Posted By Posting
Nov 24, 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.
Zack update
I just thought I would throw this up (pun completely intended) here for those that have followed Z's story at all... My son was born with silent reflux...then loud...at 8-9 months the puking started...severe projectile BUCKETS of puke. We couldn't take him anywhere...we all smelled all the time...our carpet was destroyed, I ended up medicated and we were all exhausted. The stress level in my house was palpable! He had a load of testing done, saw two GI's one of which still wants to do a fundo even though he has gone from puking 141 times in May to 9 in October. NINE...that's it...you tell ME that's not an improvement. You can keep your fundo. We had the GI's tell us that if they are still refluxing terribly at 18 months we are running short on hope...but I knew about Jedd and other kids who had improved measurably around 2. I held my breath and hoped for the best. Around 18 months the puking slowed. We were actually getting puke free days...then a puke free week...then stretches of 10-15 days. It was like someone flipped a switch at 2 years...he's SOOO much better...I dont hear the swallowing and the gulping...the burping is better and wonder of wonders he STOPPED SHOVING HIS FIST IN HIS MOUTH TO PUKE!!! You have no idea how exciting that is...he had started using that as a behavioral tool...he used to vomit just from the SIGHT of the bottle. It's like a new kid. Now, his eating still sucks. He's mostly bottle fed although we have been able to incorporate Pediasure with no reaction (we had a bad one at a year)...so it's Elecare and Pediasure mixed...he takes a few purees at daycare...has taken a few bites with me. He puts chips and puffs and almost anything IN his mouth, chews and spits it out. He has eaten a few macaroni pieces...it all gets spit out for the most part. I dont know how to TEACH him to swallow...or that it wont hurt to swallow like it used to...Any ideas? He works with a therapist twice a week at home...she's wonderful, but not making headway. It seems like if we can jump this last hurdle we'll be home free...swallow kid, swallow. I don't think it's medical anymore...he actually asks for bites now...just doesn't really know what to do with it...but at least he shows interest in what's on my plate! right???
Nov 24, 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
I was just thinking about you on Sunday!! I shampooing all the toddler crude out of my carpet and I was thinking... I wonder if Janet and the other Queens of Puke have to start all over by replacing their carpets completely?" Ryan is a vomit swallower and my carpet is still a mess. I cant imagine yours.

Sooo glad to hear that Zach is getting his feet under him and keeping the intake in his belly where it belongs. I bet you thought you would never get to this point. Absolutely amazing. Time for another baby eh?? : ) Interesting on the fist in the mouth trick.. Ryan's is coughing and a finger. I know I one time you were trying to stop the Prevacid cold turkey. Did you stick with that or is he still on some of it? I have only gotten Ryan down from 30 mg to 24 mg. I tried to take him down another 3 mg a day but no luck. Back up to 24. I will try again in January.

So the eating and swallowing thing.... I will make you a deal. Ryan and I will fly out there, Zach can teach him how to drink and Ryan can teach him how to eat. The child will eat tons of food but fluids are still a royal challange. He will go all day at daycare drinking only 2 oz. Then I spend all night playing catch up just to get him to 24 oz and he is suppose to be at 35 oz. I actually have to tell him "no raspberries till you take a drink." Insane. I wish someone could hypnotize him and make him forget about the connection between fluids and pain. Of course it would probably help if all his fluids didnt end up in his nose. He is no dummy.

Ryan didnt always eat though. He was a real head case about it at one time. All I had to do was sit him at the table and it was a total melt down. It was really sad. I finally got the idea to put him in his wagon and pull him around the neighborhood and feed him on the walk. I would point to a bird and pop a pear in. If he was distracted and outside he would swallow and not spit it out. Everyday I started at the table and try to feed him. When he melted down I would immediately stop and what he wouldnt finish there I took outside to the wagon and finished it on the walk. Every week he ate a little more at the table. The entire neighborhood knew when it was dinner at our house. Some were super supportive and others thought I had finally gone over the deep end. The little neighbor girls loved it because they could always get him to eat which made them feel super special. One neighbor kept teasing me that I better get it figured out before the snow started flying and the days got shorter. Little did he know that I was already stressing out about that. I was in a race against the calendar. We finally got there with everything but meat. We have good days and bad days with that but I think every parent of a toddler does. So my suggestion.. distraction distraction distraction. I even broke out the singing Barbie head on more than one occasion if it was storming outside at dinner time. Oh the things we do for these refluxers.

So that's all I have. Wagon rides and stroller rides.. Worth a try and do-able in California this time of year. Do you have any drinking advice to toss my way... Ryan's drinking... not mine....

Nov 25, 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 food allergies and EE been ruled out?? If so, have you considered a feeding clinic? He's such a cutie! El
Nov 25, 2009
jgbennett
Ginger Bennett
Mom to Stanton, 6/12/2008
dx with GERD at 7 weeks. dx with EE at 21 months
Past Life - Early Intervention Specialist and Eval Team Member
Stanton does the same thing! My husband calls him the great pretender.... We are getting feeding therapy and speech therapy through early intervetion. My tx said that it's learned dysphasia and will be a long road. Stanton switched from 30mg of prevacid to 10mg nexium and 4 ml axid. He is so much happier and hasn't thrown up in 3 weeks! Miracle of miracles. He's still not a great sleeper and gags easy so im not sure the meds are exact yet.....but am so excited to see progress. I know you must feel the same. Go Zach! PS - it would be fun if we all did meet for a feeding vacation!
Nov 25, 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.
He has been tested for EE (neg). He had a pretty bad MSPI at one point, but he seems to be doing much better with that. When you watch him it's pretty clear it's behavorial...there's no freak out...there's no choking...it's just chew chew chew...SPIT..and then he goes on with what he was doing. We stopped the Prevacid cold turkey. He's been without it for about three months. (he's been on it since about 6 months)...so far so good. Great sleeping (which was never really a problem for us)...the main thing is the lack of swallowing (hundreds of times in the span of a few minutes) and no gagging himself...which I FIRMLY believe was Zack trying to grab at the source of the pain...he just stopped it...and he was doing it CONSTANTLY. Usually ending with a nice big fat vomit. Our carpet was put in when Z was in the NICU...wow, if only I'd known I would have waited! I steam clean it often, but it's well...Elecare polka dots! We drink in front of the tv..it sucks, but it is what it is. I get him in his "Nemo trance" and then he'll drink a couple ounces..he still only does two at a time...I'll do two , then wait about 15 min and he'll do two more...then I leave him alone for a while. Right now we are getting about half his calories through Elecare/ Pediasure and half with fruit/ veggies...nothing remotely solid. Blah. Oh well, at least it's staying in for the most part, eh? Baby steps...baby steps!
Nov 30, 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 just got back into town and am tired. Are you on my FB friends?? If so, send me a message there and I can call you if you like??? My email is: onion05@gmail.com

Sorry if you are already on my FB list, I am losing track of people left and right, the being out of town the last 3/4 of a week doesn't help either.

In short answer, it sounds like you are all ready for Early Intervention to come in and do some work on O.T. for feeding, since it soulds like the medical side is under control really well.....YAY YAY YAY YAY

The downside, I had to stop working in order for Jedd to become completely oral. It was a hard decision for us, but, one that we don't regret. We are just about in financial ruin, but Jedd is eating, and that was the goal. We just felt that noone else would devote the HOURS that I could working with Jedd to get him to learn to swallow.

Does your children's hosp. have a rehabilitation center??? They can deal with this issue as well, they did hear. Ours convened once a month for a dysphasia clinic to see all of their feeding aversion and tube weaning kids. They were great. Just another though.

Dec 01, 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
I just ended my partnership with AEA 2 weeks ago. It was about impossible for me to meet with them Most of my communication was via phone and email. He was evaluated a few times at my house and a few times at daycare. He passed all the tests with flying colors. Go figure. It was their and my opnion that he needed time to have more good days than bad days for him to be brave enough to eat. Solids came toghter after a couple of months of walking around the block. Now he eats a ton. Its the drinking part that still takes a lot of focus and attention. More time I guess for that to resolve??? And it would help if it would stay out of his nose. He had a doozy of a reflux last night when he was sleeping right after his milk. His eyes flew open and his hand immediately went to the mouth reaching to get to the back of the throat. I felt so back for him. Must have been the meatballs in the spaghetti sauce. I know I know...dumb choice on my part to let him have it. He saw it on Allyson's plate though and really wanted it. He ate three of them. Didnt seem right to take food away from him...
Check with your
doctor first!