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Phoenix thread.

(15 Posts)
misscutandstick Thu 21-May-09 07:53:09

"was it the Salt who Dx'd?"

and what sort of communication aid was mentioned? How do you feel about it?

We have Paed Appt this afternoon (2pm), and Im going to ask for MRI, but dont know which hospital has one, dont think the local one has one, so it might be a while. Also going to ask for Angelmans to be ruled out (i dont think it is that, but just need to cross it off list) - he has (WARNING PMM APPROACHING) a vocab of around 70signs, and im sure that most children with Angelmans dont usually manage that amount. Admittedly a good 2/3 are animals and transport, with a few foods thrown in. Doing a couple of prepostitions, but have steared away from colours, dont want him thinking that the things on your mouth are called 'reds' and the thing that contains fingers is a 'blue'. so really not sure how to tackle it TBH.

Hows your DS 's signing going? have you encountered the same problems? i know we were doing double signs at the same time, hows it going?

Phoenix4725 Thu 21-May-09 08:10:15

yep it was the salt that dx him with it funny enough was going ask her if it was but she beat me to it .

looking at something lite and liberator will know more next month when we go back.Felt sad as shes said hes at the most severe end of it and that realistically will never have functioning speech ,but pleased at least have reason whe hes never ever talked and can now look forward.

Signing is going well and seems that ds now has blue we lived blue for 3 weeks or so blue pain,blue pencils blue toys , even blue mash lol..Were still working on 2 signs together and yes ds is a lot of animals and transport with food thrown in for good measures

Waiting for paed to get letter from neurolgist we saw at Bibic then will be on her arse make sure she refers us to him.We only got part of the answer still no reason why hes delayed.

fingers crossed for paed today let us know how it goes and yes i wondered about Angelmans. but ds wants to communicate so.badly and facially he does not look like.

They do seemed to be certain hes not Asd but im still on fence about it. .

misscutandstick Thu 21-May-09 17:12:06

hi im back...

always feel a bit wierd after a Paed appt, do you feel same?

He has agreed to my request for an MRI, and he says that it wont take long for appt. we discussed the test for Angelmans but i didnt realise how detailed the chromosome CGH test was, so i dont think that it will necessary to test individially for Angelmans, as ANY anomally will be picked up by the other test - so no point in sticking him with more needles.

He told me some things that, well i dont know if I knew or not, but perhaps in the back of my mind? i dont know - but it was verbally pointed out, nicely of course, but still. It kinda went:
"well now, you've known <DS5> for 3yrs now, and so you have a pretty good indication of his future - an MRI wont tell you anymore than you already know. Of course it would be useful to see, but it WONT give you a Dx, it wont pinpoint anything. <DS5> has severe communication problems, and probably always will. Its likely that as an adult that he will have intellectual problems too, as his brain controls everything, you cant expect it to single any one thing out, its problems are going to seep into every area of his being, his mobility, his intellect, his language/communication skills are going to need a certain care thats special to him. Just as his education needs to be"

On asking for an MRI he said "i would be extremely surprised if there wasnt anything showing up on an MRI, because of his learning difficulties."

just wanted to write that down, not sure how i feel, a bit dazed I think. Thats what too much info does eh?

On the colours front, think we will go back to building blocks and tackle it that way...

Phoenix4725 Thu 21-May-09 17:19:33

howare you feeling misscutandstick i recommend large mug of tea and something a lot stronger once the kids are down.

yeah I think knowing and thinking it ourselves it ourselves but then having it told to us by someone else takes wind out of us .

sounds like paed is not going for asd dx ?.And that is more evidence for him needing a statement as well .Do you normally get a written report from the paed?.

Willthey look at what his delay is now know you said hes functions around same levelas my ds 18months or so?

misscutandstick Thu 21-May-09 18:07:19

DS5's Paed WONT label anyone. So even if ASD is in there somewhere he wont label it anyway. BUT he did say that if statementing requires the autism label then he is more than willing to put that down to make sure that his education doesnt suffer.

and no, we never get a report.

They are not particularly looking hard for a cause, they prefer to work with what they have and try and give therapys to help him reach his potential. they are only doing the chromosome tests and MRI because ive bugged them long enough!

Now you've been prepared for the worst with your DS's speech - you can hope for the best and hopefully you'll get something between the two.

<passes over the chocky bics, and a glass of fave tipple>

WE are off on holiday tomorrow - could probably do with it, let the info settle, and have a good time, see to life when we get back. XXX

Phoenix4725 Thu 21-May-09 18:22:01

have agreat holidaygrin .Yeah wish there give therapies here its case of yes he has problems and oh well get on with it thank god for mumsnet grin

Oh and if you want clear idea of where your ds is I would recommend Bibic

Phoenix4725 Thu 21-May-09 18:22:03

have agreat holidaygrin .Yeah wish there give therapies here its case of yes he has problems and oh well get on with it thank god for mumsnet grin

Oh and if you want clear idea of where your ds is I would recommend Bibic

Phoenix4725 Thu 21-May-09 18:22:03

have agreat holidaygrin .Yeah wish there give therapies here its case of yes he has problems and oh well get on with it thank god for mumsnet grin

Oh and if you want clear idea of where your ds is I would recommend Bibic

misscutandstick Sat 06-Jun-09 08:59:57

we did indeed have a great holiday - thanks!

just wanted to update: been to Paed and DS5 is going to have an MRI, apparently waiting list is about 3mths. Any more news on your end?

Phoenix4725 Sat 06-Jun-09 09:04:54

yea ds has apraxia so speech is not likely to come ,and we got appoment end of this month see neurolgist at GOSH for mri and follow up regarding weekness in lower body and lol our ds would both have dimples seem to like doing it together

But on postive side ds is now doing 2 signs together big dog little dog etc and nw lerning colours .

misscutandstick Sat 06-Jun-09 09:22:08

yeh! i heard on the other thread its wonderful news!!!

Im a little bit reserved on the colour/size thing... im not sure if hes ready to understand that concept yet and dont want to confuse him. The SALT wants me to teach 'want', i suppose its an idea.

Im sure you must have looked into the dimple thing - that its very often a form of mild spina bifida, which in turn would explain the weekness in his lower half. Hows his toilet training? i know quite oftemn that is delayed because of damaged nerves too.

Phoenix4725 Sat 06-Jun-09 09:31:11

hes got no intrest in it at all is still in nappies .Yes i looked into it they didsay at 6 week check there keep eye on but forgot it and funny enough the neuro we seen has mentioned spina bifda so wont be to unsuprised if that show sup on Mri but am curious what damage to brain it will show and which area

misscutandstick Sat 06-Jun-09 09:51:32

do you think it would show damage and malformation up differently?

im not looking to apportion blame. I had a home-birth with DS5 I had 2 to 1 care with 2MW's, and i certainly would not have received that in hospital. And it really wont make any difference if he was grown the way he is or if its damage thru birth - hes still my little chappy, but im just curious.

Phoenix4725 Sat 06-Jun-09 09:55:33

there is some though thought that ds might had prenatal stroke which is just one of those things ,think they want get edea ofwhere and how bad damage is.

yep same here wont change anthing but might gve us better idea to get extra help

misscutandstick Sat 06-Jun-09 10:06:07

it does make you wonder tho if ALL problems are caused by the same thing - kinda like a chain reaction, or if the poor child is just like REALLY unlucky and might just have had the odd minor blip in different areas if he had not been so unlucky...

TBH im not a big fan of co-incidence, random incidents DONT JUST HAPPEN, usually theres a good reason why 2 or more incidents occur at the same time...

i do now feel tho that i can see a tiny light at the end of a very long tunnel on the front of Dx. I think that between the detailed chromosome analysis and the MRI, I should get some decent answers, well at least thats what im hoping for grin

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