Thanks - of course, I should have looked it up on good old google first
I see that the key is chronic irritability and anger between the outbursts; in the description I read, it said the diagnosis was given to children who had previously been (mistakenly) diagnosed with bipolar disorder? It is so hard, isn't it - and hard to know whether the medications are or have been causing some of this irritability. But if the current medications seem to be working better than not, well... you have to go with it, I guess. I do understand, of course, how hard these decisions around medications are. Strattera seems to help J on the whole but he gets itchy red spots, occasional nausea and his appetite is suppressed (though not as badly as with some of the stimulants). Sometimes one just does long to take them off these things altogether - I did do that last summer for a couple of months, during which I saw that Strattera really does help his concentration and his mood. I'm sorry it didn't work out for your grandson - it takes ages after you start to get a beneficial effect but I'm sure you know that.
It is not quite as simple as J is "making good progress", I'm afraid. I'll give a few details - not to make this about us but in the aim of saying that your grandson is really not alone. It is a mixed picture. He has been home-schooled since September - I will not describe the incredible (mis)adventures we have had with school since he left the village school in France at the age of six!! Anyway, it's not permanent because 1) I cannot continue with the daily Struggle with a capital S to do any formal schooling and 2) he needs structure and routine. Unlike your grandson, he has huge problems with reading and writing (severe dyslexia) and I have found an online reading programme that we have been doing since October and which is finally helping him make some progress. It all happens with the aid of rewards.... sigh. We are back living in the village in France and the constant lure is to play outside in the village: this is all he wants to do, it is his absolute priority in life.... He does have friends, continues to be highly sociable - I have noticed that being with people seems to help him, makes him more cheerful and equable and even helps his concentration. When we were in the UK, which is a rougher and less civilised environment, we had trouble with bullying - him being bullied, or allegedly bullied. He is SO hypersensitive, reacts to teasing with anger, by wanting to fight... thinks he has to "defend himself" by getting tough. He is generally kind and caring with younger children and animals, does have a lovely, sensitive side that is affectionate and sweet. I am sure your grandson does too! Last night, for example, J told me he wanted to write four "I love you"s and cut them out in the shape of a fish for his friends - as he was doing it, he was saying things like "Don't be jealous, Mummy!" and "Sorry I'm not making them for you, Mummy!" ... then at the end, he came to give me a hug and "secretly" taped them all to my back. It was sweet.
But... he still has really angry outbursts when he is upset, "no" is really difficult - particularly with me - and he has what I call "mini meltdowns" almost every day when he is frustrated or disappointed. In other words, he has made very little progress indeed with managing his emotions. But because we have had to move so much (long, long story!!), he has not been able to have consistent help with this. It is an urgent need. He understands his own difficulties, talks about it - he is quite emotionally perceptive - talks about his "anger issues" (a phrase he learnt in the UK, other kids having used it about him) but I have not been able to help him devise methods of dealing with it. Partly because in his anger he is often/usually rude and insulting to me, and sometimes even lashes out at me physically - this I find extremely difficult and "triggering". He consistently says "sorry" afterwards and I can see he really means it - as if he really could not help himself during the outburst. He did have four sessions with an EMDR therapist in the UK and this seemed to really help him. The therapist thought he was a wonderful child and this is often people's reaction to J - most of his horrible, monstrous behaviour is reserved for me. I think we have definite attachment problems and one child psychiatrist diagnosed ODD - I think this is right at times but at other times he can be quite helpful and compliant so it is a bit baffling. As all these children are baffling.
Anyway... as I say, I share this to underscore that really ADHD (and additions) just does not make for easy, smooth life. I have times when I feel like I cannot cope with J, cannot bear his behaviour and the constant intense reactions to everything... for the moment I have taken myself out of the school arena so don't have that to contend with!! But J really doesn't want to do school or to learn in conventional ways - he finds it horrendously boring and has no sense whatever of "future" or needing to go to school. He just wants to play with his pals... and school for him is just a place to go to be with other kids. So at least your boy has his smartness and sophisticated reading skills. That is a BIG advantage! Will things even out for him a bit at high school level, if his talents and abilities are encouraged? I really understand your fears for the future. J is basically a good kid but there are times I have seen a future only of crime and delinquency for him... which would be very sad, as it is for every kid who goes that way. I have tried so very hard to get appropriate schooling and therapeutic help for him and as of yet it just has not come together.
Have to go - we have an appointment with the child pyschiatrist! Take care and look forward to hearing more of your news.