Discussions By Condition: I cannot get a diagnosis.

large tailbone and torticollis

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Anonymous
  • October 14, 2009
  • 01:31 PM

My son is 3.5 years old and was born with several congenital abnormalities. His history is somewhat long, but I will try to list everything:
1. Coarctation of Aorta, operated on and fixed when he was 2 days old (pure miracle!)
2. Hypospadias, fixed when he was 10 months old
3. Hydroseals on both testicles, fixed at the age of 2 years old (two surgeries, two weeks apart)
4. Adenoids, removed at the age of 3 y.o.

All these problems that have been taken care of do not leave me with worry, however, he was born with some other abnormalities that no doctor has been able to diagnose.

1. He was born with enlarged tailbone that looks like a small bump (tail if you will) at the end of his spine. The sonogram was done at birth and result was normal. I was told that it's just a "thing" that he has, but it isn't something to worry about. However, the skin of that "bump" is always red and it looks like he is not comfortable sitting on it.
2. He has very low muscle tone. He had a strange version of torticollis. His neck would bend to one side for a couple of weeks and then straighten up on its own and then the condition would reappear after two weeks or so. With time, his neck started bending at a smaller angle and the time between these recurrences (healthy time) has increased. At this point it is barely noticeable, but is still not completely gone.
3. When I was pregnant, I tested positive for AFP, but sonogram showed that this was "false positive".

We have seen two neurologists an orthopedist and genetic counselor, and they could not tell me anything I don't already know. Everything is "normal"!

Please help! Any recommendations will be highly appreciated.

Reply Flag this Discussion
Thanks! A moderator will review your post and it will be live within the next 24 hours.