No more TCM!! Twin reflux mommy is needing help!

[Anonymous]

My 15 week old twin girls were diagnosed with silent reflux at 6 weeks old (though I knew at two weeks, but no one would listen). One is a sucking soother and one has a complete aversion to the bottle. We have done everything that most of the mommies (and daddies) on this site do to get their child relief, including finally going rogue with my own compounding using TCM and Marci Kids dosing. We FINALLY were having some improvement in the last two weeks (we have been on the TCM with OTC prevacid 10.5 mg 3 times daily) and now I’ve just learned that Phoenix Labs is closing…no more TCM, and no more solution for my girls. I just can’t help but feel like every time I gain a little bit of hope, a door gets slammed in my face.

What is this mommy to do? I was reading up on compounding with CMS/powdered calcium carb/or TUMS, but I’m just so bummed that I had to stop reading…my anxiety about switching things again and potentially having flare ups if alternatives don’t work was just too overwhelming.

So so sad and overwhelmed,

[hellbennt]

it IS overwhelming!

maybe you can get a family doctor to work with you? sometimes a family doctor is more open to listening and really working with you than a pediatrician is…

in the meantime, when you can manage, sift through all the information and you’ll come to a decision…

hang in there!

so glad you found us!

[hellbennt]

I’m working on digging up all my mixing instructions to make a page…

how are things with you?

[Anonymous]

We’ve taken a step back with one twin. Her aversion is just so stubborn. I have to remind myself that some babies will only sleep feed, and thank heavens we haven’t gotten there yet. Have an appointment for their first shots tomorrow (have been putting them off due to other posts about regression with vaccines) and I just have to keep telling myself tat I can’t put it off any longer and that they are stronger than I realize 🙂

Will also ask doctor for zegerid 40mg packets…she hasn’t been on board with anything so it may be a challenge. If this visit doesn’t go we’ll, I’m switching pediatricians. We saw a gastro specialist at Tx Chikdrens about 5 weeks ago, and he was a total waste of time. Said all babies have reflux and that I should feed each twin when they cry. Said I caused the aversion and that babies have survived reflux for centuries without medication and that my girls would too. I asked if 15 oz per day was good enough and he said “look at them…they’re actually slightly overweight”. I asked if it was enough fluid intake and he said as long as they have three wet diapers per day. Did I mention he also asked if we were first time parents? Then he just laughed and said “I have three”.

Anyway, trying hard to read her cues, and only offer the bottle when I think she wants it, but when she won’t eat for 16 to 18 hours, and she’s losing weight, that’s just so hard.

On a lighter note, my twin that was the hard one to feed in the beginning, is now doing so great on the prevacid with TCM. She’s thriving and is sleeping well.

Thanks for following up with us…glad to know that someone out there will listen to me 🙂

[Anonymous]

Welcome to this site. It is a great place to get support, ideas, and help!

I personally think that if I was you I might feel a little disgruntled with the doctor. He seems a bit rude to me. 🙁

I too kinda got that kind of treatment from my children’s GI. She said “Your children look healthy to me”. And then suggested I read a book titled “Colic Solved” written by a different pediatric GI. Although I was really impressed with the book, I was not impressed with me doctor. I had gone to her in hopes of getting help and answers not a shrug and a brief look at my “healthy looking” children. 🙁

Anyway, I have since found that some of the best help and advice comes from other moms who have “been there”!

[hellbennt]

Caarafate:

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

The role of reflux in developing unusual eating patterns”>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 is vital that the young child receive proper medical diagnosis and treatment 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.

[hellbennt]

any news?

[hellbennt]

dvargo

PLEASE share your story!
this site is here for YOU and for OTHERS who find it, so YOUR story and information/experiences/advice will help others, as THEIR information has helped you !

(I’m also going through & deleting inactive members

[Anonymous]

Wanted to give an update on us! We went to the OTC prevacid with applesauce and spaced out 30 min before meals and were trying hard to stretch out the last of our TCM. Myh opinion is they are equally effective (the TCM and the spacing out with applesauce) but no one method will eliminate ALL of the symptoms and these reflux babies are prone to flare ups (as many previous mommies have shared and I have witnessed).

OK now for the major news. The soy was becoming more and more intolerable for my aversion twin, I was hoping to wait until she was 6 months to try a homemade goat’s milk formula, but her intake dropped below 10 oz in a day for several days and I literally injured myself trying to feed her with all of the bouncing and distraction tactics that we have adopted. So I rolled the dice and made the formula, and we haven’t looked back. We saw a MAJOR improvement almost immidiately (within 48 hours) and she is almost a normal eater now. We had a flare up with vaccinations two weeks ago (everything else constant) but things normalized, and so I realized once again, that this is the nature of the reflux. But it is scary because you don’t know if something is really working, or if it’s going to be a temporary improvement.

I want to post so much more, but am so strapped for time. Hope this helps. I will check this string if somebody repies with any questions.

[hellbennt]

please post the recipe – where you got it – how you make it – any tips & tweaks- how old baby was when you first tried giving it-

thanks! and yes, everything can cause flare ups: getting sick, vaccinations, teething…

[hellbennt]

bump- there’s a mom with an 8 month old w/ a feeding aversion & she is desperate!

[Anonymous]

Ok, what to say to a fellow aversion mom to get you through the next hour, day, week, year. Here goes:

Trust your instinct as a mom. I have tried very hard to have a conversation with our pediatrician about the aversion/reflux and she is basically clueless. I have had to take things into my own hands at every stage, and am so glad I did. Since both of my twins had silent reflux, but one would eat with severe pain and arching and the other just refused the bottle…I have seen the spectrum on how this manifests.

For us, getting a proper dose of medication down was a first big step. Secondly, getting to the bottom of why they are refluxing was next. This is different for different babies, and sometimes insolvable. For one of my girls (the one with the aversion) it was a total game changer. I was VERY reluctant to try a homemade goat’s milk formula because of so many reasons…but we literally tried EVERYTHING short of neocate/elocare and nothing worked. The soy was a mild improvement for about a month and both started to decline. Now I realize that my aversion baby has a cow/soy protein intolerance and the goat’s milk protein is just less allergenic for her. I’m also so glad that they are eating real food too. The reason we just didn’t try the elocare/neocate was because I frankly didn’t want to talk to my pedi again about it, she had written me off as paranoid and over reactive and again I refer to my first statement…I had to trust my instincts and do what I felt was best for my babies. The goat’s milk made sense to me and I wanted my girls to eat something I could make with my hands if not my body – I had to TRY it before giving the amino acid based formulas our last effort. Lastly, accepting the fact that flare-ups WILL occur, but they will also pass. It took a lot to get to this point, because so much trial/error and eventual recovery/improvement had to occur. But even now, when they have bad days (and they do) I can accept it, and look for the resolution as I know it will follow.

My aversion twin still has an aversion. I’m one of two people who can actually feed her. She will take the bottle a first time from anyone (now) but how much she drinks has a lot to do with how we hold her, keeping her relaxed during the feeding, and feeding her enough that we know her hunger and satiety cues. 6 weeks ago, she was eating a total of about 10 maybe 12 ounces per 24 hours over 6 feedings. Today she ate roughly 28 ounces in addition to two solid meals. She also has some developmental delays (doesn’t roll – either way) and she’s got some weird tics – we’re hoping its the reflux and she will continue to improve with time. So again, it’s not perfect, but it’s a vast improvement because my baby will actually eat. She even purses her lips together in anticipation of the bottle, something she never did during the height of the aversion.

There are many recipes on the Internet for homemade goat’s milk formulas. My suggestion is to research them, and try an easier formula to be sure your baby can tolerate it, then add things if you find that it is helping your LO’s reflux. We have changed our recipe over the last 6 weeks and will continue to change it as the girls get older.

Update:

Went for the 6 month checkup last week and let the doc in on the formula change – she freaked. Asked if I was open to doing blood work on the girls, I said OK. They went today, hope results are awesome and we can continue to move forward. I talked about the developmental delays with my aversion twin, she wrote me off again and I will be reluctantly switching docs after the blood results. I need someone who is going to listen to me and think outside the box. I would have loved for my girls to have been inside the box eaters, but they broke the mold and I for one know that this is not the only way God has made them special 🙂

[hellbennt]

thank you!! I will save this! please post more if you think of it

[hellbennt]

still hanging on!

I don’t think you can post (maybe the pm function works?)

but I’m still here!!!

cleaning up this MESS!!

[hellbennt]

hello

I think I’ve solved the spammer problem for now –

update, please

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