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I had a paed appointment yesterday to discuss everything to date with ds (16 months). So far the diagnosis has been movement disorder, then cerebral palsy, then just hypotonia with other issues, then a definate GDD & microcephaly... While this is just so much fun playing guess what ds might have, it's getting fairly frustrating as I'm starting to think that they don't actually know what they're talking about anymore.
At yesterday's appointment (ds observed at home for nearly 2 hours), she mentioned autism being on the cards (and has mentioned this at every appointment since he was about 5/6 months old). If that is what it's going to be, then it will be... but my question is has anyone's child started off their clinic route with movement issues being the main issue, and then it's gone away from that onto a social/language disorder primarily?
The lack of social skills and communication has always been there, but the movement issues were more noticable as the main 'symptom' hence the earlier thoughts to movement disorders. He also is now attending a CE school 3 times a year, and though they admit that his primary issue is not movement, they thought they could help.
I'm starting to get a little fed up as I don't know what to read up on anymore, and the professionals don't seem to really know what to suggest. Or is this how life in SN world is really, and I just need to adjust... which I'm guessing is the most likely answer!
Sorry for the ramble, but any thoughts on anything would be much appreciated.
I know very little about tentative diagnosis so early, so can't suggest anything constructive. I'm surprised that it was mentioned so early as 5/6 months, such early diagnosis is very unusual in UK.
TotalChaos, I'll try to get the book out from our library, or look in the bigger Borders down south this weekend. He used to grip his hands together in unusual ways, scratch himself & avoid looking at people (but would spend ages staring at the sofa or a wall...)... At 5/6 months old those are the only things I could think were pointing them to autism, but I really didn't have a clue back then.
He's had loads of tests which all seem to look for things he doesn't have! We were down in Ninewells when he was about 5 months old as he had an EEG & an MRI looking for the cause of possible epilepsy or another cause for his FTT. All results were normal for epilepsy, however his MRI showed up delayed myelination. They'll repeat the MRI at some point this year to see if it has improved at all. He's had blood tests which are all ok. We're about to start genetic testing soon.
He has OT, PT, ST and a play therapist, plus we go down the the CE school for 3 weeks a year... and he's about to start the disabled riding in the next month.
We have the child development meeting next week where they're going to put in black and white how he is right now... but of course I already know this all this. He has no idea what his name is, and doens't understand any verbal language. He has odd behaviours. He's only just sitting up, and is basically very delayed... each step he takes forward with development is painfully slow, but unfortunately the gap between him and younger children is growing wider by the day.
Some days I feel ok about the fact that this is how he is and we might not know what's causing it, but other days I'm totally fired up about why they can't tell me anything more!
one thing i will warn you with about the book - it is a bit of a "cure" story - and the little boy did catch on to speech very early.
it sounds awfully stressful, going through test after test, and having all this circus of appointments going on from so early on. I just don't know though how far they can say that the language delay isn't part of the general delay, rather than pointing to ASD.
oh mummyupnorth, i remember it well at least you are getting lots of the right support though and you are doing all the right things. I hope the genetic copunselling is useful to you x
It's ok... I've read a few 'cure' stories and just took from them what I needed to. I asked on here a while back about resources for teaching copying, etc and have been reading info on that, but unfortunately the 'teaching' just doesn't work right now. So we (ok I'm ) are just focused on keeping him happy with the things he likes doing until I can work out what to do next.
This is what I was talking about with DH last night. We don't know why the communication (or lack of) wouldn't be a part of the GDD label? Same with everything else really. While I'd love to get a more precise reason, I don't want them to just take a guess. Is there something that would be more definitve to determine the difference between gdd & autism?
I think it would be possible to technically meet the criteria for ASD - lack of speech, interaction and imagination if there was another underlying reason for the lack of development in these areas as they are all what are called 'high order' skills that require developmental maturity. Even with a DX of autism, the underlying disorder is not known. Some young children DXd with ASD will go on to pass for NT in later life ( some studies say 20%) whereas many others will remain severely affected. I don't suppose this helps much but 16 months is young for a developmentally delayed child. My DS1 can say and do loads of things at 4 years that we would not have thought possible when he was 2 and very obviously delayed in all areas.
It is frustrating isn't it? DS2 is delayed too, he is 17 months, and friends brought their 17 month old DD to see us the other day and it did really show up how behind DS2 is....
DS2 initially didn't smile, and he has had a range of tests, some quite invasive (lumbar puncture and muscle biopsy that he had to have a GA for - luckily he had his orchidopexy done at the same time so we got three for one). They told us that they don't think he has what they tested for, but at least it rules out some things (hopefully). We are going down the genetics route in a month or so.
It is very draining.
We have found Bobath absolutely brilliant, he is making huge progress at the moment. Speech is still behind the moment, and while DS2 has had grommets I have a feeling his hearing may not be quit right. He doesn't always respond to his name, or even loud noises.
So far all the diagnoses we have are GDD, delayed visual maturation, dyskinetic movements disorder (but I think that is resolving itself as his core strength was so poor).
Unfortunately the NHS support has not been good (other than on the testing side and we have paid for even some of that). We have had to find private physios, OTs, SALTs, and have been to BIBIC and Bobath - NHS therapists come once every six weeks or so....and that won't really help things.
We were supposed to go to his CDT at the end of March, but no revised date has come through yet. I don't need them to tell me he is still behind, they were hopeless (ie gave us no hope for him) when we saw them in September so don't see the point in going, especially since support is so poor...
cyberseraphim, yes I know that he's still incredibly young and things could change so much over time. He's already changed quite a bit in the 16 months, but unfortunately not all good. His GDD I believe extends to all areas. He's not NT or close to it in any area.
Hi again mm2boys. Yes, ds had psuedo-dyskinesia on one of his reports as the hand/arm movements were under stereotypies I think. Our NHS therapists are all BOBATH trained, so we went with the CE school for another approach. We take things from both and it seems to work ok. Would you say that the BIBIC was particularly useful? I've got the pack here, but was going to wait a bit until he shows a bit more, so they might have more to go on. It's a long way from us, so I'd want to get the most from it if we do go. Hope you get some answers soon as well.
I think I've been on the swan site before. Whenever we go to a new appointment (dental, eye, etc) they always ask if he has a syndrome. Is that usual? He has an odd sequence of teeth coming in (and late), and is now getting glasses, but hearing is supposedly excellent.
Gosh I wonder whether we're going the other way. Primary diagnosis of autism (severe) and we're seeing (I think) some movement disorders. I'm going to ask the paed when I see her (last year I asked if the strange movements were seizures- we think not- but now I wonder about movement disorders).
I've read a lot by people with autism and many (especially those with LD's or who remain non-verbal) describe difficulties with movement. Recently there's been some published work on catatonia and autism (by Wing and Shah).
Do you have any video of the movements? I have some of my son - perhaps we could compare off this board?
yurt, I'm sure I have some little clips of his hand/arm movements. And I could try to describe better the startled movements and staring episodes which resulted in the eeg. Do you have CAT?
Manx, same here... but it would be nice to figure out what they're getting at every now and then! I think for us though if I could work out what symptoms are causing the problems maybe it would be easier to come up with a plan of action. If the hypotonia was causing the lack of movement/speech/feeding difficulties, then we could start there. However, the physio believes he has enough higher tone to be able to sit/walk/etc, and the SALT thinks that he could be verbal if he wanted to as shrieks and noises are there, etc... So maybe lack of understanding is causing the low motivation to move? Or maybe I'm still missing another piece of the puzzle? Too many questions right now and not enough answers...
yurt1 your ds1s movements are very similar to dd's. She hasnt been diagnosed with a movement disorder though, i presume because they ran out of room on the form...or something
Maybe not. I get the impression their main objective is to make sure educationally their needs are being met and any tests that should have been done, have been done. Also making sure they are under the correct specialist. I think giving labels beings to get a ignored a little bit as they get older. That seems to be my experience anyway
I had asked our neurodevelopment paed (I think that's her title) what exactly would make up a movement disorder as that was what ds was originally thought to have. At that time she said that he was not able to do what he wanted to do, like reach out for a toy, because his arms and hands were doing a dance like movement and that prevented him from doing a task. However, since then, they've now said that these movements are voluntary, and not a movement disorder. I'm still slightly unclear on all of this as I thought even hypotonia on it's own causing difficulty moving would constitute a movement disorder. Back then (I think he was around 9 months old) she talked to us about starting a dopamine trial as they thought this was preventing his development.
As he started doing these movements before he started reaching out for things... then he continued with the exact same movements when he picked up a toy or sock or whatever, that was the basis on them saying that he controlled the movement. They feel that he enjoys the moment and is in full control.
oh mommy- I haven't had time to find that video yet - will try over the weekend.....
I think there's a belief that if a movement is 'steroetypical' it is voluntary but recent research is beginning to question that - and tbh when ds1 gets locked into a set of movements they don't look voluntary to me. He can stop them (which might distinguish them from a movement disorder) but only for seconds.
yurt, my dh has done something to compress the video file size... so they're on their way to you now. If you have any problems viewing them, just let me know.
I don't know anything about Movement Disorders (capital M & D) but I have observed over the years that children with ASD often move "strangely" or look physically awkward. Many also have sensory and repetitive issues that involve movement (DS's bunny hopping!). My DS could have been dx with ASD at 16 months easily and a lot earlier if you ask me, prob from 6 months. Not much help, sorry!
IN case I've crashed your inbox (just realised movie was rather large..... sorry!)
The socks thing is a little different, but the stuff with the pom poms is EXACTLY what ds1 used to do. If he heard music that he really liked, he'd do that, or if we fanned him with something for example. I've always felt those are linked to over-stimulation/excitement.
They progressed onto the ones I've sent you a video of. They are sometimes linked to excited- either over OR under weirdly enough. But can get in the way of him functioning, and may just happen randomly. I don't think it's voluntary.
We should be seeing the paed soon. She was confused about waht was going on last year, and I think if I bring video will want to show it to others (which is fine). I'll try to get some really good video and see what she thinks....
yurt, I can't get the file you sent to work here... have sent you an email with the error message.
Did your paed (or any other therapist) have any thoughts at all on the movements like in the pom pom video? Ds did this during a meeting today while he was just looking around a boring room (he was also licking a mirror in a book for about 30 minutes!). I have no idea why they come about sometimes, but they almost always happen when he's excited.
Davros, that's how I would describe ds's movements - strange. He frequently just looks very odd in whatever he is doing. Unfortunately for me, I've got very used to him now and a lot of the things our therapists find the most odd, I have long forgotten about as they're just a part of him now.
I am not sure what we have been told now is right on most fronts!
We were given the SWAN brochure from the CDT, and I got some info from them, but from the reading I've done there it seems a lot of the children have a lot more severe problems than DS2 does.
They thought he was doing funny movements back in December when he was doing this wiggly squiggly movement on his back. It was how he got around though, and for a long time there were concerns about his hearing and vision , so maybe it was how he found out about himself, and his environment. He can crawl now and cruise so he is doing it less.
The SHO endo at GOS thought he was dyskinetic when she put him on his feet and he wasn't at all steady, but I think it's because his head and torso control at that time still weren't up to him supporting himself how he was being held.
If he wants something he can get himself to it by crawling, he can reach, and he can hold things. His fine motor skills are still not great though but he is getting better (we have been working more on his gross motor skills).
We are worried about his lack of speech most at the moment....
BIBIC was great at the time - the program they gave us emphasised sensory input (flashing lights, rubbing his body with different textures) and it did help, and he is now really ticklish for instance, but I think he is past their program now - were supposed to see them in March but he was at GOS for some tests, so we have an appt in July.
I think for us though if I could work out what symptoms are causing the problems maybe it would be easier to come up with a plan of action. If the hypotonia was causing the lack of movement/speech/feeding difficulties, then we could start there. However, the physio believes he has enough higher tone to be able to sit/walk/etc, and the SALT thinks that he could be verbal if he wanted to as shrieks and noises are there, etc... So maybe lack of understanding is causing the low motivation to move? Or maybe I'm still missing another piece of the puzzle? Too many questions right now and not enough answers... 
