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  • Fundo complications?

    Hi all, im a new member and im at my wits end, hoping someone can give me some advice.
    From the age of 2 days old my baby boy Ben was bringing up pretty much all the milk he had drank. I was told by my midwife and HV that he was just a sicky baby and not to worry, his abdomen was bloated and he would wriggle around in pain, he cried almost all the time, he had a permanent frown and would sometimes start screaming for no apparent reason, he wouldnt sleep for longer than 2 hours in one go and even then his sllep was not rested due to the squirming and grimacing.
    After numerous trips to the doctors and a few overnight stays in hospital we were told that he was too young to be diagnosed with Pyloric Stenosis and that he probably "just" had reflux, we were given infant Gaviscon and told to come back when Ben was 6 weeks old if he was no better and they may be able to diagnose PS then. I was breastfeeding at the time but by 4 weeks old i had to change him to formula as we were both so tired and it was difficult giving the Gaviscon while breastfeeding.
    We struggled for 5 weeks with all the symptoms, which seemed to be made worse by the Gaviscon, it only helped the vomiting slightly as it thickens the stomach contents which is harder to vomit back up (Ben still managed to vomit as often just not as much in quantity). Watching our baby in this much distress and not being able to do anything to help was heartbreaking!
    We took him back to A&E when he was just over 6 weeks old during a particullarly bad night and were admitted for observation (again!), the following morning i begged a doctor to do something to help my little boy and not just put it down to reflux and send us home on more Gaviscon, i was fed up with my baby boy suffering. We were sent for an ultrasound scan to determine if it was PS but they were unable to see anything due to the amount of air in his stomach, we were told to feed him as much as possible and make sure he kept it down (yeah right!) then they would repeat the scan, anyway the second scan was the same as the first, stomach too full of air to see anything so they sent him for a Barium swallow xrays, which was a nightmare in itself as he kept vomiting back up the Barium, they eventually managed to take some pictures, we were told to go back to the ward and wait for the results. 2 hours later a doctor came in to tell us that he didnt have PS and it was "just" reflux and to go home and continue with the Gaviscon and he would grow out of it by 12 months ( he was only 6 weeks old at his point) I was devastated that Ben would suffer for another 11 months. As we were packing everything up to go home the same doctor came in and said he had reviewed the xrays and saw an abnormality with his stomach and that we had to go straight to a larger hospital near by and see the specialist there, we wernt even allowed to go home first to collect his milk.
    When we got there we were told that he had a twisted stomach which if they didnt operate on could possibly kill him if it didnt untwist again, the surgeon said he would do a Gastropexy and also said he would do a laprascopic fundoplication at the same time to help with the vomiting. He had a NG tube put in to release the air from his stomach and surgery was booked the following morning.
    We were so worried and hadnt heard of any of these problems or operations before, all we wanted was our baby boy to be happy, for his frown to go and hoping to see his first smile. The surgeon said dont worry after the operation he would be fine.
    After the operation we found out by chance that he would never be able to vomit or burp again (which worried me, would he cope drinking fizzy drinks or beer when he was older, what happens if he gets food poisoning or a stomach bug!) We wernt told any of this before the surgery. After 4 days we took him home.
    To cut a long story short (well as short as possible) 10 weeks later, he hasnt vomited since the op but.... he has constant constipation which he takes Lactulose for, he doesnt eat as much as he should, he struggles to drink his bottles, he has terrible flatulance, awful bloating, he still squirms around in pain, strains to pass wind, cries a lot, drools huge amounts, only sleeps a few hours at a time, again unrested and he just doesnt seem happy....i feel like if he could just do a decent burp then he would feel a lot better.
    If i had of known how he would be after the op i dont think we would of gone ahead with the Fundoplication, it seems to have caused even more problems and he may have even grown out of the reflux by now anyway.
    Every time i look at him i feel guilty and helpless
    If anyone could please give me any help or advice i would be extremley grateful.
    Sorry for ranting on but its been 4 months of bottled up frustration with no end in sight....

  • #2
    Welcome!

    I am so sorry that your precious baby has been so sick, but grateful that the doctors finally figured out what the problem was and sent you to doctors who were familiar with it. You have been through the mill, and I don't blame you for feeling that you're at the end of your rope!

    After the operation we found out by chance that he would never be able to vomit or burp again
    This is not true. I am not sure why people say this -- if you heard it from a doctor, I have to wonder what the doctor understands about recovery. I do both of these, and I have had fundoplication surgery. I know other patients who can vomit and burp. The issue is that in some patients it can take time to get the burp/vomit capability back. Meanwhile, please understand that Mother Nature nicely provided us with an alternative way to clean out should we need to expel toxic stuff from our GI systems, and that will kick in, believe me!

    Recovery from a Nissen can take time (though most of the time it takes 3-4 weeks), and it sounds to me like your baby is still recovering. All the symptoms you described are pretty typical. His GI system has been rearranged, and it can take a while for the body to figure out how to work the muscles together. This can make the patient feel pretty miserable.

    If he were an adult, I'd be more comfortable giving you advice. One thing that adult patients can do is drink hot water (like tea without the tea bag) before a meal. That relaxes the esophagus and makes eating easier. It could be that this might work with him, even though his meals are liquid. If hot water is just too unappealing, perhaps some warm milk or juice would achieve the same thing, though I don't have direct experience with this.

    I'm going to assume that after he eats, you keep him upright and burp him even though it doesn't work at this point. You might add to this mix some heat on his chest. That will further relax things and should help make him more comfortable. I will keep my fingers crossed!

    A pediatric message board for GERD used to be available. Not sure if it is still around, but you might try to search for it. Folks here are patients themselves and at least teens, not parents of babies. Also, if there is any chance you can find a pediatric GI specialist, and get a reality check and tips, that would be good. (I'm assuming the doctors you've seen weren't pediatric GI specialists.) Perhaps that doctor could put you in touch with a support group.

    If I think of anything else, I'll post. And I hope others might have some ideas and will come along and post them. I hope this helps, at least a little! Hang in there, and keep us posted on how your baby is doing.

    Comment


    • #3
      Thankyou so much for posting, i was so relieved to read about the burping/vomiting thing, hope it comes back soon, i think he will feel much better if he could have a good burp, thankyou for all your other advice, i will try your tips and see if they help, will keep you up to date

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      • #4
        bensmammy, i understand your worries because i came across forums whereby people who had the operation were not told before had about the permanent complications, impact of quality of life and lifestyle changes etc until after their operation they start feeling the complications such as redos, constant pain and suffering.

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        • #5
          Just thought id post an update.

          We were at the hospital last Tue for Bens post op check up and they want to repeat the Barium xrays to make sure everything is structurally ok. In the meantime we have been prescribed Domperidone as the doc seems to think that Ben may have decreased gut motility following his op and that is what may be causing all the symptoms.

          Does anyone have any experience with Domperidone?

          Thanx in advance

          Comment


          • #6
            Hi,

            I took Domperidone for about two years. It is not approved in the US, but is available through special arrangements with the FDA and also for import from abroad. I think it is a benign medication--it's OTC in Britain. It acts on the chemoreceptor trigger zone to reduce nausea and also in the gut to increase motility. It is superior to metoclopramide (Reglan), which causes tardive dyskinesia if used long term--Domperidone, by contrast, cannot cross the blood-brain barrier.

            Motility problems following Nissen are probably underdiagnosed--when they become symptomatic is when they are confirmed through testing. The cause is presumably vagal nerve damage.

            A gastric emptying study can be done to confirm gastroparesis. Watching and waiting is fine too--my gastroparesis converted to dumping syndrome eventually, so treating the symptoms (Domperidone is good for nausea) is probably ok for the time being--these things take time to resolve.

            The good news is that promising motility drugs are on the horizon. See the website of Tranzyme Pharma.

            Best of luck

            Originally posted by BensMammy View Post
            Just thought id post an update.

            We were at the hospital last Tue for Bens post op check up and they want to repeat the Barium xrays to make sure everything is structurally ok. In the meantime we have been prescribed Domperidone as the doc seems to think that Ben may have decreased gut motility following his op and that is what may be causing all the symptoms.

            Does anyone have any experience with Domperidone?

            Thanx in advance

            Comment

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