Guest guest Posted October 23, 2010 Report Share Posted October 23, 2010 Yes, you're right. A CT has way more radiation. > Hello and welcome to CAST! > > We are in Los Angeles and we travel to Salt Lake City to Shriners Hospital > for > Children. I do not think anyone is San Diego has hand on Mehta casting > training. > I am just a parent, but that is my understanding at this time. > > I am so sorry for all that your wife has gone through and for what you are > going > through now. This is the worst part, it really is. Casting is very do-able > and > harder on the parents than the child. I don't think our son is at all > traumatized, the hospital in SLC has been the best medical experience of > our > lives. We just wish we had begun sooner, but it is still the very best > option > and worth every moment. > > Time is vital to catch growth spurts and use growth as a natural > corrective > force. In our case, 3-6 weeks would probably made a world of difference in > the > length of treatment time for our son, but with progressive cases, bracing > often > does not hold the curve. That could lead to surgery much younger than the > age > your wife had it. Generally, the longer you put off surgery, the better, > and > casting is non-surgical and temporary. Once surgery is begun, there is " no > going > back " . > > > I understand the anger. I have not heard of a CT scan on this group, I > think it > may be too much radiation- much more than X-ray, please someone correct me > if > I'm wrong. Is there a specific reason for a CT? An MRI is needed to rule > out > other issues, like tethered cord, etc. > > Most orthos and pediatricians do not know about his condition or proper > treatment. You can read our son Bexon's Story on www.GirltoMom.com - click > on > Bexon's Story at the top of the home page. Hang in there, it gets better! > > > > Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City > Shriners, > currently down from 62 degrees to 20 in cast) > > > > > ________________________________ > From: Toney <gotmaps@...> > infantile scoliosis treatment > Sent: Wed, October 20, 2010 2:05:52 PM > Subject: Introduction > > > Hello everyone, > > The quick introduction: I'm the father of a 2 1/2 year old girl named > . > We're with Rady Children's Hospital in San Diego. At 6 months old (August > 2008), showed a 10 degree curve. Last year (November 2009), she > was at > 15 degrees. This month, she was x-rayed at 47 degrees. Her doctor is > recommending an MRI and CT Scan, and Casting. We are visiting her > pediatrician > tomorrow to discuss everything and get her thoughts. > > My wife is 37 years old, and was diagnosed with Infantile Scoliosis at > birth. > She endured bracing growing up, and at 9 years old, had two surgeries at > ish Rites in Texas (1982). > > We're dealing with a lot of issues - not only what is about to go > through, but dealing with all of the issues my wife has, reliving the > experience. It's hard to separate herself from 's experience. A > lot of > time growing up was dealing with doctors that wanted to 'practice' > medicine on > her. She remembers vividly getting intubated, being put out, being left > in > hallways, and being taken from her parents, kicking and screaming. So, as > we > enter this experience with , it's hard to not feel like those will > also > be 's experiences. We're worried all of that plus needles, IV, > anesthesia, the necessity of the MRI and CT Scan, bracing vs casting, etc. > There are anger issues related to what she went through, and how her > parents > handled it. > > The longer story: > > Prior to birth, my wife received an ultrasound that showed no evidence of > scoliosis (as I said, she was diagnosed at birth). At 3 months old, > was > diagnosed with juvenile xanthogranuloma (JXG), hip dysplasia and > torticollis. > Dermatologist watched the JXG (curious if anyone else has experience with > JXG?), > and we did physical therapy for the hip dysplasia and torticollis. At 6 > months, > we did an x-ray, and since she was only at 10 degrees we did a 'let's > watch and > see what happens with the scoliosis'. > > In November of 2009, we did another x-ray, and was at 15 degrees. > The > doctor agreed to continue with a 'wait and see' approach, but referred us > to a > geneticist for additional review. > > February of 2010, we did visit the geneticist. We were pretty > disappointed in > the appointment. He felt that 's scoliosis wasn't genetic, and > that she > wouldn't progress any further. I've pinged them a few times for their > findings, > but they haven't been forthcoming. > > This past month we went to visit the ortho, and got the x-ray showing 47 > degrees. At that point, her doctor is recommending casting (no further > info yet > on what kind of casting), an MRI and a CT. > > As I mentioned before, these are difficult things for us to accept, not > just > from the 'we don't want anything to happen to our child', but from the > perspective of my wife's experiences. We are scared of the procedures > (casting, > MRI, CT), and of putting her under. > > Let me end it by there that I'm interesting in reading about your > experiences, > and appreciate any advice/guidance that you can provide. > > > > > > > Quote Link to comment Share on other sites More sharing options...
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