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please help. 3rd post I'm desperate!

12 replies

izzy8111 · 23/01/2014 06:20

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

And let me add before she would eat a balanced meal no problem. Veggies, fruits, yogurts, anything but now her diet basically consist of crackers, shreaded cheese, peanut butter, and apples.. I continue to offer these other foods and try my best to resist these 4 things but after 6hours I feel awful and like she's starving and I give in.. please help. I love my daughter I just want her to have a healthy happy life. I'm ready to accept any diagnosis or confermation that is given.

BTW I live in north Carolina and I'm willing to call/visit any specialist or doctors that are reccomended.

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ChaChaDigregorio · 23/01/2014 06:33

Didn't want to read and run Izzy.

I'm not an expert but I have taught special needs for 10 years (older kids though) and also have an autistic nephew a couple of years older than your dd. From what you have described, autism sounds like a possibility. The licking, lack of steadiness on feet (does she walk on tip toes?), lack of interaction, staring, lack of sleep etc. diagnosing autism can often take until a child is 7 or so, which obviously doesn't help you with a 2 yr old.

Have you posted in the special needs section? There are lots of people there who can help you figure out how to get a diagnosis. In some cases it's about pressurising the doctors for the right referral, in others it's about biding your time until your child gets to a stage where their different behaviours become much more obvious - around 4 or 5.

izzy8111 · 23/01/2014 06:41

Yes. I've just posted in special.needs. and yes she is ALWAYS on her tippy toes.. and the developmental specialist did point out autism.is hard to diagnois in a two year old. But I'm desperate I want to be giving her every oppurtunity and advantage that I can and I just don't see how I can get there with out knowing what's going on with my baby
I mean I want to know how she's feeling, what she's going through, and its pretty tough with her doctors not agreeing. But thank you for your suggestions.

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ChaChaDigregorio · 23/01/2014 06:50

Have a look at these websites Izzy
www.autismtreatmentcenter.org
teacch.com
www.autism-programs.com

There are names of some specialists etc who could help you if you are not finding your doctors useful. Good luck :)

izzy8111 · 23/01/2014 06:58

Thank you!

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adoptmama · 23/01/2014 08:05

The absences and leg movements you describe sound like my DD2's epilepsy (Focal Seizures, occasional generalised seizures, and myoclonic seizures of sleep). Although DD had a clear initial EEG that is not unusual. My DD's first EEG was clear despite the fact she was having multiple focal seizures every day. Her recent VEEG was clear despite the fact she is having seizures in sleep. Her MRI showed the epilepsy. You need an MRI to diagnose and find the site in the brain it is originating in. Epilepsy can affect speech and movement/walking depending on seizure type. DD has had long term speech therapy. Speech acquisition can be slowed/stopped for a while from seizures. What you describe with the absences/staring/head dropping basically sounds exactly like an Absence Seizure, especially as you cannot rouse her or get her attention. I would say get back to the doctor and get a neurological referral for further investigation (and try to video it). Don't let them fob you off.

Only wanting to talk to kids not adults may well be perfectly normal at this age so by itself I wouldn't worry too much. DD1 had major sensory issues and fought sleep. She did grow out of the sleep problems. We still have issues with smell, texture, noise. She also had hypertonism (very tight muscles) and had huge problems walking (dr. initially thought cerebal palsy). Physio helped and she was soon fine: she did walk on her toes a lot. Rigid based shoes with ankle supports were brilliantly helpful. She also can be super fussy eater, particularly over texture, and restricts what she will eat to known foods and textures. When she is sensory seeking she will chew anything, including her toe nails which I find gross and her clothes. Now I give her chewing gum which helps.

You may well have 2 unconnected things going on here - epilepsy and Sensory Integration Disorder for example, or possibly Dyspraxia. I would definitely say get back to the doctor and demand more neurological investigation to rule out seizures as a matter of urgency. What you describe is classic absence seizures and the leg jerking suggests other types a possibility too.

Good luck and I hope the doctors listen properly to your concerns.

Mooshbag · 23/01/2014 08:15

The trances sound just like my grandma's epilepsy. She would either just stop and stair or do repetetive movements.

I hope you manage to find a diagnosis.

X

cordyroy · 23/01/2014 17:27

My DS (3) has as yet unconfirmed Childhood Absence Epilepsy (major refusal to cooperate with the EEG machine!!), and the blank moments that you describe sound similar to his, although he has more flickering of his eyes rather than any head movement. He is totally unaware that anything has happened although it is quite concerning to watch. It can happen up to ten times a day but (assuming the diagnosis is correct) apparently this form of epilepsy alone does not cause any developmental problems and DS development and speech is unaffected.

I have no experience of other forms of epilepsy or autism so can offer no insight there but I think Adoptmama makes a very good point that perhaps there is more than one thing going on for your DD. You know her better than anybody else and if you think something isn't right keep pushing until the doctors listen to your concerns.

Whilst it is good to be informed please be careful about what you search online as I know from experience you can scare yourself silly!

Best of luck and I hope you get some answers very soon,

izzy8111 · 23/01/2014 20:44

Wow thank you. My daughter has seen a Nuerologist and an mri that came back normal. So they didn't want to see her again but I will research more on the sensory integration thing. And defiantly demand a second eeg.

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izzy8111 · 23/01/2014 20:48

Yes I appreciate your comments and suggestions and support both of you, thanks. I will defiantly bring this to our pediatrcians attention. Asap

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joosiewoosie · 24/01/2014 12:09

The 10 second trances do sound a lot like Petit Mal. I taught a child who displayed similar, and that's what immediately crossed my mind reading that part of your post.
I'm not well enough versed to offer my opinion on any of the other behaviours.
I hope you remain persistent and get whatever assessments done you need to get your little one a proper diagnosis which will assist you and her in accessing any support you may need/want.

ameliarose2012 · 24/01/2014 21:02

Epilepsy was also what I first thought of when I read about the absences. I have epilepsy, and used to have these often before I had it under control. The funny thing is, I had no idea until years afterwards when me and my mum were talking one day. The person having the seizure has no idea!

Epilepsy is connected with all kinds of different disorders, so I agree with others that maybe you have more than one condition to diagnose. I'd keep pushing the doctors. Book in for an appointment every week until they find the answers!

Good luck! xxx

izzy8111 · 25/01/2014 06:21

ThanKs everyone!

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