Newbie, son with a bt and long standing fatigue

I am possible here a little early, my son is nearly 16, diagnosed with a brain tumour as a toddler, the last 3+ years he has been fatigued. But he has not had any treatment for over 4 years. I think we figure out what's wrong and we get a few good days then he's back to sleeping. What doesn't help is that he has so many doctors and each one looks at their speciality and says that bit is fine, but some thing is definitely not right. Will things be easier to sort out when he is in adult services?

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  • Hi and welcome. I have had two friend suffer brain tumours. Both were expertly treated, but it seems by just one consultant, it must be difficult to have such a lot of people to deal with. Have you tried calling the Headway free helpline? They should be able to point you in the right direction and help straighten out the confusing situation you're in. Wishing you all the very best in seeking appropriate assistance.

  • I am sorry you are going through this. From my own tumor experience is you have to get a doctor that will do something. How are you fine with a brain tumor is my question? Why has it not been shrunk with radiation or removed? There are many options to remove tumors such as Gamma Knife, intra- nasal removal, Robotic surgery. I am in the US, so I am assuming the UK has this too. I would hope. Neurosurgeons and ENT- Head and neck surgeons treat brain tumors. Neurologist are involved as well. You may have a radiation oncologist involved if radiation is needed to shrink the tumor. Fatigue with tumor and sleeping is not good at all. The tumor is affecting the body. Why can't he get care? I know I went through it with my tumor and was told at one point to go home and die. That was nine years ago- still here and had successful removal via intra- nasal approach. I am going through it right now with a head injury and crazy docs. I usually don't beat up on docs, but with all this technology no one deserves to suffer and have tumors. They're so much technology. Are there patient advocates- get one! Get a different GP or PCP as call them. Get someone fighting for you guys. This is awful. If you'd like more info let me know. The tumor is the cause if it's still there. I was not clear if he still has his toddler tumor or it was treated and they stopped treated and he fell ill again. Not good either way.

  • Please do as Elenor suggests by making a call to the Headway helpline. You need all the help you can get in centralising all aspects of your son's treatments in the hope of pinning someone down for a firm prognosis.

    The helpline tel.no. is 0808 800 2244 free call-office hours.

    All best wishes for better care for your son and peace of mind for you m'dear. Cat x

  • ok fairydust looks likes your sons being f****d around and your allowing it to happen. if my wording is a bit strong thats because im suffering from a bi due to a stroke and have friends at my local headway group who are suffeing from tbis and i know 1 has had a brain tumour..

    brain tuumours kill people, maybe its the tumour sapping the energy from your boy, i hope im wrong.

    what im saying is, its no good looking for advice on here, you should be banging on his gp and neurologist and anyone else whose involved with him and making an absolute pain in the ass of yourself...................as youve pointed out hes a minor which makes him your responsibility.

  • My daughter has a Brain Tumour it's been in her head for over 20 years. Initially she slept most of the time, but gradually as the years passed she gained more strength and slept much less.

    These days she has bags of energy but does need little cat naps sometimes and takes one day every week to chill at home.

    Her Tumour was too deep and dangerous to take out - but stopped growing

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