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Would you mmd telling me about your first CDC appointment (pre-school)?(8 Posts)
DD has been given an initial appointment, it's at very short notice (3 working days!) so I'm on my own (Mum Jury service, dh working). It's with the child development team, DD is just 2.
I'm REALLY nervous. I'll admit I'd actively pushed against it, asking for DD to be discharged (long story, please don't judge). I've had a initial visit from a CDT nurse, they've requested DD's medical history from the GP. The letter says
'An appointment has been made (and agreed with yourself) for DD to see a paediatrician and other relevant professionals/ teams'
WHO is likely to be there? What will happen. I've had a bit of a poor relationship with the nurse who visited so maybe I'm more in the dark that usual.
I'm very very nervous. It says 'as part of the appointment there will be an opportunity to discuss your child's progress' but I'd presume that and wonder about the rest. It asked to bring both parents a relative or close friend, but I can't.
Any experiences would be WONDERFUL to hear, the only thing that scares me is walking into the unknown so hearing other stories would very much help.
I'm a little lost in concerns.
Initially, diagnosed hemiplegia at 11 months. Mild and FANTASTIC progress. Some delay in motor skills an a new-referral to cdc at 19 months. Wobbly, uncoordinated, struggles to roll at times and stairs but very much getting there. Rigidity gone to the extend that she's amazingly double-joined on that side.
Sleep, from hell.
But, speech and language since referral has been the focus of chats. Very little speech, BUT lots of songs. Nigh on feck all understanding of language, but signs a bit.
Not a fan of people, but very loving to familiar people.
Possible absence seizures (a bit maybe, 3 spells of rigid staring, around 1-2 min, with no getting through, then normal after)
Forgot to say, did not see a hv for a LONG time, previous input was hospital based so no cdc. MRI was normal.
Not sure how it works in your area but our route to the CDT was via the peadiatrician. Meetings with the pead involved chats about ds developments and she sometimes got him to do a few puzzles/little tasks. When we saw the CDT it consisted of a specialist nursery nurse and an OT. I think a salt is often involved as well but was we were already under NHS salt we didn't see one with the CDT (annoyed me as we barely saw one under the NHS salt either). The two of the came for a chat with me and play with ds at home first for about an hour. They then visited him in nursery a couple of times (seperately) and finally came back for another chat with me when ds was at nursery. We got a report a few weeks later.
Well, it wasn't as bad as I feared. Only a paediatrician. Initial development questions, I detected a hint of suspicion (e.g. Q-why did you go to different hospitals? easy A-my GP just booked for us, no choose and book). I had though had words with a cdt nurse so I expected it, it quickly cleared. I had been upset the nurse because she had looked at an old report about hemi and treated me like I was in denial when I said I felt dd had progressed to an unnoticeable point. She'd also implied I didn't care about dd because I disagreed with her advice, The paed agreed thought she was now age appropriate broadly with motor!
She listened, did puzzles brushed a dolly's hair etc.
The outcome fits with my thoughts, dd is on the low end of 12-15 months for receptive, and nearer 18 months expressive (she's 24). She said potentially, if she'd taken nursery rhymes into account dd could be even higher expressive, though she made no words in context.
Initially I just felt relief that someone saw dd how I do. She behaved beautifully throughout, I was very very proud!
She will contact the hospital about an eeg, said dd would be very young but still check.
She even listened and considered my view that dd CAN hear well, that the distraction hearing test was unsuitable as dd doesn't switch attention easily.
Forgot to mention sleep.
I should have asked more questions:
-is that a severe delay?
in particular, or what does this mean for the future? why is this a cut referral rather than just salt?
She said she would talk to SALT about suitable groups and see dd in 6 months time (hmmm on that, she was heavily pregnant. good luck to her and I wish her the best, but it's a shame as she was very good)
I'd be grateful for even any vaguely similar stories and experiences.
Hiya, my son is hemiplegic (right) he is nine now. My only advice to you would be take all the help you can get because things do change as they get older (some better some worse) but when you get to school it is very helpful to have "history" to access help (if you need it) later on.
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