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I think my DS's diffcult birth is to blame for some of his problems, but they will never admit it!

(35 Posts)
genieinabottle Mon 19-Jul-10 14:22:07

DS is 4.8 , he has autism (HF). More than likely genetic cause as we have some nephews and cousins with ASD and ADHD.

But DS also has a speech and language disorder dx.
Expressive and receptive language delay/disorder associated with the ASD no doubt.

But we have found out that his speech disorder is called 'dysarthria', and it is caused by an injury/trauma to the brain's nervous system.
DS also has a defect with one of his pupil which isn't dilating properly. He was seen at 4 months old and 13 months old at the hospital eye clinic for this. We were told he has been born like this and it was physiological. hmm

DS was seen by a cranial ostheopath at 4 months of age, who said the problem with his pupil could indeed be linked to a brain injury. He also comented on the shape of his head which indicated some trauma during the birth.

Here some background about his birth, let me know what you think please.
He was 11 days overdue and i was induced. After a good start, labour was stalling as he wasn't descending. They put me on oxytocyn to get stronger contractions, each time the dose was increased, his heart beat was drastically slowing. This went on for over 6 hours where they were uping the dose then lowering it as he wasn't coping well. He still wasn't descending properly and was stuck in my pelvic bones. Twice they inserted a tube to get blood from his head to check his oxygen levels.
I was in agony feeling his head hiting my back bone for hours.

In the end after 24 hours had passed since the start of labour, they concluded on an emergency c/s (class 2, so urgent but not life treatening), when they opened me up (they cut his cheek in the process!) his large head (36 cm) was literally stuck within my pelvis bones.
They had to prise his head free with the forceps to be able to lift him out!!!
Then they were fussing over his oxygen levels again, took more blood sample from the cord this time. And his apgar scores were only 7 straight after birth. His head was all bleeding on the top left inside, and it was oddly shaped for several months even though he hadn't gone down the birth canal!

I have a growing gut feeling this is linked to his eye and speech problems. But they will never admit to anything.
DS was never given a head scan or any test to check for brain dammage neither.

Maybe i should request one? Will discuss this with his community paed at our next review.
Maybe i'm jumping to conclusions confused

Sorry for the longggg post.

saintlydamemrsturnip Mon 19-Jul-10 15:13:51

It's certainly possible. Might be worth requesting your notes (others can tell you how to do that) before they go 'missing'.

When you say he has dysarthria what is his speech like? Often it arises because of for example a stroke or Parkinsons - but something like verbal dyspraxia can present in a similar way (if very severe) but doesn't have the same cause iywim. Has a SALT diagnosed him with dysarthria? If so I would be exploring that more certainly.

genieinabottle Mon 19-Jul-10 15:27:34

Thanks Saintly.

Well oral dyspraxia was 'mentioned' when DS started at the unit last year. Now they are saying defo not oral dyspraxia, as children with this tends to 'grope' for their words and their speech difficulties are inconsistant, getting worse with longer sentences. DS doesn't grope for wrords, and has trouble saying single words as well as long sentences, it's consistantly unclear speech.

His speech sounds are disordered, he can say more complex ones but has gaps and can't do more basic ones that are usually said earlier on.
Then his sounds are limited, especially with his consonants, a lot of them are coming out as 'N' (like nanny/daddy comes out the same).
He sounds quite nasal, SALT sAys the flap at the back of the throat is weak, and not closing off the nasal airway so sounds come out through nose instead of mouth.
Also his tongue and lips aren't moving as well as they should when he speaks.

To give an idea, my mum (who doesn't speak english) says when she hears him talk he sounds like a deaf child talking.
Although he has got better and is 'clearer' than a few months ago.

I'm very confused

genieinabottle Mon 19-Jul-10 15:33:57

Sorry re-read and not very clear with my wording,... Meant he can't do basic sounds that are spoken earlier in a child's speech development.

Also precision DS is not deaf, he has had two hearing tests to check. smile

phlebas Mon 19-Jul-10 15:37:46

Genie, that sounds so much like my ds. Many of his consonants come out as 'n' (although his production does get more unclear with increasing utterance length) & he sounds very much like a deaf child talking.

(we're working on the assumption of oral/verbal dyspraxia (e.g. do lots of cued articulation etc) since SALT won't consider even assessing speech production until he is 4.5 angry )

saintlydamemrsturnip Mon 19-Jul-10 15:44:57

My son can't produce many speech sounds at all (mainly vowels, a few consonants). He's never had a proper SALT assessment of his speech (rolls eyes as he's 11 now) but his diagnosis is verbal dyspraxia. That is very severe but I'm not sure he has oral dyspraxia at all. Doesn't drool and eats without problem, sticks tongue out etc.

If dysarthria has been dxed I would definitely be following it up as that is not what you would expect in autism - even for children like my son who barely speak.

genieinabottle Mon 19-Jul-10 15:55:18

Phlebas, i'm wondering about whether they have got this 'dysarthria' thing right. Only a few months ago they were talking of 'oral dyspraxia'.

I know what they mean about not groping for words, but the sounds that he can't say at all such as the consonant 'd' for instance, if he can't say it in a single word he won't be able to say it in a longer phrase, it makes sense.
And personaly i find it is harder to understand some of his longer sentences than the shorter ones.

Also to be able to say for certain it is dysarthia, shouldn't he have a scan to show the damage to the brain to really confirm this?

Phlebas, can i pm you please?

genieinabottle Mon 19-Jul-10 16:02:17

They haven't given a formal dx of dysarthria. His dx is autism and speech and language disorder.
So speech and lang. disorder is a catch all kind of dx in my books. Not precise at all.

Dysarthria is the verbal opinion of the SALTs who see DS at the language unit, not the one who did his dx assessment. She merely said 'expr/recep delays/disorder, and a speech sound disorder' she didn't give much details.

ShadeofViolet Mon 19-Jul-10 17:37:12

I dont know if there is anything behind it OP, but I have felt the same for a long time.

My DS was born after a shortish labour (8 hours) but he became distressed and had to have a ventouse delivery. He was born with a large lump on the right hand side of his head. I was told it would go down but its still there, though not as prominant as before and he is 3.5 now.

He has a severe delay and his receptive language is about 3 years behind. His voice is also very nasal - he sounds like he has a constant blocked nose, and he also lisps. He cannot pronounce 'l' sounds, or any sounds where constanants are together like St or Sl. His official DX is ASD and I do agree with this as he has some sensory problems and many social ones, but always at the back of my mind I think it might not be as clear cut as that, or the two things combined.

ShadeofViolet Mon 19-Jul-10 17:38:22

sorry it should be that his language is 2 years behind.

AgnesDiPesto Mon 19-Jul-10 21:47:46

Genie
They won't ever admit it because you would be alleging medical negligence which has caused birth injuries and this carries alot of compensation if proved. Hospitals would never ever admit fault without legal advice.
You can get answers by going the legal route - you need to go to a medical negligence solicitor and ask them to get the notes and indep report to see if fault. Your son would get legal aid in his own right to look into this - it would cost you nothing. Many cannot be proved because you have to prove fault eg that they should have realised your labour was obstructed and delivered much sooner AND that this caused your DS's problems. This is more difficult not least because no-one really knows what causes autism - most cases involve CP which it is accepted is caused by deprivation of oxygen at birth whereas we don't know if this is true for autism. If an indep report found fault the legal aid would cover costs of scans etc to see if any brain injury etc and what that might be responsible for.
If you let me know whereabouts you live I can give you a heads up about good solicitors in the field. Or Chambers directory / Law Society website can tell you who is specialist.
It would be a long process - can take months to get reports - but the solicitor would do all the work for you.
If nothing else it might give you answers about what happened at the birth from a completely independent obstetrician.

saintlydamemrsturnip Mon 19-Jul-10 21:52:52

ds1 doesn't really grope for words. He just makes up his own. So naiya na na na is granny and grandad's house (he's 11 remember!). I've only seen him grope once - he was trying to say fish and chips and eventually with a lot of difficulty choked out 'chi (like a bark) un chi'

genieinabottle Mon 19-Jul-10 22:57:36

Thank you everyone for replies.

AgnesDiPesto, thanks for all the info about the legal route.
I don't know if i'd have the guts/strengh/patience to go through all this, even if it isn't me doing the work directly, i'd end up worrying plenty over this.

I guess i will have a word with the CP about my concerns re: the link between the eye defect and the speech sounds disorder and see if i can wangle a referral to hospital for a head scan.

If she doesn't, then i 'll have to forget about finding out and just accept the somewhat vague term that DS has problems with his speech sounds.

saintlydamemrsturnip Mon 19-Jul-10 22:59:32

You could ask for a referral to a neurologist. We finally saw one recently and he had been brilliant.

genieinabottle Mon 19-Jul-10 23:38:55

Yes, that's an idea. At least i could ask more questions and maybe get 'some' answers, and the neurologist would refer if needed.

I might mention DS's blank moments too. I don't think for a min that he has epilepsy, but he defo has moments when he goes very spacey, blank expressions and his tongue pops out a tiny bit. Maybe worth mentioning.... although i think it's one of his asd 'bubble' moment.

saintlydamemrsturnip Mon 19-Jul-10 23:42:41

Oh worth saying you suspect epilepsy- that helps get a referral to a neurologist!

The neurologist spent over an hour with us - about an hour and a half I think. Was very thorough, is happy to see us again and ordered some simple tests and a genetics referral. We saw him with a paediatrician and they even talked about various diets and supplements (cue picking me up off the floor). We could have had more complicated tests (muscle biopsies, MRI's etc) but we all agreed that currently isn't in ds1's best interest.

saintlydamemrsturnip Mon 19-Jul-10 23:43:21

It was the first time anyone had considered what might actually be wrong with ds1 - rather than just saying autism (which of course is meaningless).

GalanthusNivalis Thu 22-Jul-10 17:14:41

genie,

From your second post it sounds as if your SALT has diagnosed Velo-pharyngeal insufficiency/incompetence (VPI). Here is alink to explain this www.cincinnatichildrens.org/svc/alpha/v/vpi/about/vpi.htm

My dd has this condition; at two she barely talked at all, at three she was incomprehensible to everyone except DH and me, like your DS she was nasal and the only consonant sounds she could make were'n', 'm' and 'y'. Also like your DS she did not seem to learn her speech sounds in the right order but the truth was she was physically incapapble of producing any other sounds until taught how to do so by her SALT and subsequently two pharyngoplastys.
The good bit is that she now talks normally - pretty much, and at 11 the SALT is about to discharge her.
Your sons problems may or may not be associated with his birth or his other conditions but either way it should not be untreatable.
Sorry, that turned out rather long, but I hope it was helpful.

genieinabottle Thu 22-Jul-10 23:13:54

Thanks for the link. I had a look, very interesting.
That's what indeed the SALT reckons, the flap at the back of his throat is weak and doesn't do its job properly, so the air is directed through his nose instead of his mouth when he talks.
That is exactly what she tried explaining.
DS also has some difficulties moving his tongue in the right position to make sounds.
But SALT called this 'dysarthria'. confused
Is it the same as this 'VPI' ???

diddymiddys Thu 22-Jul-10 23:19:26

i had a 73 hour labour with my son, again oxygen levels were checked via the wire to his head, he was born via natural birth eventailly, but now hes nearly 3 he has autisum (waiting to see how far on the specrum he is) poor eye sight, limited speech and i have felt that there was always a conection to the long labour

genieinabottle Thu 22-Jul-10 23:23:51

I've just read the whole thing.
It mentions the differents types, and one of them can be due to brain trauma (similar cause for dysarthria).
Maybe that's why the SALT called it that?

But how would the SALT know for sure he has had a brain trauma!!! confused
No one knows for sure if he has or not, he hasn't had any scans as of yet.
In fact i'm the one who is suspecting it.

Sorry i'm rambling with the 'what if' again...

genieinabottle Thu 22-Jul-10 23:30:07

Diddimiddys, cross-posted.

It is hard to remain objective isn't it? When your child have a s**t birth, then goes on to develop some SN.
I'm sure many of us suspect something went wrong at some point during the birth.
But with ASD, the causes are still vague for many so we're left wondering.
Oxygen deprivation 'usually' can lead to CP, no proved links to autism as of yet....

dounutbrain Fri 23-Jul-10 22:38:46

GENIE
Just read your post and your birth horror story sounds just like ours.
My dd is 4.3 and has the same speeech delay that you talk about.
Its very strange I cant get anyone to properly dx oral dyspraxia but def must be it,she would love to talk but just cant say above 5 words she has finally learnt mum and if im lucky some days its mummy smile cant say dad though just points to dh.
Have you tried any signing yet? it helps our dd and sometimes she tries to say it too.
Im very surprised they have not done a scan yet about ds eye problem not sure what they mean by psycologicalconfused
Will be looking up dysarthria as not heard of it.
Hope to hear how you get on when you next see consultant

genieinabottle Fri 23-Jul-10 22:52:14

Sorry not psychological... physical cause. They said he had been 'conceived and born this way' with a pupil that doesn't dilate properly. hmm

They saw him twice during his first year for his eye, did lots of tests and took lots of pictures of it. But no brain scan....as of yet.

I just don't know what to belive anymore. DS' autism doesn't explain everything, i can understand it being linked to his expressive /receptive delays but not the sounds problems nor the eye problem.
I have read there is a link between Fragile X, and speech disorders due to abnormalities of the back of the mouth.
Which is what the SALT reckons impedes DS 's sounds production, a structural problem possibly with the flap that closes the airways from mouth to nose, or a soft cleft palate problem.

But he needs to be properly examined for this. And we are also still waiting for the Fragile X testing.
So until we have done all the testing all i can do is speculate and worry ...sad

dounutbrain Fri 23-Jul-10 23:20:21

GENIE just a quick question how is ds with eating as we have problems with that too still mash dinners but dd can eat crisps ok.
Try not to worry to much,although thats easier said than done.
Will have to go now as dd has another cough why do children with additional needs seem to get ill more too?Thought we might have a couple of months off in the summer.sad
Take care x

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