Rose, I'm so sorry your daughter has been so sick. It can be so frustrating to not have any answers. I had a bad case of mono when I was 18 and was really never the same. A few years later I got a diagnosis of CFS. It wouldn't hurt to get some bloodwork rechecked again if the doctor hasn't, especially since she is having new symptoms. SOmetimes it takes a while before anything shows up in bloodwork and unfortunately sometimes it never does. I have also read that it can take some people a long long time to recover from mono (sometimes up to a year). Has the doctor given her anything to help with any of her symptoms? Another option would be to ask for referals to specialists if you haven't already.
My 8 yr old son got mono last year and it eventually progressed into some type of autoimmine or inflammatory disease - the doctors are still working on a diagnosis. It's terrible to see your child so sick.
Take care and keep us updated.
Diagnosis: Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Relafen 1000mg; tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain
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