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Some good news at last, well sort of :-)(37 Posts)
You might remember that I posted about ds2 about a month ago. Well, ds2 had his follow up paed appointment today and the good news is that the paed reckons that he does not have Microcaphely. Thank god for that.
She confirmed the CP but he has recently started to try to crawl and take a few steps with support so I am sure that we will lose this dx if we keep up the Physio.
We met in the car park at Moondog's training event in B'ham
So glad to hear you you've had some good news re DS2. Hope your programme for DS1 is also going well.
Hi messmonster, DS1 is doing very well as well. he is no longer non-verbal. he is singing all his favourite songs, well at least we think he is.
Hope things are going well for you.
Disclaimer- I wasn't loitering in the car park hoping to pick up any mumsnetters by the way, I did actually attend the workshop.
That sounds positive, dev.
Are you sure you aren't a hairy handed trucker pretending to be female dev?
Ellen, I swear I have never pretended to be a female in my whole life and I am not a trucker either. I am however guilty of being male and hairy handed.
I am glad it was a positive meet for you about DS2 that made good reading.
Great that he is attempting to crawl too! Look out he will be into all your low level objects like DVDs soon
Dev, walking doesn't preclude a cp dx? Not sure if understand?
Microcephaly just means small head - it's good that head circumference is now catching up. Was there a suggestion that there were other underlying issues causing the microcephaly which were impacting development? (But have now been dx as cp?)
Thanks Coff, I was thinking of you earlier on yesterday. I hope things are going well for you.
Madwoman I think lose was probably the wrong word, I meant it in a beat the dx as in do as much work as early as possible on his physical and cognitive side so these issues don't affect him too much later on, I hope. Am an eternal optimist you see. Thanks for your tips and suggestions re feeding on the other thread as well. They are proving very useful for both ds's.
Good news indeed about ds2.
And lovely to hear about ds1's singing
dev crawling sounds so positive and it must be a relief to have one less thing to google about re. Microcephalic stuff.
Ans Ds1 is singing!
We will forgive you for not being female as always. Whatever their dx this is progress. Well done, all of you.
madwoman as I understood Microcaphely means small head, but it also means small brain which could have serious life limiting consequences.
Anyhow, would you believe it the last paed who saw him gave him the dx because she had read the charts wrong, ffs it's not like we have enough to worry about, oh no. I came out of that appointment with a shopping list of dx.
Thanks zzzzz, it is certainly a relief because I don't mind things I can deal with such as CP, fortunately at the moment it looks mild, it's the bloody unknown which I hate so loosing that dx is a massive relief.
Thanks Hazey, it is so funny watching him sing, he has been babbling for over a year and a half now so it was so great to finally have something recognisable come out of his mouth. I think zzzzz had it spot on about working on their confidence and the rest will follow. Once he has realised that he got a couple of words right, then he is trying very hard himself to come out with more.
at reading the charts wrong. Great news re both DS2 and DS1!
We'll the first pead obviously had her glasses on upside down I wonder how many other ppl she has worried before they trained her to read the charts!
It's no wonder we tend to trust our own instincts more as time goes on x
Dev how is DS1's sleep now? Any small improvements??
Glad to hear that the microcephaly dx was shelved. You really didn't want that.
I think reading charts wrong, must be quite common, dd1 was referred when she was 18 months, because she was below any centile for height, according to our (then) gp, she had bloods taken, he talked about growth hormones etc, we waited for ages for an appointment to come through, only to be told when we finally saw a paed, that the measurements were wrong and that she was actually 2nd centile for height (still short, but i am 4'11" and, well lets just say that dh is no giant!).
Whilst brushing ds's hair this morning (he loves having his hairbrushed), he signed 'more', he has never signed anything spontaneously - it is so lovely when they surprise you isn't it.
great news, dev!
dd1 started out singing - lots of babble as a toddler, then the odd (incomprehensible to anyone else) word.
then singing. lots of it. mostly identified by the tune at first, but then she refined and refined her word production through lots of practise (and the aid of a mirror/relfective surface - something she still does today for new words or facial experessions). and then expanded her song repertoire. and rinse and repeat.
yesterday, we had a full 5 minute conversation, with questions and new information volunteered from both sides - something I never thought would happen back when our only communication was singin alternate lines of her favourite song of the moment!
sounds like fantastic prgress with both ds's - well done you and Mrs dev.
I don't think I will ever trust a HCP ever again, especially GP's. some of them are worse than chocolate teapots, at least a chocolate teapot looks good.
Hazey, yay to DS signing, this is brilliant, we love surprises in our house. I still remember the look on my wifes face when he first copied a sign from a video unprompted, priceless.
sally, sleep is much better than before. he is still waking up but is going back to sleep quicker. We are going tomorrow for our third visit. We have tomorrow with Kate and then final one with Deidre before this treatment is finished and she is going to recommend someone in London for the follow ups.
That is really encouraging to hear Silver really encouraging. Thank you for sharing that. what you say fits DS1 describes ds1 to the tee.
I am very interested in what you say about the use of mirror to reproduce sounds etc, I am seeing Risca soloman for an assessment for DS1 to see if talk tools can be beneficial and one of the things she mentioned was the use of a mirror.
We have also started DS1 on a Gluten free diet on Monday so fingers crossed that should make some difference as well.
it would take a while, but I could see if I could look out videos of her speech progression if you want?
I found some old film of her when she was about 3 the other day - I could hardly understand a word of it, when I know for a fact (and there is evidence of it in the film) that I understood everythign she said at the time. the only comprehensible bit was when she sang 'bbbeeeeeee bbeeeee sssseeeeeeeee raaaaaadioooooo tooooooo' (no prizes for guessing what I listen to in the car!) with massive over enunciation and exaggerated facial gesture.
she has (completely off her own bat) long used any reflective surface to help her - when she was little it used to be to practise the shapes her mouth had to make for certain sounds - she would study us intently when we were talking and then practise moving her mouth that way (grossly over exaggerated at first, then refined down to fine motor movements). she can find a relection anywhere - a window, the laptop screen, actual mirrors, her cutlery at mealtimes etc. it can be a real hindrance, as these days she practises conversations rather than speech sounds - leading to her talking/singing to herself all the time - it's eaiser than talking to people who may say the wrong thing in reply!
she now practises mini conversations, using appropriate facial gestures - downturned mouth for sad, raised eyebrows for surprise etc.
dd1's speech really came on after she went gf/cf - well, her communicative intent did - see above for her speech refinement!
she is 8 now, and I would say she has been easily understood by others (clarity of speech wise) for a couple of years now, probably since she was 5 or so.
It's amazing to read your posts Dev, as it makes me look back to how ds was and see how much we have acheieved. He is already doing what I never dreamed was possible (or at least allowed to believe by bonkers professionals).
I also need your posts to remind me of the effort it took to get here, as his rate of progress was so incredible that I have to make sure I don't forget WHY. It didn't just happen, and I can't just sit back now just because ds has come so far.
It's ridiculous to imagine when ds is in the midst of a frought argument with his sister as I open a bottle of wine in the bathroom, - that I was ever willing to give my life for such verbal reasoning skills. - Oh DS still has a LOT of problems, don't get me wrong, but keep enthusiastic and determined for them and our children can go further than you might have been led to believe.
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