Posted By Posting
Jan 18, 2010
max'smommy
Tubes question
I am a long time reader and first time poster. My son, Max, was diagnosed w/ reflux at about 6 weeks of age from my ped. He was put on Prevacid and is currently on 15 mg a day which helped a ton at the beginning, but does not seem to be controlling it anymore. In the past 2 mos, he has had 3 ear infections, coughing, wheezing, congestion, etc. My ped. kept saying it was just a cold and put him on another antibiotic for the ear infections. I was not conviced with this and took him last week to see an ENT. He has so much fluid in his ears that has sat there for so long he has lost 70% of his hearing and NEITHER eardrum is vibrating at all! He thinks, as do I, that it is his reflux coming up and settling in his ears and causing his respiratory problems. Obviously not a bacterial infection, if 3 rounds of antibiotics did nothing. So we are getting tubes on Wed. but can't get into a pediatric GI until Feb. 8th. My question....I know the tubes will help all the fluid drain, but won't his ears just fill up again until we get his reflux under control? Or will tubes continue to help them drain and not fill up? I am afraid it might be a month+ before we get his reflux under control and don't want him to suffer anymore! Thanks for all of your helpful information on this site, as well! And proof to me that I AM NOT CRAZY!!
Jan 18, 2010
haylee bug
Mother of a reflux baby
Tubes question
I'm sorry to hear about his ears. My daughter was on 30 mg a day of precacid so Max may of outgrown his dose and needs to be adjusted. It's really hard to get doctors to understand reflux and how to treat it, espically when it's a baby. They want to call everything colic. I know the coughing, wheezing, etc is a symptom of reflux :( I think I would get a new doctor; that's unexceptable that he lost some of his hearing due to their negligence. When I called to schedule my daughters GI appointment they gave me an appointment several weeks away and I called her primary doctor to call the office for me. (that was on a Friday and he was able to get her in that upcoming monday. The bad news is the GI office didn't really offer me much help because of the dreaded statement: SHE'S GAINING WEIGHT). Where you able to ask the ENT about the tubes and if they would keep filling up until the reflux is under control? Even if the reflux is under "control" if it's not cured you can still have the problems. I would think the tubes would help out alot. I know it's time consuming, but I would be taking him to the ENT all the time to make sure he's not full of fluid. Please keep us posted on his progress.
Jan 18, 2010
max'smommy
Tubes question
Thanks, Haylee's mommy! Yes, I am looking for a new pediatrician and my ENT is actually trying to get us in to a GI sooner. I will ask him on Wednesday about the tubes and if they would keep filling up. You bring up a good point...even if his reflux is under control it won't be "cured." There is no "cure" correct? They just have to "outgrow it." All we can do is help the symptoms, right? I, too, am worried about the GI, as Max is gaining and is at a very healthy weight (19 lbs). He was 9 lbs. when he was born! Hopefully they can at least figure out his medication and either up our dosage, change it, or add something else. My ped (soon to be former ped) says he is on the maximum dose for a baby...well we all know that is not true! So frustrating!
Jan 18, 2010
haylee bug
Mother of a reflux baby
tubes question
They just keep tellling me you have to wait for them to outgrown it which is awful. Our first doctor said by three months she should be fine. Well stupid me waited (and prayed for that day) and it came and went with no results. At one point I would sit and cry with her. It's hard to watch someone sit in pain (clearly she was in pain, but the doctors and hospital couldn't see it!) That's when I realise her then doctor didn't want to deal with me so we switched. Her new doctor was honest, although, I didn't want to hear it. He said it usually peaks between 4-6 months (which is where we are at now and he hit that nail on the head) and can end anywhere from 6 months to a year, but rarely some go on for two years and beyond. With the GI doctor I was hoping to have test done or something to see if we could do something, but that didn't happened. He looked at her weight and sent me on my way. I wish I would of been more persistent, but I at the time I didn't know what to expect. So remeber that, be persistent. Does he sleep elevated? Is he proped up to almost a sitting position when eating? Maybe that would help with the fluid. My daughter was four pounds at birth and was already taking 30 mgs of prevacid by the time she was 9 pounds, but 30 mgs is the max does (even for adults). When Haylee was admitted for failure to thrive at 4 weeks old the attending doctors there said in some cases they can treat refluxers with two differant meds at the same time. Maybe that would help keep the fluid down. The GI doctor did suggest thickening her formula to keep it down because they said it can pool in the ears, but that was never an issue for us so I didn't do that. Maybe that would help you. It's really frustrating and it's hard because what works for some parents doesn't work for others. It's just nice to have the support.
Jan 19, 2010
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
My son's ears were a mess too. I will spare you the details except to say the tubes for him were amazing!!!! Although he still refluxed up into his ears it drained right away. Ears cleared up, hearing cleared up, never another ear infection etc. So glad you are doing the tubes. As far as the dosage, Ryan was put on 30mg at 10 months.
Jan 20, 2010
sam harris
The ear tubes will help. I'd expect them to drain continually. Please let us know how it goes. I'd expect recovery to be virtually nil, but both times my daughter had tubes put in, she was having another, more major surgery at the same time, which required longer recovery, so I can't speak from experience there.
Jan 23, 2010
max'smommy
Tubes question
Well, tubes went great on Wednesday and he has recovered rather quickly. The fluid in his right ear is STILL draining (3 days later) and he definitely feels better and is happier all around. He is still waking up every hour all night long though (sigh) and not taking good naps. He is still horribly congested, coughing, snoring, etc. I am now wondering if it is a food allergy? He has been on solids for over 2 mos. which is right when all of this started. He eats pretty much everything (fruits,veges, oatmeal). Any thoughts?? I guess I should start keeping a food journal, or consider cutting out all solids and see how he does. We have our first GI appt. on Monday, so we'll see what he says, as well. It is so frustrating.....I wish we could pinpoint the problem or problems! Tubes are a great start, however, and I can already see a difference which gives me some hope!
Jan 25, 2010
max'smommy
Tubes question - GI waste of time!
Well saw the GI for the first time today and it was a complete waste of time. As haylee bug's mom said, since he is gaining weight, the dr. was willing to do nothing. Said the 15 mg. of Prevacid is the max for his age/weight. He does want to do a gastric emptying test, though, so we have that on Wed. We'll see what that shows. Basically, he said he should outgrow it by 9 mos. to one year old. So frustrating!!
Jan 25, 2010
haylee bug
Mother of a reflux baby
Tubes Question
It's good to here the tubes went well. Hopefully it will continue to get better. Keep us posted on the results of the test. Your right about the frustrating. It's a lot harder to wait for someone to outgrown something then most people thing. This experience with reflux has made me a differant person and I'm not sure that's a good thing!
Jan 25, 2010
sam harris
Tubes / Allergies
I'm glad to hear the tubes are in, and working well! In regard to the congestion, I'm not sure if you've tried this or not, but the most common allergy that I know of is dust mites, which are everywhere, no matter how much you clean. Some things you can do to minimize them however: Wash all bedding weekly, in HOT water (130+) -this is a real hassle, since you have to adjust the H2O heater up & down for each time you wash at this heat. If you don't have a vacuum cleaner with a HEPA filter, get one, and change it regularly. Wash all stuffed animals in the crib / bed as well, when you launder the bedding. You can also buy a special mattress cover which is tightly-woven fabric (not rubber / plastic) that should block them from coming through. I only mention this particular allergy, since it is so common, and relatively easy to identify vs. food or pets, etc.. Hope it helps! Sam
Jan 26, 2010
max'smommy
Tubes question/allergies
Thanks Sam for the suggestions! My chiropractor actually practices BioSET, which uses acupressure and chiropractic care to identify and treat allergies. It has worked WONDERS for my daughter and is non-invasive, not painful, etc. Max has been tested for several things and dust mites came up as an allergy. So we have had him "cleared" of that, among other things, including gluten & casein. Also, turns out he was allergic to the Alimentum we had him on (which could be a reason he had so many ear infections), so we switched him to Similac Sensitive and he is doing much better. I HIGHLY recommend the BioSET system for alleriges if you can find a practioner in your area! It is definitely worth a shot and has saved my daughter from being on any allergy meds or Benadryl. Here is a great informational site: http://www.bioset.net/bioset_system.htm
Check with your
doctor first!