[tri-med] Re: Nicholas update 5/12/07

Hope Nicholas continues to improve and they come up with some 
solutions for his osteoporosis. Get the rest while you can Jayne.

At 11:46 AM 13/05/2007, you wrote:
>Nicholas had surgery at 7 p.m. on Thursday on his left hip fracture 
>(we were told mid-morning).  The surgeon had to remove the previous 
>screw (from a previous fracture) and put in a plate.  He has a 
>purple cast from his abdomen, around the hips, and all the way down 
>to his left toes.  We were told he could come home on Monday or 
>Tuesday if his pain was under control.
>They currently have Nicholas on Methadone (Methadone is also used in 
>managing chronic pain due to its long duration of action and very 
>low cost), Morphine only if he needs it, Amitriptyline (for chronic 
>pain), Keppra and Topamax (for seizures) and 400 IU of Vitamin 
>D.  He is currently on continuous tube feeds @ 50cc's a hour.
>
>Nick's endocrinologist stated she would consider beginning Nicholas 
>on pamidronate if his lab studies showed a high bone turn over state 
>with other abnormalities, but his tests were normal so the 
>bisphosphonate drugs won't help him.  She has suggested Vitamin D 
>and we are currently seeking a second opinion.  Nick's 
>endocrinologist is the Assistant Professor in pediatrics with a 
>special interest in bone disease from Riley Children's Hospital in 
>Indianapolis.
>
>Nick's developmental pediatrician is currently seeking as he calls 
>it "the guru" of osteoporosis.  He knows of a physician in Louisiana 
>that is an expert on the disease and is trying to find out if there 
>is any other med that would work to help Nicholas in preventing fractures.
>
>Nick's echocardiogram came back normal.  He hasn't had any seizure 
>activity after starting the Keppra.  Nick is playing with his 
>musical toys and keeping himself entertained!
>
>(Mark is staying the weekend with Nicholas so I can rest before he 
>comes home.  woo hoo!)
>
>Mark & Jayne
>
>
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
>
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>10/05/2007 5:10 PM

Jocelyn, Wife to Frank, Mother to Ian, Gillian & Susan. Maker of 
quilts, singer of songs,
Nanna to Carly 19, Mathew 18, Ashleigh 17, Alex 15, and Tess 10 years 
old with T18.
also step Nanna to Carrie age 19. & Great Grandmother to Eli, Jonas & Escha.
Living in NSW, Australia 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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