Son Diagnosed with Alpha 1 Anti Trypsin Deficiency

did you look it up on google? this is what i found by google.com so maybe you can go there. sorry i can not help much. i have never heard of this. but when i saw it i was interested in what it was. so i googled it.
The Alpha-1 Association is a member-based not-for-profit organization dedicated to identifying those affected by Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improve the quality of their lives through support, education, advocacy and to encourage participation in research. Alpha-1-Antitrypsin Deficiency (Alpha-1) is a genetic disorder that can cause liver and lung disease in children and adults.

Welcome to the Alpha-1 Association. You are probably here because you or a family member has just been diagnosed with Alpha-1. Perhaps your doctor didn’t tell you much about it. Perhaps he or she told you he has never had a patient with Alpha-1. At this point you have more questions than you have information. The Association is here to help you understand the diagnosis and provide you with the education and support to empower you in coping with Alpha-1.

A serious genetic (inherited) diagnosis can leave you feeling afraid and unsure of what to do next. This can be a very difficult time for you and your family. It is often overwhelming to think about the care, the treatment options, possible lifestyle changes and the effects this will have not only on your life, but on your immediate family. A diagnosis of Alpha-1 could impact your family including brothers, sisters, children and grandchildren and possibly your extended family members.

You may be experiencing uncertainty, anger, fear, guilt, grief, and frustration. These are all normal feelings. Your next step is to learn how to cope with these feelings. You accomplish this through a step-by-step process of:

•Education: Knowledge is the key to understanding the diagnosis of Alpha-1. The Alpha-1 Association provides a Patient Information Hotline (1-800-245-6809) for your convenience to access a multitude of resources including printed information and one-on-one peer connections with other Alphas and physician referrals if needed. Our free and confidential Genetic Counseling Center (1-800-785-3177) can help you understand your test results and provide information about family inheritance/risk factors, testing options, health management and other resources.

•Support: The Association has more than 70 Support Groups throughout the United States. The Patient Information Hotline (1-800-245-6809) will connect you to a local or virtual support group. We also provide a Peer Guide Program (1-877-346-3212) connecting you with another Alpha who has a similar situation. A Genetic Counseling Service (1-800-785-3177) is available to you if you have questions about how Alpha-1 affects your family members.

The most important message to share with you today is that you are not alone! The Association is here to help you—to answer your questions, to recommend a physician, to provide you with literature, to refer you to other resources, to connect you with other Alphas who have faced this diagnosis and who are taking charge of their health and their life!

Please be sure to sign up to our mailing list to receive invitations to meetings and education events in your area and received our Community Currents, our e-newsletter.

Good morning H., I sent you some internet search info sites and hope they help you find answers and equip you with all the knowledge necessary to help your infant son..It indeed is overwhelming when our babies are afflected with conditions as I know was the case for me with my son Tommy with Autism..Try to remain strong and do all you can in your power to help him..It is also good to have a strong support system with family and friends..I wish you the best in this.
Bless you and your little one,
D. L

H., I'm so sorry to hear of your diagnosis. I don't have any direct information, but I did a search for this on-line to find out more about what this is. I help people nutritionally for health problems but hadn't heard of this. I found a web site of a national organization with support groups across the country. It's http://www.alpha1.org/index.php I also did find some web resources for nutritional support of this genetic disorder. On the surface there seems to be no nutritional cure, but optimum nutrition for your son will be important to minimize any future lung or liver problems. Thank God your Drs. diagnosed this early. Since he has a mild case right now, from experience in other areas, I believe that with proper nutrition and supplementation you can minimize the related health issues and he can lead a normal life.
A.

my dr at moffit cancer center introduced me to a great web site, its called webmd.com, type in the diagonis and it will bring up the cause, the treatment, and ect ect
the way i look at it is if a specialist at moffit recommends it as well as 3 other of my specialists, (the liver dr, the lung dr and the ent dr, its got to be good)
ive used it for research for over 3 years now. i was born with yellow jaundice over 65 years ago. what has happened after 50 years it has weakened my liver, BUT that is me, i was also tested by alpha 1 teating lab. i mailed in my blood test results that they required and found out that i was misdiagonised, a lot of look alike symtoms, is what they said. there is a very special very expensive test that most insurances dont pay for, that is required to make sure that it is the proper diagonis,, the orginazation test me every 5 years to make sure, they pay for it if you sign the papers to volunteer for the testing.this may not be the case for you, please remember that everyone is different.....i still have the paper work and if you are interested please let me know and ill give you the info, i was very relieved and thankful to find them, so was my primary care dr. ____@____.com my name is J. please feel free to email me good luck and GOD BLESS

Good Luck and God Bless your family! Hearing that there is even a tiny imperfection in your wonderful miracle is hard to take, but good for you in being proactive and trying to find out what you can do.
I would first give your little guy lots of hugs and kisses and then get a second opinion just to set your mind at ease.
I have never heard of A1AD so I did a quick google search. From Wikipedia I basically found out there are two types liver and lung. All this basically said is keep him away from cigarettes!
Here is a website that might be helpful to you http://www.alpha1.org/ it is the Alpha-1 Antitrypsin Deficiency Association. I'm sure there are people there that will be ablet to answer all your questions and talk you through everything. I find it's always helpful to talk to people that are in your same boat.
I know that sometimes all of this can get quite costly for the family. If you are in the Central FL area and would like to hold a Pampered Chef fundraiser party, either for the association, your local hospital, or to help your family at this time. Let me know!

Good luck and if you need to talk or anything, let me know! I'm here to listen. :)