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Help son with reflux but i think more

LisaLewis79LisaLewis79 Member Posts: 2 Listener
My son was diagnosed with reglux at 6 weeks, at 4 months started being ng fed, at 1 year had a fundo and a peg fitted. Hes now 17 months hes still on all reflux meds, still wont eat. Has black poos regularly is uncomfortable all tge time, drinks bottles of juice like its going out of fashion this is the onky thing he drinks. Could it be something else?? 

Replies

  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Welcome to the community @LisaLewis79, great to have you here.

    I'm sorry to hear this, I imagine this is also stressful for you. Is he under a paediatrician?

    I personally don't know anything about this, but I hope others will get back to you soon. :) 
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  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,953

    Scope community team

    Hi @LisaLewis79 and welcome to the community. :)

    Unfortunately we're not medically trained so couldn't say whether it might be something, but it's definitely a discussion you should have with his paediatrician. 

    I just wanted to say I know a little bit about how you feel. My youngest (now 16 months) struggled badly with reflux. His poos were black and he was always uncomfortable and very unsettled, and there was a lot of talk of him being NG fed as he wasn't gaining weight. I can really empathise with some of the frustration and worry you must be feeling. We were really fortunate in that it was identified quite early that he was allergic to dairy and most of his problems had come from not being able to digest it (which was resulting in reflux, poor weight gain and immense discomfort.)

    Have they looked at potential triggers for your son? I hope you manage to get some answers soon. If you're not making much progress with his current paediatrician, please remember it's your right to request a second opinion. 

    Best of luck and please keep in touch and let us know how you get on. 
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  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @LisaLewis79 welcome to the community. It must be an awful lot for you to deal with. The community and Scope team are here if you need any support.
  • LisaLewis79LisaLewis79 Member Posts: 2 Listener
    Hi all thankyou for your replys. He is under a peadiatriction and surgeon. He is allergic to cmp and soya. He is on alfamino milk and has nothing with dairy or soya in. We are seeing tge gastro doctor tomorrow abd the surgeons have said they are considering cameras but everything takes so long. Wish i coukd have a appointment with them all in the same room together. 
  • April2018momApril2018mom Posts: 2,869 Member
    edited November 2019
    Hello @LisaLewis79

    What do the doctors say? Ask them to advise you. Is he working with a speech therapist or not? They can assist with feeding issues. Is he constipated? Avoid changing his diet to see if this helps him until you have gotten advice from a real doctor.
    Get a referral to a dietitian, speech therapy and also a feeding disorder clinic pronto as well. How long has this been happening for? Do not act on advice from your pediatrician alone. Insist on referrals to the right specialists. You deserve good answers to your questions.
    Request appointments. Make a list of questions to ask. Does he seem willing to eat or drink new things? Have any tests been done?
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,953

    Scope community team

    Hi @LisaLewis79. It sounds like you have all the right people involved, but I can completely relate to wishing you could get all the different specialists into the same room, at the same time. The communication between different departments isn't always what it should be.
    We often found they were contradicting one another and it sometimes felt like they were 'passing the buck' and nobody fancied taking responsibility. 

    How did you get on today with the gastro doctor?
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