Hi, I am so scared about my son and it seems no one wants to listen unless there is a confirmed diagnosis, which we don’t have currently.
He is 11 and has complex needs so well used to the long time that doctors take to listen to concerns. About 5 weeks ago he became very unwell with tics that have just been diagnosed as PANDAS. The paediatrician didn’t pay attention to them but was concerned about his weight loss as was less than 6 months ago.
He is very lethargic and emotional with pain in his limbs - but he does also have M.E/CFS.
He has night sweats but no fever.
The blood results we had done for PANDAS also show:
White cell count *3.66. x10^9/L
Eosinophilis. *1.9%. 0.07 x10^9/L
GAMMA GT. *8
Phospate *1.17. mmol/L
Uric Acid. *155 umol/L
IG3 subclass. *0.21 g/L
I know some aren’t relevant but thought better to put the whole picture in.
I am not asking for a diagnosis as understand that is the doctors place, (we are scheduled a call) but from the years of his other needs, I know that other parents know best having walked the path so if anyone has any advice on what I should best do to support him, tests to ask for, been in a similar position? Any advice very gratefully received as I am wanting to gain as much information as I can before the doctor rings back to prepare myself.
Please note : My son has multiple issues so please don’t worry about upsetting me by saying it sounds like Leukemia. I am braced for it and given his history, used to it and would rather hear honest opinions from other parents/people informed. Thanks for the time