Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Hi Our daughter Charlotte wil be 5 in April. She has hypotonia, hyperflexibility, developmental delays and long standing constipation/bowel problems. We recently spent 11 days in hospital with her and she had to be hooked up to a drip through her nose and into her stomach and to be flushed out with klear-prep for 8 of those days. Its been some of the worse time of my life. Over the years we have been given so many laxatives and enemas etc etc and these haven't worked. She has anaemia, bloated stomach and is small for her age. She has also has muscle weakness (thin and weak) arms and legs. We are now going back into the hospital on Tuesday for a upper body endoscopy and they will be doing a biopsy for Coeliac Disease. They will also be investigating her lower body and bowel also. They will be also running numerous blood tests including ones for hypothyroidism (I am hypothyroid and I am currently on 575mcg of thyroxine daily and it still has not worked. I was very hypo in pregnancy also). has any one else had experience of Coeliac Disease and the tests etc involved in it? I was told that her previous consultant was one of the countrys leading experts in it and of course she had been tested for it, now they are rushing her in for this biopsy now?. I hope this isn't something they have missed for nearly 5 years!. I had been asking for ages is there any other reason she could be going through all this. Any help much appreciated. Thanks. Emma. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Emma. A quick google of hypotonia/ thyroid showed that the two can often be linked. The lack of development can be linked to your little girl not getting enough thyroid hormone when you were expecting her. And gluten intolerance and or coelic disease can be linked to thyroid problems..... See the common theme here? How are her thyroid antibodies? what level is her TSH? free t3 and free t4? and what is happening to you? that's a very large dose of T4.... why aren't you being given natural thyroid or T3? what has been tested, suggested? amanda x > > Hi Our daughter Charlotte wil be 5 in April. She has hypotonia, hyperflexibility, developmental delays and long standing constipation/bowel problems. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2012 Report Share Posted February 25, 2012 Hi , I have been seen by endo's etc and they will not do anything else for me. I believe since looking into this a bit that perhaps I should of been tested for coeliacs myself etc as the T4 is not working. I'm sorry no one will give me her actual test results but when we were in the hospital I had a quick peep over the doctors shoulder and all her results were one to three points over the normal scale. I only saw them for a couple of seconds! (one said between 15 and 20 and hers said 22?). He said it wasnt worth looking into. Why do they have a scale of these things then if they dont matter. I am going to ask for printo outs of all her test results when we go in on Tuesday. They told me so was tested at birth and then I looked in her red health book to check recently and she wasn't. I am hopeful we will actually get some answers this week. Its been a long few years. Emma From: Galathea <galathea@...>thyroid treatment Sent: Saturday, 25 February 2012, 23:52Subject: Re: Coeliac Disease Emma.A quick google of hypotonia/ thyroid showed that the two can often be linked. The lack of development can be linked to your little girl not getting enough thyroid hormone when you were expecting her. [Ed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Hi Emma Thought this aticle might be of interest to you. It is about Doctor Huw , Consultant Paediatric Gastroenterologist at the University Hospital of Wales, Cardiff, and a member of the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) Coeliac Disease Working Group, opened the discussion with an explanation of ESPGHAN's newly revised criteria for the diagnosis of coeliac disease in children. http://www.coeliacsmatter.com/digestive_conditions_coeliac/cd_causes_general/cd_causes_gen_articles/paediatric_diagnostic_criteria_gazzola_02_12_.html Love Nicola > >> > Hi Our daughter Charlotte wil be 5 in April. She has hypotonia, hyperflexibility, developmental delays and long standing constipation/bowel problems.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Hi Emma, Firstly I'd like to say I am so sorry that your daughter is going through this, I can not begin to imagine how you must be feeling it must be incredibly stressful. I don't really have any insight into what might be her problem but I urge you to insist on copies of blood results. Be an absolute b***h if you have to. I say this as I have had things missed due to bloods not being read correctly! Even though Drs think they are never wrong they can be! and different Drs look at things in different ways. I really hope you get answers for your daughter and for you, sending you massive positive thoughts. x - > Quote Link to comment Share on other sites More sharing options...
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