Infantreflux.org | More waiting - and I can't stand it!

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March 28, 2008 at 11:42 am #49507

Anonymous
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I’ve known my little boy had acid reflux since birth. He is now 4 weeks and has been in major pain for a long time. I’ve tried a few doctors, and I finally found one willing to look at Marci-kids, etc. He was going to prescribe medicine, but he wanted to look some things up and talk to a few people. He said he’d call me this morning with a prescription. Well, he called and said the GI specialist said he shouldn’t prescribe anything until he can be evaluated by the GI because it would lower his PH levels and mess up the findings. He said to stay on the Zantac (which isn’t doing ANYTHING). I’m sure that might be true, but I’d almost rather try medicines and just see what works instead of going through the trouble of the GI, because I know he has acid reflux!!! I just can’t take seeing him in pain anymore. Every night gets worse and worse. The dr said he would call and make the appointment for me. Who knows how long that will take!?! I need to get him in ASAP – like TODAY! What if it’s a week, or two weeks, or more?! I won’t stand for that. I just feel so down and I have been crying since the phone call. We have had little sleep around here. My house is a mess. My husband is so busy and stressed. My daughter is bored and couped up in our tiny apartment. Dallin is in pain! I just want us all to be happy and start living life.

I have no clue if he has a milk intolerance. There was no blood in his stool, but he had diarrhea and now has mucus. He got a major rash from the diarrhea, and no matter how soft I wipe his bum, he shrieks and makes high pitched weird sounds of pain. Today he had a more yellowish, pasty stool. So maybe the soy was starting to work, it’s just delayed a bit? I might try the soy formula a bit longer. We bought a whole can of Nutramigen and he hated it and spit up most of it. I tried thickening the formulas and he hated that. I need more soy formula and I can’t imagine going outside right now in New York City with my whiney 3 year old and my acid reflux 4 week old!! Did I mention we live on the fifth floor of a five story walk up building?!

So for now, more waiting while my little one is hurting.

March 28, 2008 at 4:48 pm #49529

Anonymous
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I’m so sorry to hear about what’s going on. I totally relate and so can many other Moms. Cole is over 6 months and we’ve been going thru this since birth also, and still haven’t got it figured out. We r trying something new again.

When I knew that I needed that referral, I got on the phone and called the GI clinic myself and asked what was needed and let them know that this was urgent. They usu. get u in quick when ur baby is younger. I made 5 calls to my peds office that day to make sure they got that referral in that same day and they did. Got to be persistent. I know it is tough, hang in…

March 28, 2008 at 6:02 pm #49536

Anonymous
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I was wondering if you could contact the ped GI’s office yourself, as well. I kept calling and calling until they finally fit me in. Once I even called in the middle of one of Paige’s hysterical, inconsolable screaming sessions, so they could hear it for themselves.

I hope you get some help soon.

March 28, 2008 at 7:21 pm #49538

Anonymous
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It’s VERY hard to get into our ped GI’s office here. When I first made my appt., I was going to have to wait 2 months. I decided that was WAAAAY too long, so I called back. I was VERY sweet to the appointment scheduler and asked to be notified of ANY cancellations, even if it was last minute. I am a SAHM, so that makes last minute things easier. The scheduler called back a few weeks later and asked if I could take a cancelled appointment that was a few days out. I was thrilled to. I know of some moms here who have called the ped GI’s office every morning to see if anyone cancelled. Either:

A. someone WILL cancel (they always do)

B. The office will get sick of you calling and fit you in

GOOD LUCK!!

**HUGS**HUGS**

March 28, 2008 at 7:57 pm #49539

Anonymous
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Hey there, so sorry to hear about your little man.. I know that Ben had some horrible diarrhea and rashes when we were trying to figure out what was going on with him. I will say that I stopped using wipes on his bum and just used a wash cloth with warm water on it. That helps because the alcohol on the wipes can really, really burn on sore bums. Also, try to let him air out as much as possible.

And I second, Kristin’s suggestions… keep bugging them until they agree to see you!!

March 28, 2008 at 8:17 pm #49543

Anonymous
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I would give some Cherry Mylanta supreme to help with the pain until you can get a med that works better. Don’t give too much b/c of the potential for loose stools and you are already having a diaper rash problem. You may want to look into getting a script for Greer’s Goo to help with his bottom. Also if you are brave you can let him be diaper free as much as possible. This is much easier when they aren’t mobile. Cooper had a horrible rash when he was cutting his first 2 teeth and I had to let him “air out” as much as possible and I stopped using baby wipes and used wet papertowels. It took 2 weeks but it got better. Good Luck and I agree with what everyone else said as well.

March 28, 2008 at 9:46 pm #49550

Anonymous
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I second what Beth said about the prescription butt paste. It’s called something different here (Etcheverry’s Butt Paste), but from what my pharmacist said, it’s all pretty much all the same stuff. It is a MIRACLE cream. I literally put that stuff on EVERYTHING (not just bottoms). For us, the cream usually heals a BAD case of diaper rash in about 3-4 days, but we notice improvement pretty quickly. And, we usually don’t have to be seen in order to get the script, unless the doc suspects a yeast rash.kdub2008-03-28 21:48:29

March 28, 2008 at 9:51 pm #49551

Anonymous
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Maybe you should try mixing the Alimentum ready to feed formula with 1/2 soy formula. (or regular, whatever works better for him) It’s a little cheaper, and you might get some results then. I’ve read from a lot of posts on here, that many kids HATE the nutramigen, but the ready to feed alimentum has a better taste. You could see some results, then. (I probably shouldn’t do this, but I put a little of the light karo syrup with my daughters nutramigen, and she loves it and doesn’t spit it up)

And as for your Dr., screw him! (no offense) but many moms on here, including myself, got the prevacid THEN the Upper GI. My DD is STILL waiting for her GI scan. I had to get to the point where I told the Chief of Pediatrics “I don’t fully believe you have my daughters’ best interest and quality of life at heart, making her suffer. I don’t see the harm in attempting a reflux medication, if it works? Great! If not, then there MIGHT be a more serious issue that we have to address, that the upper GI would reveal. But I won’t accept watching my child suffer, and I will sure as heck pull her out of this practice and find a Dr. who listens to me, before taking another line from you.” Which, it worked. He gave me the incorrect dosage of prevacid, but gave it. He never recommened the upper GI, or a neurology appt. that she needs 🙁 I’d call around, ask to talk to nursing staff of local pediatric offices, tell them your situation. Thats what I did, and I found my new pediatrician by how their nurses reacted. If the nurses seemed disinterested, or not fully believing me, I called a different one. I found one nurse who seemed appalled by that Dr., she said and I quote “Your Dr. doesn’t seem to take your concerns seriously, does he?” and she said under hush hush tones, that if Andy kept deteriorating, to bring her straight to Albany Med Center, their E.R. (we live in a rural area) because they would see her decline of overall health and development and have the resources available right there at the hospital to diagnose her. *which she wasn’t allowed to recommend to me*

Find your voice!! BE HEARD.

March 30, 2008 at 9:37 am #49612

Anonymous
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I remember waiting for my GI appt and feeling so frustrated with the process. Persistence is the key. My doc’s office was terrible and they were so unorganized in making the appointment. It was VERY frustrating. You might be able to slip him more zantac. Check the dosing on Marci-kids or ask the more experienced Moms on here. He might not be taking enough. Zantac did work for us for a short time, but not until the dose was high enough. I upped Jackson’s dose when he was 6 weeks old without my doctor’s knowledge when we were desperate. Sounds strange, but try getting into the bathtub with your baby and feeding him there while you rub his tummy clockwise. I know that it sounds random, but I read about it online and it really soothed Jackson at that age. I still take baths with him at 7 months old when he is not feeling well. When your husband is at home, go out somewhere! Go shopping or go grab a coffee and read a magazine. You will probably worry about your baby the entire time, but you will return somewhat refreshed and be better able to deal with the situation. You will go insane if you stay couped up like that (I know because I did the same thing!). Hang in there. Things will improve in time. Just know that you are doing such an amazing thing by being your son’s voice and taking the best possible care of him. It is so easy to feel like a failure when nothing seems to work. Caring for a reflux baby is hard, stressful and sometimes unrewarding work. I always told myself that God would not have given me that kind of work if he did not think that I was cut out for it. There is a reason that your baby’s care has been entrusted to you! Hang in there.

March 30, 2008 at 3:40 pm #49623

Anonymous
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I’m really sorry for your situation, and I remember the frustration you’re feeling. I know I’m in the minority here, but I never even tried to get a GI apptmt for my second son because my first son saw a ped GI who was not helpful, and I don’t know of any GI nearby that will prescribe the PPI doses that marci-kids recommends. Bottom line for us — they’re no help. But we were not dealing with anything major like failure to thrive.

So we “just” switched pediatricians three times until we found one who would prescribe 30 mg of Prevacid for Nathan, and it made all the difference. By all means, definitely get into the GI as soon as you can — maybe it will be a huge help to you. But is it possible you could find a pediatrician in the meantime who would at least start your son on a PPI like Prevacid? In my local area, I’ve found that the GI specialists already have their minds made up about PPI dosing while pediatricians tend to be more flexible and willing to experiment — just a thought. Good luck and I hope you get relief for your family soon!!
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More waiting – and I can't stand it!