Infantreflux.org | no one really believes me

This topic has 25 replies, 1 voice, and was last updated 18 years, 7 months ago by Anonymous.

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February 16, 2006 at 4:45 pm #1704

Anonymous
Inactive

ok so I KNOw I’ve been posting a lot (sorry), I just have no one else to talk about this with b/c NO ONE believes my son is sick…my family knows he has reflux but no one thinks it is causing him any pain or problems because Aidan looks totally healthy, more than healthy he’s chubby (I know I know that’ll probably tick some of you off) and it’s not like I WANT him to look sick, i just want people to take me seriously. Even his dr says he must be fine cause he is gaining more than his fair share of weight…but if he’s fine why is he still so miserable? is he’s fine why does he still jerk away from the bottle and gag on it when he tries to eat?? GET THIS the dr said that I must be trying to force the bottle on him when he’s not hungry and that’s why he is gagging-AHHHHHH no, when a child has gone 6 hours with nothing to eat then starts rooting around and screaming ,any idiot can tell he’s hungry..yet he gags on the bottle and refuses to eat…after 10 mins or so I can usually get him to quiet down and eat a bit…2 oz or so..I have no explanaiton for why he’s so chubby…he just is…but just because he’s chubby that does not make his reflux more or less painful than anyone else’s!!!!! I’m sorry guys…I’m just sick of trying to make people understand that he is indeed sick and in pain..no one believes me…but I mean come on the kid is so hoarse he can’t cry anymore…I’m tired of feeling like I’m being paranoid or that I’m freekin delusional……

February 16, 2006 at 6:14 pm #1717

Anonymous
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I absolutely know how you feel. It took me about 9 months to realize that no one in my family was going to understand my situation because no one else had experienced it. I finally stopped trying to make everyone understand. In the end this was so much easier. I used this forum as my place to get some understanding, everyone is so supportive and knows exactly what you are going through!

February 16, 2006 at 6:31 pm #1718

Anonymous
Inactive

I hear you!! That’s for sure! We’re in the exact same boat…I swear if one more person tells me that she’s fine because she’s gaining weight I’m going to lose it. It’s so awful. My family doesn’t get it either, and mainly my inlaws- they blame me for it all the time. Know that we all know what you’re going through. And you don’t have to apologize for posting…we’ve all been there.

February 16, 2006 at 8:49 pm #1726

Anonymous
Inactive

I could have written your post several months ago. We are just now in the process of relocating to live near family again, so through all Nathan’s (silent) reflux woes, my family was 3,000 miles away and didn’t understand what the heck I was talking about with Nate’s “issues”. I finally made my parents come visit, and after viewing a handful of feedings, my mom fianlly admitted that she didn’t believe me that something was wrong until she came out and basically lived with us for a few days.

I too had a pediatrician tell me that Nathan probably just wasn’t hungry if he would only take 2oz and then jerk away from the bottle screaming. She finally Rx’ed Zantac b/c (in her words) “well, it can’t hurt.” FWIW, I finally switched pediatricians.

Have you taken Aiden to a pediatric GI specialist yet? I waited until Nate was 7 months, and really wish we had gone sooner. It was like a huge weight was lifted off me when the NP said that Nate had all the tyupical tell-tale symptoms of silent reflux. Finally, someone was hearing me!!

Infant reflux sucks. Please don’t apologize for posting a lot here. That’s what we’re here for.

February 16, 2006 at 11:38 pm #1738

Anonymous
Inactive

I truly understand where you are coming from. Alexis was and is still gaining weight fine so nobody ever thinks there is a problem, Just A FIRST TIME MOM! I’m so sick of hearing that. The peds MD actually saw her eat one day and realized that there is a problem even though she gains weight she know we struggle to get her to eat basically force feedings. This forum was my saving grace since everyone here understood what I was going through and gave me really good advice when everyone else just didn’t believe me. I have truly learned to trust my feelings when it come to Alexis and really press for what I believe she needs.

February 17, 2006 at 4:54 am #1740

Anonymous
Inactive

Ive been there too. After my mother has stayed with us a few times, she now really understands. My husbands parents really dont. My friends all had really easy second children so they really dont understand. When people ask how how Tyler is, I usually say that he is ok cause otherwise I have to go into a detailed explanation of why he isnt and they dont really get it anyway. My FIL’s answer to reflux is “give him more water, it always helps my heartburn”

Please try and find an understanding ped or ped GI, it really can make all the difference. My son has always looked really healthy so everyone thinks he is ok too.

February 17, 2006 at 11:00 am #1752

Anonymous
Inactive

I made an appt with a ped gi for the 24th…thought it would be better to do it sooner than wait!!! You guys are so awesome..it is good to have someone who understands.. It seems like sometimes silent refluxers are the ones who LOOK alright ( I mean they kind of have to be gaining if everything that goes in stays in, usually) but are really really hurting…He seems to feel better now that I switched his meds from prevacid packets to soltabs..funny thing I took him off the packets just 2 days ago and already he seems to be feeling much better, still hoarse though (for those who don’t know his dr says he has laryngitis, I say BS) The thing about the family not understanding, we LIVE with my parents, well, in an attached in law suite type thing, so you’d think they’d get it, but I guess silent reflux is just hard for some people to understand. I mean hey before I had Aidan I didn’t think reflux was a big deal. My cousin’s daughter has it, and guess what???? I thought she was fine b/c she was the chubbiest little thing I’d ever seen!!!! Now I know better, and feel badly for thinking that way. thank you guys for being here it’s just good to know that I’m not alone and not the only one who feels this way sometimes!!!

February 17, 2006 at 3:30 pm #1765

Anonymous
Inactive

Have you shown your parents this website??? They can see for themselves all the signs and symptoms of silent reflux. Crazy i know, i had to dianose my daughter. The ped. GI really helps alot, i wish you all the best when you see him. Hopefully he will have a kind heart for kiddos suffering from this horrible disease. If not, walk out and put a shout out on the board for one that is recommended in your area. Just fyi for everyone who says he is fine, silent refluxers get the double burn, the acid goes half way up and back down to the stomach. Hard to think about, good thing he is on 30 mgs of prevacid!

February 21, 2006 at 12:16 am #2057

Anonymous
Inactive

I am sorry no one is taking you seriously. No one listenened to me until Gabriel was diagnosed as Failure to Thrive–then they were all wondering why I don’t just feed him more? It’s very frustrating because unless you’ve dealt with GERD, you cannot understand. A lot of people don’t believe it’s very serious (I’ve had many people say, “Can’t he just take an antacid or something?”) It is really hard when no one validates what you’re going through, especially if it is the hardest thing you’ve ever dealt with. I know seeing my son in pain is far worse than anything I’ve had to cope with in my life so far–including the death of a parent. Even though people don’t understand your pain, that doesn’t mean your feelings aren’t valid.

February 21, 2006 at 2:09 pm #2111

Anonymous
Inactive

Hi. I know what you mean. My little guy is 5 months old, plenty big, but HATES, I mean HATES his bottle. He gags on the first sip with most feedings. Needs to be burped every 1/2 to 1 ounce, rarely eats more than 3 – 4 ounces and frequently throws up everything he eats. I’m at my whits end and wish I had some answers. He had an Upper GI yesterday. Waiting for the results. He’s been on Prevacid (7.5 mg twice daily) for about a month. At first he seemed much better, but things are getting worse again. According to Joel at MARCI-kids.org, he should be on a higher dose of Prevacid, but my doc says he’s on the highest dose he can have. These message boards are my claim to sanity right now. Who can really understand this hell unless they’ve lived it? Thanks for being there. I hope you find people in your life to support you in this difficult time.

February 21, 2006 at 3:35 pm #2113

Anonymous
Inactive

5 months and 15 mgs?????? Aidan is not even 3 mos. and he takes 30 mgs of prevacid….!!!!!! you’re dr sounds very very conservative in his aproach which concerning most things is good, but with this they need a higher dose than that, Aidan was on 15 which was not working so b/c of his weigh they increased it to 30. Maybe present some of this info to your dr? (although I know they HATE it when a parent confronts then with information that contradicts what they think). How much does he weigh? Aidan was bumped up to 30 mgs at 12 lbs. (he’s 14 or 15 now, I know when I said HUGE I meant huge!!!!)

February 21, 2006 at 7:58 pm #2151

hellbennt
Keymaster

hi & welcome!

please find the time to read this: https://www.infantreflux.org/forum/forum_posts.asp?TID=853&am p;PN=1&TPN=1 it’s my welcome/intro that I provide for all newcomers. its looong but should help!

~laura

February 24, 2006 at 11:29 am #2345

Anonymous
Inactive

I understand completely. I have had people tell me that my boys arent’ sick I just want attention. And my in laws give my 3 yr old orange juice because he needs vitamin C. It is very frustrating. Until I found this forum I didn’t know how many kids suffer just like mine, and parents too. So many adults whine about thier heartburn… imagine being a child and having no voice except your mommies!!! Keep plugging!!!! Your baby will thank you some day!!!!

March 1, 2006 at 11:14 am #2749

Anonymous
Inactive

I have a really hard time getting people to take me seriously about my son’s reflux and he was born with ea/tef! (he had to have surgery at 3 days old to have his esophagus connected to his stomach). My son was 21 lbs at 6 months of age – he was a buddah for sure!! Everyone thought I was just crazy and overprotective and had Post partum depression. I had no support and my husband decided he didn’t like my son’s colic and his screaming jags and left when my son turned 8 months old. Reflux is a serious thing, and unfortunately until it starts killing more adults by giving them esophageal cancer – people/doctors will just dissmiss it as not being a big deal. If it wern’t for the forums on the internet, I don’t think I would be here today – it’s too much to handle all on your own.

March 1, 2006 at 2:22 pm #2771

Anonymous
Inactive

I took Aidan to the doc today, yesterday he only ate 9 oz..today ir’ now 2:24 and he has eaten a whopping 4 oz..the doc acused me of having (yes) post-partem depression. and said that I “wanted something to be wrong with Aidan” She said that as long as he is not dehydrated and is happy and gaining weight then he’s fine and I shouldn’t go by the numbers and should look at him but OMG OMG what kind of a child only eats 4 oz in 9 hours?? huh?? she said that some things make no sense to her either but he’s fine. I asked about testing and she said “why put a healthy child through unnecessary testing that he doesn’t need” ARGHHHHHHHHHHHH I called the ped GI we saw and am awaiting the return call…maybe they’ll recognize that this is an issue and want to help me? I am going to try to get Aidan insurance so maybe I can begin to go see different doctors that might be better….right now we have medicaid not too many options of doc’s to go see. I mean could I just be paranoid? is it ok for a child to eat so little if he’s gaining weight? I just don’t know anymore, all I know is that if he IS gaining weight and eating less…that is just a red flag for me..but aparently not to anyone else.
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