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cc | 22 Jan 2011 09:38

limping?

hi again, i only ever seem to come on here when i have a question -
sorry about that!
my little boy is not 19months and in the last week or two he has
started limping, none of us saw him fall over and he is not in any
pain, the limp seems like it is coming from his back as he is limping
with both legs and sort of swaying from side to side when he walks.
does anyone know if this means anything? should i call his doctor
about it? thanks in advance x

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cc | 27 May 2010 17:01

afp rise

Hi i have just been told that the blood test recently taken from my
little one have risen slightly.  Does anyone know if there is anything
else that causes this or is it likely to mean the sct is returning. We
are going for an ultra sound but not till next week so just wanted
some info.

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Una | 7 Nov 2009 01:04
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Wondering how MS is doing


It is many months since we last heard from MS, pregnant and dealing
with some hard choices concerning an ovarian tumor.  MS, if you are
reading this, I would love to know how you are doing.

	Una
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Pologirl | 25 Oct 2009 15:32
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SCT babies and sleeping


It is good to see some activity on this group.

The Children's Hospital of Philadelphia has a new "recruiting" page
with a success story about a 7-pound SCT baby with a 3-pound, mostly
external teratoma (10 pounds in all).  One of the issues for this baby
was the medical recommendation that all babies be put down to sleep
only on their back, to reduce the risk of sudden infant death syndrome
(SIDS).  This baby cried and screamed and did not sleep unless the
parents held her.

We struggled with a similar problem.  My SCT baby would sleep well
only on her stomach, before the surgery, after the surgery, and even
now, 3 years later.  It is just how she sleeps best.  While she was in
the neonatal intensive care unit (NICU) the nurses allowed her to
sleep on her stomach as long as she was hooked up to all the
monitors.  Later, they allowed sleeping on her side, well propped.  We
were supposed to keep her off her stomach but within days of coming
home she was able to roll from her side onto her stomach.  We also did
a lot of reading about SIDS and infant sleep in general, and concluded
that poor sleep raised greater health risks than the risk of SIDS.  We
settled on using a very firm mattress and putting a thick sheep fleece
under the bottom sheet.  My SCT baby liked to be face down on the edge
of the fleece, with her head on the mattress.

Pehaps this will be helpful to other SCT babies and their families.

Pologirl
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Una | 11 Oct 2009 18:43
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Long-term survivors (for Ruth)


Came across this today.  Probably old news but I thought I'd post it
anyway, for reference.

	Una

http://www.isb.nhs.uk/isbsearch/non-isb-standards/standards-db/getdetail/297/view

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Name:
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        * England
        * Scotland
        * Wales

URL:
    http://www.ccrg.ox.ac.uk/ 
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site/type, whether entered by trial, geographical area at birth and diagnosis associated
congenital/genetic disease; summary of treatment, subsequent cancer
Comments:
    NRCT also collects information on a long-term survival from cancer based on a cohort dating back to the
(Continue reading)

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cc | 10 Oct 2009 16:41

what happens when a sacrococcygeal teratoma grows back


my baby was born with a sct which was successfully removed at a wk old
and thankfully it was benign. he is 16wks now and after just having
his 1st ultra sound we have been told he needs an mri next wk as they
could see something on the scan.  we are hoping it is just scar
tissue, but i have been told very little about what happens if it
reacurres and so was hoping someone might have some information.  i
know it can still be malignant even when it wasnt last time, and want
to know the chances of this. also want to knowif its returned once is
it likely to keep happening.
please any info or stories would help.
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