Posted By Posting
Mar 01, 2010
saustin
Sweetems' Mommie
Struggling to do what is right.
Hello everyone, I have been reading postings since my son was diagnosed at 12 weeks with reflux. Now here is the kicker. I have been fortunate enough to have doctors notice what wasn't right when I had no clue what was going on. But now, I am at a crossroads. On one hand I have a child who went from the 95th percentile when born to the 40th and now back slightly above the 50th. He was put on Raditidine (Zantac) .75mL 3 times a day, Prevacid solutab 7.5 mg twice a day, and regland 2 times a day. When I saw the specialist 2 months ago I asked if my son Liam could come off the regland and he said sure, try it and see if there is a huge difference. So, I did. And there wasn't a huge change so we kept him off the medicine since he tended to be a bit thrashy after he took it and since he was nursing my arms were getting kicked out of their sockets. So now fast forward to this past Thursday. I meet with the specialist again and he doesn't want to push surgery on us, but he thinks it is a good idea to meet with the surgeon. I came home and cried myself to sleep. I don't want to be selfish, but I talked with my husband who has GERD and takes Nexium twice a day with little to no help to see what he thought we should do. So we decided to try no medication and note everything Liam is doing from food he is eating to pooping and peeing to coughing and regurgitating. Today is day 4 of sans medication and he is fairing well. The ear piercing screams that he would have prior to the medications are minimal. Maybe 1 a day now instead of almost all day long. But his regurgitation is up a bit from when he was on the medication but again nowhere near as much as it was even 3-4 months ago when he had to come off of it for testing. I am struggling to figure out what is right for him. I don't want him to be like his daddy and end up with Barretts esophogus later in life because we didn't get him the Nissen Fundoplication surgery. But then again I don't want to rush into surgery as I have heard, and seen first hand what some complications may be. If there is anyone out there who has any suggestions or some support, I would greatly appriciate it. I feel like maybe I am trying to stick my head in the sand and brush it off as not being that bad, when it really is. Or perhaps the doctors may feel it is worse than we think. I don't know what to do. Thank you.
Mar 01, 2010
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Well I completely appreciate the struggle to do what is right with your child and having a refluxer it is really hard to know what is right to do and what is right for one child is not right for another. I just wanted to say a couple things because I have walked down your path especially with the surgeon. I want to warn you that it is probably way too early in your med wean to know that he is doing well because we have weaned my son many times and the first week was always fabulous and I would question why we were giving him meds at all and then like clockwork at 2-3 weeks it was like back to day one screaming and pain. So you may not have had enough time off the meds. As for the surgery consult it never hurts to hear what all your options are but unless your child is having life threatening symptoms from the reflux there is no way I would consult to surgery. There will be many warning signs before he suddenly develops Barretts esphogus and checks you can put in place to stop that from happening. My son did have a Nissen and it was a night/day life changing experience for us as he really was dying from his reflux. It was a great thing for us and I don't regret that decision but it isn't a fail proof system as my son still has reflux. I just wanted to say this road is not an easy one and all you can do is trust your Mommy gut and try to do what is best for your child and that may change from day to day with a refluxer. Hang in there and let us know how we can help. If you have any Nissen questions I would be happy to answer them for you. My son was 16 months when he had his done.
Mar 01, 2010
saustin
Sweetems' Mommie
Do you happen to know what the average time to have the medications take to completely leave his system? I have read 4 hours for the Zantac and anywhere from 3 days to 2 weeks for the Prevacid. I am wondering when you decided for your child to have the Nissen, what made you realize that at that time it was right? I know that it is not fullproof. Can your child vomit if they get a stomach bug? Are they able to burp? How has their growth improved? Sooooooo many questions and concerns. I just don't know if it is right, or what age it should take place if it should take place. Is having a child on PPI's for their whole life the right thing? I appriciate all you are willing to share.. Thank you. It is nice to know that my mommy gut is something I should listen to.
Mar 02, 2010
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
We were first talking to a surgeon about a Nissen at 8 months and really struggled with the decision until 16 months. Our final breaking point came in a week where we were sent to the hospital twice for Acute life threatening episodes where he turned blue and stopped breathing. He was already on the highest doses of meds, we had tried every med on the market, and ruled out everything else from CF, EE, allergies, etc. Not only was it a matter of life and death as he had really bad asthma, aspiration pneumonias, and apnea but it was a quality of life issue. Our child never slept and really going to the doctor every week wasn't all that fun with another child at home to take care of. My son wasn't able to vomit for the first year post Nissen and when he got a stomach bug we ended up in the hospital getting a ng tube put in to clear his stomach and meds to stop the retching. But now 2+ years later his wrap has loosened some and he just had a stomach bug and could vomit past his wrap just fine. It takes some forceful work on his part but he definitely can vomit and he has always been able to burp but he definitely gets more trapped gas in his belly then the average child and still wakes at night sometimes with serious gas pain. My son never really had any growth issues pre-Nissen because he was a comfort eater and soothed his throat pain with formula but he has gained a ton of weight since surgery and finally eats something other then formula which he wouldn't even look at real food prior to surgery. I don't think there is anything wrong with a child on a PPI there whole life. There are some longer term studies out now and they seem to say there are some risks especially in how the PPIs effect the bodies ability to absorb vitamins and minerals but that can easily be supplemented and tested for as your child gets bigger. My son still takes a PPI even post Nissen and I have no problem giving it to him. I have seen first hand severe erosion in his esophagus. For us the benefits outweigh the risks to the meds. If you have any other questions don't hesitate to ask. I know a few other Nissen Moms on here so I will try to get them to weigh in and tell there story to help you out too. And having to come off meds many times for testing we have been told Zantac about 24 hours and Prevacid 2 full weeks before it is out of the system. Hope that helps.
Mar 02, 2010
saustin
Sweetems' Mommie
Ohh that helps soooooooooooooooooooooooo much. I imagine you can empathize with my decision. My son too is a comfort eater. That is part of the reason why my pediatrician keeps telling me not to worry. He is still gaining weight. but very slowly for the amount I breast/solid feed him. (he sucks me dry everyday. Great for me ;)). Have to find some bringht side to things. I don't think that Liam has had a life threating insident other than when he was 6 days old with a kidney infection. I was wondering if while during the many attempts to wean your son from meds if you noticed a mucus buildup in his sinuses. He currently has it a lot and I not not certain if it is a cold or the result of his reflux or a combination of both. The reason I ask is because my son has never had this mucus stuff down his throat. The closest he came to a cold mucus incedent was when he had the PH study and they took the tube out and he had the snuffles for about 5 days. But I was able to use a bulb syringe to pull the goop out. This time I try and nothing is coming out of his nose. I want to take a vaccume to him to help get the gurgle gone because he gurgles, then coughs, and tries to nurse, but sometimes it is like he is choking. Any suggestions? And as far as food goes. He has days where he wants lots of mashed foods ranging from applesauce to butternut squash to days like today where he only wants breastmilk with other foods rejected. I just go with the flow of what he wants to eat. But is this something your son experiences now after the Nissen? Ohh also, when you tried weaning the meds from your son. Did you slowly notice an increase in the regurgitation and spitting up or was it drastic? I have slowly noticed an increase but it has been 5 days and like you said it was week 2 that you really noticed. Thank you again
Check with your
doctor first!