ARPKD| CHF Alliance
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Normalizing Life Experiences

Normalizing life experiences…. We do what we can to keep our children healthy as possible.  Usually our kids don’t see themselves as sick and they don’t want to be treated as such.  They want to be just like other kids, they don’t want to be singled out, they don’t want to feel or be treated differently from their peers.    Our job as caregivers is to normalize their life as much as possible, try not make limitations greater then they need to be.

Understanding Lab Results

Do you need help deciphering lab results? Would you like a bit more information about lab tests drawn last week?
>Learn More

Spleen Guards

Splenomegaly is not a disease in itself but the result of an underlying disorder, of which there are many.  An enlarged, distended spleen unprotected by a rib cage is susceptible to injury. 

A spleen guard is a hard piece of molded plastic, individually fitted over the abdomen to protect an enlarged spleen.  The molded piece of plastic may be held in place by straps or a wide band of elastic, that wraps around the abdomen, fastened by Velcro secured on the plastic mold.  It is sometimes lined with soft material. 

To our knowledge there are no scientifically controlled studies that document its efficacy, only anecdotal evidence, and no documentation as to the methods and or specific criteria necessary for the fabrication of the device has been made

To order, contact your physician. 

For further questions, contact:
Christopher Nelson, CPO,
ABC Certified Prosthetist Orthotist,
NOPCO of PA (based out of the Children’s Hospital of Philadelphia).  Christopher has graciously agreed to take questions concerning spleen protectors.

215-590-7701
cnelson@bostonbrace.com


 

 




 

  Boy wearing spleen protector

 

Transition
Adolescent Health Transition Project

A resource and special interest group facilitates networking and exchange of ideas and information among health care professionals, youth and adults with special health needs, family members, policy makers, insurers, and others with knowledge and experience in the transition from child-centered (pediatric) to adult-oriented health care @
>Learn More
 

   

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