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My 14 year old son has been very poorly for over a year. He currently is wearing age 11 clothes that hang off him yet a year ago at 13 was a tall beefy lad in 15 year olds clothes. After being fobbed off constantly with 'its a vrus' I put my foot down and demanded test after test after test to find out what was causing the following symptoms: -
Constant nausea before after and during food, extreme weight loss, extreme fatigue, depression, lack of concentration, dizziness, inabilty to do sports at school, school work slipping, lack of interest in life, loss of his inner sparkle, constant tummy ache, rib pain, constipation, constant thirst, constantly cold etc
Finally diagnosed with Gilbert's syndrome (his late paternal grandfather had it - I am divorced from his father and have little contact with his family so no help there), told by doctor there are no symptoms, no cure, no treatment, no need to worry. They gave him antacids, offered him a counsellor in case he was beiong bullied and/or worried about anything and sent us home,
NOT GOOD ENOUGH!!
We went to the docs because he was ill, they found it because he was ill, not by accident. All the websites i habe looked at say - NO SYMPTOMS!! But occasionally mild nausea etc etc etc but maybe its brought on by the anxiety of having a disorder. My arguement - he was ILL first and the symptoms are not mild.
Please help - I cant bear the thought of my son feeling this way for the rest of his life. Are there specialists he can see - does anybody care, is this the first time this (young) doctor has come across this or will all doctors be so unhelpful about this condtion. What can I do - does awareness need to be raised. Hasnt a doctor ever had this illness so they can say - actually its life controlling - bloody awful and I dont feel very well????!!!!
Any advice, help, experiences, anything are so so welcome, my son said tonight if I have to live like this forever please dont let me live to be 80 x
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