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3 year old undergoing treatment for leukemia acts unrecognizably due to medical interventions

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Question

Dr. Laura,

My son is undergoing treatment for leukaemia. As a result he has to take steroids for 5 days once a month, for the next 2.5 years. He is nearly 3. We are finding the steroids cause extremely difficult behaviour in our usually pleasant little boy that lasts approximately two weeks of the month. He growls, spits, shouts and screams. He hits us and any children he plays with, usually if he is frustrated. 

I dread taking him anywhere and all he wants to do is watch telly. He is often extremely tired, yet his sleep is disturbed and he eats a lot. He is also quite manic and won't calm down. He doesn't listen to us at all. We have asked for help from our hospital psychologist as we don't recognise our son during these periods, but she has not been supportive. In fact she has told us this is normal for 3 year olds (and some of it probably is) and to send him to nursery to get rid of 'the problem.' She suggested buying the book "Toddler Taming" and that he will be fine when he finishes treatment, but this is ripping us apart as a family right now. Can you or any of your page followers offer us any advice, please?

Thank you!

Answer

What a heartbreaking situation you're in. I completely disagree with the advice you've been given. You're seeing that your son is usually pleasant, but when he is taking the steroids, he is unhappy, and thus behaves in an unhappy way. He wants to self-medicate with the telly and with food. He is extremely tired because his sleep is disturbed, so he has few inner resources to cope with frustration. He lashes out. 

Since there is nothing we can do about the steroids, I wonder if there is any way to address his unhappiness? This will take great dedication from you, but I think at this point you just have to think of your son as a special needs child who requires a tremendous amount of extra care. What can you do to help him to get better sleep? Are there some foods that help him to feel better than other foods, given that his moods are clearly being influenced by the meds? Are you doing regular roughhousing to get him laughing, which will help with the frustration? Can you devise activities at home, without other children around, that will keep his stress levels low? Can you parent differently, by getting in his face in a patient way, since he isn't listening to you? I realize that this is a whole different life for you to lead now, but I think his condition requires it. Your son's brain is being shaped by the interactions he has with you now. You don't need them to be about stress and fighting, but about support and love. 

Good luck to you.

Dr. Laura, 

Thank you ever so much for your reply. His doctors have decided to stop his steroids for a month to see if we see any improvement in his behaviour, which we are grateful for. We haven't seen a massive improvement with lots and lots of whining, tantruming and hitting still, but he is more responsive to us. He enjoys pillow fights and hiding so we have been doing that. We often try to role play some of the more difficult procedures (injections) he has had over the last year, since his diagnosis as well. He loves fish, so we do let him eat that quite a lot. 

I read your article on whining and today we laughed and searched for his strong voice, which was lovely. I do think we need to change our lifestyles to suit him more as I am sure he struggles with difficult days in the same way an adult going through cancer treatment would, he just isn't capable of explaining how he feels in the same way. We know he gets tired in the afternoon (sometimes showing signs in the morning too) but if we stay at home he won't nap and if we go out he just has meltdown after meltdown and falls asleep in the car. We struggle to be flexible and maintain any kind of routine.

I have also read your articles on crying and limit setting as we are finding him ordering us around a lot. We always stay present when he cries, trying to empathize with his feelings. He nearly always comes to me for a cuddle and as soon as I hold him he settles down and starts looking around for the next thing to do. With his dad he melts down for longer looking for me. I do feel he isn't really getting it all out his system and setting another limit usually makes him meltdown in a short space of time, but we never seem to get it all out. I am guessing this is because he has a lot of tension stored up, but I wonder if there is anything more we can do to help him. 

Thank you again for your help. We do recognise how important this age is for his development and it is so difficult seeing him going through such a rough time, any help is very gratefully received.

~
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