Brain Injury -Update

[Frangipani]

Hi,

 

I am wondering and would like to talk with anyone that has experience in 'Brain Injury'

 

Dealt with Specialists or the Legal System for 'Brain Injury' during Child Birth.

 

If you dont wish to discuss it here please PM me.

 

I am really interested in any websites or forums to do with this that anyone may recommend.

 

Just over the past week or really past 5 years I have had this gut feeling about my son having a whole lot more than ASD & ADHD and have lots of questions going round in my head.

 

I rang Legal Aid to get referrals to Solicitors that know about this, and have contacted one of the Specialist Hospital Neurological wards to have a meeting.

 

My son shaved his hair the other day and I can see there is still scarring on his head from a forcep delivery.

 

He was forcep delivered and had a rotation 20 hour labour and distress. My gut feeling is there is a whole lot more going on here than ASD & ADHD. I have been also putting of a blood test for Fragile X but for various reasons I have kept putting it off. I will give myself a swift kick up the behind and do it, once and for all.

 

But deep down, maybe I need to be considering Brain Injury.

 

Any advice from those that have gone down this path, and anyone knowledgeable in this area, I am really interested in your views.

 

Even if an MRI could tell me something more. Hidden underlying causes possibly going on.

 

Thank you.

 

F xx

Edited May 20, 2007 by Frangipani

[aro]

An MRI would be the best method for finding out if the brain is damaged, but you'd have to convince a paed to request one. (ours was because of her cerebral palsy and epilepsy)

 

My daughter has an anoxic brain injury, she has large amounts of white matter missing throughout her brain. This was discovered by MRI and surprised everyone. Hers was a difficult birth to, but the type of injury is consistant with an event in utero, probably a failing placenta/umbilical chord, well before the birth.

 

Good luck.

 

A x

[darky]

I understand how you feel. Ive never felt comfortable that my girls dx of PDD-NOS encompasses all her difficulties no matter how many times they tell me.

 

Its not just the symptoms of an ASD, its the ADHD and the Dyspraxia as well. Not to mention joint hypermobility, low tone, the fact that she has one ear that is sort of floppy and sticks out loads more than the other. when she was born her whole right side of her face was flat and squashed, her ear was crumpled up. its her very uneven profile of skills as well. her handwriting does not match her ability in english, she still does reversals but reads well. she even mirrors her writing sometimes. her maths is awful and she struggles with the basics. her understanding of language is very good considering its tough to get a decent conversation out of her. she does not make sense at all!!

 

shes just been tested for fragile x, as im not confident we have the right dx for her either. i have a gut feeling there is something else not right. she was born very very quickly, but i was bearing down in the car and trying to stop myself. we managed to get in the hospital and i gave birth there very quickly, but the cord was wrapped arround her neck when she was born. as she was so quick, we have no idea whether she was distressed or deprived of oxygen or not. she pinked up nicely though, and to be honest, with her physcial features, we are convinced there is something congenital. they just have not found it yet!

 

i could be wrong of course, but i just cant accept her dx as it stands.

[krystaltps]

There are loads of websites giving information about brain injury, however the problem is you really need to know what kind of injury it is, i.e. it's name. I discovered the vast amount of sites when R, DS2, was dx with grey-matter heterotopia (which causes his epilepsy). He received this dx after an MRI. You could request an MRI, but to be honest, I wouldn't fancy your chances. Would your DS be able to have one without anaesthetic? R was supposed to be anaesthetised because he was only 5 and couldn't possibly have lain still for 45 minutes. But they decided to try him without it and he fell asleep (apparently unheard of) so all was well. If anaesthetic is necessary, you won't be able to go private (I tried for R as the waiting list was 9 months). However going private is an option without anaesthetic.

Can't offer any info about the legal system though, R's lesion is developmental.

[dolly]

i have a gut feeling there is something else not right. she was born very very quickly, but i was bearing down in the car and trying to stop myself. we managed to get in the hospital and i gave birth there very quickly, but the cord was wrapped arround her neck when she was born. as she was so quick, we have no idea whether she was distressed or deprived of oxygen or not (quote)

 

 

I have often thought the same thing. Whist in labour the mid wife told me she wasn't going to examine me she'd leave it to the night staff. When they came to look at me it was like something off ER as they ran pushing my bed to delivery. I dont remember if they said they were checking if the cord was around Kofis neck or if it was . He was born in 10 mins then screamed for at least an hour . I have often wondered if he'd been deprived of oxygen.

[smiley]

Hi Frag <'>

 

M has an arachnoid cyst on his right frontal lobe. It was found during an MRI scan back when he was around three (as others have said - the MRI was because of problems with fits)...

 

http://en.wikipedia.org/wiki/Arachnoid_cyst

 

At the time i was fobbed-off and told it was nothing. This past year i've been pushing and pushing for another MRI to see if/how it has developed and to find out if that growth can/will impact on his development etc...etc....

 

If your unhappy - go with the gut feeling and try to find some answers. Try his consultant first - not sure how things work upside down where you are!

 

Again, not sure of the aussi-legal system, but i did sue when a hospital gave M ten times the amount of morphine after an emergency operation when he was nine months old - he ended up in ICU for just under a week and i've always wondered if that had something to do with the difficulties he has now.

 

<'>

[Frangipani]

Thanks everyone <'>

 

Wow you all know how I am feeling as you are going through it too. It just doesnt go away does it. Those what if's.... always keep coming up. Obviously for all of you too.

 

I am a firm believer if your instincts are trying to tell you something listen to it.

 

I think a lot of us put of further testing because of the stress involved. I know I have, felt I needed to be in the right frame of mind before I could go down this path.

 

I think up until now I have been a bit fragile and didnt think I could handle knowing if there was something more. I have never considered an MRI before, I am truly curious to see how my boys brain looks on one of these scans. Surely either way good or bad, it will put my mind at ease.

 

My sons Paediatrician is awesome and one of the best, and I agree he is truly spot on with ASD & ADHD but like you I feel at times there is a whole lot more going on.

 

Maybe my son could be entitled or need some other therapy. He has been on meds for so long and everyday I worry about them. Surely there has to be another way. Perhaps an MRI might be the first step as well as talking to a Specialist Neurologist. I feel my son is 19 its time to do something for the future. He may be entitled to compensation if it is medical negligence.

 

Who knows what I will achieve but maybe the time is right for me to get some advice.

 

I hope you get some reassuring advice to when and if you are ready. There seems too much weight on ASD here in my opinion, with my son anyway.

 

I hope you all get some answers if you are in the same dilemma. When you are ready though.

 

I maybe a stressful pursuit.

 

F xx <'> <'> <'> <'> to you all <'> <'> <'>

Edited May 13, 2007 by Frangipani

[florrie]

I really relate to this topic my son was born with corn round neck and dent in head where they tried to stop him being born, my mother was shocked at the time but i was young and naive and never questioned it even when he developed problems I 'd forgotten about it but now i wonder, he also went into a coma with mysterious virus after mmr, he definitely has braindamage in my opinion but what caused it for certain I don't know. I can't prove any of it and I can't make him go for a brainscan as he is an adult now, but what is so frustrating is he can't cope I Had a breadown becasue i didn't know what was wrong and all i wanted was that he wasn't suffering which I felt he was struggling to cope, and if I brought my worries up to anyone about it I believe they would be ridiculed and that gets me so distressed that i bury my head but it is such a worry and I also don't know what to do about it, as he doesn't cope but pretends to everyone that he can because he is embarassed

[Frangipani]

I really relate to this topic my son was born with corn round neck and dent in head where they tried to stop him being born, my mother was shocked at the time but i was young and naive and never questioned it even when he developed problems I 'd forgotten about it but now i wonder, he also went into a coma with mysterious virus after mmr, he definitely has braindamage in my opinion but what caused it for certain I don't know. I can't prove any of it and I can't make him go for a brainscan as he is an adult now, but what is so frustrating is he can't cope I Had a breadown becasue i didn't know what was wrong and all i wanted was that he wasn't suffering which I felt he was struggling to cope, and if I brought my worries up to anyone about it I believe they would be ridiculed and that gets me so distressed that i bury my head but it is such a worry and I also don't know what to do about it, as he doesn't cope but pretends to everyone that he can because he is embarassed

 

This is the exact same fear I have about my son Florrie 'he pretends to everyone that he is okay because he is embarrassed.

 

Well Florrie now you know 'dont feel ashamed about discussing this' its better late than never and with the internet we are soooo lucky to have access to things people never had 20 - 30 years ago. It may put your mind at rest once and for all to ask these questions. I think the doctors have more information and answers today. The MRI is improving all the time.

 

I hope you like the others get some answers Florrie, it could be a huge weight off all our shoulders just getting some more answers.

 

F xx

[Flora]

Hi Fran

 

Bill had an MRI brain scan when he was a baby because of fits; there was no brain damage but he was found to have extra fluid on the frontal lobe which is apparently indicative of a neurological disorder.

 

Personally I think all children with ASD or/and ADHD should have a MRI scan.

 

Flora

[Frangipani]

Hi Fran

 

Bill had an MRI brain scan when he was a baby because of fits; there was no brain damage but he was found to have extra fluid on the frontal lobe which is apparently indicative of a neurological disorder.

 

Personally I think all children with ASD or/and ADHD should have a MRI scan.

 

Flora

 

Hi Flora,

 

I am certainly going to request that he has one even if I go to another doctor to get it done.

 

I often question WHY didnt his doctor say to me its in the interest of our child to have a Caesarian the midwives were with me most of the time, in the 20 hours the doctor came in twice but was happy for me to try and proceed with a normal birth.

 

I remember when I was young a knew a girl that had absolutely no feeling in one of her arms and she said it was because of a forcep delivery.

 

When you google forcep delivery and 'rotation' like my son had there are so many people suing.

 

I dont honestly think I would achieve anything going down that path, seeking legal advice might feel good, but my feelings about it today are different to yesterday. I guess the doctor could say 'I saved your son's life' as he was in distress and he had to do this to save him.

 

But in my heart I believe today his birth is contributing to his disabilities and I agree the MRI has improved out of sight, and maybe we may all learn something about my son.

 

Just reading the replies above assure me of this. I just want some more answers.

 

Thanks again for sharing <'> <'>

 

F xx

[florrie]

Thanks for you message frangipani, how old is your son now,? I hope you get answers, when I had a breakdown the doctors struck me off register obviously at the time I didn't know what the problems, and there were other things going on at the same time, unfortunately the other doctors I've been too seem to be on the defensive for some reason, and seem to go out of their way to be obstructive and harmful, they get clearly irritated and rude if I express my concerns so I don't feel confident enough any more. I don't mind what they think of me but the fact that it has indirectly harmed my son I find very hard.

 

Keep us informed on how you get on with this? I really wouldn't know myself which way to go about it, I think it is too late.

Edited May 9, 2007 by florrie

[florrie]

Thanks for you message frangipani, how old is your son now,? I hope you get answers, when i had my breakdown the doctors struck me off register obviusly at the time I didn't know what the problems were exactly unfortunately since then the doctors seem be on the defensive for some reason, and seem to go out of their way to be obstructive. I don't mind what they think of me but the fact that it has indirectly harmed my son I find very hard. There is no one else to change too

 

Keep us informed on how you get on with this? I really wouldn't know myself which way to go about it, i think it is too late.

 

WHOOPS actually I don't know how the above quote got there it looks a bit weird as it saying the same as my above message, so please ignore

Edited May 9, 2007 by florrie

[dooday24]

reece had a really drematic birth, i was induced then they used the suction cap and forceps, and then he suffered with sleep apnea for 14 months his oxygen levels used to go below 4 wen he was asleep and the hospital r saying there is no chance this caused any of reeces problems but im not convinced!!!!

[Cariad]

When my son was born he had shoulder distortia, he was almost 3 weeks late and was starved of oxygen. When reading the hospital report it said nothing about him going purple and not breathing. He was floppy and didn't sit up till 12 months old and walk very drunkly at 15 months.

 

They thought he had a brain tumor, he has had 2 MRI scans, it shows his brain didn't develop on the one side and is smooth. We have tried legal advise but they say the brain trauma is from the womb not at the birth, so we have nothing. My son has ASD, ADHD, Tourettes and mild CP. It'll be VERY hard to prove and to win against the NHS is near impossible.

 

I wish you all the luck in the world, i hope you get further than we did.

[Frangipani]

Thank you <'> <'>

 

 

F xx

Edited May 13, 2007 by Frangipani

[Frangipani]

My ex did the unthinkable.

 

He confronted my son with the above. I didnt want to worry my son. Just wanted to go and get the tests done without too much fuss. But oh no, he had to come over and say you know that your mum is having you tested to see if you are mentally retarded. and wants to sue a doctor from 19 years ago.

 

For ten years he hasnt spoken with a doctor or teacher. I discussed his tactics with a counsellor and they suggested I take an AVO against him so he cant have any communication.

 

I spoke with his Paediatrician and said that I insisted he talk with him and until he does he is no longer welcome in our home.

 

He is looking to buy a new house is just trying to fob off any responsibility for his children.

 

We had the test for Fragile X done and have to wait a month. Once that comes through we are going on with the MRI but this time my son knows everything that is happening.

 

I am lucky my ex lives interstate and was not in the house when he did the unthinkable, as I would have done the unthinkable to him to shut him up. Never been soooo angry in my whole life.

 

Now I am waiting with my son for what the tests will reveal, and not sure where we go from there.

 

My son has been constantly hounded by his father with information for the army and he still refuses to listen to his son who keeps saying, I will do it when I AM READY!!! Not to mention the step mum is taking all the credit for giving him the push. My son has held off writing a letter to both of them to stay out of his life forever.

 

We need your prayers right now. My ex has done tremendous damage, but my son realises I kept it from him as I was trying to protect him. He didnt need to know. Unless it was absolutely necessary. Now I wonder what is going through his mind.

 

Well I know he isnt mad at me and still loves me, because he has woken me up for the past four mornings at 5.30am as he knows I wake up to do a prayer session every day at that time, and he has come in with a cup of tea and a cuddle to let me know he is okay. I hope he is okay. Just spending lots of quality time with him.

 

I advised his doctor that he could try and educate his father, talk to him for two hours about ASD etc and he will still say whatever, then go back to being a twit as per usual. Going over ground he is soooo ignorant and STTTTTUUUUUUPPPPPIDDDD!!!!!

 

[smiley]

 

<'> <'> <'> <'>

 

[Frangipani]

Could the Moderators move this off General Discussion and put it in Help and Advice please.

 

Thanks

 

F xx

Edited May 20, 2007 by Frangipani

[dolly]

Sending you loads of these <'> <'> <'> <'> stay strong

 

 

 

Dolly XX

[Kathryn]

Moved as requested, Frangipani.

 

<'>

 

K x

Edited May 20, 2007 by Kathryn