Think DD has Sensory Processing Disorder - what next?/OT recommendation

[Mrsdoodle]

Hi, I strongly suspect that my 3.9 year old DD has a sensory processing disorder. She is really struggling at the moment and has the following issues:
? Very limited diet (about 10 foods), major issues with food textures
? Says she is hungry all the time, think she just likes stuff in her mouth
? Odd body temperature control / understanding of being hot or cold
? Very extreme reaction to ?pain? (which is often just a very light touch), hysterics if there is an actual mark no matter how miniscule
? Anxiety about being in situations where strangers might touch her and extreme reaction if they do
? Frequent total meltdowns
? Severe anxiety (physical symptoms including shortness of breath, stomach cramps, breathlessness, increased heart rate and vomiting; constant worries about mummy dying, getting lost and not being able to find mummy, most recently was being super-nice to me because ?if I?m nicer to you mummy you won?t go away and leave me?)
? Low self esteem (hates compliments, comments like ?why does no one like me??, can?t bear even a very minor telling off or me saying e.g. ?oh dear?)
? Extreme reaction to taking away dummies 9 months ago (on dentist advice). Cried for 4-5 hrs per day. Still makes sucking noises in sleep and often puts things in mouth, especially if anxious.
? Hates being kissed but wants hugs all the time
? Major issues with clothes ? can?t bear layers, jumpers, anything around her waist or on her legs. Periodic obsessions about long sleeves or short sleeves.
? Hysterical about hair washing and often hyperventilates (says it hurts her eyes), nail clipping and teeth brushing when it?s mummy?s turn.
? Screams in the wind / rain, even if only out for a few seconds e.g. me carrying her from house to car.
? Can?t stand slight spill on her skin or clothes even if tiny, though sometimes seeks out getting messy e.g. baking using hands.

I am reading the out of sync child and was astonished to finally find something that seemed to make sense for my child. I?m a little confused about the relationship with ASD ? I know little about it and it seems v complex and varied but although DD loves a rigid routine, she doesn't show any of the other usual characteristics, plus she is very sociable, has excellent speech, very good fine motor control, loves imaginative play, and is good at judging emotions.

I am really just starting to realise how many coping strategies she has, and how much I constantly ?manage? her in ways that are so ingrained I hardly notice I?m doing it. It?s heartbreaking to see her struggling so much with life, plus she is starting nursery in September and I?m very worried about how she?ll cope.

I don?t really know where to start but am hoping I can find an OT, I guess with specialism in paediatric OT and a qualification in sensory disorders, and go straight to them rather than having to explain it all to the GP? Will they see her without a diagnosis, or does the OT do the diagnosis? I am in the Herts/Bucks area and would be very very grateful if anyone can recommend a suitable OT, and for any general advice. Many thanks.

Hello, we are north bucks. My son has SPD (acknowledged but no formal dx) and we think it is part of ASD for him.
I went to my GP two years ago about the sensory stuff and we were referred onto paeds. Tbh they were pretty hopeless about the SPD in isolation. There are very few NHS OTs (if any at all?) to see in north bucks, so were given a sheet to work through to find his needs and were told 'it is just part of him'. That was it.
I got much more help from the book you have read.
I think there are private OTs, but we have stuck to NHS.

Herts might be better?

However, now we are persuing AsD dx they are beng much more helpful, and school are finally looking into supporting he sensory needs.

Thank you very much for your helpful reply. The response you got from going down the NHS route for SPD on its own is pretty much what I thought might happen with us. I think I will try and find a private OT to go to directly.

I know poltergoose has had loads of success with NHS OTs, but she lives in another part of the country x

I live in Herts and take DS into london every week......used to be twice a week. I know there is hemispheres in st albans, but have no experience of them.

Thanks very much both of you for your advice. mrslaughan do you mind me asking who in London you use? I am looking at different private specialist OTs, hopscotch seem well regarded.
Thanks again.

We go to hopscotch, have found them fab......just hate paying the bill (IYKWIM)- but love the results

I have trained in up until 3 weeks ago, now I drive..... I park outer circle of regents park, you end up about a block away from Harley st, you are not in the congestion zone, parking for 2hrs, is about £5 - a lot cheaper and less stressful a than train.
HTH

Thank you that is very good to know, I think we're going to go with hopscotch for the assessment. The cost did make my eyes water but they do seem to get positive feedback so hopefully will be worth it! Thanks also for the v helpful info about the parking, might try the train to start with as think London driving may be even more stressful for me (and therefore her) than the train! Thanks again for your kind help.