Fabricated illness allegation

[Mamalion]

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.

[VD2ER]

You list so many conditions it would make the hardened of parents worry if you can take care of your children?

Did you read the instruction leaflet that accompanied Otinova? Clear, watery fluid from an ear can indicate head trauma. Thunderclap headache can also indicate the same or sinister conditions. I guess he's too young to have a CT or MRI from being unable to keep still for any length of time. What does the GP or medical practitioner say?

I don't understand the criticism of a xray to check for chronic constipation. A negative indication of compactions probably prevented an elevated dose of Laxido. Did you or your GP check the state of her stools? Do they indicate constipation? Did you stop the Laxido on a medical practitioner's recommendation?

If your son doesn't have an ear infection, as you imply, then no level of any antibiotic is going to help.

It would be helpful if you indicated the level of Social Service involvement. If you work with them it is very unlikely they will be taken off you. But your post does indicate to a lay person a number of overbearing medical issues.

Sorry if I come across as negative but your post did instil concerns.

[Mamalion]

Thanks for your reply. It's fairly common to have a bunch of comorbidities with hypermobile Ehlers Danlos and I have successful treatment for my conditions. Like premature ovarian insufficiency is basically just perimenopause under age of 40, but simple HRT sorts out symptoms. Regarding the abdominal x-ray, despite no evidence of impaction we were told repeatedly to do regular disimpaction regimes and keep a long-term maintenance dose of Laxido but without looking at the actual stool itself and exploring whether my child reacts to something in the medication for example. Yes of course I read the instructions of the Otinova spray which/ they're available online too for most meds, which is precisely why I alerted doctors about it and went back to ask for clarification. Obviously without having used it. Because my youngest has a functioning grommet the spray was absolutely 100% counter-indicated because of the risk of damage to the middle and inner ear. Confirmed by the on call ENT who saw us when we returned for clarification. Yes indeed that's why we are concerned that it's not normal for a 3-year-old to start oozing clear watery fluid just from doing normal activities like trampoline, taking a plane, bouncy castle or jumping, or after prolonged coughing. Never ever done any imaging because they don't want to have to put them under general anaesthetic which would be required for MRI but were more than happy to do so for the grommet surgery. Paediatric ENT from a tertiary centre where our GP referred to because of these episodes ordered a CT as a compromise as it's just two minutes but still, it's radiation. Also confirmed immune deficiencies. My youngest seems to combine three different reasons for ear fluids, frequent infection due to proven immune deficiencies, post head trauma fluid loss after normal activities, and confirmed sterile inflammation. The latter under control now since daily cetirizine and famotidine. Significant reduction of chronic ear inflammation, no more sterile fluid build up especially behind the right ear drum where there's no more grommet. Yet the slightest bump on the head causes clear watery fluid loss. Never enough for sampling sufficiently for a beta-2-transferrin test. No idea what stage of child services enquiry we're at and according to a charity my husband called today, they seem to have jumped several stages, committed some real irregularities in procedures with that initial meeting on Tuesday by giving a false reason for meeting and with whom. Then caused significant distress with no right to representation and support but let us go home with our youngest in such a state?! If they were so concerned that they would jump several stages of the procedure, surely they would have turned up at home unannounced and not let us leave the paediatric ward where the initial meeting was held with our child. All very strange and unusual.