takes time and lot of hard work-- we are prepared for it, but is there light at the end of this dark tunnel?
Regards,
Sonja
Hello Sonja,
Slow and steady is good with sleep feeding. The parents, doctors and speech language pathologists I have talked to tell me that babies often move away from sleep feeding in the first year. There have been a few babies who sleep feed beyond that. It seems that as the diet moves away from all liquid to some solids and than solids, the baby gradually moves toward a more typical feeding pattern.
The speech language pathologists tell me it is important to have a feeding screening to rule out a swallowing problem or other oral motor pattern that makes feeding difficult. Often some sessions with a speech language pathologist or a feeding specialist (in conjunction with medical treatment-diet, medication, positioning) will make a big difference when a feeding problem is identified.
I know there is a lot to sort out. Rest assured that sleep feeding is a reasonable way to offer nourishment as you and Team Reflux work to help your little guy manage feedings. See if you can find the Share Posts started by AmyD about feeding your baby when asleep on this site. It was surprising how many parents were feeding their babies at night due to reflux and other related digestive/feeding issues.
We are here to listen and support you as you go about the often lonely job of sleep feeding by night while trying to figure out how to help him by day!
Keep in touch-ok?
Jan Gambino
The Reflux Mom
Dear Jan,
As I read your message tonight (11:35 PST) I cannot tell you how soothing your words are. It offers a ray of hope that I have been waiting for. It takes away the guilt that I may be inadvertently harming my child by sleep feeding him. I will read the post by AmyD, I did read several posts on this site about sleep feeding but it's like my brain has stopped processing and I don't remember whether it was the one by Amy. Although I know that the issue is not as uncommon as I first thought, I feel inadequate for giving-up on active feeding. I have one more question for you-- how can I purchase your book? I want to gain as much knowledge as I can from Doctors, experts and parents.
I read the book Colic Solved by Dr. Bryan Vertabedian. I am glad that I did because now I know that my kid falls in the classic "grey-zone". The ped as well as the ped GI seem to be slightly indifferent about my concerns. My child is losing weight--rapidly. I was surprised when the Ped-GI told us that if you leave the child fussy and hungry he will eventually accept the bottle. My mommy-instincts tell me otherwise. He also said that I should concentrate the formula in order to get the colories into my child-- actually that make Avin extremely uncomfortable. Sometimes I feel as though my kid has nausea. Dr. Vertabedian is great but I would like to know if he can refer me to anyone here in San Francisco Bay Area.
I will keep reading your posts. Any advice/tips are greatly appreciated.
Dear Sleepless in the Bay Area,
I am glad your world is a little less lonely now that you know others are sleepfeeding their babies too. Unfortunately many doctors are not familiar with this issue. I have been writing about it as much as possible and I hope to spread the word mom to mom.
I do have quite an extensive discussion of sleep feeding in my book. There is a link from this website to purchase the book or you can go directly to www.refluxmom.com. The book will be available on www.amazon.com in a few weeks.
Please email me privately on this site for ideas about finding a doctor in your area. You might want to do some research and see if there is a feeding team or speech language pathologist who specializes in feeding. I know a family in the bay area who found a wonderful practitioner. I will see about linking you.
Hang in there!
Jan Gambino
The Reflux Mom
Hi Jan,
Ok, I will contact you off-line. Thank you so much.
Regards.