Help me out – please!!

[Anonymous]

I Posted this same thing in the introduce yourself category, but I thought I should post it here as well. ……………….

Hi Everyone. I came across this forum by searching “acid reflux”. I have two children, Ashley (3years) and Dallin (almost 4 weeks.)

Our little girl had acid reflux very early on. I think she probably always had the “signs” by only started crying/screaming about it at about 4 weeks. The doctor tried putting her on prevacid, but I didn’t see a change in three days (I’m not sure how long I should have waited), and decided we needed something different. A friend of mine said she saw great success for her daughter with cimetidine. So I asked for that. It helped her immediately, and she was a happy baby on cimetidine for about one year. If I didn’t give her the meds, you could definitely tell.

I just gave birth to Dallin on Feb 28th. We were really hoping he wouldn’t have acid reflux. It seems to run in my husband’s family, actually. Anyway – right away he showed signs, and deep down I knew. Here are some of the things he has done from the very beginning…

Strong tongue thrust

Strong suck/starving all the time/wants to eat constantly

Hard time breastfeeding

Spit up in throat, and even had a scary choke/cough episode at only a day old

Lots of hiccups

Stiffens up a lot

Arches back A LOT!

LOTS of burps/gas/etc

Grunting

As of about 3 weeks old I saw these symptoms added to the list…

More spit up (not a TON, but after every burp and in between feedings. It is getting worse and worse.)

Breath and spit up smells very acidic, and stools smell different to me

A lot of choking/coughing episodes

STRONG hiccups with accompanying crying and pain

Lots more crying (especially at night)

Lots of grunting/”clearing” throat

Crying when laying down

Very stuffy nose!

Started sleeping WAY smaller stretches at night.

Gulps down food, swallows tons of air, cries, burps like an adult male!, cries, acts like he has a sore throat, etc…

It quickly became clear there was no denying he had acid reflux! I went to the doctors and he wouldn’t give me any meds!! He just told me to feed him every hour. I mean, come on!? He said you won’t find a single doctor around (I’m living in New York city) that will prescribe anything for a baby that young. Well, a day later he got so bad I was thinking of going to the emergency room because he would choke and stop breathing!! I called the after hours for my drs office, and went to a different doctor. She prescribed Zantac. 1/2 tsp two times per day. Dallin is now 10lbs 10oz. (He was 8lbs 10oz at birth.)

Anyway, it seemed like it really helped him have a better feeding right after the first dose… but I don’t think it’s working. It’s definitely not like when we started our daughter on meds and she was a happy baby in a day or two! He seems a little better, and it seems to help most right after he has been given the meds. I’m just not satisfied.

What do you all think? I feel like I am surrounded by doctors who will not prescribe medicine, or who will not prescribe the right dosage. I just don’t want him to be in pain anymore!!! Do you think I should push for something like Prevacid? How long would it take to start working, and what would be a correct dosage? What if my doctor won’t prescribe the correct dosage? Also, because of a billion reasons he won’t be getting breastmilk for much longer. I am currently pumping, and I’m trying to slowly find a formula that works well for him. How soon can you tell if a formula is good for your little one? I have tried the new Good Start with probiotics, regular similac with dha ara, and soy isomil. My daughter took Soy formula, and that really helped…but it almost seems like my son immediately reacts badly to the soy and the Good start. He’s ok on the milk based similac – but what I mean by ok is just not choking and spitting up any MORE than he has been. I still think there might be a better formula out there. If you’ve tried soy, is there a point in trying lactose free?

I don’t have many options….My husband is a student at Juilliard, and our income comes from piano students. He will have a much better job when we move to so california at the end of may. We are now on Medicaid, and I don’t have many doctors to choose from. It is SOOO frustrating to KNOW that something is wrong with your child, and have a doctor suggest he just possibly has colic, or is completely normal.

Sorry this is so long. I am just so sad about a lot of things. I fought so hard to breastfeed, and that isn’t happening. I wanted to pump, and that isn’t working out. And now my son is in a lot of pain, and I feel like I’m powerless to help him!! Oh, and did I mention that my daughter got the stomach flu today?!! I need sleep, and I need some advice. 🙂 I’d love to have your support and ideas.

Thanks so much!!!!!!

[Anonymous]

Hi and welcome!

I am sorry to hear about the reflux troubles. I have had 2 refluxers also and now still working through food intolerances and other issues with both kids, so I know how tough it can be!

My first suggestion if you want to keep up with Breastfeeding is to maybe try cutting out dairy/soy from your diet. It’s in everything. You can try the TED diet. There is a forum just for this. Many say the diet is really hard but it paid off in the end. If you want to try formula or supplementing, it has been my experience that refluxers are soo very sensitive to milk and soy that a lot of them end up on hypoallergenic formulas like Alimentum or Nutramigen. Landen ended up on an Elemental formula called Neocate. Regular hypo formulas still have milk protein in them, they are just broken down in a way to fool the body into thinking that they aren’t there. Neocate doesn’t have any milk or soy protein at all. There is another one called Elecare that you could try if it came down to it. My first refluxer Kaden (now 3) was also able to do soy (Isomil) as a baby. They are all different.

As for meds, I would def try getting your baby on a good PPI drug like Prevacid, Zegerid or Nexium. If your baby is in pain it is possible that it could be erosions on the esophogus. Zantac doesn’t heal erosions, it is just an acid reducer. You can check out dosages for PPI’s for your baby’s weight at http://www.marci-kids.com. That is the best resource with the most up-to-date info for babies/kids with reflux and how to treat it full force. You can print info and fax it or bring it in to your babies pedi. in the meantime there is always Mylanta Cherry Supreme!!!

Good luck, I know how trying all of this can be! Hang in there.

jilly782008-03-25 19:38:25

[hellbennt]

hi & welcome!

I have a LOT to say & (most of) it’s here:

J

Groupie Intro: my intro: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&PN=1&TPN=1

so glad you found us!

~laura

[Anonymous]

Thank you for your responses. I’m going to print out the info from marci-kids and see if I can’t convince a doctor in my insurance. We’ll see. He just keeps getting worse. 🙁

[Anonymous]

Hi and welcome!

I’m another mommy who’s “limited” by medicaid…but I’m finding that once you DO find a dr who’s willing, it can definately be a life-saver….or at least sanity-saver!

My son’s nurses in the NICU first brought up the possibility of reflux because of a snotty-sounding nose and I know we’re due for an increase in medication when he gets snotty-sounding now, so reading that sent alarm bells off in my head. Actually, most of what you wrote reminds me of my son at the beginning…including the frustration of not being able to even get a diagnosis let alone some help!

We finally took him to the ER at a hospital covered by his medicaid where they did an upper GI to evaluate him for pyloric stenosis. He didn’t have PS, but they saw the reflux sure-as-can-be and from there we were able to get help. It sounds bad…but especially with medicaid…going to the ER can sometimes get things done that you can’t get going to office visits.

The PPI’s can take up to two weeks to start working…cherry mylanta supreme is a life (and sanity) saver until it can kick in. No worries about trying to talk a dr into it, either!!!

I hope you can get him (and you guys!!!) some comfort!!!

[Anonymous]

Thank you for your response! I too have thought about taking him to the ER. I wasn’t sure if they’d prescribe anything. I hadn’t even thought about getting him evaluated. Sometimes it’s nice just knowing there are people out there who have struggled in the same way. I’m still trying to figure out where I can find Mylanta Cherry Supreme. I may have to buy it off the internet. How much do I give, how often, and does it matter that I am also giving him Zantac?? Also, I’m sure it is different from state to state, but I am wondering if my medicaid will even cover the PPI perscription. I wonder if they are least likely to cover the new one ..(starts with a z?)

[Anonymous]

I get the mylanta at any pharmacy…or even Walmart. It’s with the rest of the antacids. I give lil man about 3/4 of a ml up to 4 times a day right now. When he was younger and lighter I gave him around half a ml when he got extremely fussy and refluxy. Basically, as long as it’s not giving him loose stools, you’re doing ok with the dose…if they get loose, back it down a bit.

As far as the prescription coverage goes…I’ve not had a single thing prescribed yet that they won’t cover…including synagis shots that run $1000 a month!! What I’ve found so far is that (here at least) medicaid seems to go by the rule that if a dr thinks it’s necessary, they’ll pay it. Hopefully it will work that way for you, too!! Just remember you’re not alone and (they keep telling me while I’m covered in puke! LOL) it WILL get better!!!

[Anonymous]

I know how you feel! My daughter smelled nothing BUT “vinegary” as her father put it, she vomited out of her nose until she was 4 months old! She’s most likely had acid reflux since birth, but I had to twist my Dr’s nipple (ok, not literally, but I had to fight) to get just the ZANTAC at 4 months! She hadn’t been gaining weight, not sleeping, spitting up every bottle, crying all the time… horrific. At 6 months, she was classified “failure to thrive” and put on prevacid, but not a full dose! Luckily, everyone on this site is FANTASTIC and pointed out that Marci-kids website. I called her Dr., (I got a completely NEW Dr.) asked him to take a look, and he adjusted her dose that afternoon to what the website said! She was also put on Nutramigen, which has been fantastic. Hardly any spit up, just a happy baby. For over a week, she’s been on the nutramigen, and I wanted to see how much it was helping her, so I snuck a bottle of regular enfamil in. Within 45 mins to an hour, she was fussing, crying, RIGHT back to where she was before the new formula. So take some of these ladies seriously, the milk/soy protein intolerance is a killer for some babies with reflux…. I wouldn’t believe myself that it could bother her sooo quickly, but it did, that was the worst I’ve seen her in a week and 1/2! With the proper meds, she’s been sleeping at least 5-6 hours a night, and the other night, slept over 8 HOURS straight!

I feel for you, I hate Dr.’s who don’t understand. Do the research YOURSELF, and trust your instincts. Mommies always know BEST!!

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