Posts: 1135
From:Fort Meade, MD
Registered: Nov 2005

posted June 11, 2006 05:20 AM               

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Julia's waaaaay way way way way behind where a "normal" 8 month old should be at this point. The majority of it is physical - at only a little over 8lbs, she can't do the same sort of stuff a baby who weighs 15lbs can do! That stuff (rolling over, sitting up, walking, etc) I'm not too worried about, b/c it's pretty obvious her failure to thrive plays a large role.

I've read there may be a higher correlation between mental retardation and Netherton's syndrome than what was originally thought to be, and was wondering if anyone could shed some light on this aspect of development. She does seem slightly delayed - only recently starting to babble, within the past two months only started to reach out for things, and within the past two months or so started to hold onto objects.

We are getting her into an Early Intervention program (should they ever decide to come over and assess her), but I was wondering if anyone has any words of wisdom, b/c now that her weight gain is off my mind b/c of the NG tube, her mental development is always something I'm thinking about!

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Posts: 138
From:Lancaster, Ohio USA
Registered: Mar 2002

posted June 11, 2006 08:04 AM            

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Hi,
While, I don't know anything about the link between N.S. and developmental delays, I wouldn't worry much yet. She has been fighting lots and lots of issues. That has taken most of her energy. Did you know that most babies work on one skill at a time? If they are working really hard learning to talk, they will slow down working so hard on gross motor stuff and vice versa. Julia was working really hard growing. You are doing the right thing getting an Early Intervention evaluation. I will warn you, it is a government organization and you know how things go slowly in a beauracracy. My advice, keep doing what you are doing. Talk to her, gaze into her eyes, play with her. Those are the kinds of things that will help her develop no matter if she has ich or developmental delays or not. Just reading your posts, I'm sure you are doing for her all that she needs.
Deidra

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Posts: 191
From:Berkshire, England
Registered: Mar 2005

posted June 12, 2006 03:52 PM               

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Kian is very much behind with his development, he is 22 months and has the development of a 12 - 15 month old.
Although it may not seem much at his young age it is a big difference when you see another baby the same age as him doing things.
It may be that they are ok and just slow to do anything and learn because they instinctively know it may hurt them more (ie crawling because of their knees - grabbing items because their skin on the fingers is tight etc) but with kian they are checking to see if the gene for development has been mutated and affected hence why he is slow.
If Julia is behind then do not let it worry you to much - just keep encouraging her as much as you can and remember she will no matter what get there one day , kian has just begun walking and is starting to try and run its quite cute and funny to see.

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Posts: 125
From:ny
Registered: Mar 2006

posted June 13, 2006 12:05 PM               

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hi I personally did not even walk till i was about 2 year old. I was very much developmentally delayed. Today I am working on a masters degree. I am fine except for the slight clumsiness hehehehe and i think that came becasue of my families over protectiveness. I learned to ride a bike at the old age of 13 hehehehe. So do not worry yet... but do be Julia's advocate and if you believe that physical therapy or any type of intervention will help her do go for it. But I agree with the other post she has gone through alot at her young age and she probably will take a bit to catch up. I still feel like I need more rest than the avarage person but that is probably because my body works so hard to keep working.

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Posts: 1135
From:Fort Meade, MD
Registered: Nov 2005

posted June 15, 2006 01:46 AM               

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Thanks for the good advice and positive thoughts I guess I'm not *too* worried about this, but it's really hard to not constantly worry about things lol Hopefully this Early Intervention thing'll get going soon (actually, in reality, we probably won't start til late summer, b/c I'll be in NJ til the middle of July). She's been trying really hard to roll over, so we just have to build some muscles!!

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