Medical Conditions?
@raisingsaints (217)
United States
June 4, 2007 1:53pm CST
My 3 year old son has Osteogenesis Imperfecta. It is a genetic disorder, although no one else in the family has it, that affects the collagen resulting in brittle bones. We found out when he was 9 months old. He had a broken arm, no crying, no swelling, he just wouldn't move it. X-rays revealed old fractures. Naturally we visited Child Protective Services, who told us about his disorder. He's fairly mild but has had two surgeries, receives drug infusions, and has to have four of his front teeth pulled.
Anyone else have kids with medical conditions? How does your family handle it?
3 people like this
4 responses
@sexysilver (928)
• United States
5 Jun 07
I have a beautiful baby girl who was born with NEC, a condition usually developed 3-10 after birth. She was care flighted to a better equiped hospital in Dallas and had her first of 3 intestinal surgeries at 12 hours old. Then at 6 1/2 months old she had a 4th surgery to insert a nessan to stop her severe reflux that was burning her esophagus & insert a mickey button (a feeding tube that comes out her stomach & is under her clothing).
As for handling her medical needs. Her medical supplies are delivered at home & I treat her like my 20 1/2 month old son (although now she's 10 months old). But I don't try to keep her from doing anything. I even had her walker and stroller modified so she can have her independence and move around & go out like her brother.
@sexysilver (928)
• United States
13 Jun 07
Yes, they are 10 1/2 months apart & we have a third due in July.
@raisingsaints (217)
• United States
6 Jun 07
As if pregnancy hormones aren't enough, you had the added stress of emergency surgery. I feel for you. And if I'm reading this correctly, your kids are only 10 months apart? Mine are 17 months apart and even that sometimes feels like I have twins.
We don't limit our son too much either. For the most part we let him set his own physical limits, within reason of course.
@maildumpster (3815)
• United States
4 Jun 07
Hi there. My son has a condition called Noonan's syndrome. I really don't know how to explain it as it is really a collection of features. His are mild in my eyes as he looks just like his sister and the doctor doesn't think she has it.
He has a heart defect which we are monitoring and if it does not improve on its own (or not get worse) he will need open heart surgery.
He was born 3 months early and he is delayed in all areas. He doesn't speak well yet; but he does speak. He only started walking independantly in February. He was getting speech therapy every other week and physical and occupational therapies every week thru early intervention. We are now working with the school system for them to pick up his therapies.
How do we handle it? As contrite as this may sound; we just take it one day at a time. Some days are harder than others but we get thru.
@raisingsaints (217)
• United States
5 Jun 07
Kids are remarkable aren't they?
You would never know that my son has brittle bones by looking at him, unless he's in a cast of course. He's small but other than that he's developmentally on track. It sounds like you have a lot more to deal with than we do.
We take it one day at a time too, some days are just heart-wrenching, when I see how much physical pain he's in, or when other kids and adults make unnecessary comments. Most days are just fine though.
We also have a daughter who doesn't have OI. But we always run the risk if we have more kids, which we plan on. Same for you?
1 person likes this
@maildumpster (3815)
• United States
7 Jun 07
Kids are truly remarkable.
We run a 50% chance of having another child with Noonan's.
I am going thru some stuff right now and my brain is just having issues dealing with stuff. I would like to say more but I just can't right now.
@KissThis (3003)
• United States
5 Jun 07
My daughter has sacral agensis. The easiest way to explain this condition is to say that her spinal cord didn't fully develope. She doesn't have a tailbone so she doesn't have the nerve endings that relate some of the information to the brain. She can't feel the need to go to the bathroom like other people can. My daughter wears pull ups in case she wasn't able to get to the bathroom in time. She was also born with a heart defect which they did open heart surgery on. She now has a pacemaker.
When I learned of my daughters defects I made a point of learning as much about wach condition as I could. That way I had the knowledge to make medical decisions for her without having to rely on a doctor to be fully honest with me. I have never taken a doctors word as gospel. They told me when she was 5 months old that she would never be able to walk on her own. My daughter has walked on her own since she was about 15 months old. You have to have faith.
@raisingsaints (217)
• United States
5 Jun 07
Wow, open heart surgery. That would give me a few gray hairs:) My son's surgeries were much more minor, two osteotomies, one rod in each arm. He was double-casted for a couple of weeks. It didn't seem to affect him at all. Resilient!
We did a lot of research too, and joined an Yahoo group for families of OI. That's where we got the best information.
We were told that our son would break multiple bones learning to walk, and may have to use a wheelchair. He broke his arm once while learning to run and has yet to have a leg cast. But that's also the nature of his disease in terms of severity.
Faith is essential.
