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Jennyfoo
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Gender: Female
Posts: 532

21 Aug 2007, 2:54 am

So, I didn't know what Fragile X was and I had read that the UC Davis MIND Institute also works with Fragile X patients, so I decided to look it up. I may have found my answer. Time will tell.

My near 5 y/o has many symptoms of ASD, but he's also social and very friendly, sweet, cuddly, etc. These are reasons why I kept doubting that he might indeed have ASD and one reason why I didn't have him evaluated sooner.

Fragile X signs/ssymptoms: (all of these are signs my son has)

-hand-flap and other stims
-have sensory integration problems
-avoid eye contact like ASD children
-seek sensory input by mouthing items, biting things, sucking on fingers and hand, etc
-have agression problems
-are developmentally disabled, have learning disabilities, or a degree of mental retardation
-speak quickly and rush words, trip over words, obsessively talk of the same thing, or repeat phrases over and over again.
-short attention span
-overemotional
-tantrums
-large head, large forehead, puffy eyelids, long face(which gets longer as they age), flat feet
-autistic symptoms
-friendly, outgoing nature


My 4 y/o daughter was assessed at the MIND inst. as an infant. She had a referral due to concern of microcephaly. She passed with flying colors at 6 months old and 1 year. On her first visit, at 6 months old, the specialist asked if our son had been evaluated. He came along with us to the appointment. We told the specialist that he had not been evaluated and that he was meeting hie developmental milestones on target. She said that just due to his physical appearance, she would be more concerned with him, than her. Perhaps we should have listened. I feel like an idiot now for not having him assessed earlier.

We switched medical networks so that he can be seen and evaluated at the MIND Inst. He will see his new pediatrician in 2 weeks and she will give referral. I was told that due to his "special needs" qualifications and prior history in foster care, that they might be able to get that referral in sooner and speed up the process a bit. I hope so. At least if is is Fragile X, a simple genetic blood test can give a diagnosis.



Izzie07
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Joined: 25 Feb 2007
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Location: Los Angeles, CA

21 Aug 2007, 3:18 am

I've heard a lot of good things about the UC Davis MIND insitute. Dr. Robert Hendren's from MIND had a presentation this past april about the update on studies on autism and it sounded great.