Hey everyone, you all know Shae's story (http://www.infantrefluxdisease.com/story.htm) by now, so jump in here to share your child's reflux story.

:shock: my son turns one tomorrow, we have had a real hard time getting him diagnosed with reflux. And now we been through zantac and prilosec and the doctor want to do a scope exam. His reflux is mostly at night, never sleeping more than 90min at a time. He is an extremely picky eater-mostly hot dogs and fresh berries. We are at a loss in what else to do, he is such a happy babe..until night time he isn't bothered at nap time just bedtime. any advice????

Hi and welcome to the boards! Happy Birthday to your son!!!

Sorry about the trouble he's been having with reflux. Is he still on the Prilosec? What time of day does he get it? Have they ever tried any motility meds? Perhaps a dose a bedtime would help with his nights. I assume you are doing all the lifestyle modifications like raising his crib and not feeding near bedtime, etc?

:shock: still tired. Yes he is still on prilosec twice daily 3/4tsp each. I tried to change the meds to right before he went to bed, it worked one night he slept until 12:30 but then up again all night, the next night and then on no change so we went back to giving him the meds when he wakes up and right before dinner. The gi dr wants to do the scope, in the meantime i am going to see an alternative dr tomorrow morning. I have heard that this can sometimes work. we will try anything at this point. The past few days he has only taken one nap for an hour long, he used to take a 2 hour nap. I also experimented with giving him a full tsp once daily and the other still at 3/4tsp, it did not make a difference. We have also cut out all dairy, and that made a little change in the beginning, but quickly changed back to screaming all night. As far as the bed, he sleeps with us at an upright angle, he is still nursing will not drink a bottle, formula, etc. He also drinks very little water and very little foods other than hotdog and fresh berries. Any more advice?

Hummm, don't think I have much to offer...sounds like it might just be something you have to wait out...sorry...I know how hard that is.

How did the alternative doctor's appointment go?

:roll: i would have done better to wad up $60 and throw it out in the street. He just let jacob crawl all over him and pushed on his feet. He said that this was normal trauma for a second child to go thru during delivery, something about a nerve that was twisted and squished when his head was pressing on my pelvic bone waiting to be delievered. :roll:

We still have not heard from the specialist about the scope, i really don't want to do the scope. I have heard it is not as bad as what it seems. In the meantime my new pediatrician wants me to wean him. She thinks this will help him sleep better, but my thinking is that when he starts screaming he isn't really awake just yet. It can take a couple minutes before he actually wakes up even though he is screaming, its almost like he doesn't want to wake up or open his eyes yet. And when i nurse him it soothes his burning throat and he can go back to sleep. He has always refused a bottle, formula and the cows milk cant be right from the fridge or he will spit it out.

I just feel like i am going crazy...what if they do the scope and find nothing? Am i making all of this up? Is it just a behavioral thing?
:cry:

Don't go second guessing yourself now Kristin. I did that so much in the beginning and the bottom line is, we as their mom's know when there's something wrong with our kids and unfortunately it takes more than just a little nudge to get a lot of these doctors to listen. My son spent almost a week in the hospital in the beginning, with the doctor's finding absolutely nothing, we came home knowing nothing more than we did when he was admitted. Then I found this website and found so many answers. I took what I found to the ped. and he finally agreed to treat him for reflux, which up until just a few days ago, seemed to have done the trick. He gave him Domperidone which my then 2 month old son took for about 8 weeks, and although it took about 2 weeks to see any real results, it did seem to work. Even to the point where a few weeks ago, we weaned my son off of it completely. He's now almost 5 months old and we thought we had pretty much overcome the reflux. Now, after the last few days, I'm not so sure. Roni's book title "Life on the Reflux Roller Coaster" couldn't be more appropriatly named. Now I have to once again worry what the doctor might say, especially since it's been more than a few weeks since we seen him. I'm very concerned that we took him off the meds too soon.
Anyways, my whole point is, you may feel like your going crazy, we've all been there, but trust your intincts and stand your ground where the doc's are concerned. It definantly does not sound like just a behavioural thing and when you do feel that that might be it, just remember that he may be in a lot of pain and that's a chance you don't want to take....if they do the scope and happen not to find anything (which I doubt will happen), who cares what they might think? You may get yourself some peace of mind if nothing else. Hope this helps :?

I know it has been a long time since i have posted but we have been on a really rugged road! We did get answers though. My son who we had a hard time getting diagnosed with reflux did get the biopsies done and boy am i glad we did it! We found out he has with the reflux...gastro-interitis. This is caused when esophillic cell (E-cells) or allergy cells are in the digestive track, his were in his duodom or beginning of the sm intestine. Whenever he would eat food it would cause these e-cells to react and cause severe cramping in his stomach, he would wake up screaming and we would not be able to calm him down. Well it is controlled by a prescription on Singulair and Hydroxcin (similar to Benadryl) along with his Prilosec. He then had to be pain free for 3 mos and is now going thru the weaning of his meds. The normal allergy cell count is 12 his were over 40 no wonder the poor boy wouldn't eat and was crying all the time!!!
We have had great success with our childrens hospital Children's Mercy in Kansas City MO they also have one in Overland Park KS. I talk to a GI Specialty nurse for all of my questions and I haven't had to go back since the biopsy. Talk about saving $$$$!! They said they see about 5K kids with this problem. It is considered a rare disease.

Good Luck to anyone who this might help! I fought this battle almost totally alone and I am so thankful for this website and my family and friends for pushing me when I knew there was something wrong instead of listening to our dumb family care doctor!

:D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :D :blob7: :blob7: :blob7:

You too can defeat this!! Stay strong and informed DO NOT LET ANYONE TELL YOU CANNOT DO ANYTHING ESPECIALLY WHEN IT COMES TO YOUR KIDS!!!

On to our next feat.....chronic ear infections!!

On to our next feat.....chronic ear infections!!

Which can often occur in kids with reflux. I hope that you are able to find something to help them disappear for good.

Congratulations!! Glad to hear you are having so much luck with your health care team!!! They sound wonderful!

Janette is absolutely right about the ear infections, as a matter of fact Shae struggled with them like crazy until she got tubes put in.