Posted By Posting
Jul 21, 2004
Sherry in PA
Dealing with people who don't understand GERD
Any suggestions for how to explain things to friends and relatives who seem to wonder why Sarah may need surgery when she appears fine to them? Her Larynx is so red and swollen even on 2 PPI's that her GI is thinking fundo, but she actually feels better than ever. Just a mild sore throat. I just came back from a family vacation with all of my in-laws and noone inquired about her at all. I think they are avoiding the subject because they think I'm neurotic. I was very upset though because they know I'm struggling with making such a big decision. Has anyone else experienced this? As for myself, I'm wondering why he's so gung ho on surgery all of a sudden. Is it the risk of cancer in the future from chronic laryngeal irritation? Haven't had a chance to talk to him yet, just messages from his nurses. Thanks, Sherry
Jul 24, 2004
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
People who don't understand
Hi Sherry, I dealt with that a lot too with my in-laws. It's incredibly frustrating when anyone doesn't understand, but it's more disheartening when it's your own family! I had to get to the point where I stopped caring what they think. My husband and myself are very different from the rest of his family. We concluded that no matter what we do, they aren't going to see it like us because they are so different, and honestly, so self-centered. We decided not to care what they think, because we had to focus on what was best for our daughter. Frankly, people who are like that don't understand because they haven't experienced a hardship like this themselves. Allowing ourselves to be sidetracked on proving Chelsea's need for surgery to other people added more stress to our plate than we were able to handle. We felt much better when we let that part of it go. If you and your husband ultimately decide to go for the fundo, just let them know when it will be done and leave it at that. If they ask why or give you an attitude, it's up to you to decide whether you feel you owe them an explanation or not. If you don't feel comfortable saying nothing (which I wouldn't feel comfortable saying nothing either), just say something like "her doctor recommended it because of the life-threatening circumstances that are involved in the kind of long-term inflammation she has on her insides" and change the subject. With a statement like that, the focus is on what is inside....in other words, what THEY CAN'T see. Then it's up to them to choose to support you or not. I know it's so sad when they choose not to care, but at least if nothing else you have your husband (I'm making an assumption on this which I hope is true!)and this web site!!!! Good luck..... Carla
Jul 24, 2004
Sherry in PA
Carla
Thanks Carla, and yes, your assumption is right. He does defer to me on all medical decisions, but it's because I have more medical knowledge and he would rather I handle it. He was raised in a loving home but they don't understand medical issues at all and sometimes don't even see the doctor when they need to. I really like your explanation regarding what's on the inside. That exactly addresses why she appears fine- The problem is on the inside...at the moment. They didn't see her this winter when she had a severe sinus infection, her asthma was out of control, she was in constant pain (throat and chest) and she was regurgitating acid 5-6 times a day. I hope we never go through that again. We have several more tests ahead of us including pH probe and EGD on my younger daughter Emily and then we'll see if we're facing one surgery or two. If GERD doesn't turn out to be Emily's problem then she'll be having a tonsillectomy this fall for chronic tonsillitis. Thanks again for your help.
Jul 26, 2004
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Your welcome!
Hope it works out....our families sound a lot alike!!!!
Jul 27, 2004
Wanda, Atlanta
Same here
No one truly understands unless they have been there. My twenty month old looks healthy and is usually a happy, go lucky little guy. People see a normal toddler with a paranoid mother. He takes prilosec, carafate, and zantac for his reflux. For chronic constipation, he takes miralax. My son just started carafate yesterday because his throat is irritated. Our pediatric gi has mentioned fundo surgery to us. We still hope to avoid this. I am having a tough time even thinking about surgery but the gi dr. says that surgery may be our only option since meds aren't working as well. Even our babysitter does not understand about JC's reflux, it has always bothered him more at night than any other time. I explain to family and friends that my son keeps a chronic sore throat that if left untreated can cause serious problems down the road. Sometimes this helps but not always. Good luck!
Jul 28, 2004
Sherry in PA
Wanda
Sorry to hear about your little guy. When Sarah was alittle younger than him my stepfather was in a serious accident and we needed to get my mom to the hospital and I couldn't even get a family member to babysit because she might be "fussy". It's so discouraging. But her trials have made her so stoic that she rarely complains, she's welcome to stay with family members anytime, and they don't understand the "fuss". We are also trying to avoid fundo but it's been recommended for the same reason as yours. If it helps, I typed in a google search "alternatives to surgery for GERD or reflux" and I found some interesting articles on laparoscopic procedures that are less invasive but I don't know who does them or if outcomes have been studied. Ive also read a bout some procedures done along with fundo to reduce adverse side effects. Apparently, they are finding that adverse effects of fundo have more to do with motility disorders than with the surgery. Because of this, I insisted on lots os testing (gastric emptying, manometry etc.)before talking surgery. Good luck with your little one. I hope this helps.
Jul 28, 2004
Wanda, Atlanta
Sherry
Thanks for the info. JC has a GI appointment on Friday. I will do a web search about the alternative procedures before we go. Recently, he has been choking/gagging at meal time and turning a "dusky gray" afterwards. He started taking carafate two days ago which has seemed to help some. He has had two upper gi's and two ph probes. I am also insisting on additional tests prior to even considering surgery. JC has chronic constipation and takes miralax. The miralax has not been working and JC refluxes more when constipated. We are going to talk with the dr again about additional ways to manage the constipation. I am afraid that if has to have the fundo that the constipation would have a negative impact on his recovery and possibly how well the fundo might work. I am a school teacher and I missed more than eighteen days of school last year due JC's reflux. My family has come around since Jacob was a newborn because I now have a neice and nephew who also have reflux. If I learn anything new in my searches or discussions with gi, I will post. Thanks for all the info. I just recently found this website. It is nice to be able to talk with other parents.
Jul 28, 2004
Sherry in PA
choking and constipation
When Sarah was a toddler, before we knew she had GERD, she used to choke on her food a lot, but she had a very good gag reflex so rather than actually choking, she would vomit and clear her airway. We thought this was behavioral because she didn't want to eat, but I now think it was a symptom of delayed gastric emptying. Constipation is another symptom and it does contribute to refluxing. Ask your GI about it. Sarah just had the test last week and the doc hasn't told me what we're going to do yet. I'm dreading hearing the "R" word (Reglan)...Keep us posted after your visit.
Check with your
doctor first!