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I'm distraught over this its all I think about.. please help me here.

17 replies

izzy8111 · 23/01/2014 06:44

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
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mummytime · 23/01/2014 06:51

I would strongly request an investigation for Epilepsy and in your case do not just let someone just diagnose for Autism without thoroughly investigating, incase it is actually something else.

But don't google too much!

For you, treating her as if she has got Autism will not do harm and is a good place to start. If a label help, which it can if your DC is acting "weirdly", then saying "She is being investigated for Autism" should be good enough.

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PicardyThird · 23/01/2014 07:00

Yes, I do think the 'trances' sound like small seizures. They definitely need investigating on that basis.

ASDs can manifest in all sorts of ways and, while I am no expert, I don't think they automatically mean a child doesn't do pretend play or want to be tactile with others. I wouldn't be wanting to rule out autism on that basis. Does she point? Can she use understand and use yes and no? What is her speech like - does she form sentences, does she respond to questions with understanding? Not wanting to talk to adults at that age is not so much a cause for concern IMO. What are the physical issues, her balance etc., like now?

She is your lovely little girl (and I do think she sounds lovely) whatever emerges from all this. But you do want to give her the very best help and chance to fulfil her potential that you can. Please keep pushing for help and further assessment.

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izzy8111 · 23/01/2014 07:18

Thank you. Um she has always been a bit clumsy, she tend to walk around on her tippy toes. She doesn't not speak in sentences or hold a coversations. Her speach fluctuates. Somedays she won't speak a word. (Only her sign language) other days she'll talk a lot. But she doesnt talk in a back and forth conversation way. Basically her talking is pointing to things in a book and naming, she'll say our families names, or call out for things she needs, sometimes (rarely) she'll repeat things she hears. But she can't answer questions. Even though she understands yes and no.
As far as physical problems its just the balance issue and she doesn't run, she refused foods like applesauce because its lumpy, or she crys when we try to have her finger paint. If something is a bit loud, she'll plug her ears.
And my biggest concern is the blank absent staig
. But thank you, I defiantly want the best for my little girl.

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fanjoforthemammaries7850 · 23/01/2014 07:23

Not sure what to suggest but this also happened to my DD..she has autism. I know how dreadful it is. She also had blank spells but no epilepsy was ever found. Take care of yourself x

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fanjoforthemammaries7850 · 23/01/2014 07:25

Hang on to the fact she regained her speech and social interaction. .my DD didn't.

I would push for more EEGs including a sleep one.

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fanjoforthemammaries7850 · 23/01/2014 07:27

But yes..autism can cause all sorts of neurological effects..my DD lurches around unsteadily and has various tics and stares off into space so yes, it could be a possibility.

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izzy8111 · 23/01/2014 07:28

Thank you for responsible. And I am beyond greatful for her speach.
I'm.not sure what a sleep eeg is, can you explain? I had one eeg of her I think it took a total of 45 minutes.

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fanjoforthemammaries7850 · 23/01/2014 07:30

Its when they do one while she is asleep.Epileptic activity during sleep can have all sorts of effects.

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SomewhatSilly · 23/01/2014 07:34

I was going to ask if they had ruled out absence seizures. Definitely get them on film so you can show to the docs - as many as you can.

As for the rest of the behaviours - I recognise some in my own DS (3.3), although others I don't. He is being investigated for an ASD currently, and from what I've read over on the SN boards, there is a huge variety in presentation.

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MyFabulousBoys · 23/01/2014 07:36

I've pm'd you

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izzy8111 · 23/01/2014 07:37

Thank you that's interesting fanjoforthemammaries I had no idea there could be a relation between the absent spells and autism

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izzy8111 · 23/01/2014 07:38

Thank you all for your reaponses

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izzy8111 · 23/01/2014 07:39

That's interesting. Thank you for that suggestion I'm definatly going to ask her pediatrician about this sleep eeg

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DoctorDonnaNoble · 23/01/2014 07:42

My little sister had some similar symptoms. She was eventually diagnosed with dyspraxia (at primary), dyslexia (at uni) and is currently at 27 hoping for a diagnosis somewhere on the autistic spectrum. Parents know their children as they see them all the time. Filming and keeping records seems a good idea. Good luck.

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izzy8111 · 23/01/2014 07:52

Thank you I've actually never heard of the first dyspraxia, I would love if you could explain.

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fanjoforthemammaries7850 · 23/01/2014 07:54

And it will get easier in time..its a big shock and worry. Thanks

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izzy8111 · 23/01/2014 08:04

Thank you.
And I know it will she's a wonderful loving child. I just want to be sure I'm giving her everything she needs.

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