Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 Welcome AnneMarie!! mom to twins Rudy (ds) & 13 & TJ 16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 Hello,Anne Marie Welcome to the list! My name is and I have 19 month old boy/girl twins. (DS) and Sloan Isis.You will ALOT of support and information from this list.I look forward to hearing more about you and your family. ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 Hi Anne Marie, Welcome to our group. You will find a lot of support, laughter, and amazing moms! Marcia Mom to Sara (DS) and 5 and Lucas 9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 Welcome Ann Marie. Sounds like you have a full house. This list is great fun and amazingly " relateable " . Mother to Quinn age 3, Sara and Maggie 1, Maggie has Ds. My family HI my name is Anne Marie and I am a mother of six children,my oldest is 7. I have one girl and five boys. Arielle is the oldest and a Godsend she helps me with everthing and everyone.I had twins 10 mts ago and one is DS. WE were shocked, but one look at his beautiful face and all the shock vanished. I always said God blessed me with six wonderful children, and having twins was such a joy. Addam is not to much behind ,they are great comfort to each other.Well I'll sign off for now as everyone is waking up. MY husband left for Kosovo on Friday,so my days are even more full now.Six mts will hopefully go by fast.Bye for now. Anne Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 Welcome Ann Marie You will love the info & support you get here I have 11 month old boy/girl twins.... Mason & Skylar(ds)they are a joy as are my other children!!! Amber : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 Welcome to the list Ann Marie and Family. I have 18 month old twins, Ashton and Landon. Landon has Down syndrome and Ashton doesn't. The list is great source of support and the people on here are wonderful. Again welcome to our cyber family. Huckabee mom to Landon (ds) and Ashton 18 months --- Anne Marie & Benoit <dbenoit@...> wrote: <HR> <!DOCTYPE HTML PUBLIC " -//W3C//DTD HTML 4.0 Transitional//EN " > <HTML><HEAD> <META content= " text/html; charset=iso-8859-1 " http-equiv=Content-Type> <META content= " MSHTML 5.00.2614.3500 " name=GENERATOR> <STYLE></STYLE> </HEAD> <BODY bgColor=#ffffff> <DIV><FONT face=Arial size=2>HI my name is Anne Marie and & nbsp;I am a mother of six children,my oldest is 7. I have one girl and five boys. Arielle is the oldest and a Godsend she helps me with everthing and everyone.I had twins 10 mts ago & nbsp; and one is DS. WE were shocked, but one look at his beautiful face and all the shock vanished. I always said God blessed me with six wonderful children, and having twins was such a joy. Addam is not to much behind ,they are great comfort to each other.Well & nbsp;I'll sign off for now as everyone is waking up. MY husband left for Kosovo on Friday,so my days are even more full now.Six mts will hopefully go by fast.Bye for now. & nbsp; & nbsp; </FONT></DIV> <DIV><FONT face=Arial size=2> & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \ nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nb\ sp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp\ ; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; Anne Marie</FONT></DIV></BODY></HTML> ------------------------------------------------------------------------ <pre> http://DSyndrome.com/Multiples</pre> <HR> <html> > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 Anne Marie & Benoit wrote: > > HI my name is Anne Marie and I am a mother of six children,my oldest > is 7. I have one girl and five boys. Arielle is the oldest and a > Godsend she helps me with everthing and everyone.I had twins 10 mts > ago and one is DS. WE were shocked, but one look at his beautiful > face and all the shock vanished. I always said God blessed me with six > wonderful children, and having twins was such a joy. Addam is not to > much behind ,they are great comfort to each other.Well I'll > sign off for now as everyone is waking up. MY husband left for Kosovo > on Friday,so my days are even more full now.Six mts will hopefully go > by fast.Bye for now. > Anne Marie Welcome Anne Marie! I'm Gail and I just had my twins almost 9 months ago, boy/girl twins, and Tara. Tara was born with Ds, and us too were shocked! But the saddness is wearing thin these days as Tara struggles to reach her milestones, hopefully all 4 of my kids pictures will be on here soon, Sara has them. I adore this list and would be lost without it, especially this first year as it has been an adjustment! Welcome aboard! Gail mom to Bobby-5 1/2, Jillian-3, and Tara{Ds} 8 1/2months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 Welcome Anne Marie & Benoit, This is an excellent list and you will laugh, cry, enjoy and find a lot of help and the people in here are great. I have almost 9 months old triplets, Carolina, Cristian and a-ds. The three of them are a big bless to our lives. I hope to hear more about you guys. Is your husband military? Mine was until two weeks ago. Take care. Mabel mom to Carolina, Cristian, a-ds almost 9 months >From: " Anne Marie & Benoit " <dbenoit@...> >Reply-Multiples-DSonelist ><Multiples-DSonelist> >Subject: My family >Date: Mon, 13 Dec 1999 08:43:37 -0500 > ><< text2.html >> ><< text3.html >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 Hi Anne Marie I am a mother of 4 children. on is nearly 8, is 6 1/2 (my little helper), Emma is 3 3/4 and Nicki is 2 1/2. Our youngest 2 girls both have DS and since they are only 14 months apart, we call them " our twins!! " . We have the opposite with our only boy being the oldest.....he secretly loves it!!! I hope you husband stays safe and you stay sane while he is away! Welcome to the group and you'll enjoy the sharing and caring here - it's very cool as are all the people here!! Take care Carolyn (from New Zealand) Mum to the list of cuties above!! My family HI my name is Anne Marie and I am a mother of six children,my oldest is 7. I have one girl and five boys. Arielle is the oldest and a Godsend she helps me with everthing and everyone.I had twins 10 mts ago and one is DS. WE were shocked, but one look at his beautiful face and all the shock vanished. I always said God blessed me with six wonderful children, and having twins was such a joy. Addam is not to much behind ,they are great comfort to each other.Well I'll sign off for now as everyone is waking up. MY husband left for Kosovo on Friday,so my days are even more full now.Six mts will hopefully go by fast.Bye for now. Anne Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 1999 Report Share Posted December 14, 1999 Welcome AnneMarie and family glad you have joined. This is a great list!! Kim mom to Abigail and ds - 2yrs and Mikayla - 4yrs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2001 Report Share Posted March 8, 2001 Ellie, We are very much the city folk here! Only gold fish for pets. but we do have 6 of them! I am a 2nd grade teacher. My daughter is 10 1/2 with DS in 4th grade inclusion. She is doing great, academically and socially. She goes to acting class with regular kids, sings in the church choir and her school chorus. She is in puberty and I hate it! She also has type 1 Diabetes which she manages very well. My son, is 6, non DS in first grade and way too smart for himself! My husband is a paraprofessional in the school system and he hates his job. He is waiting for the city to call him for a bus driver position which should be very soon! I also love Rivie's name both her real name and her nickname. One of 's friends name is Raine and I love that too! ~ Mom and wife to above Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Hi Stacie, So sorry to hear that your family is once again have a really hard time of it healthwise. I will keep you and yours in my thoughts and hope you have a happy and peaceful holiday season. Hugz to you, M in CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Welcome Terri! You'll get lots of information here. I have two boys with Shwachman-Diamond Syndrome who also have low immunoglobulins. They could have other diagnoses, but all of their doctors just stick everything under " Shwachman-Diamond Syndrome " They received IVIG for just over 3 years and we recently switched to SCIG (subcutaneous IG) and we LOVE SCIG. We use NuFactor www.nufactor.com <http://www.nufactor.com/> and they have been great every step of the way..getting us switched over and continued support. It is absolutely amazing how wonderful this company has been! If you would like to visit our family website www.shwachman.50megs.com <http://www.shwachman.50megs.com/> you can see pictures of my boys. IVIG/SCIG has drastically changed our lives. Prior to starting my boys had near constant infections and had very little energy. Now they are healthier and happier. I have one healthy son, too. I know that SCIG isn't for everyone, but we have enjoyed its benefits. My boys have not had any of the side effects they were having with IVIG (Headaches and sometimes vomiting from the severe pain of the headaches). With SCIG we can do it at home and the boys (and family!) really are happy that we do not have to go to the hospital! Welcome to the list! Peace Be With You, Pattie Don't let your past dictate who you are now, but let it be a part of who you will become. _____ Good Morning all and hello! We are new to this site and are excited to be part of it. I am a 46 year old mom of Molly (5) and Maggie (3). I was diagnosed with hypogammaglobulinemia as a child and received IMIG until I was 8. It was abruptly stopped when my mom decided I was well. My daughters have both been diagnosed with CVID. Molly has been receiving IVIG since December. While she still gets frequent breakthrough infections, they are no where near as severe. Maggie will be stating IVIG in 3 weeks with her sister. I still have a low B plymphoctye count although I have normal immunoglobin levels. I also have low lymphocyte counts in general. I have terrible arthritis in every joint in my body, chronic conjunctivitis, pan sinusitis...but while I have been told that I also have CVID, no one knows what to do with me. I have read that even though my immunoglobins are normal, because my b-cell count is low, they may not been mobilizing things the right way. I have read that I may also benefit greatly from IVIG. I would love to hear what everyone says. All three of us are experiencing this disorder in very different ways. We all have a polysachh. disorder. My bother, sister and both of her offspring all have CVID. Molly gets terrible pnuemonia every time she gets exposed to a cold. Maggie is beginning to get frequent lower respiratory infections....but she has had chronic diahrea since infancy. It has been a cahllenge getting the medical care that we need. Our pediatrician likened our family and physicians to the veritable dog chasing it's tail. They want to test and test and test....but he feels it is time to make us stop suffering and start treating us adequately. I have to take narcotic pain medication for my arthritis and I would love to see if IVIG helps. Terri _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Thanks! Sounds like mine. Molly had no energy at all prior to IVIG...would get up in the am and by noon she was plastered to the sofa. The most wonderful part of her treatment has been to see her energy levels soar. It is so funny,...she gets her IVIG and thant evening...she says she feels wonderful. I ask her how and she says she fells " confident " (is she just 5?) and full of energy. It is like a cup of coffee that lasts 21 days. I hope to see the same with Maggie as her energy level seems to be bottoming out. She gets up in the am and then wants to take a nap about an hour later. I hold her off til noon...she takes a 3 hour nap...gets up and is sleepy the rest of the day. It is very painful for me to watch. I feel terrible that my kids have to go through this...I struggled with the idea of putting them on IVIG and I still do....thinking that I was torturing them needlessly. I constantly tell my 5 year old, who says she wished she was a normal child, that she is normal...normal means different things in every family. Terri RE: My Family Welcome Terri! You'll get lots of information here. I have two boys with Shwachman-Diamond Syndrome who also have low immunoglobulins. They could have other diagnoses, but all of their doctors just stick everything under " Shwachman-Diamond Syndrome " They received IVIG for just over 3 years and we recently switched to SCIG (subcutaneous IG) and we LOVE SCIG. We use NuFactor www.nufactor.com <http://www.nufactor.com/> and they have been great every step of the way..getting us switched over and continued support. It is absolutely amazing how wonderful this company has been! If you would like to visit our family website www.shwachman.50megs.com <http://www.shwachman.50megs.com/> you can see pictures of my boys. IVIG/SCIG has drastically changed our lives. Prior to starting my boys had near constant infections and had very little energy. Now they are healthier and happier. I have one healthy son, too. I know that SCIG isn't for everyone, but we have enjoyed its benefits. My boys have not had any of the side effects they were having with IVIG (Headaches and sometimes vomiting from the severe pain of the headaches). With SCIG we can do it at home and the boys (and family!) really are happy that we do not have to go to the hospital! Welcome to the list! Peace Be With You, Pattie Don't let your past dictate who you are now, but let it be a part of who you will become. _____ Good Morning all and hello! We are new to this site and are excited to be part of it. I am a 46 year old mom of Molly (5) and Maggie (3). I was diagnosed with hypogammaglobulinemia as a child and received IMIG until I was 8. It was abruptly stopped when my mom decided I was well. My daughters have both been diagnosed with CVID. Molly has been receiving IVIG since December. While she still gets frequent breakthrough infections, they are no where near as severe. Maggie will be stating IVIG in 3 weeks with her sister. I still have a low B plymphoctye count although I have normal immunoglobin levels. I also have low lymphocyte counts in general. I have terrible arthritis in every joint in my body, chronic conjunctivitis, pan sinusitis...but while I have been told that I also have CVID, no one knows what to do with me. I have read that even though my immunoglobins are normal, because my b-cell count is low, they may not been mobilizing things the right way. I have read that I may also benefit greatly from IVIG. I would love to hear what everyone says. All three of us are experiencing this disorder in very different ways. We all have a polysachh. disorder. My bother, sister and both of her offspring all have CVID. Molly gets terrible pnuemonia every time she gets exposed to a cold. Maggie is beginning to get frequent lower respiratory infections....but she has had chronic diahrea since infancy. It has been a cahllenge getting the medical care that we need. Our pediatrician likened our family and physicians to the veritable dog chasing it's tail. They want to test and test and test....but he feels it is time to make us stop suffering and start treating us adequately. I have to take narcotic pain medication for my arthritis and I would love to see if IVIG helps. Terri _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 Terri-it is difficult. Isn't it? It took us a year to decide to put S & J on IVIG. We debated and thought it over. We had 3 docs wanting them to start and it took us a year. I was worried about it being a blood product, etc. after we started, I wished that we had decided to start earlier. The way I look at it-they do get pokes for IVIG/SCIG, but it keeps them out of the hospital and getting more pokes/IVs. I run and SDS lost for families and one lady wrote in with some questions and I thought I would share my reply with you.. Yes, normal is different in every family... here is what I wrote-while it doesn't exactly just stay with the being " normal " aspect, I thought it might be helpful -even if in some small way. I think the biggest thing that we try to do for our children is to teach them they are not defined by their disease... instead of repeating, let me just paste what I wrote--- what she wrote: Not to sound like a pessimist, however, don't you ever ask yourself why this is happening to your child or in your case your children? My reply: I suppose I have, but not often. There are so many suffering in this world and we try to focus on the blessings. Yes, they go through a lot, but at the same time, they will turn out to be extraordinary young men because of their life experiences. Honestly, we try to focus on their abilities and not the things they are unable to do. We've gotten back into piano because he does well and wants to continue lessons-this may be something he can excel in. He also plays sports-don't get me wrong. And yes, I have days where I get down because they can't do things (ride bike b/c of pain, etc) but when you think about it, we all suffer-no one on earth is exempt from suffering in SOME WAY. I do not wish they had to deal with this.but we try to teach them that everyone has their limitations and problems and it is part of life. They get SCIG now (before it was IVIG) and we don't let them think it is anything other than normal. It is part of their life and we do it, deal with it and get on with living life. There is no reason they cannot have a " normal " life and live life to the fullest-their disease does not define who they are or what they can achieve. They WILL do great things with their lives-maybe not what they would have done without SDS..BUT at the same time, maybe having SDS will propel them to higher achievements because of what they have had to do to persevere and make their way in life. God has a plan for their lives-we may not see it, but He has a plan. I know you've read some of what I have shared with Debbie about my family-growing up I was depressed and always wondering why God had placed me upon this earth in such a horrible family. I had a horrible childhood. Looking back, I know that God was preparing me for greater things. Read my signature line-I love that quote (unknown author)-it truly means a lot. As humans we sometimes get mired down in our past or what we've had to deal with. It is human nature. I tell people that I would never have wanted my brother to kill himself or have my other brother OD on drugs and die..or have Mike land in prison-but if I had not gone through these experiences, I would not be who I am today. They are the building blocks of my character-- had I not been " running " from my family life, I may never have joined the Army Nat'l guard or accepted a scholarship (Academic and athletic) at a university far from home. I often felt as if I was in the depths of hell and I was able to crawl out and survive... Not to turn this into a discussion of me-but just to say that bad things can turn into good things-adversity can inspire people to do extraordinary things. We also , as I said earlier, try to focus on our blessings-and teach the boys to do the same. Sure they go to the doctor a lot, but look at the blessings they have. Two parents who love them, opportunities to take special classical art classes, piano, football, go to the opera, food on the table and a home to live in. We are blessed to live in the United States of America. even when was laid off for 9 months and things looked bleak, we continued to count our blessings to get us through. Sure we worried about paying COBRA and not losing insurance coverage, but we made it through.and that which does not kill us, makes us stronger, right? Even during that time, we were blessed beyond measure. Sorry to ramble on-- where you are now is likely the hardest place to be in the SDS journey-going through diagnosis and not knowing or having answers... What she wrote: What did they do to deserve this? My reply: They did not do anything to deserve this. God doesn't work that way. Just like the man who was born blind-Jesus had to explain to everyone that neither his sins nor his parents sins were the cause of his being born blind. Stuff happens. It is hard to watch your children suffer, but they did nothing to deserve this--- and trying to figure out the whys of it all takes up so much time. ~sigh~ Peace Be With You, Pattie Don't let your past dictate who you are now, but let it be a part of who you will become. _____ From: [mailto: ] On Behalf Of Terri Cerda Sent: Friday, March 24, 2006 11:12 AM Subject: Re: My Family Thanks! Sounds like mine. Molly had no energy at all prior to IVIG...would get up in the am and by noon she was plastered to the sofa. The most wonderful part of her treatment has been to see her energy levels soar. It is so funny,...she gets her IVIG and thant evening...she says she feels wonderful. I ask her how and she says she fells " confident " (is she just 5?) and full of energy. It is like a cup of coffee that lasts 21 days. I hope to see the same with Maggie as her energy level seems to be bottoming out. She gets up in the am and then wants to take a nap about an hour later. I hold her off til noon...she takes a 3 hour nap...gets up and is sleepy the rest of the day. It is very painful for me to watch. I feel terrible that my kids have to go through this...I struggled with the idea of putting them on IVIG and I still do....thinking that I was torturing them needlessly. I constantly tell my 5 year old, who says she wished she was a normal child, that she is normal...normal means different things in every family. _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2009 Report Share Posted November 1, 2009 Hi i dont do to much writing here but I love to read all the messages I been with this sit for not to long and never post anything as far as starting a topic or even putting pix up, so today I decided to do both. I have noticed that most people on this group only have a child or two with this condition or just themself I have a whole family with it. It started with my husbands dad then he had 8 kids and 6 of them have it also my husband being one. we now have 3 beautiful babies that all have it. My husband and them have had the surgerys not so good though there is one thing or another that is wrong with each. My husband and them have lived there whole lives not even knowing what it is till recently (when I had joined) I had took my oldest to the eye doctor and she told us what it is. Now they want to do the surgeries on my kids and its not like I dont want it done for the health of them I just wish it was A procedure that we could do that WONT change the way they look I love there little eyes I think it is the most beautiful thing in the world. Even the first time I was pregnant my only wish was that my baby came out with little eyes and they all did. I dont want to see them any different then I see them now. I will try and get a big pix of all of them together. Until then I have pput up a few pix that I do have of them Quote Link to comment Share on other sites More sharing options...
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