Re: Re: New Diagnosis Update

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Thanks for this info .  Very good to know.  We may have to wait on an MRI until we're home and using the SLC Shriners anyway--from not being able to get an MRI slot in Texas and also because she's still so young (she'll still only be 4 months when we see the doc in Texas).  We hear that many docs feel you can't tell enough on an MRI until a baby is more like 6 months old.   However, my gut tells me this is not a tethered cord issue anyway--no pain, no cutaneous markings.  I know the MRI can tell us a little more than just that but I'm REALLY hoping that someone experienced in seeing these cases can at least narrow down a few things and give a good curvature degree (remember I don't think we have a good xray) and an RVAD number.  That would at least be something.  And with a good Xray they should be able to rule out most congenital problems--right??It also turns out that the highest ranking Shriner in Texas is a close friend of my sister's boss.  We're not sure how much that might help or not but he's offered his help so e're holding that in reserve.  If the doc we see feels that she has one of the issues that can only be confirmed with an MRI we might call in that chit and see what, if anything, he can do for us as far as getting a quicker appointment.  Then again, like I said, we might just do the MRI in SLC when she's the "right" age for it.  We'll see. I'm hearing conflicting things about the MRI age thing so I don't know what to think about that.  Seems a delicate balance.  You want to wait and get a good scan that can tell you what you want to know but at the same time waiting can set you back months for casting,specially if you find out there's something going on that requires surgery BEFORE casting can be done.  It still makes my head spin.  You should see the list of questions I already have for the doctor in Texas.  They are so going to hate me. Just so you know, we had our first appointment at Texas ish Rite for our daughter on 19 Feb and she is now scheduled for an MRI/casting on 27 April. The MRI requires anesthesia, so it is something that must be scheduled and took us over two months to be worked in. So, don't count on a firm diagnosis from ish Rite. We are certainly pleased and thankful for the wonderful care three of our children receive at ish Rite and hope their funding continues to support the hospital there. I certainly am glad to hear you are seeing someone near you in May and hope things go well for your child. Ann Day>> It's been 10 days since Jemma's diagnosis of Infantile SColiosis and things are moving along. Fast by normal standards I suppose, but it feels slow when it's your kid. I'm sure you all know that feeling well. > > We were accepted to Shriners after only 5 days in the system. Amazing. But as most of you predicted we can't be seen in SLC until May 6th. We are on the cancellation list so there is the possibility it could be earlier. > > The other news is that my sister, who works for the Texas government, was able to get us in contact with a higher up at the Dallas Children's Hospital who talked with me over the phone. She said that despite being a very large pediatric facility, they refer ALL Infantile Scoliosis cases to Texas ish Rite. She is personally referring us there and is getting us an appointment while we are in Texas in mid-April.> > Our hope is to get a clearer diagnosis in Texas from people experienced with the disease and also to hear their suggestions for further testing and long term treatment. We'll play it by ear based on their assessment but may also see a Pedi Neurologist or maybe do an MRI, etc, etc. Basically, whatever is necessary to answer the big question--congenital, neuromuscular, tethered cord, idiopathic progressive or idiopathic resolving?> > Then we'll see the doc in SLC in early May (if not before) as our second opinion and ultimately our place of treatment should that be necessary.> > Now all I have to do is W...A...I...T...roughly 15 more days for someone qualified to look at my daughter and tell us what kind of Infantile Scoliosis she has.> > Anyway, you folks have been instrumental in helping me get up to speed on this disease, the docs and the hospitals, all of it so I wanted to let you know what's going on. Thank you so much. I'll write back once we see the doc in Texas.> > Best, JL>