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Thursday, September 24, 2009

Scleroderma-Good news

When we first got Nate's diagnosis of Sceleroderma we were told we needed to see an oral surgeon. It has only been a short period of time and we have been contacted a few times to make sure that we going to see an oral surgeon. The oral surgeon is not covered by our insurance. I called and asked them why we needed to see them. It is obvious even to me that Nate's *jaw* is crooked and I was told they want to find out the amount of bone loss. We did get skull X-rays that showed no bone loss but this is different. We needed to pay $70 for the consultation and $110 for the X-ray.

We prayed about it and decided to make the appt. and not wait until we really had the money. (that may never happen :) We were given an unexpected $100 the day before th appointment.

We saw Dr. Tyler Wilson, DDS. Great. Great guy. He sat and spent a ton of time with us and he had really done his homework.

Nate's bite is perfect. It is "slanted", what I called "crooked" but both jaw bones are crooked together and his bite isn't effected. WOW.

The Oral surgeon had a reccomendation for surgical implants for Nate's cheek bones. It is "only" cosmetic and we won't look into it right now. At this point, it seems wise to work on any treatments to stop progresssion. Technically, this is an untreatable, progressive auto immune disease. There isnt a known treatment to stop progression. There are a few alternative methods that we are looking into. Although we are concerned about Nate's facial features, Our bigger concern is that this disease can get painful and he could lose use of his mouth and eye.

We have had some comments that the disease must be very quickly progressing because just a few months ago it wasn't noticable. It has actually been going on quite awhile (6-7 years) we just werent able to get a diagnosis. The amazing thing is that the damage really isnt that noticable and you arent aware of it until AFTER it is pointed out :)

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