prolapsing hiatal hernia??

Wow, hi there. My son had his first endoscopy at 10 months and they also found a hiatal hernia. They didn’t give us measurements, or if they did, it’s completely left my mind (like a lot of things! ha)….but here is our scenario. I’ll warn you, I type fast and I write loooong posts! (You may want to read this in installments!LOL)

Lucas spit up constantly…until at about 8 mos I cut all dairy and soy (I was bfeeding) and we realized then that he had mspi and multiple protein intolerances, and some spitting stopped. I had cut all possible classic reflux foods when he was three months old, like tomatoes, coffee, soft drinks, citrus, you name it, I wasn’t eating it. He started having horrendous nights around 6 mos of age. Waking screaming every 45 minutes. We were on zantac and finally a ppi and the ppi wasn’t so effective, finally we got onto zegerid which helped daytimes become much better. At 10 mos, they did ph probe and found he refluxed 232 times in 24 hours. Our ped gi said it averaged about once every ten minutes, day and night. The endo showed a hiatal hernia, which they explained meant his reflux was uncontrollable through meds and that was why even with dietary changes and high doses of zegerid that he was still having such a hard time during the night. At this point, he had NOT yet cut a single tooth. Teething became the new nightmare soon after the testing was over. Anyways, days were usually good, unless teething, and nights continued to be horrible, waking around every two hours arching and screaming. The ped gi said this is normal for our situation, he was distracted from his pain and upright a large part of the day, but nights were a different story. The ped gi said his numbers, like percentage of time spent refluxing during hte ph probe and the number of times refluxed during ph probe were borderline, were enough to warrant surgery, but it was the percentage that wasn’t exactly as high as usual to automatically do surgery (he refluxed 7.5% of the time and the ped gi said anything over 10% is usually not questioned as a surgery candidate). And he had always gained weight well, so this was a factor going against surgery.

They sent us to a surgeon. Anyway the surgeon said since he wasn’t walking yet, to wait until he was walking and that this surgery was so serious you don’t want it done unless it is your ABSOLUTE LAST FINAL FINAL option. My dh especially went into this meeting thinking….well, so they just do the surgery and it’s all fixed, right….simple reasoning, but the doc didn’t describe it that way at all. And Lucas was quite large–his little butterball looks didn’t help us at all with docs– failure to thrive had never been a problem for us.

Anyway, he began walking around 14.5 mos and the night time wakings seemed to lessen a bit. When he teethed, about once a month, it was complete he**…if your little one is two, then you likely know what I mean. The surgeon told us taht around the time of walking, the stomach shifts to the side, instead of being directly in a straight line under the esophagus. He also said that as they become upright, the pressure in the abdominal cavity adn the pressure in the chest cavity work such that it helps keep things going down. He said to call and come back after Lucas began walking if things were still horrible. At this point, even with lots of nightwakings, dh and I feel we should keep trying to tough it out cause the surgery risks sound very serious and Lucas’ daytimes are usually so good. They told us the surgery has a 90% success rate, but the 10% that don’t go well usually end up in second, third and sometimes more surgeries AFTER the first surgery. The fundo is permanently altering their digestive system….

There’s another mom on this board (kevieb, Christine) whose baby had the fundo at 10 mos I think, and she had a wonderful experience, and it really cured the baby’s reflux. Her daughter was failure to thrive though, (or very close to it) and her percentage of time spent actively refluxing was over 20%, while Lucas’ was only 7.5%. My son refluxed often, but it seemed that it quickly went up and came back down. My son is also very happy during the day now, unless it’s our week of teething that month.

I recently decided to try removing wheat and gluten from our diet (I’m still nursing, mostly cause it’s the only thing that helps during these horrible teething times) and this has REALLY helped our night wakings situation. I am now suspecting that Lucas’ reflux is more strongly influenced by food intolerances or allergies that we originally suspected. It was like once we found the hiatal hernia, everything was blamed on the hernia– which was entirely plausible, YET, it kept me from investigating further into food issues. This idea is something to consider, don’t let the hiatal hernia just take the blame for everything if you suspect maybe something further is going on.

Our ped gi says he feels like he himself (the ped gi, not Lucas) probably has a mild hiatal hernia himself and that it’s sometimes bad, sometimes good nad sometimes in between. This is something our sons will deal with for the rest of their lives and it could really make things not so fun at times. I am waiting for my son (he’s 18 mos now and talking a lot) to be able to explain to me what hurts and how it feels as a next step in working towards a more complete diagnosis of what’s going on. We have an appt with an allergist for testing of that as well, although my ped warned me that allergy tests on kids this young are “notoriously unreliable” to directly quote him.

My questions for you are: what is he like during the day and night? what are your biggest issues and problems right now? Did things alter or change at all when he began walking or within a month or two of walking a lot? Are his meds effective at all? have you looked into allergies or food intolerances at all? Are there other medical factors at play for him?

I found a great web-site that has a lot of SERIOUSLY sick children with SERIOUS levels of GERD, many of them have additional other problems as well nad many of them have had fundos. It was scary to read a lot of posts there, but informative as well. Some of those moms might be able to answer your questions, too. That site is:

http://www.parent-2-parent.com/forum/showthread.php?t=22661

Actually this link above is for a post on that site that they ask you to read first, before posting yourself. It might be useful to you. I posted there for a while during the time we were talking about surgery.

I know for me, I was completely at a loss after they refused surgery. After hearing about the surgery, I was glad they were telling us to wait, but it was like hearing them say, “Well, there’s nothing we can do, you just need to suffer through, we are at the end of the road for treatment of your son.” And at the time I felt we had already suffered so much with the no sleeping thing. After that, I took Lucas to our trusted family chiropractor who recommended aloe vera juice, and probiotics. Have you heard of or tried either of these? Also, she said that although she didn’t specialize in hiatal hernias, she knows that there are chiropractors who do. I haven’t pursued that angle any further, because I have a hard time trusting my baby with any other chiropractor, and dh isn’t really on-board to search for chiropractors…. Anyway, those are avenues away from western medicine if you are open to those ideas, or if you are realizing that you are also at the end of their treatment road in terms of what they can do for your son.

I’m sorry this is so long, but there aren’t many of us on the boards at infant reflux who got the hiatal hernia diagnosis….and then also didn’t do surgery, so I’m just trying to think of everything they told us and to share our story in case anything sounds familiar or rings bells for you. I really hope your son is feeling better soon, I can’t imagine doing the endo now at this older age. Let us know how things are going.

sylvia’s hiatal hernia was pretty good sized—-there is a picture of it on the little gerdlings picture site. sylvia was failure to thrive, she was anemic, and her esophagus was ulcerated. she was refluxing almost 25% of the time overall. she refluxed more upright (approx 29%) than when she was lying down (approx 19%) she had 97 episodes of reflux, but she had prolonged episodes, which are more of a problem—-one lasted 44 minutes when she was asleep. sylvia’s fundo and hiatal hernia repair was done just before she turned 10 months old. it instantly stopped her reflux, but she continued to be failure to thrive for the next year. after surgery she got esophageal thrush (took us 5 months to figure out) then got sick, and at some point develped obstructive sleep apnea and an inguinal hernia. her tonsils and adenoids were removed and the hernia repaired right after she turned two, and she has done wonderfully since then. she is now at about the 17% for weight. sylvia has had no complications from her fundo. i think the children with other physical problems are the ones that would be more likely to have complications.

my twins both have reflux. kassie’s is really bad. she has breakthrough reflux even on 30mgs of prevacid. i would like to have a fundo done on her. the meds are so expensive and she will be on them for the rest of her life, most likely. my reflux has really been bothering me lately—-i am going to have to break down and go see a gi myself.

no min number of posts unless something has changed. i think you just have to sign up—–i’ll see if i can find the link to the site.