MRI results revealed - some answers, not all.

[misscutandstick]

DS5's paed rang this morning and gave us the verdict of his MRI (DS5's, not the paeds!)

The paed said "he has a normal looking brain, but has some scarring to the back/bottom of his brain. The damage is symetrical on both sides. The damage was probably caused between 28-36wks because of the area of the damage. It was probably cause by either lack of glucose (energy) or oxygen or a mixture of both, not by a maternal supply problem or placental problem, but probably because of a tubal problem, either a knot, a kink, being squashed by the baby or the baby holding on too tightly to it. The damage doesnt necessarily cause any one particular problem it would affect many different things to a varying degree. It is likely that his growth maturity (ie puberty) will not be affected, however it is unlikely he will have the same level of mental maturity and responsibility that goes with being a 'man'"

hmmm, food for thought there.

dont feel that a weight has been lifted, but do feel that i have some answers at last.

I feel that even if he did not have any brain damage that he would still have had autism. But his learning difficulties and perhaps lack of speech and dyspraxia is due to brain damage.

just wanted to share. XXX

[sc13]

I'm glad you have answers at last, but it is still hard to take in. I know we don't do hugs on MN, but anyway

[wrinklytum]

Miss cut and stick [hug]

[WasUnderThirthy]

Just wanted to give you hugs too.

We had a similar experience with my 2 years old dd, she had a MRI when she was a few weeks old (difficult birth), and what that told us is that she could have minor problem that translate in major difficulties. It did not affect anywhere specific but could impact pretty much anything...Not fun to hear. We are hoping that her cognitive functions will let her live an happy & independant life.

Good luck

[feelingbetter]

Glad you got some answers.
Still 'wait and see' I suppose?

[misscutandstick]

many thanks for hugs - actually i rather like them, , it shows people care.

I do feel happier now that i have some answers, it obviously cant tell me how things are going to progress, but it tells me much of why he is why he is. I am convinced he would have been autistic anyway, and hes wonderful just as he is .

There is nothing that can be done about any brain damage (i know some prefer to call it 'injury', havent really opted for one or the other yet, but i suppose i should considering how many people are going to be talking about it in the future, after all hes only 3yrs, and i really cant have any guarentees at all about his independance and future). But hes young enough to be able to hopefully work around it a little, even if that takes a few years.

How am I affected?

Hmm, TBH I really do feel we've taken a huge step forward, just knowing why, and i dont have any regrets at all, I dont feel in the slightest bit sad, after all it wasnt going to change him having answers. But, strangely I feel that he is lucky, it could have been worse news.

I think that once you know the truth, it may be hard to handle at first (depending on the news), but its steady ground. Its not guesswork, I know where we are. Its easier to live with the truth however horrid, rather than simply not knowing and wondering.

YES! pipin, definately have it done, if it provides any answers at all then it will be worth the hassle.

[Phoenix4725]

glad you got your results misscutanstick.

Have they looked if he has verbal/oral dyspraxia or they putting the lack of speech down to the asd

[misscutandstick]

The speech therapist says its due to dyspraxia - he does have a very dyspraxic look to him , but she cant work out why he can drink from a cup, blow out candles, suck on a straw, but not be able to use his lips on command... he seems to do the other things by being spontaneous IYGWIM, when he tries to form his lips it just doesnt work at all, ie a dog noise comes in 2 bits: the blow out 'ffff' bit and then a noise without a formation.

The paed seems to think that its all linked to his GDD, that nothing is working in unison as it should, ie. he can grip small things (not pincer yet), but a pencil just escapes him completely, and its really difficult for him to make a mark.

Its as though he cant transfer skills at all, so he can do something in one instance, but lose the ability when hes trying to do something else that requires the same skill, ie. can blow out with puckered lips, but cant pucker for a kiss.

Dont kids with ASD have difficulty transfering skills too? Perhaps hes unlucky and has a double dose because of the asd/gdd combo. Does this sound anything like your DS Phoenix?

[Phoenix4725]

Ds has dx of verbal and oral dyspraxia he can suck a straw and drnk from a cup but not blow or pucker up and still no words or sounds and probably wont be

the grip thing ds is the same can pick up small things but cant hold pencil still grips it in fist .and ant do 2 things at once you see him stop pause then do it.But they have ruled asd out for Ds mind they not exactly spent long with him think his lat devlopment check was 15mins

Ds isgoing to need afos as what seemed just ankle problem is now affecting knees

But he goes to school in few weeks.How are you going with statementing/

[misscutandstick]

The statementing thing??? awful!

the appeal date was officially last thursday - so it rolls over until 1st Sept, obviously tho, NO_ONE works in august. SO we have ABSOLUTELY no reports, even tho i asked for them 3wks before breakup. i know why no-one gets them here - NO-ONE is prepared to back you up!

whats even more irritating is that the boundary between here (which is inbetween 3 separate counties, and we have children/husband in 3 different schools ALL have different holidays ) and the boundary of a council which gives them out relatively easy is approx 5miles away.

GGGRRRRR so for the want of a 5mile council boundary in the wrong direction, we would already have gotten one!!!

I have been to speak to head and they have re-arranged teachers/timetables so DS5 will be getting f/t 1:1, but its not a legal allocation and its actually split between 2 people.

I will be re-issueing a statement request when hes back at school, and trying a different strategy - stating that he cant possibly manage on the care he gets (hes borrowing hours from 2 different childrens TA's, which is not fair on them and DS5) and the school cant afford a 1:1 just for him, that he needs.... or something. TBH im taking a break from it all during the holidays, its wearing me extremely thin, and im exhausted. SO regroup over the hols, THEN mount a new offensive!