looking for as much advice possible for my 16yr old son

[petersmum]

hi my name is claire 33 and my son Peter 16 was hit by a car on the 5th nov . he has had a massive blood clot removed for his brain and many other injuries. Peter came out of his coma a few days ago and is now off life support. the righthand side of his body isnt moving and he is unable to communicate. I know this i very early days for Peter and us but i am wanting to find out as much information as i can to enable me to be the best mum that i can and get him through this. The nursing staff have given us a 6 month - 2 yrs recovery period.can anyone tell me there experiences that could help Peter and the family ?? peter has a sister amy 15 and brother damon 2 they miss him so much and just want him back as quickly and safely as we can. .

[fuzzyhead]

Here's what I know:

The left hemisphere is what deals with speech/language, and each hemisphere controls the opposite side of the body, so if his right side isn't moving it's his left hemisphere that has been affected. I know this because I had a right-hemisphere subdural haematoma and my control over the left side of my body is ok, but not brilliant...luckily I was always right-handed. But he will need to learn to communicate again...the clarity of those communications will depend on how his recovery goes.

I can't generalise about recoveries as all injuries are different, but no matter how his rehabilitation goes, his brain will have to form new neural pathways which is a painstaking process. I would suggest he will be likely to display emotional lability, a lack of control of his temper, a lack of recognition of social boundaries, there are a lot of impacts really.

He will probably tire easily, and may have trouble controlling his bladder for a few months if he was catheterised while he was in his coma (I was in a drug-induced coma for 10 days, and it took about six months before I didn't need to go to the toilet every 20 minutes...probably something to do with the catheter weakening the muscle for 10 days).

The other thing I would say is don't expect to get the old Peter back...my family had to get to know me again as I changed significantly from the way I was.

Finally, don't think that progress isn't possible after the recovery period they've given. It is ongoing. An awareness of the effects of the injury and a determination to engage with him and help him recover, even when he may seem unwilling to cooperate, will stand you both in good stead.

That's about all I can think of, but there will be a lot more relevant stuff...

Good luck to all of you!

[ncmurphy1951]

clare i suffered a brain hemmoraghe in dec 2007 didn't wake for 3 months if begggers belief to understand what my family and loved ones went througn but as a victim i know when i woke and started the long haul to normality what kep me going were not the physios nurses and ewxperts but the little words and actions of my family my first stand a walk were greeted with tears a hug and a kiss from my fiancee when showing my children how oi was able to walk with a zimmer fame my son went to the bathroom his mum indication he was crying my only advise is not to chastise but to encourage times will be tough and exasberating be firm and loiving in many ways it will be emotionally tougher for a mother than the patient i am 5 years on and still unable to work ands gewt about without a supporting arm having my 82 year old father support me is humbling but demonstrates to me that he cares and as i always said in business it is what it is no use moaning just deal with whatever to make life as normal as possible god bless neil

[ncmurphy1951]

me again having close down my la top and thinking about your family's situation i had forgotten two important milestones./ events that were important to me the first just after i was well enough to get out and about although in a wheelchair i was visited by friends a lot allowing me to get into the normal world eat proper food as opposed to hospital a friend of mine who lives in belfast took the time and trouble in a busy business life to act as information control in the 7 days between my hemmoraghe and operation i was in spain

i received in hospital what i can only describe as a book of emails reading through them i was then 48 and yes they made me cry to an extent thew nurses went into panic mode aaftewr explaining that to read how much people cared was indeed very touching

the other i had been in a wheelchair for a few months although in physio i was on my feet and crutches but the length of a walk limited to 300 meters till my legs hurt and i tired then one day whilst my fiancee jacqueline was with me the wheelchair was removed i went ballistic jacqueline admitted that she askjed them to remove it god was i mad but she wwas right a montha after i starting walking with a stick the other advantage that i noticed as i was stable with crutches i was allowed out on my own i.e independently jacqueline was so right a case of pusshing for the good of god beless

neil

[hannahlb4884]

Hi Claire,

My mum got hit by a car in March and was on life-support and in a coma for a week.

Waking up from a coma isn't like on TV or in the movies, people don't just wake up and talk to you straight away. My mum just moved in her sleep a bit at first, the made more purposeful movements like trying to remove her breathing tube. After she opened her eyes it was a day or two before she spoke and a couple of weeks before she made much sense.

She had very bad post-traumatic amnesia for around three weeks (I think typically it is twice the length of the coma), she couldn't remember who I was and couldn't remember her dad (my grandad) had died four years ago and kept asking why he wasn't visiting (we just went along with it as other wise we would have had to keep telling her her dad was dead and this would have distressed her, she remembered on her own in the end). This did clear though and now she remembers everything both short and long-term other than the events immediately before the accident and most of her time in intensive care (she was mostly unconsious for that time).

Mum was lucky that she had very few physical effects after leaving hospital, just hearing damage and not much sense of taste or smell left. She hit her frontal lobe and is much more behaviourally effected, she can be loud and impatient. But her intelligence is fairly unaffected, she can look after herself just fine and has returned to her part-time job on a trial basis.

The thing that is on your side is your son's age. The doctors told us that as mum was middle age her brain is much less able to re-wire itself around the damaged part to make up for the injury. children, teenagers and to a lesser extent young-adults recover far better from brain injuries than older adults do.

The six-month to two years recovery period is a guide. Generally recovery is rapid at the start but gets slower as the months progress. I think doctors used to think that where you were at two years is a recovered as you will get, but now they acknowledge that less obvious improvements can continue for years. My friend's dad had a brain hemmorage and was a unwell as my mum at first and doctors thought he was going to die, he didn't and was mostly recovered by two years but subtle things like his communications skills and mood continued to improve for years after that.

The best thing you can do right now is talk to your son, including explaining to him what is going on and make sure he has friends visiting him if they are allowed into intensive care as he may be able to understand everything you are saying, just not able to say anything back. Read books or magazines to him and pay music if you are allowed to, show him his get-well-soon cards, just entertain him a bit.

[fuzzyhead in reply to hannahlb4884]

Would just like to echo some of Hannah's points, age is a big factor, also my mom was reading to me, playing tapes, etc while I was in ITU; my bro also told me about watching girls exercise at school and my heart rate leapt, so I must have understood on some level. Also if there is much damage to the left hemisphere then having linguistic input will hopefully start stimulating/retraining that part of his brainbox before he's even conscious again. I saw someone else on here saying about her son, she continued stimulating him for years and his recovery was excellent...that won't necessarily be the case with Peter (although we all hope it is), but you obviously just want to help him recover as best he can. His initiative may be worse than it was, if so then you and other caregivers (OT, for instance) will need to be on top of initiating activities. Everything I have said is based on my own experience, so please don't be discouraged by any of it, hopefully you won't have as much to deal with, I'm just trying to prepare you for some of the challenges you might face. Again, positive vibes, and wishing you the very best of luck

[Hidden]

Forty five years ago I was 17; the result of a road accident was that I had blood clots removed from my left temple area. I was unconscious for over a month but eventually woke up.

I could walk, badly. Reasoning was difficult and I found speech a real problem. Words were difficult to find and I stuttered for them, not being able to string a sentence together properly.

There's a whole host of things that affect a brain injury survivor. We're all different with our experiences however there are things that have in common.

One of these is a change of personality; I recall the surgeon [a Mr Bhati of Atkinson Morely Hospital, Wimbledon] telling my Mum that I would be different, quite possibly the opposite of what I once was. There was a bit of truth there for I had become something I'd cross the road to avoid.

In 1967 there was no care package after; you just got on with it. I thank my late and dear Mom for being a sterling mother who looked after me and my needs, She never walked away from her responsibilities despite the aggravation I must have put her through.

Reading and writing were difficult and my short term memory was very poor.

Now, 45 years on I am as well as I can be - I have problems with spatial awareness and I swear too much. I'm also anything but diplomatic.

It all takes time Petersmum; my initial recovery possibly took a few month, perhaps two years but it was 15 years before I started right about myself; so recovery? Every one is different.

If you want support you'd do no better than to contact Headway. They have a whole host of advice, some specialist, and of course there's other survivors and carers you can talk to.

You will face some harrowing times but you will give support to your son; I wish both of you well.

[spartan300]

hi claire, this may sound strange and i dont know if other members of headway have used this,try to play your son classical baroque music the sound on low when he is sleeping and slightly louder when he is awake ,this type of music triggers the right side of the brain ,it is used to relax you and to help you learn and retain information quicker its called accellerated learning and has been used for a long time the music is i think mainly mozart, it is used to awaken and stimulate the brain in babies you might be able to buy this on the internet its called mozart for babies, check out what i have said on the net, take care , john.

[watso]

I told some of my sons story 2weeks ago so you may want to look at my blog.

Our son was 14 when he was hit by a car and he suffered diffuse bleeding throughout his brain but the most damage was predominantly to the left side of his brain . We were told he would never walk again and he would spend his life in a wheelchair and we had to prepare ourselves for the worst. They said we'd lost the son we had and he would never come back! They were such harsh cruel words to hear when our son was still in his 11 week coma!

How wrong they were though! We worked constantly with our son as he had to relearn everything but the best advice I can give you is to stimulate your sons brain by doing physio morning noon and night as this stiimulates the damaged areas of the brain and will in time help the brain to form new neural pathways. We were given access to the physio room on the ward whenever it was available and we used to start our sessions with massage to improve our sons body awareness followed by reflexology (I am a qualified relexologist) and then we worked on stretches/ passive movements of all our sons limbs and trunk,, coactive movements,, sit to stand exercises, balance work and eventually progressing to walking( all under the advice of the amazing physio's). Stay positive and praise your son constantly!

Is your son seeing a speech therapist and occupational therapist? Make sure you are always involved in these sessions because again your son needs to be stimulated more than just once a day or couple of days a week and the amount of effort you all put in now will reap benefits later!

Your son will get very tired and give him allocated sleep slots daily. Our son didn't ever suffer from seizures and if he had we may have had to take the rehabilitation more slowly!

The Neuro staff still to this day reckon our son has recovered so well due to the early sensory stimulation/ intervention he was given and we certainly felt we needed to do as much as we possibly could for him and being able to fill our days in hospital doing purposeful activities with our son certainly helped us through those awful early months. The work continued when our son was eventually discharged for home and even 16 years on he still does daily physiotherapy, Our son is now married , working and leads a good life. he still has some residual problems and needs support from understanding people around him and it has been a long journey but please stay positive and keep your sons spirits up and have humour in your lives!!!! Wishing you all the very best !!!

[petersmum]

can i just say i am so overwhelmed that everyone has taken the time to tell me their stories and to give me so much good advice i really am so grateful to you all and i am going to message u all back ... its just i am always at the hospital and when i get home my 2 year old demands my attention then i fall into bed for a few hours . but please don't think i am not grateful to you all. Peter has been doing great the past few days he was trying to type words into his phone today but it didnt quite make sense but i cant even believe he was trying after just 19 days. the hospital didnt think at the start he would even make it through the night!!! he whispered mum today and his sisters name amy and was blowing kisses and waving .... we were so shocked and amazed what a wonderful day it was thank you to everyone for your best wishes and support and i will message you all back in the next few days. all take care xxx

[Gillie63 in reply to petersmum]

I so remember my sons first words once he remembered who i was, he said mum looks rough! lol he wanted his mob to tx on to but his msgs made no sense either tho he could spell rude words perfectly! your son sounds like he is doing just great he will get there just takes time, but he knows you all believe in him and that will give him strength to keep goin

Gill

[hannahlb4884 in reply to petersmum]

That sounds like amazing progress

Like I said above my mum was in state of extreme confusion and amnesia for a little over twice the length of her coma - she even kept plotting her excape from the hospital even though she couldn't yet walk! She remembered everybody's names but not who they were really, she knew I was Hannah but thought I was a nurse who worked at the hospital. Be assured it will pass, there will be moments of clarity amoungst the confusion and these moments of clarity increase in number and length and eventually join up and the patient is no longer confused.

My mum's voice took a long time to get back to normal after the intubation, initially she could not talk then she could only whisper and we couldn't understand most of the whispers which was extremely frustrating for mum, then she only shouted for a while! Mum couldn't concentrate to read or write at first either.

[richardhomer]

Hi,

I just wonted to wish your Lad peter all the very best. It sounds as if he had a good day yesterday with blowing kisses at his sister and trying to type on his phone. I hope he keeps going in the right way and that he dose not have a little set backs.

All the very best and please keep us updated with how he's getting on.

[Mum4ever]

Hi,

My son's accident was in April, I remember when he tried to type words on his iPad when he was still in the critical care unit.Like you say the words did not make much sense but we were so happy that he could pick the thing up and use it!! He has been writing on his Twitter blog for nurses recently and is reading everything he can! He has a way to go yet as he gets tired and uncomfortable in busy situations.He has done so well though and its not a year since his accident.

Knowing there are people out there who know exactly how you are feeling will help you deal with what has happened. Unless you have had or know someone who has suffered from a head injury you cannot properly understand it.Friends and family will be worried and supportive and caring but sometimes they just don't get it. Ask questions, read about it, listen to you son, ask people on this site and get all the info you can. Its a long hard slog and like people say here, every story is different but the worries, emotions etc are all the same.

Dont worry about responding to messages.....log on when you can and when you need to let off some steam because we all know what is like.

Keep strong, get some sleep.

xx

[Ettenna]

Hi, my daughter is 18, nearly 19, and had a TBI in September after a car crash. She is still in hospital on a HDU, waiting for a bed in a neuro rehab facility. She still has a trachy but is breathing for herself. She has no movement apart from her head side to side.

I joined The Brain Injury Group. They have a wealth of knowledge and support. We are meeting up in January, the first time I will have met any of the people on there.

s15.zetaboards.com/Brain_In...

Whereabouts in the country are you? Have you made contact wit your local Headway group?

I hope you are keeping well xxx

[zainey-lainey]

i do so wish my family new about HEADWAY when i was in ITU. The support here is just what is needed.I wish there was someone to meet and greet Brain injury patients families and give them support and advice/resorses in the hospital. because if like my family don't no they just leave it to the NHS to fix and support.

At 2 years i plateaued and not much progress after that so you have to except what you are left with and make the most of that.you feel like you r the only one with a Brain injury and to see/read about other folks worse off than you is a real eye opener and you tend to het a grip!.

but one of the important things is to give him a purpose to fight and get well. He will feel so frustrated and low that he cannot do what he could do before. Give him an aim like his driving lessons and a car.or 18th birthday bash. having a responsibility in life means you have to get well, i a single mum had a home and 3 kids who needed me i couldn't give up. I so feel for you as even though he is 16 he is still your baby and will want to make him well..Having you is the best and also laughter that truley is the best medicine. Who is his fave comediian or programe like inbertweeners, rude but funny to 16 year olds..set up a dvd to a telly and get his young visitors to watch it with him whenl he can do so... although Rota your visitors as to many voices and faces are so hard on the brain . But do stay on here for support my love .