I'm new to posting but not to reading the forum :)
My poor daughter has had a really rough time the last 6 months, but we are no closer to finding out what is wrong with her. i have done so much reading, and I have my own ideas, but wondered if anyone here may have a different angle on this, so here goes....
My daughter is about to turn 12. She has always been fit, active and is tall for her age (1.61m). She had a tonsillectomy aged 2 and has had recurring ear infections.
About 6 months ago I got a call from school because she had a dizzy spell and almost passed out. She told me this happened several times. She also required reading glasses following an eye test at this time. I had her blood glucose level checked and it was fine. GP tested her BP and she had orthostatic hypotension. So he did an ECG which showed a right bundle branch block but he said it was nothing to worry about.
Fast-forward to December last year. At the beginning of December she had a 3-day virus with a very high temp; she had also had a nasty, non-productive chesty cough for about two months at this point. On the 11th December she collapsed from tiredness at home. A couple of days later she was running a temp and complaining of chest pain. i took her to the GP who diagnosed bronchitis and put her on antibiotics (ABs). However, 5 days later she was not getting better and had a bad headache as well. Took her back and he said she had sinusitis too. Changed the AB and she was better within 3 days. This was just before Christmas.
During the second week of January she began to feel unwell again, with bad headaches. I took her to a different GP who said the sinusitis was probably back and put her back on the AB. This did not do anything to help, and by now she was experiencing regular vertigo too, and the chronic cough was still troublesome. She also developed a thoracic rash. Back to the original GP, where she did spirometry, which was woeful. She then got put on Symbicort (budesonide/eformoterol) inhaler. GP was ready to send her to have her sinuses cleaned out at this point, so sent us to see an ENT that day. But the ENT reckoned it was her ears that were causing the problems (!) so changed the AB and put her on Nasonex nasal spray. All this time she also had a low-grade fever.
Two days after this she began to feel weak in her legs. She ended up not being able to get out of a chair and could not balance properly. We took her to A&E but they said there was nothing wrong with her and told us to take her on holiday (!). Our GP sent her for an MRI of the sinuses which showed significant thickening & chronic sinus disease. Over the next 5 days we had to move her mattress upstairs with us because she could not get up stairs. Both of us had to hold her up to walk - it made me cry to see her like that! We reached a point where if she needed the loo in the night she could not get out of bed and would have soiled herself so we took her to hospital again, where she was admitted for 9 days. An ENT put a camera up her nose and found pus collections and sinus thickening. Another doctor stopped all her meds and told us it was psychological. He was a horrible, horrible man, for various other reasons which I shan't go into.
Over the next two days her respiratory condition deteriorated and she started to wheeze again. A second doctor put her back on the inhaler and onto a regular pain relief schedule. My daughter had a really sore neck, right shoulder, hips, chest and legs. She was in hospital for 9 days having physiotherapy learning how to walk again.
The bloods done at the hospital only showed that she had had eppstein-barr virus in the past, low sodium (134mmol/L) and raised legionella (1:128) which apparently only 2% of healthy people have a level above 1:64, but nobody at the hospital even told me about the raised legionella - the GP told me a couple of weeks ago. She was tested for all sorts of things - CBP/FBC, liver function, thyroid function, ESR, RA, CPK, mono, Vit B12 deficiency, mosquito-borne viruses.
Since coming out of hospital the physio has been ongoing but she recovered quite well, although never regaining full muscle strength. However I received a call from the school nurse last week because she had a minor asthma attack following running. Following another spirometry a couple of days ago she has been put on an eformoterol inhaler for pre-exercise, but she has had to use it a couple of times when feeling tight in the chest. She has begun to go downhill again, with a sore lower back, hips, ribs, left knee and right achilles tendonitis (which has been present since early January), tightness in her chest, and has had the past couple of days off school. She says she feels weak in her legs again and is finding the stairs difficult to negotiate. I feel like she is on the slippery slope downwards again......
The blood tests she had last week showed low immunoglobulins (22g/L; normal range 24-40g/L) so she has had protein electrophoresis performed but we don't have the results yet.
I have some potential theories on what is going on but wondered if others here had any suggestions? If you have read this far, thankyou so much as I know this is a really long one, but I am so concerned at seeing my healthy daughter turn into a shadow of her former self.:(