New here -looking for similar experience

iVillage Member
Registered: 07-11-2008
New here -looking for similar experience
Fri, 07-11-2008 - 2:08pm

Hello, I'm new to these boards.

I have two kids. A son who's almost 5 (NT), and a daughter who's 2 1/2.

I'm still not sure exactly where DD fits into things, so here's a bit of background.

2yr old checkup - speech quite delayed and staring spells = hearing checked (fine) and EEG (abnormal)

Ok, so abnormal EEG sends us to Texas Children's Hospital to be eval by pedi neuro - dx w/ pdd-nos and did a second EEG and sedated MRI. EEG was normal and MRI showed severe delay in the development of white matter.

At times, it's hard to believe much of anything is wrong w/ her - she has met most milestones, she just tends to meet them late and needs a little help getting there. There are signs of atypical behavior, like some hand flapping, she doesn't have appropriate emotional response to someone crying, lack of spontaneous pretend play (if left to her own, she'll mostly move things in and out of other things).

It just feels strange b/c she doesn't really 'seem' to be "special needs". Does that make sense? I don't know. I guess I just don't know where she fits you know?

Anyway, sorry for the long intro, and I hope to get to know y'all better.

iVillage Member
Registered: 01-23-2008
Fri, 07-11-2008 - 7:26pm

I don't post on here a lot but your daughter sounds a lot like my son Wyatt who is almost 2 1/2.

Margaret, mom to...

Kenneth (16), Alex (14), and Wyatt (2 1/2) our non-walking, non-talking, red-headed wonder with hypotonia, ataxia, tremors and no diagnosis, though

iVillage Member
Registered: 07-11-2008
Fri, 07-11-2008 - 8:07pm

Thank you for sharing some of your story. I have yet to find anyone on any forum that fits with her that closely.

She started walking on the later side (15 mos) but still w/in range. She has been evaluated by ECI and is currently getting play/floor therapy once a week.

At 27 mos, the eval showed...
cognitive - 26 month level
physical - 24
communication - 21
social/emotional - 17
adaptive behavior - 16

We also had genetic blood testing done. One test came back normal and we haven't heard back on the other one yet.

We have enrolled her in a local Mother's Day Out program (twice a week 9:30-2:30) that will start at the end of Aug. Our son attends there, so we know the people, and I have made them aware of her situation.

I have noticed that when she is around other children her age, she does seem more baby-ish. Not necessarily in any tangible way, she just does. I'm curious to see how she will do in a more structured classroom style setting in comparison to others her age. They aren't unreasonably strict on 2yr olds or anything, but they do have scheduled centers and activities, etc. as opposed to just randomly playing.

iVillage Member
Registered: 04-08-2004
Sat, 07-12-2008 - 2:48pm

Hi, and welcome to the board.

My daughter is a fair bit behind yours developmentally, but there are some similarities, so I thought I'd share.

iVillage Member
Registered: 01-13-2008
Mon, 07-14-2008 - 4:38pm

Hi & welcome!

i feel the same way many days. My daughter almost 3 and half seems so typical in so many ways i almost feel bad concidering her special needs. we still dont have a spectrum diagnoses only a "i think its aspergers but wanna wait and see" blah blah. but for now , she is about a yr behind in her social speech, has very bad anxiety and is on medication for it, also sensory issues.. We dont really know either where our place is in this world just yet!