prolapsing hiatal hernia??

[Anonymous]

Anyone have any experience with this? My little Andy had his second endoscopy today and just from the scoping the doc found a 2cm hiatal hernia labelled as small, sliding and prolapsing.

He said surgeons won’t touch it and that it is to be treated medically with just keeping the acids neutralized..aka keep on the prevacid. We get the results of the biopsy on monday so that will tell us more if anything about the area surrounding his esophagus as well as intestine.

He goes back on erythromycin to tackle the vomiting…aka we haven’t done the emptying scan but based on his history of vomiting we need to move the food down faster so it doesn’t have a chance to go back up through a prolapsing hernia.

Anyone…anyone at all…have you gone through this with your babe or had a friend tell you about this.

The doc said that sometimes they get better(anyone ever have this happen) and sometimes they get worse(can anyone tell me if this has happened to you or anyone you know and how long it took to go from not so great to woah we need surgery?)

Thanks for reading my rambling…my head is going to explode because helping a 2 yr old out of anesthesia was a lot harder for me than helping the same boy out of anethesia when he was 10 months old and had the first endoscopy.

[Anonymous]

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.

[Anonymous]

Anne…bless you for taking the time to write this all out!

I hear ya on the food allergies/intolerances not being reliably detected on tests. My little guy has been skin tested and RAST tested 2 times(once around 1st birthday and once at second birthday). Only an egg allergy showed up by skin test at first year. We have been gluten free, casein free, egg free, milk free since about week 3 of his life(when we failed at breastfeeding). He was on compounded prilosec and then later erythromycin add when he went downhill(started vomiting out of the blue) at 9 months old.

He seemed to be doing really well by 14 months old. So well that he had already outgrown the max prilosec dose allowed and i didn’t hear the glurping and saw the arching completely disappear. We had a lovely 6 months(well except all the night waking for food that i did not discourage because i wanted to maintain his weight at 50%).

Then at 20 months he starts screaming at night, pummeling me etc. We agree that it is night time break through reflux and start prevacid capsules this time around. BUT the one thing that keeps nagging me is the way he vomits up undigested food 2 hrs after eating. Like almost 2-2.5 hrs on the dot after eating. And it isn’t even every meal or every day. Maybe just like a few times a week then one week nothing and then the following week just one time. I truly cannot pinpoint it to one food. He is still milk free and egg free so by default that would be casein free i believe but he tolerates gluten really well. Loves his rice and never vomits anywhere near the days he has rice.

Our docs here don’t do any other allergy tests other than IgE mediated ones and i have read that delayed allergic reactions are mediated by other Ig mechanisms. Andy did see a chiropractor for about 10 months and it was a lovely temporary fix. I may call up the chiro and just ask but i am honestly not so inclined to take him. I think i may start asking about homeopaths this time.

The probiotics are sitting in the fridge and i have used em for the 2 ear infections he has had but not any other time..maybe i need to do that and just see how it goes.

I wonder if the biopsy will show esinophils this time around. It didn’t when he had his first endoscopy.

Thank you for sharing the link. I will go read and maybe ask questions.

Right now we are looking at dosing my boy with claritin and nasonex since we recently found out he is allergic to grass and what do you know grass pollen just started flying around these parts around the same time his night time congestion started. Then the prevacid. And erythromycin to be added soon.

I think i better find a homeopath soon to see if there is any way we can at least get rid of the environmental allergy meds and whack at that congestion. Okay i am rambling now but i will go to that site!

Oh whoops forgot to answer a few of your questions i think…the biggest problem right now is the vomiting his food 2 hrs after eating..and that it doesn’t occur all the time but often enough and the fact that the food is not digested, just mashed from his molars make me take serious pause. I think the prevacid dose 25 mg of capsule is fine. He still glurps and isn’t too thrilled when he glurps but definitely doesn’t scream in pain like he used to when he was little. At night it is a lot of tossing and turning, calling out for mommy etc. I am not sure if that just the attachment or if that is more the trouble with breathing well due to congestion OR if it may be food intolerances that we haven’t been able to identify. He doesn’t have juices, no citrus, no chocolate(since he is milk free). No eggs yet since we have not done the in hospital egg challenge. That will be scheduled soon.

Andy recently surprised us with a wonderful jump in weight. From 50% percentile to 70%. Between 18-24 months he did this and well that is why at 20 months when the night time screaming started i was in denial about the reflux. I thought..hey he “outgrew” this at 14 months and he is doing well even with all the food restrictions..it can’t be reflux. I was wrong.

Oh and he started walking at 10 months. I didn’t notice a huge difference in his night waking or discomfort from reflux. When he started the erythromycin it seemed to help but again i couldn’t emphatically say YES that was it because i kept thinking that well he must be outgrowing the reflux especially the way he was doing so well at 13-14 months when he had outgrown the max dose of the compounded prilosec. And the 6 months that followed didn’t even make me think that the erythromycin was the key because he didn’t vomit. It wasn’t until month 20 that problems started up again.

Patty M2006-4-1 4:57:0

[Anonymous]

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.

[Anonymous]

christine,

where is the little gerdlings site. i remember getting an email from admin wayyy back when but since i suck at posting i figured i wouldn’t get to the min posts needed to be able to get in.

it did require a min amount of posts, right? maybe i remembered wrong

[Anonymous]

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.

[Anonymous]

I don’t know the address but if you go into Laura’s intro (which she’s probably posted for one of the newcomers) and scroll all the way near the bottom, the link is there.

[Author]

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