Posted By Posting
Dec 03, 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
LAPAROSCOPIC GERD surgery
My son will be 18 months next week! And the big "will outgrow reflux" dates are passing and we haven't outgrown this...so my well intentioned family now seems to want to offer advice and remedies. Thanksgiving was draining due to all the smiling and being polite as all uncles and aunts freely gave me advice...ugh. I'm sure you all understand. Well, one of my uncles is a family doctor in a small town. He sees everybody and is pretty knowledgable. He let me know that a new ped. GI has moved into our state and is performing lots of LAPAROSCOPIC reflux surgeries even on infants as young as 5 months old. My GI hasn't ever mentioned this and I've never heard of this surgery. Anyone know about this? Is it worth getting an appointment to find out more?
Dec 03, 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
You are not alone. Ryan turned 18 months old 2 weeks ago and still refluxes like crazy on liquids. I canceled my GI appointment because I didnt want to hear about it... the fundo surgery that is. I am following Janets and Jessica's leads and holding out to see what happens at 2 yrs. Zach and Jedd both showed major improvements between 18 and 24 months. My ped is totally supportive of my plan. The acid is really well controlled with the caracream/prevacid mix so she is comfortable with my wait and see approach. You do not have to do anything you are not comfortable with. You are the mom. And yes I know the looks and the comments all too well. I have learned to not tell anyone how he is doing, what meds he is on etc. None the less I was a hair away from smacking my older sister for her stupid comments at Thanksgiving. But I digress...

What your uncle is referring to is Laparscopic Nissen Fundopiclation.... what we all call a fundo. In short they wrap part of the stomache around the LES to make a new LES that will in theory close right.

Here's my two cents.. Our kids are young and developing. They have a very very good chance of their LES maturing on its own. Give them time. If you can neutralize the acid to stop the burn and protect their esophagus and you can get them growing and thriving, leave them be and give them a chance to work this out on their own. Again.. just my opinion.

Now if Ryans fluids continue to end up in his nose at 2 and a half then fine, I will talk to someone and take what they have to say under advisement.

Do you feel like things are getting better even though maybe they are not perfect? Are you starting to see more good days than bad days?

All that said, if you are curious to see what he has to say, by all means make an appointment. Perhaps you will learn something new for you and for all of us. It never hurts to learn more info.

A little info on Fundos for you... http://www.lapsurg.org/reflux.html

Dec 03, 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
Thanks Karen! Since all of really intense testing began back in October, things with Stanton seem to have fallen apart. In October we had to go off meds in preparation for the scope, ph probe, etc. We did lots of testing and labs and biopsies while he was out. Anyway - since then i just don't feel we are back on a good schedule: terrible sleeping again, back to puking, loud refluxing/wet hiccups, major food refusal when we had a small list going of 4 things he would eat. We had a good September, but before and since, more bad days then good. Part of me feels like i am still on a quest to be heard clearly by a dr. I've made the hard choice to switch peds. I really like our ped. He always fits us in, returns my calls, makes referrals, is close to my house.....however.....he is super laid back, which, before having a chronically sick child, i thought I liked. Now, 16 antibiotics, 4 surgeries, and 12 procedures under our belt, I feel completely different! So we are seeing someone new for the 18 month visit. At our gi visits, I notice the dr. comes in with his ideas and does have info to back them up, however, has yet to take the time to review the Marci-kids info I gave him. Ugh - again not listening to my ideas. I guess I just need to breath and be super assertive at our upcoming appointments. And we have lots in December and January. I'll keep you posted.
Dec 03, 2009
adelines mom
okay adeline just hit the 18 month mark on November 29 and we are in the same boat. she has really good days and then WAM two days of throwing up and I am back to square one. the teeth are a nightmare. all four of her molars are finally all the way in and now she is getting the top two fangs. i have to remember that the teething is always responsible! the ot was here on Tuesday and I reminded her that she was the ONLY person that would say OUT loud that adeline would probably reflux until she was 18 months or 2 years. I kept hearing 6 months, 8 months, 12 months, etc. too. we have a great gi. he is also VERY laid back. i really pushed him twice to have the scope done to rule out EE and adeline got sick both times right before the procedure was scheduled and we had to cancel. i took this as a sign not to do it right now. he did not want to do it. she has a blocked right nostril and sedation is a HUGE problem. image one nostril with reflux. HA! it has been a doozy. anyway we saw him two weeks ago and also met with his nutritionist. she had really grown in length but not weight. she is 20 pounds, 10 ounes. she is active right now. just started pulling up to stand. he said to keep on keeping on. wants us to see the feeding specialist at his hospital which really focuses on sensory issues. adeline is stuck in puree land! have been trying to stay gluten free, wheat free and most dairy free. gave her a TINY piece of chicken nugget today and she choked, turned red and threw up several times. i just sat there and cried. she can't do real food at all and he told me at our visit that this may be a life long thing. it is very frustrating. i have an enmorous appetite and it is crazy that she has eating issues. go figure. the reflux is better though than what it was and I am thankful for that. just trying to ride it out. i know my doctors think i am nutts at times though. i arrive at each appointment with a packet of info and most of the time email the heck out of them. i am determined to keep ALL of them in the loop!!!!!!!!!! i am also determined that they listen to me and help me with her issues. we are right there with you. hang in there!
Dec 03, 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
Oh you're right! I didn't think about the teething this go round. He is teething pretty bad these days too. It's always something. Stanton has always refused food so he doesn't even take cereals or stage 1 baby foods. My ot says the feeding won't progress until the reflux is more under control. She also said he has learned dysphasia (not swallowing) due to his past experiences with food. So we are on prescription high calorie milk, vital jr., and after coding it as mdical equipment, our insurance is covering it! All I want is what's best for him. Lots to think about.
Dec 04, 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
Ditto to what's already here.:-)

I've said it before and I'll say it again. TIME is a refluxers BEST friend. Find a Dr/GI/Surgeon who will agree to give you TIME and you will find your best friend.

Jedd showed improvements during that 18-24 month time frame and another stage of improvement from 34-36 months. I look back and can't believe the difference. Now, if I try to wean him or mess with his dose, I ask for trouble. I did that about 2 weeks ago and regretted it.

Dec 04, 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 swore our day would NEVER come...SWORE it! All the docs told me that if he was still exhibiting signs at 18 months we were screwed (sorry for the language..I'm paraphrasing, of course). At 18 months he threw up 141 times in April (lol I keep a puke log). May was 90, June was 30!!! and it kept dropping until October was 9...9 times! down from 141. He turned 2 on Sept 28th. He has thrown up a couple times in november, but both were from choking on a potato chip or guzzling water (which I stupidly let him do...I won't make that mistake again). Life ain't perfect..he doesn't eat much or willingly, BUT that's a side effect I think. If they aren't aspirating and they are relatively healthy I saw wait...time really is their best friend. as a side note I have two GI's...one was intent on waiting and one (the head of the pedi GI's at UCLA) wanted to do the fundo. We got a letter from him a couple days ago summarizing Z's treatment...even WITH the marked improvement he wants to do a fundo. Respecfully, I declined. I've been told that the protocol at many hospitals (UCLA included) is if there is puking and reflux at 2, fundo...no questions asked. Although laproscopic is always better, it's the same surgery...and there are no guarantees...almost every kid I know with a fundo has had to have it repaired once or twice.
Check with your
doctor first!