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Post by lauraryan10 on Jun 20, 2005 23:00:56 GMT -5
I have a 2 year old that recently had x-rays for atlantoaxial instability. The Down Syndrome clinic called and said that the x-rays showed a severe instability. They want to send us to the neurosurgeon. I had many issues with the insurance company and finally received a referal number. Now, the neurosurgeon cannot get us in till August. When we received the x-ray report, it said Hayden had severe instabilty and they gave us a list of things he shouldn't do. I cannot keep him from climbing or falling or horse playing. I am worried about his neck because he is so rough with everything he does. Any suggestions? Has anyone had to deal with the fusion surgery (which is what they want to do)? I am also wondering, do they usually get an MRI to tell them more info? Laura Mom to Hayden 2
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Post by Alice on Jun 22, 2005 16:34:40 GMT -5
Hi there! A couple of years ago we had the same result from x-ray, then we had been sent to the neurosurgeon who sent us to make an MRI. MRI came back normal. From the begining I had feeling that everything is fine, just our Children's hospital wants money from MRI. Hope everything turns good for your child too.
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Post by meghans_mom on Jun 22, 2005 18:56:32 GMT -5
double check because i was under the impression that the x-rays shouldn't be done until age of 3 to be accurate. it also matters which way they take the x-ray (according to my radiologist) standing/sitting/lying down..but I can't remember what he said about that. But since you said DS Clinic I would imagine they know what they are talking about when it comes to kids w/ DS? Check Dr Len Leshin's website on what the recommendations are for taking the x-rays and follow ups. I wouldn't have that surgery so quickly if it were my child...but I honestly don't know that much about it. best of luck - laurie
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Post by poojamom on Jun 29, 2005 16:22:36 GMT -5
My daughter's x-ray did show instability when checked last December, our Dr. had us scared too with lots of Don't do's,but we got an MRI done and it came back O.K. Please check with your Dr. if you can get an MRI done even before meeting a neuro surgeon. Rajitha
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Post by hgiglio on Jul 18, 2005 21:11:10 GMT -5
I read your post after a very long absence from the board. I thought I should post since we went through fusion on our son Jake (now 6). He was 18 months old at the time and was in a halo for 5 weeks.
A chest xray was viewed by a tech and they noticed some instability that they thought should be checked soon than later. We did meet with both an orthopedic and nurosurgeon. We had a full MRI and it showed that vertebra 3,4,5 were way underdeveloped. 1 & 2 were still iffy since he had not reached the point where he was fully developed. Long story short, we had the surgery, and now Jake is healthy, active and strong as far as his neck is concerned. We recently had a new MRI to recheck 1 & 2. They were fine. We were concerned because Jake loves to jump, run, crash, and all that fun stuff. I teach gymnastics and he is always jumping off things. I was scared at the pressure this might be putting on his neck. We do have another meeting with a new orthopedic doctor since we have since moved. At the time we were in MI and Dr. Hensinger (one of the nations top orthopedic surgeons) was Jake's doctor. We actually just received advance copies of a new halo book the hospital did for others going through halo treatmens both for emergency and non trauma procedures. Jake is in the book. He was the first infant/toddler to be put in a halo for non trauma. It was amazing how fast he healed.
Definitely get the MRI. If nothing else, you will know your child is healthy and strong. If not, I can be your sounding board if you have to go through a surgery. Hope that everything checks out fine.
Just an FYI for others: Doctors are finding more underveloped vertebra now than in the past. I have been told that this is because kids with DS are now being checked routinely. They have found others with 3,4,5 being underdeveloped. Again, this is because they are checking for 1,2 knowing that those are the most common issues.
I guess the good news is that it is all fixable and our kids can still lead active lives.
Holly
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Post by samanthajosmom_12 on Jul 24, 2005 23:01:18 GMT -5
when should you have this xray done. what age? do you have to have a medical nesscary paper from the doctors to have for insurance reasons? i would like to get this done for samantha before the end of the yr. sue
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Post by kokie on Jul 25, 2005 17:05:33 GMT -5
I believe you have to have this x-ray done between 2 and 3 years of age, closer to 3, I think (?).
Qadoshyah
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Post by matthewtyler on Oct 24, 2005 12:01:09 GMT -5
We just met with a team of Down Syndrome professionals and one thing they told us was that the x-ray was standard screening, but to definitely have an MRI to confirm any abnormality.
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Post by Kristen on Oct 25, 2005 12:28:18 GMT -5
Carter's 2 year one was fine, but he just had to have one last week because soem di at teh child care center of the gym put him down a 15 foot tunnel slide ALONE. He went airborne and landed face first, legs back over the head. This one showed mild instability (I am assuming form the crash). I do know the first ones he was much more controled and on a table and these last ones he was on a chair strapped in trhwoing the mother of all temper screaming hitting fits. Poor kid was hurting. We have to go see a specialist, too, but I am leaning toward it being okay because of the hx. Definately get it checked out again adn get the MRI. I am going to ask for one to make sure, sure SURE and see if I can get one (I am not paying for it, after all)!
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Post by mom2josh on Jan 13, 2006 0:24:14 GMT -5
We are staying at Mayo (you know, the world famous for checking everything out and running every test), and when I asked for the x-rays (Josh is 3), they said that x-rays don't need to be done before six, and might not be reliable until then. Now you've all got me worried again, because, as you know, "being careful" is not in his vocabulary! Laura, I agree with the others, I would ask for an MRI...
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Post by sasykjn on Jul 15, 2006 20:05:01 GMT -5
i have a 10 yr old girl with downs syndrome and we recently had an mri, ctscan, xrays of the cspine done because her gait changed with a limp.............she has atlantoaxial disability of the c1and c2 and talking fusion, im not doing the surgery, i feel the halo would be detrimental to her mental health and i am yet to get one success story ..............the only ones i got so far ended in death or the surgery had to be redone.............im going to a ds clinic in texas for a second opinion........as far as the kids screaming during thse tests, nobody will ever strap my kid down , they give her versed nose drops which relax her and then they give her iv sedation for all of these tests..........its the fear that gets to them, more than the pain
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Post by ALLISA on Jul 16, 2006 9:50:24 GMT -5
I probably shouldn't respond here, since my facts may not be accurate....but there was a mom here who had the very tragic event of her daughter breaking her neck....how terrifying is that ?? She went to Children's in Boston and was anticipating a long hospital stay with the halo....BUT..... her daughter was the FIRST ever neck repair that required no halo.....she was home in less than 5 days I believe. Again, I don't know the full details.....but to me.....seems that since her neck was ALREADY broken...it would be an even harder recovery....... I went to visit them at the hospital because my daughter happened to have an appt. there that day and I was so concerned when they said she was no longer there......but thankfully the mom posted here and told their amazing news.
I'm not sure where you are from.....but...perhaps doing some research on Boston's neck corrections would be beneficial to you and your daughter......
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Post by Kristin on Jul 16, 2006 12:08:59 GMT -5
We had Clarice's first x-ray done when she was 2. Her therapist requested it as she was rolling in a head to toe direction across the floor. Our pediatrician agreed, she errs on the cautions side of things, and wrote the order. The first set of x-rays were not done correctly, so we had to have them redone. They shot the wrong angles.
Just before entering kindergarten, the school requested we do another. Since that was about the right time, the pediatrician again wrote the order. I learned, from the first time, not to use the weekend x-ray crew, and to go during the weekday when the more experienced personnel were there. That x-ray was fine also.
Both times, our pediatrician wrote the order, and both times the insurance covered it. There is a special billing code for Down Syndrome, and we never seem to need to argue with the insurance company when that code is used.
By the way, we downloaded and printed the article on Dr. Leishan's (sp?) website that is linked to Unomas that discussed the health milestones and has the growth charts. We gave these to our pediatrician, and she has kept them in Clarice's file to use as a reference when she comes in for a physical.
We've also shared the growth charts (along with the reference where they came from) with other specialists like the gastroenterologists who was trying to track Clarice's growth and height on a chart for kids without DS. Once he check the reference from where I got the chart, he agreed to use it. Sometimes the doctors don't have the information about Down Syndrome because they don't have time to research it. I often offer to send it to them, or I bring it along. As long as it is from a reliable source, most of them have paid attention to it.
Good luck. I think the MRI is also a good idea, it's hard to make decisions without all of the information available.
Kristin
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