Posted By Posting
Aug 12, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
just, no reason...
Last week we found out that Emily was constipated so we were told to do a clean out. The nurse had told us how to do it. Then i called on thursday b/c Emily was not cleaned out and was still refluxing. She told us we did her orders wrong (she told us the wrong thing to do, in the first place) and gave us new orders. On friday i called to find out how long after clean out we could see her reflux get better, the nurse gave us yet another order that was different from the other 2 and told me i was doing things wrong. I called the office manger. and got the Dr. to call me and he finally called today.

he made no mention of the nurse, he was sure with the amount of medication she had over the course of week (8 doses of mom and 8 caps of mirilax) she was cleaned out. He said there is no correlation between constipation and reflux. he said Emily's reflux was not caused by her constipation! grrr another thing the nurse was wrong about!!

he said her bloating and chocking and gulping/swallowing down reflux, spitting, fingers in the mouth has gotten worse, just for no reason at all. Not a single thing is causing her reflux to get higher in her throat. It just is. He said it's pretty sure that her having tantrums/being violent (kinda going into a weird trance and sometimes even laughing about it) after i hear her reflux is her response to her being annoyed at the reflux but does not necessarily mean it's acidic. and there is nothing that we can do that we aren't already (small meals and staying upright, limited activity after eating, reflux and sugar-free diet, and probiotics.)

he says even if he could get her okayed for Eyrtromican he says he has not seen it work for any of his patients so he stopped Rxing it. I am just really mad and sad about this whole thing. We will be looking for another GI because of this and because I can not bear to talk to that nurse again. if i can not trust her to give me correct orders or information then i can not trust her with my dd's care. i just don't buy it that there is nothing we can do.
Aug 12, 2009
noor117
Strong, Beautiful, daughter who is thriving beyond imagination and a healthy, happy 3 year old.
That is aweful to have such a careless Nurse. Meggy is doing about the same with the gulping and chocking and all. We were told hers is EGID and we had been using medical food to help. I hope you succeed in finding a new GI. The last few weeks have been aweful. I hope you find something that works.
Aug 12, 2009
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
OMG you have to be ticked. So sorry. Yeap, fire them and move on. Nothing ticks me off more than when a doc just washes their hands of these kids by saying that it is what it is. I totally disagree. I am with you. There has to be something that will help her.

I will tell you that when Ryan is constipated he refluxes like crazy, gulps and choaks, so I dont believe it when your doc says it has nothing to do with reflux. I have seen it myself and my GI says they are totally connected. It makes their gutt full so things back up. Now that you have her cleaned out, give her a few days for her system to get back to normal. Are you mixing one capfull to 8 oz of water or juice and then giving her 5 of those ounces a day? What were the instructions that you were given?

Has Emily already gotten her 2 year molars? Could that be your cause? I cant remember if you said whether or not she already had them.

Just because the reflux isnt acidic (and who is to says it is not) that doesnt mean it doesnt bother her. I would feel like crap too if I was constantly regurgitating everything I ate. Have you ever laughed after you just swallowed and it came back up into your nose. What a gross feeling. These kids have it over and over again. Can you tell that I am pissed for you?

If it were me I would stick with the Miralax (on a light dose) for another week. I would also consider Claritin if your are comfortable with it and your ped is too given the other stuff she is on. I am telling you it turned Ryan around over night. He had a lot of coughing and drainage down his throat that was filling up his gutt and stirring up the pot... maybe that is not Emily's case though. Something to think about though.

Aug 12, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Ugh. Next time you get ANY orders, have the office WRITE THEM DOWN and initial it - our GE's office does this for every visit. Then they can't say you did anything wrong. And since when does constipation not aggravate reflux?!?!? Allie's almost disappeared once we got her going on her own!
Aug 14, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
aww poor meggy i've been thinking about you guys i hope her weeks start getting better.

now that i think a little more about the conversation i think it was a misunderstanding about the constipation/reflux issue. I told the dr i expected her reflux to get better when her constipation cleared up. I think he was assuming i meant her reflux would go away. which i know it will not b/c she had reflux even before this issue. Either way i think he was not listening and putting my question into context of emily's case; instead he was finishing a "common question" script which i do not like.
Check with your
doctor first!