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Another update on my little boy

Posted , 4 users are following.

Peppapig123
Peppapig123

After my 8yr old had calprotectin test which showed slightly high levels with inflammation, he was asked to repeat the test, well the 2 nd test came back normal levels. So know pead is going back to the 1st theory of bowel overflow and said its just a blip. When I saw pead in Nov who said the test will come back all clear.but I have not told him I did the basic food intolence test on igg antibodies which came back positive result. Which as I'm aware that tells me his body is in fighting mode. This was done around the same time as the 1st stool test. So it's highly unlikely the 1st test was a false positive. He has know given my boy stronger laxatives which. The pead has it in his head that his constipated all the time but my boy is only constipated twice a month and I'm realising bread don't help.90 percent of the time he just does a pile of mush. But recently after taking this laxative he had to have a course of antibiotics. Well  after about a week the antibiotics stopped we saw some changes. Such as mood swings had gone. bad breath gone. Always eating now and saying hungry all the time. But the biggest thing we noticed his speech is so much clearer as he has speech delay.really thought were on a rd to recovery until a couple of weeks later smelly poo , bad breath again and mood swings are back. The pead also kept telling me on his stools that's just the way he is and he got to live with it. so yes I'm still banging my head against a brick wall in getting him sorted. 

0 likes, 10 replies

10 Replies

  • philippa61759
    philippa61759 Peppapig123

    Posted

    Ask about IBS.  Food intolerance can go with Irritable Bowel, especially intolerance to wheat as well as loose stools/diarrhoea and constipation and incomplete bowel moments.  Does your little boy get stomach pain and nausea?  Has he been through any stressful events recently? These are the symptoms to look out for in IBS.

    Has as the doctor tested for celiac and h pylori and suggested an ultrasound/colonoscopy?  What other allergy tests have been done?  If all these investigations are negative, IBS can be diagnosed.  Try also eliminating wheat from his diet and see if symptoms improve.

    • Peppapig123
      Peppapig123 philippa61759

      Posted

      Was tested for coeliac which came back negative. He is lactose intolerant. 

      Would not know if he feels sick or in pain as he has servere speech delay and very delayed expressive language. So he gets very stressed most days through frustration. 

      Pead will not offer any test. As I mentioned to him no one has ever done any test so he done the blood and stool test that was when he said they are going to come back clear. I was quite angry at the time as we had not left the room yet for my son to do the test. But the stool test showed inflammation. He also suffers allergy to the spring sun in April and also suffers eye allergies which is not pollen related. If I still get no answers might have to ask for second opinion but worried I would see someone else but in same department. 

  • philippa61759
    philippa61759 Peppapig123

    Posted

    Ask to see a different specialist.  It doesn't matter if they are in the same department.  Seeing someone new will give you the chance of getting a fresh opinion on your son's condition.  I saw eight doctors before getting diagnosed with IBS. Only one recognised my symptoms, but each one had different ideas.

    If you are still getting nowhere, make a formal complaint about the service you are getting. Say that as your son has disabilities, they are in direct contravention with the Diabilities Act if no help is forthcoming. Threaten to go private and ask if they had a child in this position, would they accept such poor service.  You could also suggest that you are happy to go to a national newspaper about your concerns.  I have had to do this with incompetent officials and I got help immediately.  With the NHS in the mess it's in, they will not want any more bad publicity.  You could also have a meeting with the consultant that you are currently seeing to express your dissatisfaction.

    This approach may sound extreme, but sometimes it is the only way to get decent service in this country.

    • Peppapig123
      Peppapig123 philippa61759

      Posted

      Thank you for all your ideas, as so fed up as he been like this since birth and still 8 yrs on no one listens in the health service 
    • xpandorax
      xpandorax philippa61759

      Posted

      I agree and some great points/info for op, unfortunately nhs don't even know how to make sure one has the foundationS for healthy digestion

      I did try and explain to someone on here earlier but i guess my point was totally missunderstood, i said laws need changing to protect all of us

      nurses, doctors etc are trained in medicine not health..so for the ones labled with ibs etc or got to live with it lables, it's bad

      some may need certain private tests or even certain supplementsx

    • philippa61759
      philippa61759 Peppapig123

      Posted

      I really feel for you; it must be a nightmare.  I know MPs are not always good, but you could try contacting yours.  Sometimes, this makes all the difference.
    • philippa61759
      philippa61759 xpandorax

      Posted

      The NHS is sadly failing many of us and needs a huge overhaul.  However, we need a very creative Health Secretary to implement proper reforms.
  • Missjosefina
    Missjosefina Peppapig123

    Posted

    Hi Peppa

    Did you say you'd had allergy tests performed yet? If not, ask your Gp or...I hate to suggest it because it SHOULD be available to everyone on NHS...pay for an immediate test privately.

    I've heard some people find that they have an allergy or intolerance to nickel. One of my work colleagues explained, she's suffered for years with digestive issues. Years ago, they did allergy tests and found she was allergic to nickel. But she was told to not wear nickel plates watches or earrings. NO ONE figured out that an allergy to nickel means any form of nickel. And it's found a lot in food...not least in some canned goods.

    It's worth identifying exactly what he's allergic to as this could help you steer him away from it and help him with his quality of life xxx

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