Introduce Yourself Here Please

[Kimberly]

Welcome Ithomp! My son, Ethan, is a ZZ Alpha and had problems with his direct and indirect bili at birth as well. He still sees a pediatric gastroenterologist every 9 months or so but he is doing great in terms of his liver and the enzymes. He was diagnosed as having seasonal asthma and allergies about 2 years ago. We recently took him to a pediatric allergist, on the advice from our pediatric GI, and surprisingly enough he has no allergies. I was sort of hoping that maybe the visit would give us some answers but he has just left us wondering what is going on in that little body of his. In the past he has used a nebulizer and it never really seemed to help. Does it make breathing easier for your children? I am sort of wondering if I need to take him to a pediatric pulmonologist as well. Let me know how the appointment goes for your children. A few extra notes...Ethan is 4 years old and takes a 4mg chewable tablet of Singulair each night before he goes to bed. I also have Zyrtec for him but that doesn't seem to help much.

Kim,
Mommy to:
Ethan, ZZ (02/02)

[lthomp]

[quote]<i>Originally posted by Kimberly</i>
<br />Hi Kimberly,
His appt is scheduled for the end of March but I will let you know how it goes. I'm trying diligently to get it moved up. He usually has a couple of bouts of bronchitis a year and is on singulair and Advair. He gets to feeling better and quits taking the medicine. I think with this last scare - he will do better however. They just upped the Advair dose from 100/50 to 250/50 in the hopes that it will keep his airways open. I wonder also whether there is ties to the alpha 1 versus the lung ailments he has. Hopefully the pulmonologist will shed some light.
-Lisa,
Mom of
son - ZZ (11/89)
daughter - MZ (4/93)
son - ZZ (6/94)

[jenchar]

Welcome Lisa!

Please see my response to your questions about lung issues in childhood. http://www.alpha1.org/bb/topic.asp?TOPIC_ID=142

I made a new post so more people would notice it.

Jen

Jen, mom of:
Grace, Alpha-1 ZZ (4/02)
Meghan, Alpha-1 ZZ (5/04)
Wisconsin
www.caringbridge.org/wi/alphagirls

[mom.of.bianca.chase]

For the second month in a row, my 20 month old son has had high liver enzymes (AST/AGL) and now the results also show alpha-1 antitrypsin deficiency. Today they sent off blood work to check for the genetic markers for alpha-1. We won't know anything until next week. When we met with the specialist today, all I heard was liver transplant. I am confused and concerned. Any information will help me. How do you know when a liver transplant will be the course you need to take? Do enzyme levels reflect that? My son's behavior is quite normal. Plus, the fact that this deficiency has to come from both parents also confuses me - I just see the likelihood of my husband and I both carrying this gene as being remote considering the fact that he is Hispanic and I am white. How can this be?

[jenchar]

Hi Stacy,

Welcome to the Alpha-1 Association bulletin boards. First, I’d like to share that I remember being in a similar position when my oldest daughter, Grace, was diagnosed. It felt like the longest 3 weeks of my life waiting for her phenotype test to come back. Hang in there, and we’re happy to help you in any way possible by answering your questions or sharing our personal experiences.

When my husband and I were first approached by a GI specialist, we were caught off guard and quite confused. The doctor kept asking us if any members of our families had ever had emphysema or liver issues. I didn’t know of any and neither did my hubby. I finally asked her, “Why?â€

[mom.of.bianca.chase]

I am officially the mom of an alpha-1 ZZ child. We got Chase's results back yesterday. He is ZZ. We don't get in to the hepatologist until 4/26 to discuss what this will mean for us as a family. My daughter's blood was drawn yesterday to test her. My husband and I will get drawn on Monday. I am looking for a support group. We live in San Antonio. I am reading everything I can get my hands on about this. So, if anyone has anything,send it my way. We plan to go to Houston's Texas Children's Hospital for another opinion.

Please let me know what other mom's of alpha-1's do to protect their kids. Thank you!

Stacy
Mom of
Chase (7/04) ZZ
Bianca (3/02) unknown - waiting for results

[jenchar]

Stacy,

I’m so sorry that Alpha-1 has entered your life. I remember how I felt with a final confirmation of my oldest daughter’s diagnosis. It was devastating and overwhelming all at the same time. I didn’t understand because there was so little information and then I felt like I had too much information. Little by little, I came to accept Alpha-1 in our lives, and now I can see one positive effect it has had on my family. We don’t take our time together for granted anymore. Each day is a blessing. Another positive is that the Alpha-1 community is so welcoming and “thereâ€

[denise]

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Denise

[jenchar]

Hi Denise. Welcome to the Alpha-1 Association bulletin board!

Jen

Jen, mom of:
Grace, Alpha-1 ZZ (4/02)
Meghan, Alpha-1 ZZ (5/04)
Wisconsin
www.caringbridge.org/wi/alphagirls

[bluefire]

"I'd also love to hear from adults who were diagnosed as a child."

Jen,

You asked to hear from other Alphas who were diagnosed as a child. I am a ZZ both liver and lung affected. I was diagnosed when I was 7 months old. By the time I was 6 years old I had had 2 liver biopsies and been hospitalized at least two weeks out of every month with pnuemonia. I was diagnosed with emphysema and cirrohsis of the liver at age one year. In 1973 when I was diagnosed with A1AT it has only been discovered 7 years prior to my birth. My parents were told that I would not make it to be 6 years old and when I made it to 6 they were told I would not make it to 12. Well guys I am now 33 and still alive and kicking. My mother moved me from WV to Florida for a couple of years which seemed to help my lungs greatly at the time. Although my liver continued to swell periodically until I was about 8. However since that time I have not had one single problem with my liver.

I do still have emphysema and I am starting to have more problems now that I am older. However, I went from age 6 to age 26 before I started having any further lung detioration. Still my lung function is good enough that I am just now considering going on Prolastin.

If any of you have any questions or would like to speak with a former alpha child please feel free to ask me any questions. I can tell you I have been educating doctors on alpha one since I was 6. I have been able to spout off I have emphysema, cirrohsis, and the alpha 1 anti-trypsin deficiency. It is very important your children are aware that they have this diagnosis.

But it is also important to let them lead a normal life. All I ever wanted was to be like the other kids and be able to run all the laps in gym without having to stop because I could not breathe. To be able to walk up steps without getting winded. Alpa children feel different but long to be normal and at times may lash out because of their frustration.

If I can help let me know.

[jenchar]

Welcome to the Alpha-1 Association bulletin boards Val (bluefire)!

You and I are of a similar age. I was born in Oct. 1972.

I'm so very grateful that you've shared your experiences with us here. I must admit when you said that you had emphysema as a child, I was greatly taken aback. Everything I'm told by doctors and specialists says that the lung damage comes later. But I will say that I had always figured that my daughters' lungs are being damaged slowly with each day. I keep them inside on ozone action days and make sure that I get them to the doctor quick if I suspect a chest infection. I also keep them away from harsh cleaners with strong odors and such. But, I've learned that I can only do so much. What will happen, will happen. Speaking as a parent, Alpha-1 is a really hard pill to swallow because I can't control it.

My husband and I decided that we would start talking about Alpha-1 with our girls from the beginning so that it would be normalized for them. They attend our local support group meetings with us and now actually have 3 Alpha-1 kid peers. My daughter Grace actually calls those meeting the "Alpha friends." She refers to herself as an Alpha, and tells people her liver is "kinda brokey." She actually asks me if things I'm using as cleaners are things she can be around, and she is pretty vocal with strangers she encounters who smoke. She'll yell, "Stop that yucky smoking! It is hurting your lungs." We mostly get scowls from those individuals, and I've had to tell her that each person makes choices in his/her life. I encourage her to choose things that are good for her. And, I do recognize that talking about making good choices is very easy with a "black and white" 4 year old thinker. We'll see what kind of challenges she is confronted with as she gets older especially in her teenage years. Overall, my husband and I try to lead by example for her. We don't drink and don't smoke.

So here are my questions for you:
1) Did you ever try smoking cigarettes or other "wacky" substances? I wonder how my girls will do with this in their teenage and early 20s years.
2) Do you think you would have benefited from knowing another child (as you were growing up) who had Alpha-1 too? I don't want to shelter my girls, but I know that by exposing them to the world of Alpha-1, that they will eventually be exposed to the pain of Alpha-1 such as losing a friend to Alpha-1. Our support group lost one member when Grace was 2, and she still directs prayers to Mr.Gary in heaven. I'm not actually sure she remembers him, and think that it may just be a habit to remember him. ???

Overall, we treat both of our girls like normal kids. They play, laugh, learn, and enjoy life. Unfortunately, we do not know what lies ahead for them both. I am glad that they have each other, though. I can only hope that life is kind to them as we travel on their Alpha-1 journey.

Finally, I truly thank you for sharing some of your experience with us here. I'm also on the board of a new organization called Alpha-1 Kids which has partnered with the Alpha-1 Association. It is just in its "infancy" and was founded by Mark Rabush and his wife, Melissa Seigman. http:www.alpha1kids.org (more info will be added later this year) We'd love to have your input if you wouldn't mind. Let me know your thoughts by sending an email through this forum.

Thanks again!
Jen

Jen, mom of:
Grace, Alpha-1 ZZ (4/02)
Meghan, Alpha-1 ZZ (5/04)
Wisconsin
www.caringbridge.org/wi/alphagirls

[bluefire]

[quote]<i>Originally posted by jenchar</i>
I'm so very grateful that you've shared your experiences with us here. I must admit when you said that you had emphysema as a child, I was greatly taken aback. Everything I'm told by doctors and specialists says that the lung damage comes later. But I will say that I had always figured that my daughters' lungs are being damaged slowly with each day.

You are very welcome I am glad my experience could help. I still have emphysema and I have always had it. Emphysema, Cirrohsis, and Alpha-1 have always been apart of my life.


So here are my questions for you:
1) Did you ever try smoking cigarettes or other "wacky" substances? I wonder how my girls will do with this in their teenage and early 20s years.

I never tried smoking or drinking or any other "wacky substance" as a teenaager. My mother told me if I ever smoked one cigarette I would die instantly. By the time I was old enough to realize she was full of it I was smart enough to realize the real damage it could do to an Alpha.


2) Do you think you would have benefited from knowing another child (as you were growing up) who had Alpha-1 too? I don't want to shelter my girls, but I know that by exposing them to the world of Alpha-1, that they will eventually be exposed to the pain of Alpha-1 such as losing a friend to Alpha-1. Our support group lost one member when Grace was 2, and she still directs prayers to Mr.Gary in heaven. I'm not actually sure she remembers him, and think that it may just be a habit to remember him. ???

I think knowing other Alphas would have been invaluable to me as a child. I did not meet my first Alpha until I was 26. Knowing you are not alone and not so different makes all of the difference in the world. Fortunately in the case of your girls they have each other, but please do not shelter them. Keep them in the Alpa-1 family. It is very important that they feel normal.




Finally, I truly thank you for sharing some of your experience with us here. I'm also on the board of a new organization called Alpha-1 Kids which has partnered with the Alpha-1 Association. It is just in its "infancy" and was founded by Mark Rabush and his wife, Melissa Seigman. http:www.alpha1kids.org (more info will be added later this year) We'd love to have your input if you wouldn't mind. Let me know your thoughts by sending an email through this forum.


Jen--I reviewed the Alpha-1 kids website what you guys are doing is a great thing. I would love to assist in anyway possible even if it is just to offer an unique perspective. I have been a child with Alpha-1 I still remember what it felt like to be different. I remember my thoughts and feelings. I also remember going into adulthood getting married considering having children and how having Alpha-1 has affected all of those decisions. It has affected every major decision I have ever made in my entire life.

Please all parents out there please know that Alphas are survivors. They are fighters. Your children are strong and the things they need most are the love and support of their parents. If there is anything I can do for any of you please let me know. If any of you have any questions or just want to know what your child may be thinking because they may not be opening up. Let me know I may be able to help. Alot of times Alpha-1 makes children wise beyond thier years.

Thanks for listening to me prattle.

Val

[kiwi1]

Hi, we recently found out about alpha 1's existence.
my daughter was tested for coeliacs disease when we were at the paediatrition and without us knowing, he ordered her blood to be tested for alpha 1 whilst they were taking blood. It was a complete surprise...she was zz however seems to be well apart from chronic asthma which I just assumed was unconntrolled asthma. As I am an asthmatic i have now been tested and am awaiting results for this myself and also liver funct' tests for us both.
I totally relate to wanting to bubble them up but at least we've found out and can slow any damage. Our doc said if she gets a chest infection she will need 2 weeks of antibiotics. Something I'm not historically fond of also having flu injections...also something I've been wary of in the past ...is this similar info others are given outside of NZ?

[Andrielle]

My name is Andrielle.
My daughter Caitlin was born on February 25, 2005. She was diagnosed at 3 months with Alpha 1 ZZ. She was getting checked every 3 months, until April when her numbers (ALT & AST I think) dropped 104 and 30 points respectively, now she is being tested every 6 months. So far she has been doing great, Thank God.

Mommy to Caitlin- (2/25/05) Diagnosed with Alpha ZZ on 5/23/05

[jenchar]

Welcome Kiwi1 and Andrielle! I wanted to quickly acknowledge your posts and welcome you to our little corner of the Internet. I'm a bit busy this weekend with my sister's graduation and mother's day so I'll be back soon to give you a proper welcome.

Stay tuned! Thanks for your patience.

Jen

Jen, mom of:
Grace, Alpha-1 ZZ (4/02)
Meghan, Alpha-1 ZZ (5/04)
Wisconsin
www.caringbridge.org/wi/alphagirls