constantly in tears. I NEED HELP.

[izzy8111]

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

My DS is 9 and and was diagnosed with autism when he was five. When he was the same age as your dd, he did have speech but he would not use it to communicate. He was very tactile, lots of hugging etc he also used to spin, several times a day. I couldn't get through to him. GPs said he was fine but I was at the end of my tether. I could see the difference between him and other children but I thought it was my fault, that I was a crap mother.

Anyway, to cut a long story short, he was diagnosed at 5 and has a statement. Now he's in MS with 20hours support a week from a fantastic TA. It's been a rocky road, he still has issues, currently worried about his weight ( there's nothing of him!) but now he's doing karate, swimming, running, tennis, gardening clubs etc. he's a bright boy. The point I'm trying to make is that when he was at your dds stage, I didn't think I'd ever get through to him, we'd never laugh at something together, he'd never be able to do the things that he now can. But he's been able to achieve so much more than I'd hoped he could. And he just never stops talking!

So of course, you must follow your concerns up with your doctor. Push to get her seen. But take a deep breath, your situation may well be much better than you think x

My brother has petit mal and my son has epilepsy. My sons pupils dilate when he has a fit. Can't remember if my brothers did as he has grown out of it now but he basically just looked like he was day dreaming. Epilepsy is often very manageable once on the right medication. Once he was diagnosed and on medication my brother didn't have any problems and has lead a pretty normal life to date.

poor you. this sounds really difficult. don't despair though.

my DS now 5 had something similar at a similar age. 'petit mal' type stuff, sleeplessness, restricted diet. I took lots of video. doctors investigated for various things. mostly movement disorders and epilepsy. he has never been officially diagnosed but to be honest I'm not pursuing it very actively at the moment as he seems to much be so much better (still not your average child though!)

DS was on medication for sleep at one point. I wouldn't say it was a magic bullet but it did help. and once he was in a better sleep pattern a lot of the unusual trances (and bad behaviour!) just faded away. So I'd definitely recommend that. I asked for it.

also, i read a lot about how to help kids with food phobias and I supplemented like mad. This helped me feel like I was 'doing something' at a difficult time and I think it did help his health overall. His diet slowly became more varied and his eczema and constipation disappeared. Paed told us to cut down on milk as he was living off this.

video is very helpful.

Good luck

Has anyone mentioned dyspraxia? It can effect balance but can also affect verbally ( verbal dyspraxia) it has similar traits to autism and can also run along side autism. I have 2 dd's both have ASD and both have dyspraxia traits, my eldest used to be scared of swings, bikes etc.., she was a late walker and refused to walk outside until she was 3.5 ( because she hated uneven surfaces ), she's now 9 and can not ride a bike and will not run very fast as she's unbalanced ( she worries about falling ), my youngest daughter is 7 and does the staring into space and has severe language problems though she can talk she often chooses not to and when she does talk it is often very quietly.

To be honest, it could be a number of things. It sounds like absence seizures, or even some 'drop attacks' where the child falls over suddenly, then gets up again, but there's no obvious reason why they've fallen.

The regression is sometimes seen with Autism. Also sometimes seen in Retts, although Retts has a fairly classic pattern, with loss of hand function being part of the presentation, so I guess that wouldn't fit?

If I were you I'd get her booked in with a preschool as soon as possible. My DD (now at special school) was ignored and I was seen as neurotic until she started preschool, then suddenly they couldn't cope with her and she had 1:1 support very quickly, followed by Paed consult and investigations. She got a diagnosis, of sorts, but more crucially, the school she needed.

Wow, thank you all your suggestions and advice will be taken. She will hopefully start pre k later this year. My daughters doctor has told me to cut back on milk 2/3 times because she drinks in, in place of food sometimes. To the point where shes became aneamic twice. But lougle and marne i'll look in too these other diagnosis to see if there are any matches. Thank you. & zzzz ive never heard of a mobile eeg so i will be requesting that from our doctors, thank you!