Posted By Posting
Mar 31, 2011
elenacs
Elena, Mom to 2 great kids with the 3 Amigos..GERD, Allergies, & Asthma.
Dealing with this for over 8 years. Insight?
Hello everyone, I'm new to this board and could really use some knowledgeable insight, help, coping mechanisms in dealing with this stressful ride called reflux. I've got 2 kids, ages 6 and 8 1/2 who have always had GERD. The younger one, my daughter, presents with mild DGE and GERD. She's a fussy eater...but otherwise, no other issues. My son who is 8 1/2 since the day he was born vomited, presented with Sandifer's, had an NG feeding tube for 3 months due to FTT...finally after dumping our first GI who mismanaged his whole condition, we signed on with another GI at Children's in Boston who I really respect...a bit conservative, but I get why. In the course of his life, he's had 2 Endoscopies (normal, including biopsies), an Upper GI (normal..but we all know it can have iffy results),Lung x-rays (normal) skin testing showed severe allergies to weeds, trees, grass, and mold. He's been getting shots for the first three for over a year and a half now. (My daughter also has some env allergies as well as a mild egg allergy). He has mild asthma which usually present itself with a virus. The symptoms I see in him (since about 5 yrs) throat clearing, morning cough..somtimes off and on during the day, and some 'air bups' during the day. No pain, no swallowing issues.... He had 3 really decent years from 5-8. Until August when we tried to do a wean. He's on 30mg Prevacid am, Zyrtec, and Flonase (during the Spring). He's got a great appetite. When we tried to wean him to 15mg of Prevacid last August, and all hell broke loose.....after 2 weeks more throat clearing, coughs and then 5 week of mild wheezing which we finally got under control. Keep in mind this was a bad ragweed season as well and he's very allergic. Since being back on the 30 mg (Septmeber) we haven't been able to get him back to his 'baseline.' He never used to cough like this in the morning...trying to hack up phglem of some sort. Post-nasal drip from either allergie or GERD. I just can't figure any of this out. So to make a long story short, GI won't up his meds until we get to the bottom of it...via Impedance Probe. While I am scared of learning the results, we really need to know what's going so we can treat the right thing. We KNOW he has allergies, so we treat that.....but his GERD is so tricky..it presents with more of an LPR type of GERD. If it shows non-acid reflux, I just don't know what to do. The GIs mentions meds and then surgery...which we know is 50/50 with serious side-effects. I took him to an ENT yesterday and his ears and throat looked fine..but his nose was swollen inside which could be due to the allergies and the really dry air right now. He said it's been a really tough Winter in regards to URIs and my kids got hit with them every dew weeks. The ENT said that his throat clearing could very well be from allergies or reflux...sensory or habit. I know when he as a cold with nasal secretions he clears his throat all day long. He agreed that the Impedance was a good thing to do. Ladies, I haven't slept in months, have lump in my throat all day, have lost 6lbs in 2 weeks...and generally am super-stressed out. My husband thinks I'm over-reacting and that he'll be fine. What do you all think? I'm so over this GERD hell. On the bright side, he's a really happy kid. FYI: Never coughs during the night...very quiet and a solid sleeper. I am scared of what the Impedance will show. Thanks for listening and sorry for sounding so frantic. I just could really use some help from people who can relate. Best, Elena
Mar 31, 2011
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
Big Hugs to you Elena!! I am sorry that you have had to deal with this roller coaster ride for so long.

I would do the Probe test. I know you are scared to know the results, but not knowing does not make it not be there. You just as well have the facts.

I know I am a walking bill board for Zegrid, but maybe it is time for a switch. He has been taking Prevacid for a Long time. A change may do him good. It is certainly worth a 2 week trial. You dont have anything to loose. If he cant swallow the over the counter capules you can get a script for the powder packets or you make the OTC capusules into a liquid your self. See www.refluxsolutions.com and www.marci-kids. com. That is what I do.

Have you ever considered taking you son to see an Internal Medicine doctor? They seem to be better diagnosticians. They look at the entire body, not just one piece part like a specialist does. I know it may not be customary to take a child to an Internest, but it feels like one might be in order for your son. Ask around to get recommendations for a really good one that will take their time with you and will really give him a good look. As with all doctors, some are better than others.

Apr 02, 2011
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
I agree with vigilanteemom, it may be time for a med switch, or you could just try on your own giving him a zantac or pepcid at night in addition to the Prevacid am to get him back to baseline. We've had similar experience with my 8yr old. We had him off his prilosec for almost a year, thought he was good, but he kept getting pickier and pickier about eating. Then asthma and allergies worse. Then finally bad stomach aches constant throat clearing, post-nasal drip, etc. He's always had LPR, also, and had 3 scopes that don't show much. I think with the non-acid reflux the surgery is more successful, but our GI never wanted to do it, unless the meds didn't work anymore. Personally, I would play with it myself. Maybe try giving him 30mg morning and 15mg at night, or a zantac at night. If he's waking up clearing his throat every morning, then either he's not getting enough coverage for the reflux with medicine, or maybe he's eating reflux trigger foods that he shouldn't? Citrus, chocolate, spices, tomato, etc. Now that my son is on Zegerid, his asthma and allergies are gone...until spring kicks in, that is!
Apr 03, 2011
elenacs
Elena, Mom to 2 great kids with the 3 Amigos..GERD, Allergies, & Asthma.
Debbie, I think you're both right...Sebastian needs an increase in dose and/or medication. I switched him back to the 30mg Prevacid Solutab (last week) instead of 2 OTC Prevacid and only noticed that he's having more bowel movements and a little gas. He has been a throat clearer since he was 5 but had bad reflux as a baby/toddler....we thought it 'went into remission' at 4 and took him off meds for a year and then by 5 he was coughing after meals and started throat clearing. At 5 we put him on 30mg of Prevacid in the am and all coughing ceased but still continued to throat clear here and there...but nothing major, and was very healthy for 8 years...not much in the way of colds, post-nasal drip, hardly needed his inhalers... life was pretty good! Even after we tried to wean the Prevacid down and failed, when we put him back to 30 mg he never managed to get back to where he was before. It's so frustrating. I'm tired of subjecting him to these tests. I know when he has the Impedance done at the end of the month it will most likely show a good amount of non-acid reflux...and I don't understand how added more PPIs would help him. You say your son has LPR reflux...so how did the Zegerid change work for him ...was his reflux more acidic and uncontrolled before then? How much Prilosec was he on before the switch and how much Zegerid does he take now and how often? I'm curious about Zegerid because I have heard good stories about it...How long has he been on Zegerid with good results? I should have never listened to the GI and tried to wean him because I knew it wouldn't work as much as I wanted it to for him. Like your son, he's sort of complicated...in the way of allergies, GERD, asthma...Does your GI believe it will be a life-long condition? Did the throat clearing end completely on the Zegerid and does he still do it now and then? Our GI doesn't want to do a fundo either (they are pretty against it at Children's in Boston..unless it a life-threatening case),...but doesn't want to play with meds until we know what we're dealing with. I sort of agree but I want to get on with it and move forward to help him out. He eats really well, sleeps well, 'dry burps' as he says...never 'wet', is very happy, has terrible env. allergies though which complicates things as you know. How did you manage to not have an anxiety-attack the year he was struggling off meds? For some reason, I'm having a hard time knowing that we may find out he's a severe refluxer after the Impedance and will have to deal with it on a much different level. Uugh. The other thing that is ticking me off is that after 8 years of no cavities he now has 3 cavities on his 6 year molars. They appeared within 3 months of his last cleaning....and we really take oral hygiene seriously because of the reflux. Coincidence? Given that he has no night-time protection? Ladies, I'm sorry for all the questions...I have no one else to turn to that has any experiencec with this in an older child. Best again, Elena
Apr 04, 2011
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
Hi Elena, I hear what you are saying about everything, even the cavities, my son had two so far. We finally just got him on the Zegerid this month. He is 8 and 65lbs. He takes 20mg twice a day. He also took the prilosec 20mg twice a day when he was younger, but it never was enough. The last two mornings, he has had NO throat clearing, and NO asthma, I took him off the inhaler because it was making the reflux worse(our GI always said once we got the reflux under control, the asthma would probably go away). Allergies are gone too. He does have spring allergies, though, so as soon as the rain stops here in CT, I'm sure we will be starting the allegra for pollen. I finally realized the zyrtec made his reflux worse. Our GI does believe it will be a lifelong condition now. I feel lucky that I had a GI that would prescribe a twice a day dose of the PPI's. One I had seen wouldn't. Our GI has since switched hospitals, and now is 5 hours away, so I am buying the meds OTC. Our Pediatrician did say though that she has seen some kids with bad enough reflux to need twice a day dosing. Personally, I wouldn't bother doing the test. I know my son has reflux. He's had three scopes done. After the 2nd one, the GI said it was clear and the reflux was gone and to take him off meds. When we did, he got miserable very fast! So the GI said that just because there was no damage from reflux doesn't mean that he doesn't have it and if he has symptoms to go by that. Some people feel the need to know for sure that it is LPR reflux, or non-acid reflux, or whatever you may call it. Personally, I think my son's is LPR, because he also complains of ear pain when it is bad, and he had so much congestion from it, so it must go up in the estachian tubes, but there was never any infection present when I brought him to be checked. Also, the allergist we see thinks it is reflux. I had two anxiety attacks over the last year and a half and I take cymbalta now, which has helped me tremendously. Please see your doctor for help if you have a lot of anxiety, don't neglect yourself, we can't be supermom's, though I've tried so hard! E-mail me anytime, I know how frustrating it is! Lot's of us have turned to just buying the stuff OTC once we know what works. dpasini@att.net
Apr 12, 2011
elenacs
Elena, Mom to 2 great kids with the 3 Amigos..GERD, Allergies, & Asthma.
He never had sinus issues in the past...now since we've been unable to get it under control, it's like every 2-3 weeks there is congestion and junky cough. I am quite certain he needs night-time coverage....Here's an interesting update...10 days ago, I asked the GI to switch him back to 30mg solutabs of Prevacid (he has been on OTC version) and within 3 days, the cough and throat clearing cleared up by 75%....By day 8 he got hit with a violent stomach bug that tore through our house. He vomited and wretched abotu 15 times...so the next day he throat cleared 1,000 times....and within 2 days sinus congestion and junky cough came on... I am so ticked off, because just his luck we thought we saw some improvement on the solutabs and now we really don't know, and we're back to square one. I think his meds need to be upped first and then changed if that doesn't work......until we get him to a good place...and then slowly taper him back to the 30mg where he was stabilized for a long time. Does this make any sense? Also, would the sinus problems go away once the reflux in better controlled? I'm seriously losing it. This kid can't catch a break...now he's evil on the inhalers.....and he is generally the sweetest kid...:( Elena
May 04, 2011
beth anderson
PAGER Director and original GERD Nerd
Mother of Chris (1988) and Katie (1990)
Author of The Reflux Book
Member of PAGER since 1992
Donor since 1992
Elena, there are a few things that make reflux spin out of control. A trial of lowering the meds can do it, but there are other things we hear about more often. Growth spurts are a big one. Not sure what this has to do with anything but a well-respected doc confirmed that he sees this in his patients. He ups the doses for a few months. Sinus infection is one of the most common reasons. And these kids are so tough that it is hard to tell when their sinuses are infected. New teeth can also cause reflux that was well controlled to flare up. I know of one GI who thinks that swollen tonsils and adenoids can cause reflux instead of always being caused *by* reflux. I don't think she has published yet but it is an interesting theory.

Whenever you are considering a test, ask yourself and the doctor how the information will change the treatment. If you do see results on the impedance, how will this change the treatment? If it is non-acid reflux, it *will* show up on this machine much better than on a pH probe. But are you willing to discuss motility meds? Many docs and parents avoid them. Yes Impedance is a great test when you need to know if it is 'really' reflux, but I think you already know that. The question for me is more about why the flare and how to stop it.

Another idea: Could he have developed new allergies? Or could there be a new ingredient in a favorite food? It is easy to think some brand of cereal is fine and then find out that they changed the ingredients. Did he develop a recent craving for a food that is fermented (moldy)? Have you had a water leak that could be growing mold in your house? Or maybe in his classroom? Do you know somebody else will a mold allergy who will play "canary" for a few hours and hang out with your son?

Let us know what you learn. Hang in there!
Check with your
doctor first!