Development Delay

[danelleme]

Hi I am looking for anyone out there who has a child that is development delayed. I have a 21month old girl who is probably a year or so delayed and they have found no cause for the delay. I am just looking for some other parents who had or have the same problem and any suggestions on where to go next with this problem.

[kfiedler]

What things is she delayed on?

[danelleme]

Sorry she is delayed in motor, gross and speech.

[kfiedler]

My son currently is a bit behind although he is a bit younger at 16 months his motor skills are not really the best. He a larger boy not chuncky but solid, his hands and feet are pretty big that he is constantly tripping himself, and as far as stocking blocks and holding things his hands are wide that he isn't quite what to do with them. He also hasn't said his first word. The only person I have to compare him to is his older sister who reached every mile way before. Walking by 8 months and talking sentances at 18 months. I am to a bit concerned. I am not sure if this helps you but I spoke with my Dr and she said that each kid develops way different some get it right away and other just don't care on figureing it out yet. Only time will tell. Hopefully that is all it is. What has your Dr done to reconize the delay? Or is it just compared to other kids. I am very interested.

[myboysmom]

My first son was way ahead in speech compared to his younger brother. By 18 months, my 4 year old was speaking sentences. My 2 yr. old didn't start until probably 24 months. And his speech is much less clear than his older brother. As far as gross motor skills, if there is no problem, I think they just have to be motivated on their own. You can try to help them, of course. My friend's son didn't walk until he was 16-17 months old. Like kfiedler said, all kids develop at different rates.

[danelleme]

My little girl is in the 3% of the weight, below 3% in her head and 75% of her length. They have done everything from 2 brain MRI's and tons of genetic testing. She has been to genetic counsling, she has been to the Children's hospital in Denver and noone can find anything. Every doctor she talks to says that she is a mystery. She also has crossing and shaking of her eyes and all they can say is that could be some of it, but that there is also something else going on. She has PT 2x a week, OT 1x a week, ST 2x a month and pool therapy 1x a week. She is progressing but the progressing is slow. They have ruled out things like autism, retts and angelman. But she is progressing and alot of the diseases they regress that is why they don't know what is going on. It is kinda frustarting having something wrong with your kid and noone can find what it is. She is having surgery on her eyes on thursday so hopefully that will take care of it. She also wears braces on her feet to try to help her to start walking. She will be 2 next month and she can't even hold her body up to try to walk. I just get so mad cause I wan't her to have a normal life so bad. I want her to chase her sister and other kids around, like kids her age are doing.

[fuzzy]

Hi! Well the first time I read your first post I immediately thought autism.I'm a former Autism support worker and know alot of the sterotypes.I see that they have ruled out autism,I find this funny because in Canada(where I live) they don't do the testing for it until the child is 2 or older.I'm not saying they're wrong I just was suprised that they ruled it out so fast.Another thing that caught my eye is her eyes shaking and crossing well in cases that I've seen it's called nostagmus(spe?)or astigmatism(spe?)which is very common in autistic children and kids with fragile X syndrome which is why I'm posting; Have your doctor brought this up it's something like Autism only it doesn't fall on the spectrum like retts.I just thought it might be something that you might want to look into.I hope this can be some help.Good Luck!

[clydegbryant]

Hi Danelleme,
What you are describing IS very frustrating. Your daughter sounds very similar to what my family has been through. I probably don't have any answers but my site might make you feel a little more grounded in the DD world. I am not suggesting any clinical diagnosis but invite you to visit my blog at www.pierpontsyndrome.blogspot.com. And if the admin removes that address look at my profile to find it there. Then if you wish to correspond please contact me: off this site! I have had a terrible time replying and was unable to post a new thread.

[clydegbryant]

Good answer Fuzzy.
I think your answer is right on track. Speaking from experience I speclate the non-diagnosis for autism is because there is an obvious, (due to all the testing Danelleme's daughter has been thru) but maybe unknown, genetic syndrome involved. And most geneticists are not willing to close the book with such a broad label: Autism. That is not a genetic label. There are clinical labels for two of the categories: Aspergers and Rett's (There is a genetic test for Rett so many parents want Rett out of the Autism Spectrum diagnosis. The parents who have no positive genetic test for Rett's but a STRONG clinical diagnosis for Rett want it left in the Autism Spectrum Disorder family.) And PDD is pretty obvious but I am glad the doctors didn't close the book with that label for us, or Danelleme's daughter.) My daughter got the PDD-NOS label through the school district. Our geneticists agreed but wanted a more defined answer. And a looong 4.25 years later they gave a clinical diagnosis of Pierpont. But is she autistic? Yes. Autism was never "ruled out" it was an "also ran" to the real issue.
As a side note: I am having no trouble posting after sending three letters to the admin and seeing my avatar was changed from a man to a woman, talk about discrimination...

[kfiedler]

My cousins had adopted a little girl (has two other kids of her own) with a clean bill of health as a newborn and she is the same age as my daughter, slowly around 6 months she stopped progressing many tests later they come to find that she may have been a coccaine baby. She is currently 3 years old, can't stand, sit, talk, eat, or see. They bring massive amounts of special equipment with them wherever they go. She is a beautiful girl, my cousins have been honest though the whole ordeal and said there are really tuff days but all and all she is part of there family, and there are happy that they could offer there home up to a baby who turned out to really needed there help. I remember having a mommy discussion with my cousin that I was having a hard time keeping up with my daughter because she got into everything, she started to cry and said "At least she can get into things" All I can say is work with her one on one, If she progresses slowly great if she doesn't that really won't change how you feel about her. As hard as it sound you'll adjust.

[danelleme]

I totally understand what your cousin is going through. And I am glad everyday for her and understand what she is going through and no it doesn't change the way I feel about her. I think that some part of you would feel better if you even had a idea as to what was causing it all. She has surgery yesterday on her eyes and not even 24hrs later I am already noticing a change in her. Like the way she picks up toys. She used to be the most squirmist kid and now she is like a calm kid. So hopefully this is the answer I have been waiting for. And thank you kfiedler for all your advice it has really helped!

[kfiedler]

Great to know that the surgery seems to have been a sucess, being able to see a difference so soon is wonderful news!