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last post. autism? toddler in trance? doctors don't agree

7 replies

izzy8111 · 23/01/2014 08:02

zy8111 Wed 22-Jan-14 07:17:26
My daughter is 29 months old now.
When she was younger she spoke in sentences and was very vocal. But around 18 months she started these trances and become distracted and less volcal. At first i wasnt concern but after weeks of this it just became worst, so around 20 months I took her to her pediatrician and he was immediately concerned. He tested her for a long list of metabolic disorders, she had an MRI, an EEG, her hearing, her sight, it all cam back normal. &before all of this, basically since she started to walk she was unbalanced and fell a lot. Anyways after all these test came back normal they started to lean towards autism. She was set up with a speech therapist and play therapist. She did regain a lot of her speech, but is still distracted, doesnt converse (as in conversations) with us. She met with a behaivoral and developmental specialist and he concluded that it wasn't autism and he would meet with her again right before her 3rd birthday. But the more her pediatrician, her therapist, and my family consider it. They pointed out that autism usually leads a child to communicate only when they need something, avoid hugging, and pretend play. Which she does do all of that. But now I'm at a point where her doctors think she's a " average 2year old" but I don't feel the same.

SO..

She has a couple "qurks" that I'm very concerned about.
First she goes into this very intense trance that only last about 10 seconds. When this happens in can be mid sentence she freezes and blankly stares her pupils get larger and her chin goes in towards her neck. And I can not regain attention until its over, the rare times I do she becomes violent and mean. This can happen 0-5 times a day. Which her doctors never had a chance to witness themselves, I recently recorded one of the episodes and plan to play it for her doctor.

Secondly she is terrified of swings, tricycles, etc.
She awkwardly kisses every child she sees, and sometimes licks myself and other family members. She has this weird leg movement she does while she's in her carseat. It looks like her diaper is full its sort of a leg kicking motion. Another thing she does is while were in public she'll insist on kissing and hugging every other child she sees but refuses to talk to other adults. She acts as if she doesn't hear them and she looks down and mumble to herself in a baby like jumble.
And her doctor thinks she might have some sensory issues.
Btw. She also eats very little. I mean its extream i get desperate for her to just eat anything. And she has trouble staying still and falling asleep. Some days she'll refuse to fall asleep and literally hold her eyes open until 2-3 am.. ive tried putting her in the dark. Playing lullabys. Not letting her nap, swaddling her in a fleece blanket. Rocking her. Books
Warm baths.. everything
....
I've heard of a couple diseases and diagnosis that seem to match.

  1. Petit mal
  2. Sensory ocd
  3. Sensory integration dysfunction
OP posts:
AwfulMaureen · 23/01/2014 11:50

What a nightmare this must be for you... When you say she met with a behavioural therapist...have you seen a developmental Pediatrician? Also what country are you in?

If you are in the UK it doesn't sound like you've had a satisfactory care at all to me! Mind you, if the ECG etc came back normal it would seem to point to Autism....many children with Autism have those "zoning" moments throughout the day and which appear to be just what you describe in your DD...and Autism is such a wide spectrum that no two children are the same...and what they said about children with autism only communicating when they needed something is blatantly untrue...who said that exactly?

My friend's son is 3 and has a diagnosis of Autism....he sometimes comes up to me or her and asks for "Bouncy on knee" or "Go on trampoline"...he also "zones out" and has various physical habits..."stims" such as leg jiggling and in his case, finger wiggling.

I would ask to see a pediatrician asap...and also OP...post on Mumsnet SPecial Needs where there are a LOT of knowledgable parents who have children who don't quite fit one diagnoses or another and are looking for answers. x

izzy8111 · 23/01/2014 20:28

Thank you. But no I'm the US. But I agree her doctors aren't doing enough. And yes I did the developmentalist was a behaviorlist doctor as well. And well he, her pediatrcian, and her therapist all said autistics kids don't run up and hug people don't know how to pretend play and only communicate when they need something. So I don't know where to turn bc in the words of her doctor she's a "normal 2 year old"

OP posts:
AwfulMaureen · 23/01/2014 21:13

I thought you must be somewhere other than the UK. In my experience you can't really say "No autistic child does this or that" because there are so many variations..I really think you should repost this in Special Needs as the people are so experienced there....

Goldmandra · 24/01/2014 09:50

autistics kids don't run up and hug people don't know how to pretend play and only communicate when they need something.

That is absolutely not true.

Autism is a disorder that covers a lot of areas of behaviour and development and different children have different patterns of behaviour.

One child can have great speech, be obsessed with one species of animal for years, get very anxious about going on holiday, play constantly with Sylvanian Families and make great eye contact. The next might be non verbal, have deep interests that last a couple of weeks, be happy to stay away from home, never pick up a small world toy and make no eye contact at all. They still both have Autism.

My DD2 has had to be taught the rules about hugging because she used to hug people when it was inappropriate, e.g. the postman, people in the doctor's surgery.

She does a lot of pretend play but it is usually solitary and anyone joining in has to do everything her way. There is no give and take.

She is very communicative, has learned some social niceties and uses them well, rabbits on about her interests constantly and often tells people what she's worked out they want to hear.

She has a diagnosis of Asperger's Syndrome/High Functioning Autism.

Do you have any schools for children with High Functioning Autism that you could approach for advice or perhaps any charities like the National Autistic Society?

In the meantime, have you got any further with getting someone to investigate the absences?

feckawwf · 24/01/2014 10:00

My son does all of this (except for the trance thing) and has been diagnosed with a Sensory processing disorder. His communication and play skills are fine but he does have a lot of OCD, anxiety traits and the need for routine so will more than likely get an autism diagnosis.
The trance thing sounds very much like a petit mal, but I'm sure can also be evident in autistic children where they go into a complete world of their own...so maybe autism shouldn't be ruled out just yet

izzy8111 · 25/01/2014 06:19

Yes there is a preschool near us that she'll hopefully be attending later this yeaR, and i do have an appointment with her doctor. I understand that this could still be autism my problem is this is what her doctors are telling me about autism

OP posts:
Goldmandra · 25/01/2014 09:24

I'm not sure how the system works where you are. This doctor clearly doesn't have a good understanding of ASD. Could you ask for a referral to someone more knowledgeable, i.e. someone who specialises in ASD?

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