TELL dr you need a feeding therapist – include Swallow Study – they’ll look at HOW baby feeds- chewing, swallowing, the mechanics – even if you feel it’s not mechanical, but behavioral ,at least you’ll get it checked out & be in touch w/ the people who deal with this…
I’d also consider a scope, an endoscopy to SEE what’s going on in there & they also take tiny biopsies – if there are EOS cells present it’ll let you know there’s an allergy/intolerance going on – if all is clear- no irritation, then you’ll know the meds are working and that it is behavioral…hang in there! do you have a good ped GI? who’s treating baby? what formula? breastfeeding? solids? how’s poop & gas?
update! please? I’m trying to get this board going again. it’s helped all of you, so please help it!
A little more on our situation:
Babe is twelve weeks old. He’s reflux babe three, so I had been around the block already. I gave up milk and soy the day he was born; after having his severe tongue and lip ties clipped at four days, he started on reflux meds at six days. I tried to home-compound zegerid and Prilosec, so I wasn’t dependent on TCM, but it made him super sick and gave him terrible gas. When he was nine days old, I started TCM and he started to gain back the weight he’d lost.
He is exclusively breastfeeding, luckily, because at a month it became apparent – with no change in his terrible rash or blood in how stool – that he needed a TED. So I am on week 8 of a total elimination diet. So far, he reacts to milk, soy, gluten, nuts, eggs, onions, carrots, and tomatoes. TCM is the *only* med that doesn’t bother him (including OTC mylicon, MCS, etc.). I am hoping to find some TCM or BB so I don’t have to space around feeds and can keep baby gaining.
there are instructions on how to make your own 🙁
I realize that’s not what you’re looking for…
can you post an update? how old your baby is – what formula/breastfeeding/special diet & meds – how about your dr? happy? just ‘eh’ ? not happy?
Thank you for the reply. I stopped the form on Thursday and have been giving her breast milk only from the freezer. I had to get rid of all breast milk from before TED so I don’t have much supply. I increased pumping to four times a day but still only getting 12 oz a day. Will keep trying. How can I get her to drink? I took her to the dr Sat and they said she could get by like this for a week but not much longer. Even her night feedings she starts crying as soon as she feels the nipple or after just a couple drinks as she starts screaming before she has even drunk a half oz. she also has been home all weekend so it. Can’t be the daycare. Any ideas to help her drink? Also any ideas how long for milk to stop causing a reaction for her with reflux? When she is not being fed she seems happy and doesn’t appear to be in pain. I’m getting scared as I don’t understand this. It’s so much worse than her feeding problems early on. She is getting worse by the day. Thanks in advance.
ngarcia 2013-11-25 08:19:45AnonymousInactive
Ok, sadly I’m back. Please help.
My daughter is still on Prevacid Solutabs morning and night (21 mg). She is 13 pounds. She takes zantac once a day with liquid Rolaids (similar to Mylanta cherry supreme). I never stopped medicating her even though she had been doing better. I started the TED on 8/6 and found it best to avoid eating dairy, soy and wheat.
On 8/31 her reflux issues seemed to have resolved. She was drinking about 25 oz/day without much issue at all other than pain free spit up. This continued for 48 days and on 10/19 I introduced a milk based formula (Similac Sensitive) to supplement my breast milk b/c I had gone back to work full time and my milk supply was low. I continued the TED in case she ‘failed’ the milk based formula. Well things seemed fine until 11/19 (this week). Coincidentally this was the same day she started daycare (my hubby had been home with her while I was back at work). In the evening with me she kept turning her head and spitting out the bottle along with some crying. 11/20 she again showed some signs like turning away from the nipple and crying. 11/21 she had a pretty bad day both with daycare feedings and at home. As soon as we put the nipple near her mouth she would cry and get upset. Today has been the worst day yet. As soon as we put her into feeding position she screams and absolutely refuses the bottle (even wakes up from sleep screaming and also is not distracted by TV, etc). She drank 4 oz. at daycare and I fed her 1.5 oz through a medicine dropper so in the past 24 hours she has had a total of 5.5 oz! I’m worried about her getting dehydrated so I called the Dr. and we have an appointment in the A.M. As of yesterday we stopped giving her any of the form but I’m worried about being able to give her anything since she is completely refusing. When she is not being fed, she seems fine and happy. She takes solids by spoon very well (sweet potato, peas, pears, rice cereal, banana, avocado). Nothing has been changed with her solids in the past 23 days. I’ve tried breast feeding her vs. bottle and she doesn’t really suck enough to stimulate milk and she bites me a lot so that hasn’t worked. Previously before TED kicked in I requested Carafate from the Dr. and from his colleague and from the Dept. Head – all refused and said b/c she was a “neonate” that they will not give her that medication.
Whats going on????
Why would she be okay on formula for a month and then so suddenly get to this point of refusing the bottle. It honestly seems like out of the blue. Could it be that she started day care? It doesn’t seem like that would be the case since she is doing the same thing when she is at home. I honestly don’t know what to do. I’m still pumping and on TED but I only get about 12 oz a day. I work long hours and come home to try and also take care of my 3 year old. I could increase pumping if I had too. For now I’ve just been giving frozen breast milk (no form) but I’m worried I won’t be able to give her anything if she refuses. Is feeding tube a bad idea? Should I try to give her more solids? Should I try a sippy cup?
Northern California, Kaiser Permanente
Dr. Durant is one of two GI Specialists in the region for Kaiser. He has refused to prescribe Prevacid or Carafate to help my daughter and suggested a feeding tube instead without even evaluating or weighing her as we have been on contact through email. He persists that I must stop breastfeeding (TED) and move to Neocate. In addition, I perceive his responses to me as flippant and condescending.
hellbennt 2013-08-29 19:04:09AnonymousInactive
Ok, response from him after I pushed back…omg!
“If Isannah is willing to drink the Neocate then there would be no need for NASO gastric tube (this is a painless, temporary feeding route that we routinely use in the nursery to feed babies who are unable or unwilling to drink their formula.) Her crying and pulling away after drinking but an ounce of breast milk is what we see in infants who have medical conditions associated with negative (painful association) feeding experiences (i.e. food allergies with secondary gastroesophageal reflux.) The “escape” behavior is to cry and turn away from the nipple. Here again, the treatment of choice would be to treat the underlying food allergy. You have already tried your best to eliminate the commonest food allergens from your diet and despite this Isannah’s eating behavior has not yet improved. Besides an empiric trial of an amino-acid based infant formula like Neocate, the only other study I can recommend at this time is for Isannah to undergo either an xray or an upper endoscopy looking for birth defects in her esophagus and/or stomach that would cause her to feel discomfort during mealtimes. At your request I will submit a request for a second opinion in your daughter’s case.”
-ok I need to vent. I don’t know why he said she isn’t getting enough calories, he hasn’t weighed or examined her. He’s been consulting with me via email. When I pushed back I asked him to be collaborative with me in treatment options. And if he wasn’t wiling to do that to refer me to his colleague. Wow! I guess rather than be collaborative he will give me a second opinion.
I’m with Kaiser and there are only 2 specialists in northern CA. Lets see how the other one is. I will search this site, maybe if there is a specialist in so cal I can check into that!
you do not crush the beads –
try pears? when breastfeeding mothers are on a strict FPIES-like diet to make their milk acceptable for their babies, they may eat pears…
I don’t think lemon juice would be good for an infant?
OTC w/ applesauce, pedialyte, etc:AnonymousInactive
Today is day 9 on TED and day 11 on Prevacid. Up until about 5 weeks old her poops were seedy yellow as she was getting breast milk and two bottles a day of Neocate milk based formula as directed from the NICU. I stopped the formula and eliminated dairy from my diet because she was showing the beginning of reflux symptoms. After that her poops turned from seedy yellow to more on the watery side, they are greenish brown and she goes every few days. She used to go several times a day when it was yellow color. there has been No change with her poops since TED or meds.
Since starting the meds and TED, I have noticed that she has less gas now and seems like less gas pains. I have also noticed her cradle cap seems like it is clearing up. She has gone from all bad feedings to having a few good feedings now where she doesn’t cry although she is usually sleepy during those. These are minor improvements as she still does the suck, swallow, scream routine during the majority of her feedings.
We have been giving her half a solutab every 12 hours. We give in a syringe with water then feed 30 min later. Is this right? With the Prevacid you are referring to, is that OTC? What if she can’t take solid foods yet? Is there a different medication you think we should look into?
I talked to the GI specialist today and he said he thought we should give everything 3 weeks as he said sometimes the symptoms can take this long to clear up. I’m just afraid because we are getting close to the 2 week mark and I think I’ll lose my mind if she isn’t better at that point.AnonymousInactive
Ok iron pills are fine but the stool softener says ‘caramel’. Also she is on vitamins since I’m breastfeeding and it says ‘Caramel color’. What should I do?AnonymousInactive
I haven’t had a full blood panel done in over year.
Everything came back fine last time.
I have to go for my yearly PCP visit soon.
Ped is fine still waiting for our insurance to approve a pedGI doctor. They’re not in a rush I guess -_-.
thanks for the update! How’s your thyroid? Petuitory?
These can affect mood/anxiety,etc. just a thought.
I have Hashimotos, it’s a thyroid disease (under active/hypothyroidism)
Are you happy w/ your ped GI? Why? Why not? Please postAnonymousInactive
Not much, she now gets her meds 3 times a day.
I’m off the zoloft and taking 6000iu of D3 instead.
we haven’t had another episode yet. But I seen some weird behavior
if I pick her up too quickly from her bouncy seat, or lift her from my lap to a standing position. Her hand go up a tighten she tenses up and holds her breath. We are still BFing and 2-3 bottles a day.
kmomof6 2013-08-08 23:18:08
what is new? please update us!