Posted By Posting
Apr 01, 2010
bradysmom
New member looking for help
My son Brady is 25 months old and weighs 21 lbs. He was labeled FTT at 9 mos. and diagnosed with gerd at 16 months. He is being treated by a feeding/swallowing center and initially made progress once the reflux was diagnosed and we found the right combination/dosages of meds. However, his intake and weight gain have come to a standstill. My husband and I feel as though something else might be going on that is preventing him from making progress and his doctor agrees. We just don't know what that could be. Any similar stories out there or possibilities to look into. We recently found out that his adenoids are enlarged, so Brady is undergoing an adenoidectomy next week on the chance that maybe the enlarged adenoids could be holding back his progress with intake. Current meds include Prevacid, Pepcid, Periactin, and he is on Miralax. He was on Eryped with bad results. He has no other medical or developmental issues. Any suggestions?
Apr 01, 2010
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
Do you keep a food log??? I always did and it helped me whenever Jedd's weight would plateau.

I used it to "prove" he required much more than the normal amount of cals per day in order to slowly gain and when he did stop gaining, I could bump certain meals and then we started to see him gain.

I''m actually getting ready to start food logging again as he had not gained weight in 6 months. He's still hovering just under the 50%tile but we don't want him to drop any more. We've done our time at the bottom, don't want to be there again, so we are being really proactive.

Most of the time when child is not gaining weight properly when they have proved that they can do it in the past, it's just a matter of bumping the number of calories that you can get into them in a 24 hour period.

I'd really start with logging and try to nail down how much he is taking in and work from there.

Are you working with a dietitian?

Apr 02, 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
It will be very interesting to see what happens after he has his adenoids removed. My niece (non refluxer) was at the bottom of the chart for height and weight from 1/2 to 3. Rarely ever sick though. My sister never though much about it as we were very skinny kids and her sister in law and mother in law are very short. She thought it was genetic. After her 3 yr appointmet her doc sent her to an ENT as she thought her tonsils were too bed. She had her adenoids and tonsils removed as they were indeed very large although never infected. In 8 weeks she put on 9 pounds and grew and inch and a quarter!! She has enery abound and chatters non stop. Looks an acts like a totally different kid. Unbelievable. Good luck with surgery and let us know how things progress.
Apr 02, 2010
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Karen- thanks for posting the info on your niece! Very interesting!

Bradysmom- I also have one who is pretty low on the weight for her height. She was just recently diagnosed with food allergies. Apparently she has been dealing with them for a long time and we just couldn't tell which specific food was causing the problem. She did have other symptoms too (breathing/asthma issues, eczema/rashes along with occasional stomach aches). Three days after pulling the foods she tested positive for she started eating like a PIG.

We also have been adding DuoCal to her (rice) milk to sneak a few extra calories in. You might ask about trying that as well. she seems to like the flavor. If they do tell you to try it I would recommend seeing if your local pharmacy can order you *one*. Saves on the shipping & on having to buy a case when you aren't sure if they will drink it. ;)

I hope that the adenoids surgery will go well and that it will be the answer you are looking for! Keep us updated.
Apr 03, 2010
bradysmom
Thank you all for the suggestions and info!! I have been keeping a food log for Brady since he was 11 months old and I actually chart his intake by ounces (for volume) since last summer. Brady self-limits his intake , so the feeding clinic actually advised us to chart the ounces he eats and drinks. We know from this that he needs at least 36 ounces per day of food and milk in order to maintain his weight. Our problem is that he has like an internal mechanism that stops when he hits a certain point. Once he reaches that point, its almost impossible to get any more into him! We used to count calories and we saw the same thing! Even with the supplements, he would just hit his calorie limit quicker! Brady's currently on whole milk without any calorie additives. He was on the duocal for 7 months, and it actually was counterproductive for him. Our feeding doctor explained that duocal is basically carbs and fat (each contributing to each calorie in duocal) and that the carb component is bad for reflux and the fat component is bad for the delayed emptying. She took Brady off it and he immediately showed improvement. We've done boost and pediasure, but he refuses them. He was down to about an ounce of liquid a day for quite a while on those. We've met with two dieticians but both told us there wasn't much they could for us as we are already using the basic recommendations to boost calorie intake and Brady is refusing to take in more! He's also been tested for food allergies (blood and skin prick tests) and all were negative. I'm hopeful that the adenoidectomy will have some type of positive effect in just boosting his intake up a few ounces! Thank you all again for the well wishes! I'll keep you updated!
Apr 04, 2010
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
Have they thought about adding in a med for his DGE?? That might help get you over that 36 ounces per day thing.

What kind of feeding schedule are you on since he is setting the limits? I know with Jedd, we feed him on a schedule. We actually used water for a while spaced apart between meals to help empty his tummy when we were stopping his DGE med. It helped him out.

I'd be wary of a dietitian who says they can't help anymore. Pediasure is really dense and isn't broken down at all so it takes longer to pass through a system. Have you ever tried Peptamen Jr instead. I'd see if the dietcien has some you can try. It tastes just as good as the Pediasure but the huge difference is that Peptamen Jr is made "broken down". That helps the body pass it through the system faster.

Jedd had such an awful time on Pediasure when we tried it after his Alimentum. After we switched to the Pep. we saw a GREAT big difference in the volume that would stay down.

Apr 08, 2010
bradysmom
Thanks Jessica! The only meds we tried for the DGE was Eryped, which worked great for the first week, and then it completely backfired. Brady had nonstop diarrhea and dropped his total intake by 10 ounces per day. We talked about reglan before we tried the eryped, but honestly I'm nervous to put him on that and it hasn't come up again since he was taken off the eryped. We keep Brady on a pretty strict feeding schedule (9, 12, 3, and 6:00). We only give him milk, no water (our dr. doesn't want us to waste ounces on water), which I feel terrible about because Brady begs us for water. When he's having really bad milk days, I give him a few ounces of water just to get the miralax in him and keep his system moving. Using the water is a good tip, and I'm going to look into Peptamen Jr--thanks again for the suggestions!
Check with your
doctor first!