> My eight year old granddaughter is seeing a specialist because her regular
> doctor thinks she may have Marfan Syndrome. He had mentioned the
> possibility of it several times when she was younger but did not feel the
> need at that time to pursue it yet. Well, she has recently been having some
> back pains and they discovered she has scoliosis which it seems is quite
> common in children with Marfans. He referred her to a pediatric orthopedic
> doctor who said she does have all the outward signs of Marfans so she now
> has to undergo a battery of various tests. Basically Marfans is a
> connective tissue disease that affects many body systems, including the
> skeleton, eyes, heart and *** vessels, nervous system, skin and lungs.
> She is very tall for her age with long arms, legs and fingers and this seems
> to be a common characteristic. Of course many children this age are long
> and lanky but she is more so than average. She can also wrap herself up
> like some kind of a contortionist yet she cannot stand up and touch her
> toes. Apparently there are many things like this that go with Marfans.
> She had an echocardiogram last week and that looked OK except for a heart
> murmur so that is one test down. She will also have to have genetic
> testing, eye tests and several other tests based on the results of these.
> Tomorrow is a big one for her - a Spect Scan which is a type of nucleur
> testing and will last all day. She will be injected with a radioactive
> substance and later all her bones will be scanned. I am taking off work to
> go with her Mom and her for this test as they are both understandably
> nervous about it and my son (her dad) is out of town on business.
> I am just hoping that I can be helpful and supportive for them both. I know
> it is very *** my daughter-in-law as well as my DGD. I remember well
> the feeling of having your child go through serious medical tests. Right
> now my DGD is worried about the needle part of it as she will have an IV. I
> am just hoping and praying that none of it is too difficult for her and that
> all results are negative.
> At any rate I'm rambling on about all this because I wondered if anyone here
> has any experience with Marfans Syndrome or knows anyone that has it? I
> have never heard of anyone with this disorder before. It seems to be a
> fairly rare disorder. We could also use some prayers tomorrow if anyone has
> any to spare.
> Thank you all so much,
her well informed as to what is happening and why as she has the tests,
and anything you don't understand, ASK about! How old is she?
Tell her from me that the IV hurts a little going in, but after that is
more a pest than a pain! And the nuclear scan just means you have to
keep still! I got chilly lying there when I had mine before Christmas,
prior to having my gall bladder out.
Here's hoping the tests results are as good as possible, and that while
she may have the syndrome, she has as few of the effects as possible. A
nice hand piecing project to share with her might be a good thing to do
while enduring all the waiting.
Lady Catherine, Wardrobe *** of the Chocolate Buttons
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