speech delay/disorder helpadvice please

[Phoenix4725]

after picking brains here

Ds has got gdd,mld hypermoblity and hypertonia ,Hes about 18months -2 years behind

But his speech is non existant he never baby babbled at all, receptive language is at the one word level.we use makton which he is now doing very well at .

his salt feels theres some brain damage at the area that controlls speech though not been scanned or anything,have had hearing check and this was fine
the paed feels he not got a ASD ,But am wondering if anyone has delt,come across something similar as everyone seems be lost to reson why or how to encourage speech or prognosis

I think these things are quite vague in the end - How GDD is distinguished from ASD - A boy in DS2's nursery has GDD but without the phsyical delay, he is text book ASD. I think the advice is much the same - find out what he responds to - Sign, Pictures, Simple Words. I wish I could suggest more. Could you get a brain scan ?

he does respond to signs now took 18 months of signing before responded but he does real well now can ssk for all sorts of things and were at the one word receptive laungage skill
But guess itsmore the curiosty with the lack of speech/babble as even his salt is bemused by it never did animalsounds etc

hes delayed right across the board physical to though this could be down to the ypertonia and hypermoblitly the latter is defintley genetic in our case
as ds 1 and dd1 and me all suffer but not as bad

Hi, phoenix, dd2 (3.1) has speech delay, she has just started to say a few words which seems to happen whilst ussing PEC's of Makaton. Dd2 has not got a dx but we have been told to expect HFA/ASD, i was told that not many ASD children can use makaton but dd seems to have picked up a few signs. I was also told that babbling is a good sign.
This week dd2 has started sounding out the letters in the alphabet and i am hoping this will improve her speech (by making the sounds).
Before we started PEC's dd2 was in her own little world, PEC's has brought her out and now i can comunicate with her, today she asked for a biscuit 'biscuit please' whilst signing .

we got no babblinging or anything still hes 3.9 ,=hes can use 2 makton signs together though and he can now point to and wave

the paed is admant hes not on the ASd spectrum bnut is at a loss to explain the lack ofprogress in his speech/sounds

but pleased your DD is talking

HI Phoenix
DS2 never babbled, no sounds at all. Apart from the odd cry was a completely silent baby.
His dx now is mild CP & asd, but for a long while it was gdd & CP.
Because of the CP dx we know there must be some brain damage but he has never had an MRI. Lots of ultrasounds on head when in SCBU (born at 28 wks) but nothing showed up then.
He is 6 now & his last salt assessment his language was age appropriate BUT he has word retreval & structuring problems so still finds communication difficult at times. The salt commented that as well as a common problem with ASD it could indicate specific damage to the speech area???
But who knows, his paed thinks it may be genetic now so waiting for those results?
Confuse? Me too!
It is good that your ds has picked up makaton

am wondering if its worth askin for referal to neurolgist see if theres anything admiss, that might show on scan etc has anyoneelse done so

think going have to consider it even salt is at loss to explain why no laungage at all still or progress towards other than she feels is some damage to area of brain tthat controlls

Phoenix, we've chatted before (im sure you remember! i really did want to chat via email but lost the thread - if you still want to my addy is misscutandstickatyahoodotcodotuk)

Its brill that your DS is now doing the odd 2 signs!!! what wonderful news! We are still are at the one sign and not really requesting but naming and commenting - but we have the rare request like 'apple' and 'shoes'... isnt it strange how alike they seem to be?

Our SALT seemed to think that the reason that DS5 didnt babble either is due to Oral Dyspraxia - but he can drink from a cup, suck a straw, blow a candle and his latest party trick: pucker for a kiss (well nearly ), so the SALT is very hopeful. DS5 has almost mastered pointing too, just recently!!! (hes 2.11y). DS5 has Fortnightly SALT, for 1hour. But i really dont think its doing anything for him at all. Portage however, is brill and its done wonders for him.

DS5 has had hearing checks too, and his is fine also. DS5 understands about 40 single words, but has very little understanding on the whole. Our Paed too thinks that ASD is NOT the problem, but wont offer a guess as to what is. The geneticist seems to think that it may be a minor chromosomal problem due to the lack of understanding, or learning difficulties.

As to what as already has been said (WRT brain damage) - DS5 was a homebirth, and as lovely as it was, it did have one minor hiccup...

The labour went as it should until just at the point at which he should have arrived (being number 5, i know when he should have arrived), BUT (WARNING TMI!) he got stuck behind my cervix (OWWWW!!!) and 2 contractions later he still hadnt arrived and a small trickle of blood started - the MW assumed that the placenta was peeling and she eased him back in, 'unhooked' my cervix from where he was stuck, and delivered him in the next contraction. Labour was 7am (waters going) DS5 arrived at 11.10am. so if brain damage occured it cant have been much (i say naively ). I dont know if it had any bearing on how he is, or not, but i wanted to mention it anyway. Our Paed has never seen DS5's birth notes...I kept them, or the very little that was written at the time.

Oops sorry seem to have rambled a bit

Sorry, it took about 2hrs to write that between sorting out the kids!

We are going to ask for an MRI the next time we see the Paed. TC - good idea about the neurologist, might pinch that too and ask for referral.

Hi Phoenix, My son started talking with Biomedical interventions. We took dairy and gluten out of his diet (later followed the GAPS diet by Natasha Campbell McBride) and added probiotics, fish oils and enzymes and he began talking.

Absolutely TC! many thanks. just got back from holiday, will catch up with mail tomorrow.

Sassor, we removed gluten, dairy, eggs and soya from DS5's diet and although it improved his behaviour, and his attention/concentration (he was the epitomy of ALOOF before), added the oils and such, he still doesnt have speech or understanding.

have thought about the diet but trouble is removing gluten ,dairy from ds diet would mean he be eating hardly anything at all.

his behaviour on the whole is pretty good less he is frustrated when no one can read his signs ,his concertration can vary if its something he wants to do he sok or a adult can help keep him focussed long as not stuff goingon

missscutand stick
ds can use a cup and a straw but he can`t blow at all or pucker up for kiss he looks like hes about to bite when he goes in for kiss so salt is totaly confused re Oral Dyspraxia
tc

tclanager
we do have appoinment for EEg this isdue to queary that hes having lots of mini abscences ,I have noticed for long time but its only when proffesional like his salt have seen that they started listerning though think will struggle as he hates his head touched

will be first one and no we have not had any scans at all

misscutandstick

my addy is [email protected]

and a sfor his sleep or lack of dont get me started on that why often see my posts at silly oclock

i understand your feelings about diet Phoenix DS5 doesnt have: gluten, wheat, soya, dairy, egg, banana, annatto - it is an absolute PITA, shopping is a nightmare and we cant eat out anywhere unless we picnic, and home cooked meals, well i always cook at least 3 different ones and there are some quite wierd concoctions sometimes (I cooked a full-english-breakfast-sweet&sour-stirfry last night , the kids dont care so long as its food they like to eat) - but the difference it has made to him is literally unbelieveable and well worth every grind of teeth and headache. Im not trying to back you into a corner, im just being realistic about what its like for us.

Just read the bit about the 'absences', oooh i find that very interesting - DS5 used to have loads and i was kinda worrying about epilepsy of some description too, but now he doesnt do it at all. Another mum on here was asking some time ago about the possible connection between dairy and absenses as when her DD was on milk she had them and when she wasnt she didnt. A few people agreed with the possible connection, but i dont think anything conclusive (medically speaking) has ever been proved, probably due to finance i bet .

"... ds can use a cup and a straw but he can`t blow at all or pucker up for kiss he looks like hes about to bite when he goes in for kiss so salt is totaly confused re Oral Dyspraxia..." So does this mean your SALT thinks your DS has oral dyspraxia or not?

shes on the wall the fact that he can1t blow or pucker up would point towards it but becaus ehe can use a straw and a cup points towards no

But she agrees there somethng more going on that is beyond her scope as a salt shes helping with communication as in makton but is now at a loss to explain why he cant talk as he does not fit into a paticular catergory,
and agreeds that maybe a mri or ds seeing a neurolgist might not go amiss she also wondered if there might be issue with his voice box

So next week will be some phone call and the I demand would lke a referal conversations

phoenix my ds2 couldn't blow (it all came out of his nose) or pucker up his lips. It turned out he has a sub mucus cleft palate. It was only picked up on a particular type of xray and he had it repaired last year. The op has helped in that he can now blow, he also has hypotonia and I think that it clouded the issue in as far as getting the palate looked at iyswim.

He also never did baby babble and at five there are sounds that he cannot make at all. He is also moderately deaf.

How is the tone and pitch of your sons voice?

he has various pitches of grunts and squeals which is all the noise he seems to make .Hearing wise they done tests and said its absolutley perfect

we only get 'throaty' noises too.