Infantreflux.org | I need help......I feel helpless and terrified

This topic has 22 replies, 1 voice, and was last updated 15 years, 11 months ago by hellbennt.

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October 18, 2008 at 1:17 pm #57828

Anonymous
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Hi I found this board and I’m so happy I did. I’ll give you a quick rundown of our situation. My son was born @ 26 weeks weighing 2 pounds, he spent 86 days in the NICU and was sent home with no monitiors, oxygen, nothing. His diagnoses is severe Gerd. He is currently 4 months old, 1 month adjusted. He has been on Zantac since he was about 2 weeks old. Well lets fast forward to 2 weeks ago, he started doing this weird arching thing and stiffening up which was diagnosed as sandifer’s syndrome. He had a really bad episode where he was choking and turned blue and I had to call 911, he came out of it and was fine, but was readmitted into the NICU for observation. He had an upper GI test done which showed he has severe reflux(no kidding) they put him on REGLAN. I am so beside myself because of this and I don’t want him on this drug. The doctor’s told me I don’t have a choice. Why not? Why is he on this crappy zantac if his reflux is so severe. I want to try prevacid but no one will give it to me. My options are zantac and reglan. i want to kill myself. I feel like I am at my wits end. I am a nervous wreck because of the episode with him turning blue, otherwise I would have taken him off the reglan, but the doctors are telling me I have no choice. I want to change his formula to nutramigen of allimentum but they also say no, that’s for babies who have a milk allergy. I thought it would good because it’s easier for him to digest. The more I research what other moms have done the more I see that a good dose of a PPI and the hypoallergenic formula usually does the trick. I really don’t know what to do. How to I convince my doctor to change his meds. I really love this doctor but I feel like he’s not helping me in the situation. I know I sound like a lunatic but I don’t know where else to go. Thanks for listening to me.

October 18, 2008 at 1:58 pm #57830

hellbennt
Keymaster

I’m so sorry for you going through this!

i know you say you love your doctor…but you really DO NOT. How can you if s/he won’t even work with you to do the best for your baby?

PLEASE PLEASE get to another doctor ASAP! a ped GI!

and if THAT dr doesn’t listen, go to ANOTHER one. Sad but true (!) that many parents have to go to many different doctors 🙁

in the meantime, until you get in to see a ped GI, try a family dr. MANY have had success with a family doctor working with you.

I have a LOT MORE 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

please take the time to read/scroll/skim through this and refer back to it, as it truly will help you.

so glad you found us!

~laura

October 18, 2008 at 6:12 pm #57835

Anonymous
Inactive

I agree with Laura. you NEED another doctor. Also, you can put your baby on whatever formula you want! You do not need a doctor’s permission. They are sold over the counter, so that is completely up to you!!!!!

I am so glad you found us and you can vent here anytime!!!!! Preemie babies can be very difficult. It feels like the “never ending Infancy” but I will tell you now that they are bigger, all of these issues really are a thing of the past!!! You will get there, so hang in there!!!!!

October 18, 2008 at 7:24 pm #57837

Anonymous
Inactive

I’d see another Dr ASAP as well. And don’t feel bad about it at all. It’s what you need to do to get answers. You need a “team” that will be on your side. If that means you need to find ALL new dr. then so be it.

You are absolutely right you need a PPI and a formula change. BTW you don’t need their permission to change formulas…go to the store and buy it and see how it goes. I would if the DR are being like that.

Also an Upper GI is not meant to DX reflux. I would ask (when you get a good Dr) to have a Impendance Probe or a PR Probe done. Thsoe ar ethe tests for reflux. The Impendance is the new “gold standard” for reflux testing as it can detect acidic and non-acidic episodes.

BTW Yes, you can see reflux on an UGI but it is very much not the best for DX GERD or it’s severeity.

October 21, 2008 at 11:07 am #57903

Anonymous
Inactive

I also agree…. get a new doc as soon as you can.

October 21, 2008 at 11:36 am #57910

Anonymous
Inactive

those dr.s make me so angry!!!! you have the right (and the responsibility) to take control of this situation, but they make you feel like you don’t!
i agree with previous posts… find a new dr. asap. we’ve been through 3 peds and 2 GIs.. it is so frustrating! and you try whatever formula you want!
this forum will help you a lot… keep asking ?s and researching… that’s what gets me through the really bad days.
xxooo

October 21, 2008 at 10:54 pm #57932

Anonymous
Inactive

those dr.s make me so angry!!!! you have the right (and the
responsibility) to take control of this situation, but they make you
feel like you don’t!

Well said! A good Dr will make you part of the healthcare TEAM. And value your input and ideas. If they don’t like what you suggest, they should be able to back it up with SOLID reasons.

Go buy Alimentum, you can get it in any pharmacy with the Baby formula. Breastmilk is best for premature infants – what was your son fed in NICU?

We too were prescribed a H2 + Motility at first and I gave it two weeks before I demanded a change. We switched to a PPI which I learned later has serious stability issues when compounded into a liquid so I went back and asked for another switch in her perscription.

We’ll be seeing a Pedi GI sometime soon.

October 22, 2008 at 10:21 pm #57945

Anonymous
Inactive

Oh my gosh-I have a cousin named Louie-need me to have him go kick some medical butt?

Seriously-I’m with everyone else. Fire your doctor’s lousy lazy behind. I found an EXCELLENT Ped GI Specialist on here, and we have had next to no problems with reflux since we got our medication situation under control. What led us to look for a new one was the same as you-not wanting to give our DD the Reglan that she was prescribed. We divorced our old pediatrician as a result. We used this board for advice and finding a new doctor, and our family doctor helped us find a new “regular” pediatrician. We also supplemented my EBM with Nutramigen because of a MSPI (at least we thought it was MSPI) and it worked for us. However, it’s a lot more expensive than regular formula. We have gone back to just regular Organic formula as what we supplement my stinky BM supply with and we are doing just fine. And Zantac sucks-we are fans of Prevacid-speaking from experience of being on both.

Good luck to you. Come here to vent early and often-you are not alone!

October 23, 2008 at 10:12 am #57955

Anonymous
Inactive

I am sorry to hear what you are going through also…. It should be a happy time for you and it seems like they are making it worse. You have done your research and are valid to want to try other things. I agree with everyone else, you should get a new doctor. Doctor’s are supposed to listen and if not tell you a valid reason why they aren’t. In this case it doesn’t seems like they are!!

My son also had an episode where he chocked and turned blue, he actually turned beige and his lips were dark blue/purple and it scared me to death. I was told if it happens again to call 911. He’s 6 weeks old now and hasn’t had another episode, mostly cause he is never on his back. During the day he is in the car seat or on a nursing pillow elevated. At night I have him in the Amby swing which seems to help abit.

If you live in the States I have heard some Insurance companies actually cover the tucker or amby swing, maybe look into that as well. If some of his symptoms can be alleviated it may make things better.

Just rememebr you are not alone and these ladies have some good ideas for us newbies and when you think you’ve done everything a new idea comes up.

Good luck and I hope hings get easier, but ask for a second opinion, this drug is very strong for a little person

October 23, 2008 at 4:19 pm #57965

Anonymous
Inactive

Thank you for all your advice. You guys are the ones who make me feel like I’m not insane. So I just got back from the GI Specialist which was a complete and total waste of time. I feel like I’m being punished for what I have no idea. Anyway the dr. walks in and tells me “Well there’s not much I can do for you. I personally wouldn’t give him ANY meds.” huh???? He said that the babies do not feel pain and the acid does not burn their throat. Is this guy insane? Now mind you I live in NY and I am at the children’s hospital where the specialist are. He also said that changing from zantac to prevacid or anything else is not going to make a difference. Also he said to just stop the reglan all together, which is what I wanted to do anyway, but I wanted the PPI because now if I stop the reglan I’m back to square one. How do I know my son’s not going to have another episode on just the zantac. Also don’t you have to wean him off the reglan, this dumba$$ says no just stop it. Ohhh and then he says not to thicken the formula so much so he can just get it out rather than it being silent. One doctor tels me thicken this guy says don’t thicken. I am so beside myself right now. Now i have to find a new ped, a new specialist. UGHHHHH i could seriously scream. I just want to try my son on some freakin prevacid, what the h*ll! This is such a nightmare. How do I convince these doctor’s to give me the right meds? My son is so miserable too all he does is cry, all he wants to do is eat, and they tell me don’t overfeed him because of the episodes. What am I doing? I’m seriously going crazy. He crys all day and this guys going to tel me it’s not from the reflux. I don’t know, I just don’t know. I wish one of you guys were his doctor.

October 23, 2008 at 4:38 pm #57966

Anonymous
Inactive

That’s horrible, what an idiot!! I think they see so many people they forget to be human! How can a baby not feel anything, he’s crazy!!!

Just get as many opinions as you need to your baby well!! Soemtimes I think the internet has more answers and dr’s are just in a hurry. Did he ever suggest a different formula???? maybe soemthing with no dairy? not sure if you are already doing this, poor little guy crying all day that’s insane they should really be helping you!! I wish I could recommend soemthing else for you, have you tried a baby sling to hold him upright all day? my little guy falls asleep that way even if i’m vacuuming…

October 23, 2008 at 5:03 pm #57967

Anonymous
Inactive

OMG!!! I could insert some four letter words in here, but I’d be edited anyway. WTH does he think babies don’t feel pain? I mean, seriously, has that doctor ever had heartburn? It freakin HURTS!!

Ok, I had to step away from the computer for a minute because I was about the break something. I DO NOT UNDERSTAND why doctors can still be so ignorant about this.

Where are you located? We need to find you a new doctor and pronto. In the meantime, have you tried some Cherry Supreme Mylanta to help soothe your lo? It can really help, but it won’t solve the problem.

October 23, 2008 at 5:11 pm #57968

Anonymous
Inactive

OMG what an idiot!! I totally agree with the others! How in the world can they say babies don’t feel pain? Like they aren’t human beings! Argh!!!!!

I agree with Naomi, we have GOT to find you a good pedi GI in your area. I want to say I remember a couple ppl who had a helluva time finding a good GI in the NY area, but there are some around.

I agree, try some Mylanta Cherry Supreme or even Pepcid Complete. For the Pepcid complete, go the Marci-kids website and email Dr. Phillips, tell him your baby’s weight and he will tell you how much of a tablet (OTC) to crush up into some water and make into a suspension. I’m not sure how young your baby is, but it sounds like he’s in serious pain and that’s so unnecessary!

Also, you can buy any formula you want to try, don’t wait for a Dr to tell you. If you think he needs a hypo (alimentum) go for it!

Big Hugs to you! I’ve been through this frustration and there is a light at the end of the tunnel!

October 23, 2008 at 5:11 pm #57969

Anonymous
Inactive

Your GI also sounds like a piece of work (and not a good kind!)!

If you look up finding a ped GI from Laura’s intro, there are several in New York. Maybe there’s one who will be a good fit for you.

Hang in there- we went through the same thing with several GIs and even a pediatric psychiatrist who said it was all my fault- until we got on the right track.

It was terrible. HUGS.

October 23, 2008 at 5:29 pm #57970

Anonymous
Inactive

I live in long Island NY. I went to Scheinder Children’s hospital for this doctor. I really don’t know who else I could go to. All my doctors including the NICU docs all referred me to this place. I know this is so unbelievable when he told me that babies don’t feel the pain, I looked at him like he had ten heads and I couldn’t get that look off my face for the remainder of the conversation. I wanted to kill him. I was thinking of changing his formula. They tested his stool for blood and it was negative so they said there was no need, not that I would listen to anything those morons say anyway. I don’t know if I should switch to alimentum only because he is a preemie and I’m afraid he won’t be getting all he needs, also can you add cereal to the alimentum? I feel so bad for him he just cries, and cries. Last night he cried for like 6 hours off and on. Today he’s very uneasy and crying a lot. I hold him as much as I can but I have another child so it’s really hard.
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