Discussions By Condition: I cannot get a diagnosis.

Vague diagnosis for my son (PDD-NOS). Any suggestions?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: cjtucker
  • April 3, 2008
  • 05:46 PM

Hello everyone,

My now 4-1/2 yo son has had problems from birth. He's had a diagnosis of Pervasive Developmental Disorder-Not Otherwise Specified. He recently had his three-year evaluation for services at his school (early childhood developmental delay program), where they changed his qualification from autism to cognitive impairment. When I told his child neurologist (who gave the diagnosis a couple of years ago) about this, he responded, "It sort of does seem like cognitive impairment, doesn't it?"

Here is a list of many of his symptoms:
- didn't babble as baby
- colicky as baby
- spit up frequently as baby
- frequent earaches as baby
- apraxia (no speech, but understands language)
- unsure movement, rigidity, clumsiness
- fine motor impairment
- late crawling, late walking
- gross motor impairment
- sensory defensiveness (responds well to joint compressions, brushing, and deep pressure)
- irrational fear response to certain stimuli (group singing, cameras, hats, headphones, vacuum cleaner, animals, etc.) - this is getting better over the past few months, but he's still sensitive.
- apparent cognitive impairment (lack of conceptual understanding: colors, sorting, numbers, letters, commands, etc.)
- frequent night waking
- always hungry
- heavy
- gags/chokes on food frequently

He can also be very sweet. He's always made a lot of eye contact, and craves social interaction, almost excessively. His lack of spoken language seems to be an oral-motor problem. To me, he seems to have a thick tongue. He snores, too. I took him to an ear/nose/throat doctor, who said everything looked normal. He has no allergies. All of his blood work and genetic testing came back normal. He has a pretty normal attention span. He has normal features (aside from a gap between his front two teeth). He's starting to sleep a little bit better since we stopped giving him anything with wheat or dairy in it, and we're giving him 3mg of melatonin before bed.

A couple of years ago he had an MRI which showed "delayed myelination," but the neurologist has not ordered another MRI since.

We've come to accept his disability, but we would really like to get a better understanding of where these problems are coming from.

He has a younger brother who is typically abled.

Thanks in advance for any insights you can provide.

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