Not sure where to turn to next.

ChloeB

Hi, I’m sorry in advance if this is a long post but I just needed some advice as I am at a loss at to what to do next. I have a son who is 16 and suffered a brain haemorrhage at birth. He suffered brain damage due to this and it has left him suffering from Epilepsy, adhd, global learning difficulties, behavioural problems and is autistic. He has a very low iq of 52 and the mental age of a 9 year old and the doctors say this is as far as he will progress now due to the brain damage. We have been seeing his doctors now since he was small but we seem to have come to a dead end. They always seem to put everything down to his brain damage which I can understand but it goes no way into helping us as a family and for the first time I feel like I can’t cope.

The major issue at the moment is his mood swings. He has always suffered behavioural problems but these are different, I can tell as his mum that these are not the same problems he was having when he was little. He goes from a happy lad without a care in the world to a person who is unrecognisable . There are no triggers or reasons for this change it just happens. Its hard to explain what he is like when he is in these moods, he doesn’t want to eat, he won’t wash, he will sit in a chair and not move from the moment he gets up till bedtime unless its to use the bathroom, he doesn‘t watch telly or anything he just sits there. He thinks people are saying stuff about him, he will tell me that I said I didn’t love him and I wanted him to die and I would never say such things I adore him but I can tell in his face he believes that these things are being said. He tells me how he wants to die and we would all be better off if he was dead, He bangs his head on the wall, pulls his hair till it come out tries to strangle himself. He has also started to hit out at me if I try and stop him from hurting himself saying he wants to die and to leave him alone. He isn’t a small boy he is 6ft 1 and weighs 15 stone.

We are becoming trapped in the house as I can’t take him out as I never know when his mood will change, he swears loudly and tell people to stop looking at him when they are not. If I take him in the car he will take his seatbelt off and tell me to crash the car so he can die, so I can no longer take him out in the car as I worry what he will do next. I can’t take him on the bus as he thinks people are staring and talking about him when they are not! These moods can last for days, weeks sometime and the all of a sudden he will snap out of it, he becomes happy, he wants to play games again , he wants to walk the dog a total contrast to before and these moods can last a few day maybe a week then it’s a total swing back to being so down and aggressive again.

I have spoken to his psychologist that basically gave me the same his brain is damaged what do you expect talk and that he is already on 1mg of risperdone and they can do no more, I went to his neurologist as I thought maybe it was a side effect of one of his medications but she ruled that out and just kept asking him if he was smoking cannabis! Even though I said he never goes out alone she kept asking. This is only the second time she has seen him as he has just moved from GOSH to adult services.

So I am at a loss of what to do now, no one seems to understand just how bad life is at the moment. I don’t know who else to turn to. If maybe I should pay to go see a private doctor that hasn’t seen him before that may see past his brain injury as I really believe if he carries on like this one day he will seriously hurt himself if not worse. Has anyone else had these problems? Would I be better of taking him to see a private psychiatrist or a private neurologist? Thanks in advance for taking the time to read this.

iluvmarmite

Hi Chloe, I cant and wont say I understand what you are going through because I have never been there myself, but from your post I can see what pain and frustration you are having with your sons illness. It must be so awful for you and seems like no one understands and wants to help.

I do believe that when a person has an permanent illness then the Doctors put everything else that happens to them down to that illness, they wont perform other tests because they think they know best and you have to accept what they say as gospel! But as a Mother you know that theres more to it than what they are telling you and maybe with a different medication things might improve but you cant tell a medical professional that because they will just say they are the professional and they know more than you.

If you can afford it then you should definatley see a private Doctor as it will be someone with fresh eyes who hasnt dealt with your son before, they could perform extra tests, refer you to the best professional people who are experts with this kind of thing, they could find a more suitable medication for him. Maybe there is somewhere he could go for a couple of days a week to give you a break, a center that is designed for people like your son and will know about mood swings and agressive behaviour and will be able to deal with him, and it could do him the world of good being out of the house and with other young people.

I really hope you can get something sorted because at the moment its not only your son that needs looking after but you do too, and you need it as soon as possible because you need your health both physicaly and mentaly to be able to give the best care possible to your son, and of course there is also the worry that one day when his moods are dark he could end up hurting you badly, not that he would mean it, he just wouldnt be able to help himself, he wouldnt know what he was doing really, so the sooner you can get another doctor to look at him the better xxxx

SingleSue

Hi Chloe, I have a smidgen of understanding as my middle son suffered some brain damage during his delivery (he also has aspergers and is partially deaf) and he is very unpredictable with his moods...one minute he can be the nicest child you could meet, very polite and the next, almost like a switch has been turned on, be extremely violent, vitriolic and downright scary, thankfully, the outbursts only last a small while but knowing how eek I feel at the time (he is also a big boy in size and way past my capabilities of restraining now), you really have my empathy for something that is longer lasting.

I don't know what to advise you, we discovered some of his triggers....being too warm, feeling there is no escape but sometimes there is no explanation and that does make it difficult. I have persevered in taking him out to places and teaching him coping mechanisms but knowing how stressful that was and is and for mood swings of a shorter length, that is probably easier for me than for you, so it is probably not the correct advice in this instance.

Please take care though and keep seeking an answer, my body has been damaged by all the punches and kicks over the years and I am now reliant on crutches after a particularly bad attack in the car a few years ago (not helped by being hypermobile/EDS myself) where he was kicking me repeatedly in the back and trying to strangle me with the seat belt.

ChloeB

Thanks for taking the time to reply, he was assessed at the beginning of the year and we was offered respite care but due to cuts in the funding this was reduced to 4 hours a week . I used to have an outlet as I worked whilst he was at school but now he has left school and the college course he starts in September was reduced from 5 days to 3 days due to its funding also being cut., I have had no choice but pack in my job. As I couldn’t find a place to take him on the other 2 days. Just doing something else for a few hours a day really helped.

He does have certain triggers we have found and people touching him is he main one but since these longer moods have arrived they just seem to arrive out of nowhere. I still take him out places but its to the park for a walk or to feed the ducks now rather than other places. Mainly because I no longer feel safe driving in a car alone with him in case he tries to do something silly to himself or to me and I would have no way of stopping him but also for him own sake as he genuinely believes that people are taking about him and looking and can get really upset and agitated by this even when you point out they are not. He really truly believes they are .

MrsManda

How recently did the mood swings/increased behavioural problems start?
It could be that his symptoms are related to hormonal and neurological changes due to adolescence. Teenagers with no health problems often go through a stage of frequent mood swings which can include paranoia, uncommunicative behaviour and lashing out in violent outbursts which are related to hormonal changes and changes in brain structures as the body as the body reaches adulthood. Eventually everything settles down and the person learns to deal with the changes.

In a person who has problems with neurological malfunction there is a delicate balance of control, often helped with medication, which allows the person to function. This balance can be upset with hormonal and neurological changes just like any other teenager except that the results are likely to be more extreme.

If his psychologist has decided there's nothing he can do for your son have you asked him to refer your son to someone else? If he's a paediatric psychologist it may be worth your son seeing an adult psychologist.

A neuropsychologist is another option, especially if you can get one which specialises in adolescents. Neuropsychologists deal with people who have psychological problems related to some sort of brain trauma/distruption of the nervous system and have the knowledge of a psychologist combined with the knowledge of a neurologist.
It's quite a specialist field so the waiting lists can be quite long but if your son's psychologist and/or neurologist is willing to refer him, given the severity of his symptoms he may be pushed to the top of the list.

Also when was the last time he had a medicine review? My doctors (neurologist, GP, neurosurgeon) always suggest a review every 12 months complete with blood tests to check the drug concentration in my blood and I'm kinda sure that when I was in my teens my meds were reviewed more often because of hormonal changes.

hope this helps a little, are you a member of any support groups for parents such as yourself? They can help you know that you're not alone and it's good to share experiences of what help is available, what others have found helps etc...

nlj1520

I haven't read all the replies as I felt strongly moved by your post as I have been through the same with my son although from a different cause (rare chromosomal abnormality called idic 15).
I am guessing that your funding cuts are because the respite etc is funded by Social Services? Ask for a Health Service Continuing Care Assessment for your son and see if he is eligible for some health funding as well as the Social Services funding. I am not sure who you need to ask but try the local Patient Liaison Service at your local hospital or citizen's advice bureaux.
I think you are also entitled to a Carer's assessment so that you get looked after to. Not sure whether this is going to any real practical help.
My local branch of the Carers charity has also been hugely helpful, a mine of information and an understanding and friendly voice.
You mentioned a Psychologist.....can you get a referal to a Psychiatrist? They are able to prescribe different medications. My son has an anti-psychotic as well as an anti-epileptic and a sedative called loranzepine (I think) for use when he is extremely challenging.
My son is 19 and as he has emerged from puberty he has become calmer, the new drug regime has helped to and it is now rare for him to need his emergency sedative.
My heart goes out to you. You will get through this but you may need some help as well as your son. I know it's exhausting and all-consuming.
My son and I have emerged through the rough patch and survived albeit with a few battle scars.
All the very, very best.

ChloeB

Hi, thanks for the replies they have been really helpful, his behaviour had been getting worse for the last 18 months but his mood swings and behaviour has taken a real turn for the worse the last six to seven months. The thinking people are talking about him and his talk of dying has been the last few weeks. We did put his original change in behaviour down to being a teenager but it seems to be beyond that now. He sees a psychologist that is a specialist in adolescences problems but I think she struggles a bit with the fact he barley talks to her and cannot really explain what he wants to and his past medical history doesn’t help, he tends to answer his questions by listening to the tone of you voice and working out what he thinks you want him to say. Like if you was to say your leg hurts doesn’t it? he will say yes but if you was to say your leg doesn’t hurt does it? He will say no so it makes things a little harder as he doesn’t have the vocabulary or confidence just to say what is on his mind. I never knew about neurophysiologists and will phone his psychologist and neurologist to ask for a referral tomorrow. I think that would benefit him a lot as they would be more understanding of the underlying medical history.

His Epilepsy medication was increased at the end of last year, but he hasn’t had a blood test or anything else for many years. This is something I am also going to talk about with his neurologist tomorrow. I did ask her if the behaviour could be side effect of the increased medication when we saw her recently but she assured me it wasn’t. It makes it harder at the moment as all the doctors are new due to him just being transferred to adult services.

My sons respite is indeed funded by social services through the children with disabilities team but they have said it might be increased when he changes over to adult social services. I will certainly go to the citizens advice about the health care funding. The psychologist he sees prescribes him with risperidone which is an anti-psychotic drug I think but due to his epilepsy and the fact he still suffers between 5-10 seizures a week even thought he is medicated there isn’t really anything else he can take with his other medication. He also has melatonin to help him relax in the evening when he is more hyper but with his mood swings when he is really down he hasn’t been needing this. Once again thank you for the replies they have been really helpful and given me lots of new ideas and hope when I really was at rock bottom!