Please Help (Hellbennt)?

[Anonymous]

Update: I found Erin using search. I think something was wrong with my other computer!

[Anonymous]

Omg check out this response from my GI Specialist. Keep in mind he has not even done any tests on my daughter to confirm reflux:

“The elimination diet is clearly helping and this helps solidify our working diagnosis of Allergic Enteropathy as the primary driving force behind Isannah’s fussiness and h/o regurgitation. Unfortunately she is not able to consume sufficient calories on the Dr. Sears diet and I suspect she is simply hungry. Carafate, by the way, is not recommended for use in infants with gastroesophageal reflux. Likewise, Prevacid has not been shown to be effective at controlling irritability or fussiness in infants with gastroesophageal reflux. The best treatment is to find and treat the underlying cause for the vomiting. In this case, it is food allergies. I believe it is time to move Isannah to a hypoallergenic formula such as Nutramigen or Neocate like we did in Maverick’s case. If Isannah is unwilling to drink this formula then we may have no choice but to put her on temporary nasogastric tube feedings.”

[Anonymous]

I forgot about the rule to keep emotions out of it and just had a temper tantrum with my response to the dr. 🙁

[hellbennt]

THIS is why I cannot leave here. THIS.

I’m so sorry! It seems to me it’s time for a new ped GI & for you to write up a bad review here, on the site!

Sometimes Family Doctors are willing to work with you, too.

Have you looked for a ped GI from the posts here, on this site?

The diet is clearly working! WHY does dr say she’s not consuming sufficient calories?

YOU ARE DOING THIS! next step: dose your baby yourself!

you’re on the road to figuring it out!

The reflux is the last step- you’ve already cleared up skin & poops!

HANG IN THERE!

[Anonymous]

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!

[hellbennt]

what a pompous jerk!

You know what? Go for the endoscopy- why not? Then you’ll know what’s going on in there – have them look for irritation (rather than ‘just’ structural abnormalities) & TELL them to take biopsies – if there are EOS cells you’ll have more information regarding allergies/intolerances

Is baby having difficulty eating? Have I missed this ? How bad is it?

Ok- I went back & read – you wrote that it was getting better…how is weight gain ? How is feeding, exactly?

hellbennt2013-08-27 21:56:10

[Anonymous]

Lol, that made me feel a little better! I responded to him and will keep you posted on next steps.

Actually her problem eating has been getting worse, it was better only a few days ( not sure why) . Her feeding actually continues to be the main problem. She takes a small amount well then screams in pain. usually she starts squirming first (a LOT of squirming) to the point i have to swaddle her, then i can hear gulping sounds, then she cries and pulls away. she is hungry and tries to take the bottle again but as soon as she swallows she starts screaming and that is how our feeding sessions go… one gulp at a time. On a good day she will drink 1.5 oz before screaming in pain. Good days we total about 24 oz. bad days she takes only 0.5 oz before screaming and crying. Bad days she takes in about 16 oz. feedings usually take an hour and I also feed her through a medicine dropper to get more down her. 🙁

I’ve tried very technique, nipple, and bottle you can imagine and nothing really helps. My son was the same but with him we could distract him. Not with my daughter, she will literally refuse to swallow and start spitting/spraying milk in my face. She can’t be fooled!

I did notice, and don’t want to get my hopes up, that when I add Zantac in shortly before a feeding that the feeding goes better. I did this yesterday and today and both times she took in 3 oz straight! Amazing as she hasn’t done that since she was 3 weeks old before reflux set in. She was gaining really well, about 2.5 pounds a month but her reflux episodes were sporadic. For the past 3 weeks she now has episodes with every feeding and her weight gain has slowed to a pound a month. She just hit 10 pounds but keep in mind she was 6 weeks early and only 4 and a half pounds at birth. ngarcia2013-08-28 23:15:25

[hellbennt]

Carafate

https://www.infantreflux.org/forum/forum_posts.asp?TID=13485&KW=search+feeding+aversion+forum

here’s more to help:

https://www.infantreflux.org/forum/forum_posts.asp?TID=13904&KW=feeding+aversion

https://www.infantreflux.org/forum/forum_posts.asp?TID=13876&KW=feeding+aversion

https://www.infantreflux.org/forum/forum_posts.asp?TID=13875&KW=feeding+aversion

https://www.infantreflux.org/forum/forum_posts.asp?TID=13866&KW=feeding+aversion

https://www.infantreflux.org/forum/forum_posts.asp?TID=13809&KW=feeding+aversion

https://www.infantreflux.org/forum/search_results_posts.asp?SearchID=20110108140213&KW=feeding+aversion&PN=2

Feeding Aversion:

https://www.infantreflux.org/forum/forum_posts.asp?TID=13904&KW

It is vital that the young child receive proper medical diagnosis and treatment

http://allchildrenstherapy.org/oral_motor_feeding_disorders

The role of reflux in developing unusual eating patterns

It is clear that many infants and children with GERD develop negative associations with feeding due to the reflux pain that feeding has caused them. If their pain is not managed adequately, the infant or child may develop secondary behavioral symptoms of food refusal, selectivity and oral sensitivity which can negatively impact growth and maturation and can lead to delayed acquisition of feeding skills. Infants and children with GERD may be hypersensitive to tactile sensations therefore do not explore objects with their mouths, which can lead to a lag in the development of the oral sensori-motor skills required for feeding. Introduction of spoon feeding may be delayed due to lack of readiness skills or noted increase of symptoms with introduction of solid foods. Young children also may have difficulty advancing to textured foods and may gag or choke while feeding. These symptoms (i.e., food refusal, selectivity and oral sensitivity) put stress on the feeding relationship between the young child and caregivers and may lead to counter-productive feeding practices.

The associations that infants and children make between the pain of GERD and feeding can remain even long after the pain of GERD has subsided. Young children may also be taken off medication when the obvious symptoms of reflux disappear yet their reflux may continue silently (meaning that stomach contents go into the esophagus but does not result in vomiting) and cause continued feeding problems. Therefore it of reflux, especially pain relief, before attempting a feeding intervention program. Although feeding therapy can be effective in addressing many types of feeding difficulties, without effective pain management, oral-motor, sensory and behavioral feeding interventions may yield disappointing, ineffective results.

[Anonymous]

Thanks for the info! I have still not been able to get carafate as none of the GI here will prescribe it to infants. The good news is I think the TED is finally helping. For about 10 days now she has had nearly all feedings pain free. Although she still doesn’t take in very large amounts she will take about 4 oz per feeding and she doesn’t cry. She still squirms a little but not as much as before. She stayed with my mom this weekend who had no issues feeding her. i. The past when she was fed by others it was worse because they didnt hold her a special way, etc. she also takes 15 to 20 minutes to eat instead of an hour. My stress level is way down. I’ve added avocado and chicken to my diet thus far so I’m feeling better about getting more protein and fat. I’ll continue to keep you posted, lets hope things have finally turned the corner! I’m still looking for the Mylanta cherry supreme and the slippery elm to see if that helps even more.ngarcia2013-09-09 09:50:51

[hellbennt]

YAY!!! So glad to read your news!!

you can also buy avocado oil and cook with it – I’ve never tried it, but I know others who’ve added avocado into their diet have used it!

You might want to try beans next? Maybe chick peas? then, if you’re successful with them you can have hummous, add them to your salad, etc.

are you eating lettuce? that seems pretty ‘plain?’ then you could have it on an avocado & chicken sandwich – is there bread you’re eating?

Maybe try that next, then, before chickpeas

what grains are you eating? just rice?

this is what I have for Mylanta:

you can find store brand equivalents. Try: rite-aid, cvs brand, walmart, target, Bartell Drug (West coast), Dollar General, brand names: Geri-Care & Geri-Lanta Supreme, meijer, etc- just look for one that does not list aluminum in the ingredients.

you can give 1ml up to 5 times a day- it’s safe, even for newborns. if you see loose stools back off.

you need to space the ‘mylanta‘ 4hrs from prevacid, but it CAN be given w/ zantac. we used it w/ zantac to help the zantac go down.

you can look online to find store brand equivalents.

here, I did a google search:
http://www.rxzone.us/product.cfm/rx/medicine/antacids–laxativesnbsp/genericantacids/Antacid-Liquid-Cherry-12-Oz-710723.html

http://shop.mywebgrocer.com/shop.aspx?&strid=55DF78707&shopurl=ProductDetail.aspx&pid=75998&clk_src=seopd&sc=SEOPD_CA_4795D138-B97E-465B-9428-AF62E970711D

cvs brand: http://www.cvs.com/shop/product-detail/CVS-Antacid-Liquid-Supreme-Cherry?skuId=191659

hellbennt2013-09-09 11:03:05

[Anonymous]

This is great info, thank you. I’m so happy too that she seams better. She just drank 5 oz peacefully and it makes me feel really good. Only grains I’m eating is rice. I’m going to try wheat so I can start a plain wheat bread ( if you can call it that). No lettuce yet! On the good side, I guess, I’ve lost 40 pounds and I’m in a size 4 jean. Can’t say it was a healthy way to lose the weight but at least I look good now. Lol. Thanks TED diet! 🙂

[Anonymous]

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?

PLEASE HELP!

Natalie

[hellbennt]

Posting from phone. It probably is the milk proteins have built up in her system. No reaction for one month is usual. Then the proteins can start to build. Sometimes, people do not see reaction until two or three months even. I would say it’s the milk? 🙁 hellbennt2013-11-25 12:54:23

[Anonymous]

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.ngarcia2013-11-25 08:19:45

[hellbennt]

hang in there, mama! try a little mylanta cherry supreme before eating- it soothes the throat (& it’s sweet!) – I never seem to have my links handy for you, but use the search button – go back SIX MONTHS – I did a google search for the various brands that are equivalent to the mylanta cherry supreme – also TELL the dr you need a prescription for carafate…she should be ok from the milk in the formula in about 2 weeks or so – maybe sooner…or later…to increase your milk, drink a LOT of water & maybe try fenugreek? it’s an herb – again do a search?

ok, you said that you can’t get a dr to rx carafate – do you have a FAMILY doctor? have you checked out the links : Finding a Ped GI near you?

have you posted there – post your horrible doctor(s) so others can know…

ok, mylanta info was posted a few posts above- here it is again:

this is what I have for Mylanta:

you can find store brand equivalents. Try: rite-aid, cvs brand, walmart, target, Bartell Drug (West coast), Dollar General, brand names: Geri-Care & Geri-Lanta Supreme, meijer, etc- just look for one that does not list aluminum in the ingredients.

you can give 1ml up to 5 times a day- it’s safe, even for newborns. if you see loose stools back off.

you need to space the ‘mylanta‘ 4hrs from prevacid, but it CAN be given w/ zantac. we used it w/ zantac to help the zantac go down.

you can look online to find store brand equivalents.

here, I did a google search:
http://www.rxzone.us/product.cfm/rx/medicine/antacids–laxativesnbsp/genericantacids/Antacid-Liquid-Cherry-12-Oz-710723.html

http://shop.mywebgrocer.com/shop.aspx?&strid=55DF78707&shopurl=ProductDetail.aspx&pid=75998&clk_src=seopd&sc=SEOPD_CA_4795D138-B97E-465B-9428-AF62E970711D

cvs brand: http://www.cvs.com/shop/product-detail/CVS-Antacid-Liquid-Supreme-Cherry?skuId=191659

hellbennt2013-11-25 13:01:36

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