Hi all,
Just found you tonight. I have been looking on tribe for a place to network with parents. In Asheville, I am a part of the Family Support Network, funded through the United Way.
What are the 'special needs' represented here?
I am somewhat of a veteran in the 'heart' world, so feel free to ask any questions and I will share as I am able.
Glad to have found you all.
Linda
Just found you tonight. I have been looking on tribe for a place to network with parents. In Asheville, I am a part of the Family Support Network, funded through the United Way.
What are the 'special needs' represented here?
I am somewhat of a veteran in the 'heart' world, so feel free to ask any questions and I will share as I am able.
Glad to have found you all.
Linda
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North Carolina
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Re: Congenital Heart disease
Sat, February 5, 2005 - 8:03 PMThis tribe seems to run the spectrum of Special Needs Parents. My son is autistic. He has been diagnosed for just over a year; he's three years old now.
Welcome!
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Re: Congenital Heart disease
Sun, February 6, 2005 - 6:47 AMWelcome Welsh,
My 12 year-old daughter has Down Syndrome and was born with an ASD. It miraculously closed itself up by her 2nd birthday. So, thankfully, I can say I know less about congenital heart defects (and disease) than I should. :) However, heart health is always in the back of my mind as you well know, her time is coming.
The tribe seems scewed to autism, but perhaps with a heart specialist in the house, it will bring more of a "variety" of specials out. :) -
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Re: Congenital Heart disease
Sun, February 6, 2005 - 9:05 AMAnn, all I really know about is autism, and not much at that, but I've only ever seen the acromyn ASD to refer to Autistic Spectrum Disorder, but that doesn't seem to be what you're refering to. What does your ASD stand for? -
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Re: Congenital Heart disease
Sun, February 6, 2005 - 9:41 AMASD..."An atrial septal defect (ASD) is an opening in the wall or septum of the heart muscle which separates the right atrium from the left atrium...
"Atrial septal defects are a group of rare heart defects that are present at birth (congenital)...
"In this disorder, the opening between the atria persists long after it should be closed, resulting in an increase in the workload on the right side of the heart and excessive blood flow to the lungs.
"Initially the symptoms associated with atrial septal defects may be absent or so mild that they may go unnoticed. Frequently this disorder is not recognized until school age or even adulthood. In adults with undetected atrial septal defects, various respiratory problems and/or heart failure may develop." -Web MD
Most people with Down Syndrome (not all) are born with major heart problems and/or major stomach/intestinal problems. Many babies require open heart surgery within the first 6 days to 6 months of their lives. We were lucky. My daughter's ASD (very common in DS infants) closed up on its own...a 5 percent possibility. Heart disease among the Down Syndrome population, though, continues to be a problem throughout their lives as are countless other chronic maladies.
Thanks for asking :)
AZ
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Re: Congenital Heart disease
Sun, February 6, 2005 - 8:50 PMHi again, Welsh!
My sons *main* special needs area is mental health (BPD, ODD) but is also a cardiac kid - when his heart problem arose (result of a virus) the psych meds which made his condition manageable at home had to be modified...some changed, others completely eliminated. As his physical health improves his mental state continues to deteriorate - my biggest problem now is that he needs a level of care which I cannot provide at home so residential care is looking like a very real possibility. -
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Re: Congenital Heart disease
Sun, February 6, 2005 - 10:59 PMHey Dawn.
Interesting note about ASD's ... the septum usually closes at birth as the little emerging human goes from being an aquatic dweller to an air breather. Some babies who don't make the transition at birth, make it within the first few days of life.
For that the parents can be very grateful.
We just lost a little girl in our community. She was downs and had AVSD. Her parents were remarkable and she made it through several surgeries.
What a bright happy child, we all loved her and will certainly miss her.
She died suddenly at home, just sitting on the bed with her little sister, watching a movie. No emergency, no drama, just a quiet passing.
I imagine that when her family moves beyond grieving, they will feel some bit relief knowing that she will not have to face any more surgeries. -
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Re: Congenital Heart disease
Sat, April 2, 2005 - 7:11 AMI asked my daughter what she wanted to say, he response, and she typed it ... 'scery'.
I feel it is important to offer children an outlet to express their feelings, just this month I was able to have a counselor begin work with my daughter. I am grateful for people in our community who have been so supportive.
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Re: Congenital Heart disease
Tue, February 28, 2006 - 2:17 AMHi parents....
First of all: I'm not a parent.
I'm a "young adult" (36) with a congenital heart defect myself (Tetralogy of Fallot).
During the volunteering work I did and do for the Dutch HeartFoundation and the Dutch Patients Association, I noticed that parents al full of questions they would like to ask to a "true" expert.
Feel free to ask all you want to know about living with a congenital heart defect.
Greetings and respect to all,
Peter Gerritsen.
PS: For "children" as old as me, why don't you join congenitalheartdefect.tribe.net/ ? -
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Re: Congenital Heart disease
Wed, March 29, 2006 - 5:58 PMPeter,
Did you have a surgery in your teen years?
Linda -
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Re: Congenital Heart disease
Thu, March 30, 2006 - 8:43 AMI "also" did have surgery in my teen years.
I had heart surgery twice at 10, once at 18 and once at 28.
(I'm 38 right now).
Peter.
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Re: Congenital Heart disease
Thu, March 30, 2006 - 8:44 AM(I'm 36, typo in last post....)
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Re: Congenital Heart disease
Tue, June 20, 2006 - 10:38 AMHad a significant Dr. appointment today and the most difficult aspect of the whole day was acknowledging the shortcoming of North Carolina Medicaid, they're just idiots .. they refuse to let kids leave the state to have surgeries performed elsewhere. Federal money to begin with, what's the deal? I'm too distraught to say much right now, but there are some base aspects of human nature that still amaze me. -
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Re: Congenital Heart disease
Tue, June 20, 2006 - 7:59 PMhmmm.....how about if you just happen to be on vacation near the hospital where the needed surgery could be performed? -
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Re: Congenital Heart disease
Wed, June 21, 2006 - 2:01 PMuhhhhh, I thought of having my x-husband move there to establish residency. -
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Re: Congenital Heart disease
Wed, June 21, 2006 - 2:20 PMalso a possibility....I know it sounds extreme to alot of people looking from the outside in, but ya do whatever ya have to in order to get your kids what they really need. I just moved to another state - timed it so I moved right after my medicaid recert so Matt would have coverage while I established residency. I had my fill of services not being available within hundreds of miles of my home, so I finally bit the bullet and moved to an area that actually has the resources my kids need. Extreme, I know, but there was alot more reason to go than to stay. -
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This is the maximum depth. Additional responses will not be threaded.
Re: Congenital Heart disease
Mon, November 27, 2006 - 7:00 AMWell, I didn't bite the bullet, instead we are scheduling a surgery within our home state of NC.
I had put together a plan to get insurance through the hospital where I work, to seek funding from foundations, and my daughter's surgeon, I had the ball rolling for fundraisers and then suddenly everything changed.
In a recent meeting, our Cardiologist asked that I not oppose the possibility of letting a doc here in NC perform the surgery.
I know the importance of team work, I have to contend with a hateful ex-husband who is constantly trying to compete with me, coupled with the substantial risk of not being approved for insurance, I decided that staying close to home was our best option.
I went through several days of fear, and now accept our limitations. This NC surgeon needs to have us behind him 100% and that is exactly what he is going to get. There is so much more to healing than modern medicine can offer, I know the importance of balance and love.
So onward and upward.
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Re: Congenital Heart disease
Fri, December 15, 2006 - 11:52 AMI'm new here and I have one son with Aspergers Syndrome and the other has VSD which is a heart condition in which there is a hole between the ventricals of his heart. He's also got bilateral colobomia of the iris. Both are healthy and happy boys. I do not plan on having anymore kids but I see these as a blessing and gift from God. I'm glad to have found this tribe. -
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Re: Congenital Heart disease
Fri, December 15, 2006 - 12:44 PMGlad to have you here! Welcome.
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Re: Congenital Heart disease
Sat, December 16, 2006 - 4:54 AMWelcome Boris, yes! children are a blessing.
I spent years kind-of resenting my overwhelming responsibilities as a parent, it just seemed too much...
but time and perspective have changed that for me, now I can honestly say that I see my children as gifts in my life.
And life is so precious.
I am not all that familiar about Aspergers Syndrome.
Would you consider starting a post so we could learn from what you have learned?
Happy Holidays. -
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Re: Congenital Heart disease
Sat, December 16, 2006 - 11:53 AMhere's a basic definition en.wikipedia.org/wiki/Aspe...s_syndrome
"resenting overwhelming responsibilities" is pretty much where I'm finding myself now even though I love my kids dearly.
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