If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.

Find out how to let us know if you're concerned about another member's safety.
Please read our updated community house rules and community guidelines.

Brain tumour- Behaviour concerns

nat2theo Community member Posts: 6 Listener
My child is 3yrs and 7months has had brain tumour removed from brain stem area and chemotherapy and radiotherapy(protons) since november we have had no help with his behaviour we have gone through a lot and i admit some of his behaviour is not that far from a normal 2-3year old but recently i noticed he over reacts to small things like not wanting help undoing his laces- 45minute tantrum and a woman spilt a drink on him in marks and spencers and he didn't really respond attall. ??? i don't know what to think cause on a good day he is like a normal 3 yr old whatever that is but on a bad day he is quite difficult and i find myself constantly monitoring behaviour.  Any suggestions?


  • will22
    will22 Community member Posts: 31 Courageous
    Hi Nat2theo,

    There are a number of different ways of looking at this and given the combination of factors here it will be tricky to tease apart what is going on.

    First and most obviously is the trauma that your son and yourself have been through together. As a parent of a 2.5 year old I can only imagine what you've all been through and I hope that you have a full recovery.

    Regarding the behavior, as you say a 45 minute tantrum over a seemingly simple thing can be part of everyday life for a young child. I had a cheerful nearly an hour on again off again the-world-is-ending outburst over choosing the correct episode of 'hey duggee' this weekend. I'll assume though that this is out of the normal or occurring more frequently or more intensely. 

    The stress on a child of this kind of event is likely to be huge. The alteration to the parent child dynamic will similarly be huge. How exactly this might impact on the behavior is something I can only guess at as this is such a layered and complex situation. 

    Added to that are possible concerns about the physical impact of surgery and medical intervention on development and knock on impact on behavior. 

    So where to go with this. I would recommend firstly keeping in touch with the medical team involved with your son's care. feedback any changes or unusual behavior. I know nowhere near enough about these procedures to know if behavior changes are an expected outcome or an unusual event. Feedback what you're experiencing to them so that if this does raise an concerns with them then they can act on it.

    The impact of surgery/medication on a child this age  -very difficult for me to pick apart how this could impact and I don't wish to speculate further than simply saying it will almost certainly have had an impact. The best way to explore this may be to make links with parents who have been in similar situations? explore support groups parents forums to see if this is something that they have experienced and look at how they managed it. Other than this I'd take this directly to some form of therapeutic input, if you feel that this may be beneficial to help your son understand what has happened and how to cope with it. Again, not knowing the details or what your son's awareness of what was going on with what sounds like complex surgery, it is very hard to speculate. This is something that could go to CAMHS. 

    The other option is that this behavior is not 'normal' as such but behavior which is understandable as normal behavior for a 3 year old who has gone through extraordinary stress and will in time diminish. As such there's nothing for you to do other than continue to support your son to grow and develop as you would any other child. Ideally as time goes on and life becomes more normal, this behavior will level out as he grows and develops like it does for other children. 

    What there is no harm in doing, as for any situation involving behavior whether it's for an average young person or where there are disabilities or complexities involved is to start logging and picking apart where behaviors are happening and look at patterns. What are the triggers? When do behavior flash points occur, what skills can you help develop like compromise and turn taking. When do these behavior occur? Is it about who's in charge of tasks like tying shoe laces- is this a reflection of a young person who's had a lot of things 'happen' to them without any form of control exerting their control over small tasks in their life? 

    Based on the info you've given me I would do the above. Pass along info toy medical professionals, find parents who've been through similar to see if your experience resonates with them and to explore options of therapeutic support for your son (if you feel that this is appropriate) and for yourself. How much support have you had to manage the stress you've been through?

    other than that treat it as any other behavior challenge. Break it down, when does it happen, where does it happen. What can you learn form this and what skills can you help develop to support your son to deal with the stresses he will experience.

    I hope this is of some help. Please get back in touch if you have more info or any other questions. 


  • nat2theo
    nat2theo Community member Posts: 6 Listener
    Thank you for your response, I agree some of the behaviour is very normal for his age and the fact that he missed 8 months by being in hospital it does seem the behaviour (terrible two's) style is basically like he's picking up where he left off at two and a half. He was assessed by CAMHS at Alderhey but they just do tests for an hour or so and he is very good with others no behaviour issues were seen by them. Theo seems to struggle with feelings and frustrations and is very independent so his physical disability is difficult for him to manage, but i do see this is improving. What concerns me most is he has good days and bad where he does seem very affected on a bad day and it does seem beyond normality for his age.
    There is not much help out there as they don't seem to understand much themselves, most likely because my son had a rare cancer which no one has survived in this country and the surgery was also ground breaking and the Chemotherapy is not a standard protocol for two year olds, plus we took Theo to have Protons in America which also means the consultants in this country are lacking in the knowledge of how the treatment will effect him long term. I do know however if he had had standard radiotherapy his situation would be very much worse.
    When i asked what should i expect for Theo's future if he survives, i was told they did not have a similar case to compare with, so I'm in the dark really.

    I will record the behaviour and begin trying to find the triggers as this will help.

    Thank you so much.

  • will22
    will22 Community member Posts: 31 Courageous
    Wow. An incredible situation, I wish you the very very best.

    The difficulty with the behavior issue is that at this age the skills that underpin normal behavior are still not fully developed. Behaviour intervention occurs at 2 levels, the first being looking at minimizing incidents and managing them well, and the second looking for missing skills that cause the behavior in the first place. But at this age, those skills have likely not fully developed so establishing what is 'normal' and what is not is tricky. I would not expect a 2-3 year old to be able to compromise and negotiate at a high level or control their temper, but by 4-5 and onward you would expect these skills to be more apparent. 

    In the here and now as I said, detail and document what happens and where it happens. Draw up a log or diary and start to look for common themes so that you can plan for situations where behavior may occur and avoid what you can. 

    In the longer term what you will need to establish is what should an 'average' 3/4/5 year old be able to do and what does your son struggle with. From this you can look at what skills or areas may be impaired and then look for ways to teach these skills, or teach skills that may bridge the gap (what are referred to as functionally equivalent skills). 

    This is a very complex one as separating out the impact of what you've all been through with physical issues and pre existing difficulties is very difficult and I would expect a detailed assessment from any professional involved in looking at the behavior. 

    Again i wish you the best of luck. Please keep in touch if there is more I can do. 
Complete our feedback form and tell us how we can make the community better.