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My 9 year old son has gastroparesis

Posted , 8 users are following.

torrie01484
torrie01484

So I kind of wanted a little advise on this matter my son has tried medication treatment with no results he has constant pain in his stomach including nausea and sometimes vomiting. He only ways 49 to 50 pounds and he is Getting skinner looking very pain dark circles under eyes. He is going to the doc again tomorrow and I was going to ask about trying a feeding tube to see if that changing anything. He has no energy and we have tried all of our other option I just want others options if I am going in the right direction or not very lost he has been dealing with this for two years

0 likes, 16 replies

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  • clarke92783
    clarke92783 torrie01484

    Posted

    Please have him checked for anxiety I know it may be kinda out of the norm. But young children are good about hiding there feelings. It takes a few mintues and they can advise from there a plan. The stomach works as a second nervous system so any little bit of anxiety will cause that kinda stuff to flare up.

    Just my thoughts.

    • torrie01484
      torrie01484 clarke92783

      Posted

      He has evaluated for anxiety and depression and has both he also has fibromyalgia and can barely walk at time we have done pain management and everything also nothing has helped the pain and everything in his stomach has never went away he is very weak and he has very little skin color just pale with black circles around his eyes
    • torrie01484
      torrie01484

      Posted

      Oh ya and he also has cronhs disease with no luck on any treatment have tried everything for that
  • clarke92783
    clarke92783 torrie01484

    Posted

    If you don't mind me asking what medication is he taking for the anxiety and depression and well as for his stomach.

    Is he complaing of a sore stomach or gas and acid build up.

    • torrie01484
      torrie01484 clarke92783

      Posted

      All he is on no way is gabapentin and it's extreme pain to where he crys never has a problem with gas or acid build up

    • clarke92783
      clarke92783 torrie01484

      Posted

      I'm so sorry to hear that. Someone that young should be out playing not having to worrie about his health. For the extreme pain I was going through I used tramacet.It worked wonders when morphin was not helping

    • torrie01484
      torrie01484 clarke92783

      Posted

      THE main problem is they won't give him anything for the pain cause of all his other problem my main concern is if I should try a feeding tube for now to see if we can get him to gain some weight and see how that makes him feel what are your thoughts on that

    • torrie01484
      torrie01484 clarke92783

      Posted

      Another problem we have is we don't have specialist in Spokane where we live for children. So we often have to travel to Seattle to see his doctors it's sucks bad

    • clarke92783
      clarke92783 torrie01484

      Posted

      I am one that do what ever it take me to provide the best possible care, and if a feeding tube is your Option than that migh be what you need to do. I would also recoomed trying boost 3 times a day with the meals that he can get. There is a few flavors and I am sure you could get him to

      Try them.That might be a way to get some weight on with out a feeding tube

    • torrie01484
      torrie01484 clarke92783

      Posted

      We have tried those a d they don't stay down he just throws it up or it makes pain worse we now don't give him dairy at all to see if that changed anything and not a lot but things stay down a little better but he does not have much food intake at all he feels full when I called the doc the other day the nurse said they can do a temp tube that goes in his nose all the way into the intestine to by pass the stomach all together I wondering if it is at least worth a try at this point

    • clarke92783
      clarke92783 torrie01484

      Posted

      I would say that's your best bet, good luck. Please keep me In in touch

      Love to hear how you make out

  • sanya11314
    sanya11314 torrie01484

    Posted

    My daughter has gastroparesis, but strong bouts only for months and settling again, so can keep up with weight, and not only calories, but also nutrition. 

    Gastroparesis people run into malnutrition easily, which is a catch 22. We did give her weekly VitB skin patches to avoid oral route for example.

    (Gastroparesis is not a psychological disorder as anxiety gets blamed for far too much for our liking. It might be for the one or other 'belly pain' child, but measured gastroparesis is a different story. My child has EDS, a genetic connective tissue disorder, hence her stomach, intestine can't work properly even everything is 'normal' from muscles to brain due to glue - that is needed for function- being crap. One gets depressive -no doubt- because of being in so much discomfort, pain, malnutrition and isolation. Not the other way round. Mood needs to be addressed though, but my daughter has had enough of psychologists, anti-depression pills and mindfulness apps to listen daily....worth a trial, but not the holy Grail for everyone)

    - Glucose/diabetes has been checked as a basis test as that can cause gastroparesis (due to small blood vessel effect)?

    - There are autoimmune diseases causing gastroparesis, too.

    - There is the physical SMA (compression of duodenum by artery) that can cause gastroparesis.

    Gastroparesis is 'just' a symptom that can be measured, like fever (I like to compare it to), the underlaying issue is not said by knowing the gastric emptying was delayed. There is a vast field out there of reasons. For the moment, one wants to tackle the symptoms so or so.

    Some are idiopathic, unknown, but I guess that is more, because not everything is known yet. Like EDS: took a long time to get noticed to the GI impact even oh so logic, but dear me very little docs do know..... on the other hand: no cure for EDS.

    When we have bad months:

    MEDICATIONS

    - Domperidone was trialed (had no success)

    - Metoclopramide would be another motility drug for stomach.

    - Ondansetrone (wavers under tounge) to bring down nausea

    If he suffered constipation, it's vital to have a soft stool

    (not fiber increase please automatically, that can constipate more),

    we went from Movicol to actually 'calm' magnesium citrate, that helps better.

    Also probiotics.

    a medication for colonic motility is prucalopride.

    --> problem: how to administer if vomiting is an issue, been there too.

    We only get liquid low fiber food down when gastroparesis hits badly:

    icy poles,

    sometimes self frozen self made juices (bought a juicer! a heavenly thing),

    electrolyte solution frozen icy poles,

    'Ensure' and other liquid milk based foods for calories and nutrition.

    If we were in USA would have trialed 'liquid hope'. 

    Very often offered, not every 4 hours, I run hourly with an icy pole or some sort of drink (and discart it very quickly as well, you don't want Ensure to stand around for hours) and doesn't matter if not finished.

    Low fiber and liquid diet seems to get better through stomach,

    there are medicines to be trialed.

    Some get a botox injection in pylorus when a gastroscopy is done with a 50:50 success rate to have food faster through.

    Search other internet platforms (fb, inspire) with gastroparesis sufferers, they can give good advice where to go to locally.

    All the best!!!!!

     

    • torrie01484
      torrie01484 sanya11314

      Posted

      I have tried all the medication and even a liquid diet nothing has worked he also has Crohn's disease

    • RVF
      RVF torrie01484

      Posted

      Look at AGMD .......a gut motility website with useful forums.

      Othere gut motility sites around too.

      I'm in UK and those motility drugs are withdrawn now so I'm really struggling though they are hit and miss.

      Prucalopride had side effects and still had to use Movicol

      Good luck

    • sanya11314
      sanya11314 torrie01484

      Posted

      OMG, poor boy, poor you!

      How very stressful.

      So placing a tube passed the stomach straight into duodenum will be trialed?

      Crohn's alone is already a huge, huge pain factor. Hope he can be helped!!!!!!!

      There are really good forums for gastroparesis to avoid further hit and miss with docs (that just stress one from getting there, financially, time) and trials.

      All all the best!!!

      We survived on sugary icy poles that are oh so bad for one....but couldn't have gotten anything else in. It's so hard to watch and being helpless.

      Really hoping you get help, improvement soon!!!

      Take good care!

      It's very draining for you too! Take care!

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