new here any thoughts?

[Chundle]

hi all am new here and just looking for some thoughts on my 18 month old daughter. At present we have no diagnosis. She was referred to CDC as at 9months she still wasnt able to roll herself over either way (she still gets 'stuck' on her back now!) whilst there they noticed she had some 'sensory' problems so we got put in there weekly nursery grop where we have attended for last 3 months. She only says 6 words:
mummy
ta
g - book
zooos - shoes
bib
boo
At 13 months she used to say 'daddy' and her sisters name but this stopped at 15 months and hasnt said them since. She calls her dad, myself and her sister 'mummy' so she doesnt really differentiate between us. Shes a terrible sleeper and awake every night up to 12 times a night. Has horrific tantrums, headbutting and kicking, cannot stand certain noises and is funny with smells. The main bugbear is that socially she just simply cannot stand other children to the point where we removed her from nursery as they said she was anti-social and screamed in other childrens faces, she was also coming home coming silent and very withdrawn and seemed almost traumatised.She screams if other children touch her and is very sensitive to having her face and head touched. Waiting in doctors/dentists waiting room is nightmare as is public transport as she kicks off due to enclosed space with lots of people it is a nightmare!!! She is also very overactive for her age and when she gets anxious when hes in busy places she quickly becomes very hot and physically starts sweating.She can be very clingy to me and will scream and go mad if i leave the room.Shes hevaily reliant on a dummy and loves deep pressure. Im exhausted with her, when i ask CDC what they think all im told is 'its sensory' however another doctor off the record has told me that sensory problems mainly occur as a result of underlying problem. So hoping you mummies can help me out a bit and let me know what you think, I have concerns that she may be slightly on the spectrum somewhere, her sister has ADHD and possible aspergers. She has a very good paediatrician who she sees so wondering whether to ask him what he thinks at next app in couple months

Hi Chundle, sounds like you're worried about dd; your concerns do rings some bells for me in terms of autism/adhd and I'm glad you have a good paed to take things forward. This is a very supportive board and you are in the right place, keep posting x

thanks for replying, shes just a bit of a pickle really she does smile and laugh away and play but she will not sit on your knee for a cuddle at all not even with her evening bottle at night (she has to walk around the room with it) she has never liked being held and everything has to be on her terms - you cant kiss her she will kiss you when she feels like it!She does make eye contact for a second or two.She has learnt a couple of signs to help with her frustrations so thats a start. glad i found this board!The CDC advised us to apply for DLA but i dont hold out much hope

Im glad you have a good paed as it sounds so tiring :(
TBH If it was me I would be looking into an OT referal who specialise in Sensory processing disorders. You are unlikely to get this on NHS, but worth asking. If your in Herts I can recommend a good private one.
I would def apply for DLA, we were granted this for DD2 before her diagnosis. Please when you fill it in, base it on your worse day.

In my opinion (im no specialist) there is a lot of traits of ASD in your OP.

Hi thanks we are in devon, at the CDC we see an OT there in group every week but monthly appointments for 90 minutes shes fab. We have got weighted products and vibrating cushions and everything from her its helped so much, there was meant to be a 3 year wait for her but I have epilepsy so sleep is vital to my health so we got bumped up the list a bit to see if she could help. Ive gone for voluntary redundancy and leave work this month as the hours/no sleep/and two hyper kids doesnt leave time for much else for me. We did the DLA forms with help of cerebra guide and sent off all the CDC reports so hope its enough

Your story sounds very very familiar to me, this is where we were a couple of years ago.

Would definately find a sensory trained OT. Dd2 was severely tactile defensive and wouldn't touch anything or be touched. Our OT (NHS) put us on a deep pressure brushing and joint compression program. She improved massivly. A few months later she got ill so we needed a top up month of brushing but her tactile sense is now within normal range.

Re auditory and other sensory issues I would highly recommend the Therapeutic Listening program, also given to us by our OT. There are loads of different listening programs, but this one worked well for us and we still use it now.

This seemed to iron out the majority of DD2's sensory difficulties. We now do retained reflexes (private) and go to BIBIC every 6 months and the combination of these therapies seem to be bringing DD2 on nicely.

Dd2 (3.7 yr) has other issues too with gross motor.

HTH