1st appt with Shriner SLC 10/1, 8 mo old with scoli/kyphosis, & poss NF

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Hi I'm Kim and am new here. I am the mom of an adorable 8 mo old boy named . Our son has probable Neurofibromatosis and we took him to the NF clinic in SLC in July. I had been concerned about his spine since birth, felt the prominent lumbar vertebraes poking out (though none of the docs seemed concerned). At his 4 month appt our pediatrician asked if anything was bothering me and I told her his spine. He was starting feel curvy too. She mentioned his "cafe au lait" spots & said he may have NF. I started doing my research & put 2 + 2 together (scoliosis can go with NF) and I insisted on going to an NF clinic. The doc agrees the he probably does have NF1 (he more than meets the criteria by the number and size of cafe au lait spots but needs to meet 1 more criteria still (he's too young

to show many other symptoms).

They did xrays and Primary Childrens in SLC showing a 15 degree C curve (T9 - L5 and Kyphosis in his lumbar - "gibbous") which made them extra concerned. They have recommended an MRI, which we have not done yet because of sedation issues at a small hospital, not to mention the % out of pocket to go to a big hospital which we will need to for sedation - I want a Peds ICU avail if anything goes wrong. I spoke with the Shriners doctor's assistant when we scheduled our appt, and she told us not to worry about getting the MRI before our 1st visit, to let the Dr. eval him & if he ends up writing the order that Shriners would pick up the portion that our insurance does not cover- does this sound correct?

Since we have not done an MRI yet, I'm wondering what to expect for our first visit at Shriners (I assume more xrays). Is it possible we might be get an MRI done on short notice at PCM? We are driving in on the 30th & leaving on October 2nd. We have an 8am appt on 10/1 at Shriners. Also, we bring our 2 1/2 year old daughter along, I guess I'm preparing for the worst - a long day.

Is there anyone else on this group that has been casted also for Kyphosis w/scoli?

Sorry this is so long- hoping for some additional insights and expectations.

Thanks,

Kim