Sunday, August 17, 2014

Getting Ready for First Grade!

I thought I'd post the notes I am using to chat with Ayden Jane's teacher before school starts later this week.  On any given day, Ayden Jane is as typical as the next first grader.  However, there are quirks the teacher needs to be aware of and extra things to keep AJ safe.

I always stick with a one page summary and use as few words as possible.  Lets face it, if it is too long the teacher may read it once, but it will not be useful for keeping around and referring to quickly.  I will meet with the regular ed and special ed teacher together even though Ayden Jane does not actually go to the resource room for services.

Prader-Willi Syndrome (PWS)
Approximately 1:15,000
Diagnosed by genetic testing showing deletion or duplication on the 15th chromosome

There is a very long list of challenges associated with PWS and for a full picture of the disorder you can visit and 

Medical concerns for Ayden Jane:

Dietary concerns:
Grain free sugar free diet (no crackers, pretzels, pasta, cookies, juice…)
Ketogenic – her body and brain use fats best for energy
Similar to diabetes, maintaining blood sugars evenly is important
Low metabolism – truly requires less calorie intake than a typical child
Does not feel ‘full’ and will continue to eat if offered – no off switch
Could become hyperphagiac
Extra focused on meals/snacks

Immune issues: 
Does not ‘catch’ viral illness easier but struggles to recover
May have odd skin reactions
Cannot fight bacterial infections – strep throat, sinus, pneumonia…
Please let me know of illnesses that ‘go around’

Odd and ends:
Diminished pain – Let me know if she complains for more than a few min.
Temperature regulation – Can over heat easily, even in winter with coat.
Strabismus – glasses

Sees OT for writing – it is awful ….
Takes in way more than she can express
Started preschool WAY behind her peers and has been slowly gaining since.  Pretty squarely average currently with the exception of handwriting.

Ridiculously hard working and independent – approaches everything with an uncanny optimism and confidence

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