Re: hemangiomas, cafe au lait spots, thoughts

[Guest guest]

Hey, We are about to enroll Sage in a research study at Childrens Boston in regards to some of her other issues, (the whole looking for connections between certain conditions/markers thing)  and I had the same thoughts about doing it--will this just lead to more worry?

While we *hope* to get an exact dx. for Sage's overall condition, I am with you in the fact that we are right where we are supposed to be--just being on that path of doing all that we can for her right NOW. You know our situation intimately, and you know the doubts and second guessing I have done-I will always have regrets about something, I am sure!

But, for now, we are doing all we can, (just as you are for Todd-don't ever think you are not doing a good job with/for him!) and that has to be good enough (for both of us!) somehow. Lots of love to you my friend. You are a wonderful, tenacious momma, and Todd is blessed to have you on his side!

                               Janet On Thu, Apr 15, 2010 at 9:30 PM, D <dew.writes@...> wrote:

 

Hemangiomas occur frequently, even in babies with no other conditions.  My niece was born with a very large one on top of her head, but it has disappeared almost totally now, just past her 2nd birthday, and my MIL is a retired preschool director who remembers several children having had hemangiomas that went away and had no associated conditions.  I don't know the statistical probability of hemangiomas, but I am guessing that it crosses into scoli babies at the same rate as in the general population. 

 

I am reminded about something I learned last year.  A child of a friend of mine was eventually diagnosed with " possible " neurofibromatosis when the casting doctor suggested an evaluation based upon the clinical finding of scoliosis and multiple cafe au lait spots as well as some question about the child's tibias.  But there are no other symptoms, and after many tests and many specialists, there are no conclusive findings.  It is " wait and see, " but they now have some other signs to watch for, which the child may or may not ever develop.  She gave me this link a long time ago:

http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm#146793162

 

My point is that looking for connections between conditions can sometimes produce a (helpful? or not?) diagnosis beyond that which the child already has.  (Or maybe it can just lead to more heartache and worry, oy!)

 

I think we all struggle with wanting to have caught our babies' scoli earlier, no matter when it was caught.  At some level, I always wonder if something I did may have contributed to Todd's scoli.  Certainly I wish that we'd found his cure already, but at the same time, I know that just being on the path actively looking for his cure is right where we need to be. 

 

, Mommy to Todd