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Fabricated illness allegation

Mamalion
Posts: 1
Joined: Thu Aug 20, 2026 10:44 am

Fabricated illness allegation

Unread post by Mamalion » Thu Aug 20, 2026 1:12 pm

I am very vulnerable at the moment because I have several diagnosed conditions for which I get treatment and which are genetic (hypermobile Ehlers Danlos Syndrom, dysautonomia, postural orthostatic tachycardia syndrome, mast cell activation syndrome, premature ovarian insufficiency and ADHD). My children are 3 and 5 and each has struggled for about two years with their own health problems where standard NHS treatment just isn't working or actively causing harm such as prescribing Otinova spray for my 3 year old fully knowing that he has an active grommet. This could have caused severe pain, chemical burns and permanent hearing loss. He has immune deficiencies like everyone in my family, documented with lab results and has had dozens of infections in nearly two years, mainly upper airway and ears. He also reacts with allergy type reactions but these have hugely improved since using standard histamine blockers. He also suffers regularly from spontaneous clear watery fluid loss from one ear, the nose or the throat after physical exercise like trampoline, acrobatics or bouncy castle or after a flight. Because he keeps getting labelled as chronic ear infections, no investigation into why he gets thunderclap headaches from head trauma has ever been made. My 5 year old daughter has been treated for also nearly two years for chronic constipation with endless rounds of laxatives and even made to have two X rays which didn't actually show impaction at all but put her unnecessarily under radiation. We recently stopped the laxido because she was in too much pain from it and begging to stop, as it clearly caused her cramps and inflammation. She's finally feeling better. Because of my son's nursery often failing to tell us about any ear fluids until pick up in the evening, we could often not get him checked elsewhere but the out of hours at the hospital or A&E. Because he also had swabs of the ear which showed no infection and sometimes it did, and often antibiotics not helping anymore and having to step up to second line ones, we asked for second opinion and referral to Addenbrooke's. I am now subject to a child protection order and accused of fabricating illness. My mother and my twin have the same diagnosis as I, but as they are based in Germany, it's fairly easy to dismiss this as they are not on NHS records. I am petrified now and fully aware how high the risks are of child services taking children away from families with rare, complex or poorly understood conditions. Please help me.

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