Here some suggested organisations that offer expert advice on SN.

A support thread for the undiagnosed, hand holding through the wilds and wonders of the unknown

(50 Posts)

As one year draws to a close and we get ready to welcome in a new one, it seems fitting that we're in need of a new thread to continue what has become a lovely supportive thread for those of us with children who have no clear diagnosis.

Lots of our children are SWANs which stands for Syndrome Without A Name, having multiple and sometimes complex difficulties but neurological and genetic testing is yet to find a cause.

Hoping that some us us may be blessed with some answers in the year ahead, and looking forward to sharing the good times, celebrating little achievements, helping each other to negotiate the obstacle course of testing, therapies and community support, and offering each other a shoulder and a hug when things get tough.

link to the old thread here

Gah, typo in para 3. That's going to irritate me all year isn't it? grin

hazeyjane Thu 20-Dec-12 22:19:58

Ooh,how exciting,a new thread!

I have to admit, I was putting off posting because I didn't want to have to come up with a new title!

Good news about the dla, firsttimer. I can't believe I am going to have to fill out the forms again next year, I am struggling enough with the form for ds's statement, which I have to get done for a meeting in January.

I am typing on our new iPad (ds's new iPad!), it is an amazing thing, very excited about hunting down apps to use with ds.

Also looking forward to mumsnet ting in bed, of course!

Ooh ipad! We have one that is rapidly becoming the kids' domain... There is a whole list of brilliant apps on the swan facebook page I think. I'm yet to explore it as Orange is happy playing with his keyboard app. Can't remember what it's called <useless> but it's a free app and turns the whole screen into a piano.

I sometimes MN in bed on my iphone, in fact I might do that right now. Fresh clean bedlinen is calling me grin

hazeyjane Thu 20-Dec-12 22:38:07

Ah,me too (fresh bed linen) and a hot water bottle and a snoozy cat...I am going to go up now.Yes I have seen the piano thing,it looks great. There is a communication app (using pictures/symbols) that was recommended on the Kleefstra FB page, that I want to look into, but the one that ds loves at nursery is one where he gets to hit a cat in the face! He thinks it is hilarious.

sneezecakesmum Fri 21-Dec-12 09:15:07

Try SMULE app. Piano music but you just hav to tap dots so very good for fine motor skills and sharpening reactions smile

lac13ma1 Sun 23-Dec-12 23:38:50

Here's a site for apps you can have a look at.
a4cwsn.com/free-educational-apps/

auntevil Thu 27-Dec-12 11:07:17

App city here too. I'm sure DH trawls through app stores instead of doing any work.
We have list writer that is voice activated - could be good for verbal timetable, particularly if the day is going to be a bit different.
DS3 use a good app last year when he was struggling to learn how to write the letter shapes. It also moved him along with phonic sounds and blending..
If anyone knows of a good paediatrician app, that makes judgements based on the evidence, rather than personal lack of opinion, I would be very grateful grin

MissDuke Fri 28-Dec-12 11:13:52

Hi can I join? I am at the 'is there something wrong or not' stage, so I don't know if we fit in here? I have read through a lot of the previous thread, but was unsure about joining in, so now seems like a good time, since it is a new thread?

I have 3 dc. My youngest is a year next week, and appears to be quite behind with her physical development. She does not sit up at all, though very recently has started to push back into an almost kneeling position from her tummy - but she is still not upright and cannot lift either hand off the floor or she will tip over. She does not weight bear at all, so no pulling up to stand or anything, but has in the last week or so started to 'commando crawl' briefly - it seems to exhaust her.

Her birth was a little complicated - she was breech but born vaginally, undiagnosed IUGR - she weighed 5lbs 1oz at 38+6. She required full resus twice and was in SCBU for a week. She had feeding issues - dx with reflux whilst still in SCBU, shortly after she was dx with a milk intolerance. She was quite slow in holding up her head, much slower than my other children. She didn't start weaning until 8 months as when I tried at 6 months, she choked, retched and threw up everytime. She rolled at 9 months and gradually learned to roll around the room :-)

She has recently learned to clap her hands and just today she waved for the first. She makes plenty of noises, and is sociable - though she is very upset when handled by docs etc, which I presume is normal to be fair to her! She seems to have good use of her arms, can feed herself finger foods (and non foods lol).

Due to her history, she has regular paed reviews, the next one is in a couple of weeks. They expressed oncern at her last appt and have said she may be referred to physio at this next appt. I went ahead and took her to a private paediatric physio who said her tone seems ok - though dd was hysterical everytime the lady came near her, so she wasn't able to examine her much! So I don't know whether to be reassured or not.

I worry a lot about her, but I realise there is every chance that she is just taking her time with things.

This worry is not helped by the fact that my 8 year old girl has been referred for an assessment, as her teacher suspects aspergers. So all of this, combined with the fact I am due to return to work soon, is causing me many tears, sleepless nights and constant worry!

So I hope you don't me joining in as I am sure you will all help me learn to cope with this worry!

MissDuke Fri 28-Dec-12 11:16:48

Sorry, just wanted to add that I think it is the incessant questions on her development at the paed reviews, the fact that they can never tick very many boxes, combined with her history that makes me worry about this - I honeslty don't believe that I would have worried at all had this been my son, who had a very straightforward birth!

ilovesprouts Fri 28-Dec-12 18:28:23

count me in my ds2 has no dx hes 6 now, have been going on for 5 years .

Sparklingwhitewineplease Sat 29-Dec-12 00:11:02

Can I join too please, my son is 5 no dx, been concerned about him since 6 weeks old due to poor eye contact, has never been formally assessed for aspergers but I will be pushing for this soon. Also have a dd age 3.5 with possibly a milder version of aspergers.

Sparklingwhitewineplease Sat 29-Dec-12 00:22:04

Oh, I jumped in here without reading previous posts and properly understanding what the thread was about. Sorry. I think both my kids have Aspergers just haven't been taken seriously yet to get a dx.
My apologies again. X

MyAngelChuckles Sat 29-Dec-12 19:38:50

Hope you don't mind if I join in aswell, DS is 7 in January and although he has many prof's involved and is statemented he still has no formal Dx. He has, at last, been referred to CCDS but the waiting list is huge sad and he is a complex little so and so who just doesn't seem to fit nicely into any little box so not sure if it will do any good anyway.

I have to say, after over 5 years I thought I would know one way or the other, it does upset me that I can't say 'well, DS needs this help/acts like this/can't do this because...' if that makes sense.

At any rate, he is a darling boy and extreemely cheeky grin

Hello lovely new people, welcome smile. Great to have some new faces for the new year x

hazeyjane Thu 03-Jan-13 10:17:18

Hello everyone, new and old facessmile

Hope everyone had a good New Years Eve.

We were with the best of friends in London, and it was lovely, despite 2 of the 6 children there being ill, and none of us making it to 12!

My new years resolutions are to read more, eat less and have more fun with my children (not doing so well on the eating less so far, but have started a book and have spent the last 2 days making pillow mountain in the girls bedroom, so 2 out of 3 isn't bad!)

Ds starts the year with a ton of appointments - opthamologist, cardiologist and a pathfinder meeting to sort out a statement. He is doing well though, and touch wood, has shrugged of a couple of colds without them turning into pneumonia (keeping everything crossed)

Lots of love and luck to all of you and all your dcs in 2013.

Ouchdownthere Thu 03-Jan-13 10:28:48

Happy New Year to everyone, I hope the year has started peacefully and 2013 we can all make more moves forward than backward or standing still.

We've been a bit head in sand about DS over the last couple of months and since we moved. He's 14 months now, sits well but has no saving reactions and still not really able to weight bear. But, he is reaching out loads and pressing buttons and page turning like mad. For so long he just wanted to be read to so I think him observing thousands of page turns has enabled him to learn that skill, albeit crudely as he still has no real grip of any sorts.

I wanted to come and rejoin the thread if I may as I need to keep focused on working hard to help him, when he makes these leaps we get so excited and relax and head back into the world of 'he's fine, just taking his time'. But the gap is pretty big now so I have to make sure I am banging on doors to get some help. NHS physio is so hard to access in our new area so we are going to dig deep and try and access some private sessions. I'm trying to get some work I can do from home as feel DS needs me here but what have you all done about work? We are very lucky in that we can just afford our bills on DH salary but I had always envisaged trying to keep some kind of connection and the money would help us not having to spend each month worryiing abut it but just don't think that is possible at the moment, not least because we seem to have at least one appointment for DS each week at the minute. I do worry that I am being too over protective about DS though and maybe a decent nursery could help him progress. So hard to know.

Not sure if anyone has tried it but DS had some osteopathy sessions before Christmas, I was sceptical before hand but I swear it has helped. He does seem more relaxed in himself and I think that has enabled him to develop a bit more, certainly he's made more advances in the month of osteopathy than he had in the previous six months.

Anyhow just wanted to come back and say hello and to wish you all the best, hoping it is the start of a better year for us all.

Arithmeticulous Thu 03-Jan-13 10:39:39

Hello, may I sneak in?
DS (8) has had an initial meeting with a psychologist at CAHMS who said he thought DS was HF but on the autistic spectrum, and would diagnose him 'properly' at the next appointment. So we've had a month or so of feeling relieved and looking forward (such as it is!) to a label other than that of a naughty child.

His next appointment (where he is supposed to be diagnosed) is only an hour long - which doesn't sound right to me. I was expecting a longer assessment for a formal diagnosis.

His behaviour over the holidays has been textbook quirky, obsessive, over-stimulated grin

Arithmeticulous Thu 03-Jan-13 10:40:23

Oh, and would you mention his suspected hypermobility at this next appointment?

Ouchdownthere Thu 03-Jan-13 10:56:12

Hello arithmeticulous,

I don't have any experience of the autistic spectrum but I do think you should mention hypermobility. My DS is globally delayed with hypermobility and sensory seeking behaviours. We don't know yet how much his hypermobility affecting his gross and fine motor development is in turn having a knock on effect with his cognitive development.

It could well be totally unrelated but good for everyone to know about it just in case it is affecting any of your DS behaviours.

Best of luck with the appointment.

glimmer Thu 03-Jan-13 17:16:04

Hi. I am a regular, but don't post often. DD is diagnosed with extremely rare
genetic disorder, which is associated with learning and physical disabilities. (So technically I have dx and shouldn't post here ...). She is now 3 and doing extremely well. Besides being tiny and officially failing to thrive, she is meeting her developmental milestones (albeit on the slow side). While I am extremely pleased - obviously - the last years have been very stressful for me. I constantly check her hearing/speech/vision and am waiting for more severe delays to show up. One OT said she had substantial OT issues, but when we went to see another OT, we were told she is fine (or OT bad?! - First one couldn't provide services because she has assessed DD.). Anyway,
I guess I wanted to post here, because we all share having to deal with the
uncertainty in our children's development. This has become a 'me' post.
Wave to those I met 2 years ago...

glimmer Thu 03-Jan-13 17:16:42

Oh yes, she is definitely sensory seeking!!

littlemiss06 Thu 03-Jan-13 17:45:42

Could I sneak in with you all for my adoptped daughter, we are undergoing assessments too, been seen by camhs for the last 12 months they feel she displays either foetal alcohol, autistic spectrum, attachment disorder, learning problems and sensory problems or there could be more than one condition but now on a waiting list for a psychiatrist/psychologist assessment by camhs, just been seen by a paediatrician who felt foetal alcohol spectrum as she has a very small head circumference, thin lip and philtrum and now referred to a geneticist to decide if it is or not, just been referred to see an educational psychologist for her school problems, our little girl is 6 in year two

littlemiss06 Thu 03-Jan-13 17:46:06

oh eck my spelling lol

used2bthin Thu 03-Jan-13 22:07:51

hi all! is it really two years wow! I actually think we are about to get an autism diagnosis although I won' t believe it till we have it and two years ago I would have been utterly shocked as I thought autism had been ruled out. I am already buying books and reading up on it and can totally relate to wanting to put a name and have info on things.

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