Posted By Posting
May 14, 2009
bskathy
Looking for advice
Hello my son will be 2 next month. Since he was 6 months old we have been trying to get to the root of his problems. He has suffered from symptoms on and off such as constipation, extreme bloating, regurtitation of food and liquids, skin rashes, sinus infections, failure to thrive, mood swings. He has had many tests (upper gi, endoscopy, gastric emptying study, blood, stool etc) and we tried many things. He just had a PH probe done and the nurse just called and said he has reflux (duh I already knew that).They had told me they were doing the test to figure out what medication to put him on. He is on 5 mg of zegerid a day right now, not working though. Today when she called she said do you want us to change the medicine. Hello, that is why they told me they wanted to do the test. Also she said it is not really bad. Well when I looking at the monitor he refluxed about every hour. In my opinion that is not good. He also refluxes at night. We thought he had celiac and I tried the diet for about 3 months but it did not seem to fix problems either. Tried diet because all his symptoms pointed to that and his 1st blood test was inconclusive. They lost the second one and I havent had it redone. Any ideas? I am so frustrated. We have been to 3 different GIs, 2 pediatricians, allergist, and endocrinologist. He goes to endocrinologist next month to be weighed an measured again they are monitoring him for low growth hormone. I am so sick of doctors not listening. His new pediatrican is good so I am going to make an appointment to discuss the reflux thing with him further. Just wanted to know if anyone has gone through similar issues. Thanks Kathy
May 14, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
I have no advice...only support...we are in the same boat as you. Nothing anatomically wrong, but everythign is just not right. My son has had the same tests...he's on 15 mg Prevacid...it's done the job protecting the esophagus, but it's no miracle cure. We need to see an endo, too...I just have to find one!
May 14, 2009
bskathy
Thanks for the support. Where do you live. I am in GA and have a great endo. Our sons are close in age. It is nice to know others are going through the same issues. If you dont mind my asking how much does your son weight and what is his height?
May 14, 2009
bskathy
Dr just faxed me ph probe study he reluxed 64 times in 22 hrs and 45 min. They are saying he had a normal PH study because length of time was not long except for one time he refluxed for over 3 minutes. Ummmmm he shouldn't be refluxing at all right? 64 times my little boy had acid washing up into his throat. What about damage it could cause later? And he refluxes when he sleeps. What the is wrong with drs. I want to cry so bad right now.
May 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.
i thought you might like to see this http://www.med.umich.edu/pediatrics/ebm/cats/phprobe.htm also the hospital environment is not a normal environment and many kids and people do better while there for a variety of reasons. he could reflux way less at the hospital b/c he was not doing normal activity or eating his usual foods, just something to consider.
May 14, 2009
bskathy
He was actually at home but he was being really picky about eating especially dinner I had to give him three meals and let him decide. He ended up with pb&j which obviously doesnt cause much reflux. I told Dr that and made note of it. I told the nurse that he has days where I know he is worse.
May 14, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Sorry you are feeling frustrated with your doctors right now.

If he is refluxing and seems to be in pain I am quite sure that you would want to either increase the dose of zegerid (honestly have never heard of it so I am not familiar with the dosing) or change meds.

If you are going to change meds, a nice PPI to start with is the prevacid solutabs. They melt in the babies mouth so it is easy to administer. It seems that most (generalizing here) little one do great on 15mg split into an am and pm dose. Often times the babies will also be on Zantac which is an acid blocker.

Many babies also get tremendous relief from Mylanta or Maalox. It can help with immediate pain.

The meds. won't necessarily stop the refluxing but they take the acid out so that no damage is done to your babies stomach or esophagus.

ALso, many of these kids do better on a formula such as Alimentum/Nutramigen or if BF a non-dairy diet for mom.

These are just some ideas to discuss with your ped. when you meet with him.

May 14, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I wouldn't worry too much about how many times he refluxed in the 24 hour period while the probe was in place. As long as you have sufficient meds on board that will neutralize the acid and it will not cause damage. But, if you feel the meds are NOT doing there job by all means, switch meds and get on a good dose because then you will be getting damage form the reflux. Does that make sense???

It's not really about how much, how often, or how far up it comes (to an extent, I'll explain in a min.). It's about whether or not the meds are dosed right and are doing their job to prevent damage.

That said, if the reflux comes up far enough to get in the lungs then you have an issue, a BIG one. And a PH probe can't really tell you that. You need a Bronch or an XRay if it's that bad to take a look at the lungs for damage.

Some reflux is normal. Think about when you burp....do you ever "taste" the meal you just ate. That's mild reflux. So, to a small extent, some reflux is not a bad thing necessarily.

What were the results of the scope??? the GES???

May 14, 2009
bskathy
GES showed only reflux emptying normal. Scope was done when he was about 11 months old and normal. He did have malabsorption of fats and sugars when younger but recent labs showed that has gone. Celiac test inconclusive. Upper GI when younger showed distension. Growth hormone level and something to do with bones on low side, myself and endo think this is a totally separate issue. My major concerns are his growth, the refluxing, severe bloating, and his cough that he just started a few weeks ago. I have bad acid reflux and know the pain it causes I know he must be in the same pain. Mine went away for about a year but is now back with full force need to get myself on meds as well. Mine is caused thought from a stomach operation I had at 19 for malrotation of small intestine which was herniated as well. Certain foods bother him more so I have been steering him from those. GI told me correct med should stop most of his refluxing so I am so confused. I gave him half a tum the other night and that seemed to help some. I am going to get him some childrens tums. I am waiting to here back from GI today about med change.
May 14, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
When you did the celiac diet did you also take out all casein too? Many celiacs are also sensitive to dairy proteins too so if you only removed 1/2 the problem you wouldn't necessarily see a result. Also, if the whole household wasn't gluten free it's very likely that he did get gluten daily- gluten is sticky and the protein molecules stick to things like wooden spoons (even after washing).

I'm with everyone else; as long as he's not aspirating and the acid is not doing damage then the reflux is under control. The bigger thing is/are the other issues. I know it's frustrating to not know what's wrong with your kid. I'm in the same boat right now.

May 14, 2009
bskathy
May get celiac test done again debating. We had it done a second time and they lost results. Thought i was getting somewhere with confirmed reflux tests. When he was gluten free I had him on rice milk. I also tried to eliminate most soy as well. And we were very good about the gluten free diet (not sure if he was being glutened at my moms though who watches him while I'm at work.) I made his meals and took them over but with two other little kids it is possible he was getting gluten. He had allergy tests for major foods and environmental all negative. Endo and allergist thought regurtitation/bloating symptoms were from reflux as well. I am worried about damage it can cause. I dont feel it is under control. Still havent heard from Dr about changing med.
May 14, 2009
mommato3
Go to MARCIKIDS.com They have a PPI dosage calculator that has Zegerid on it. Now they dose kids VERY high. My kids is on a MARCI kids dose and it has saved his esophagus! But for many kids their dose is too much. I am telling you this though so you can get an idea of how much 5 mg is. I just don't know but I think that is very low. Also remember-the ph only measures acidic reflux so it had to be acidic for it to show up. My son just had an impedance probe done and refluxed 202 times-98 full esophagul episodes. The impedance measures acidic and nonacidic reflux. But I have learned through this board and others just like Jeddsmommy said that the numbers don't matter it is how much acid that matters.
May 15, 2009
bskathy
Thanks for all of replies. I guess I am a bit confused. How do I know how much acid there was? When I was watching the monitor when I know he had refluxed there were times the ph would be in the 2's and 3's. When he regurtitates he brings up food and liquid sometimes the food is not even digested. Like the time he spit up whole french green beans 8 hrs after eating the meal. I can normally tell when he refluxes he makes a burping type noise and then puffs out his checks (most of the time he has a mouth full of something). Thanks for all of the help. I am so confused by all of this. They were going to put him on prilosec Dr called yesterday. His insurance doesnt cover it though. Waiting to hear back on what else they want to try.
May 15, 2009
bskathy
Just read on zegerid website under the drugs pamplet that there have been no adequate studies on the effect on the medication on pediatric patients. Definitly need to try something else. He was on zantac and prevacid when he was younger and they did not work but he was still on formula at the time. Now maybe that he is older one of them will work better. I see alot of people use these two.
May 15, 2009
mommato3
Well-out of the 202 times my son refluxed only 3 of them were acidic. So the test results said acid was within normal limits. I don't know about the PH other than it doesn't measure nonacidic reflux but I would think a detailed copy of the final report should say something about how much acid it was. Sorry I can't help you with those numbers. I know the emptying scan looked normal when he had one but they can be unreliable. My son's stomach showed mild delay but I beg to differ that is worse than that. Has he ever been on any motility drugs like Reglan and Erythromicin? Did you see any affect? Sometimes drs will prescribe them to see if they help and if they help then you know they have some DGE problems.
May 15, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Have you (or GI/allergist) considered an eosinophilic disorder? The only test is an endoscopy and/or colonosopy with biopsy. For more info./symptoms see kidswithfoodallergies or APFED. Ellen
May 15, 2009
bskathy
Well I know there was acid because the ph level was below 4 and anything below 4 shows acid. My understanding was that a ph probe measures how many acid refluxes there are because anytime the ph drops below 4 that is a reflux with acid. The empty study only showed reflux. I refuse to try the motily meds because I was on reglan and have read alot about it and I really dont like the side effects. I suffered the worst side effects from it. He had an edoscopy and sigmoidscopy with biopsies done when he was younger around a yr old and I believe they looked for the eosinophilic disorder. I will double check though on his record thanks.
May 15, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Hi Kathy..my son is 19months and at his last weigh in was 21 lbs, but we got a virus last week, so he's probably closer to 19 now...he is only 29 in tall...he's a peanut. I'm in So Cal.
May 15, 2009
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
Z man is a cute peanut!
Check with your
doctor first!