Alpha-1 Advocacy Alliance - Pediatric Liver Patients

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Testing for AAT Deficiency
Simply click HERE Alpha One International Registry
provides AAT Deficiency Testing. This AAT Deficiency Testing is a
COMPLETE CONFIDENCIAL TESTING SERVICE
and WITHOUT COST TO YOU.
This testing will include measuring the CONCENTRATION of AAT in your blood, determining the TYPE of ATT in your blood and (where appropriate) determining your AAT genotype by testing the DNA in your blood; State of the art, full-spectrum Alpha-1 Testing .

Please read the detail at: AAT Deficiency Detection Center

Pediatric Liver Patients

Children's Liver Association for Support Services

Alpha 1 is the leading genetic disease that affects children and leads them to liver transplantation. Infants who are diagnosed at birth are often found to be jaundiced for a prolonged period, have elevated liver enzymes, suffer from failure to thrive, low weight gains and projectile vomiting. Their tummies may seem to become large or they complain of tummy aches. Appetites are often diminished and the children exhibit an unusual amount of fatigue. A web site that addresses pediatric issues with liver disease as well as providing information regarding Laboratory Test ranges is the one provided by the:
Children's Liver Association for Support Services (C.L.A.S.S.).
1-877-679-8256
McBean Parkway #126
Valencia, CA 91355
http://www.classkids.org
They also provide a wealth of information regarding pediatric liver transplantation, liver function testing, biopsies, and stories from other parents about their own stories.

Children's Liver Disease Foundation

The following web site from the United Kingdom provides another well written over view of Alpha 1 liver disease in children. It breaks down information regarding the alleles, genetic chances, and basic information that is currently available to patients in the UK. It is provided by the Children's Liver Disease Foundation and provides links to other informational resources around the world.
http://www.childliverdisease.org/diseases/alpha1

In addition, patients may be alerted to a problem by a routine physical that reveals elevated liver enzymes. If you know that you are deficient in the Alpha 1 protein, you should make sure your annual checkup includes an examination of your liver enzymes.

From “The Archives of Disease in Childhood”

This well written article on Alpha 1 Antitrypsin Deficiency should prove to be reassuring to the parent of a newly diagnosed child. Drs. Primhak and Tanner provide a thorough description of Alpha 1, including diagnosis, explanation of phenotypes, theories on the development of liver disease, possible future therapeutics and the prognosis of patients who present with Alpha 1 as infants. Note the references at the end of the article as they lead to other excellent resource materials.
http://adc.bmjjournals.com/cgi/content/full/archdischild;85/1/2#Top

American Liver Foundation

The American Liver Foundation offers a comprehensive web site that discusses liver disease at length. You can find them at: http://www.liverfoundation.org

Nutrition in the Pediatric Liver Patient

This very intense article discusses at length nutrition in the liver diseased pediatric patient. While there is extensive reading here for the medical professional, there is also some helpful information for the parent. Because vitamins and caloric intake are usually high profile issues with children, I felt this article informs the caregiver about the necessary nutrients that may need to be supplemented in the diet. Additionally, the ramifications of improper nutrition and poor diet are noted and recommendations given to prevent malnutrition or malabsorbtion of nutrients. Again, this is a good piece of reference material to print off and take to your child's pediatrician.
http://www.nutrition.be/NUTCHOL.htm

Financial Assistance

For information about financial help with medications and transplantation, there are many areas of assistance.

Begin by asking your doctor about any programs they are aware of or participate in. Often they have samples of medications that they can supply or know of clinical trials where medications are provided. They may also have the paperwork to ask for assistance from the pharmaceutical company that manufactures your needed medication.

In addition, The Medicine Program offers assistance with prescription drugs and can be contacted at http://www.themedicineprogram.com They provide the application on line or you can request one by phone. There are income limitations, but they are generous. They do charge a $5.00 fee for each prescription application, but they provide refunds when they can not help you.

Every state has Title V coverage for children with special needs. Go to http://www.ichp.edu and search this site for information for your state.

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