Identical twin girls developmental delay/speech delay/anxiety and no answers, any thoughts?

Ericka - posted on 04/03/2012 ( 4 moms have responded )

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I have identical twin daughters, my angels, soon to be 7 years old. They were diagnosed, at the age of 2, with developmental delay/speech delay/sensory/anxiety. The girls have been to neurologists, genetic doctors, and more. All of them saying they are baffled, can't understand why the delays, every test coming up negative or rule outs of autism, they are highly sociable. No background in either family of anything like this, anyone with the same situation, or thoughts?

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Katrina - posted on 05/29/2012

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Yea me me I don't have twins but my 2 year old has the same thing I havnt gotten him tested due to I don't want hold him down he has so many sensory promblems taking him out has its own challege. I love to hear more info if you get any don't u hate how u can't get straight answers.

Marissa L - posted on 05/24/2012

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My daughter is in the same situation. She was diagnosed with global developmental delay (fine and gross motor, speech issues, sensory issues, dyspraxia, hypotonia, adhd, and exhibits symptoms of autism but she loves people and is very sociable so no autism diagnosis (been through tons of tests and docs can't find a reason for delays). She is 6, in Kindergarten, and performing below grade level. Her pediatrician has said we may never know a reason. It is so frustrating! Are your daughters receiving services such as OT and ST? Have they had any MRIs? I think the OT has helped my daughter with some of the motor delays and sensory issues. Every time I want to stop pursuing answers and just accept that there is no answer something comes up that pushes me to keep searching. When it comes down to it, all you can do is keep being an advocate for your children and get them as many services/therapies that you can (especially when they are old enough to go to school). It can be exhausting to keep searching for answers and seeing new doctors but I keep thinking to myself what if there is an answer and something that could be treated is missed?

Dana - posted on 04/12/2012

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Sounds EXACTLY like my son with one exception, he has Tourette Syndrome also (which has nothing at all to do with the other conditions, it's a totally separate issue, except the anxiety which goes with TS). It wasn't until my son was 9 when we realized the developmental gap was widening. That's when I took him to a Developmental Pediatrician. His IQ came back at 62. So I was told he has an intellecual disability and the reason it was not caught sooner was because it's not often noticed until the child gets older in years, but his behavior and learning is still at the level of a younger child. He is now 11 and in 5th grade, but his learning is on a second grade level. The doctor told me that more often than not, there is no reason that you can put your finger on that causes it. Don't be alarmed, I'm not saying that's what's wrong with your daughters. This is just what it turned out to be for my son. Good luck!

Iridescent - posted on 04/04/2012

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There are a lot more non-answers in health than there are answers it seems. There is a term for people that they can't figure out the cause of what is going on, but they know something is. It's SWAN - Syndrome Without A Name. I know that doesn't help like you wanted, but it was a huge thing I was taught at Mayo Clinic with my daughter where they deal with SWANs all day, every day.

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