Thank you all for your welcome posts. I am mum to Logan who is 27mth
and Kirsty who is 5. We live in Dundee in Scotland.
Logan is the size and weight of a 5yr old with huge size 11 flat
feet, but he is just gorgoeus with huge big blue eyes and blonde
hair. Logan also has Autism Spectrum Disorder. I was first told
that Logan had Beckwith Weiderman Syndrome or Soto Syndrome but these
have now been ruled out and the Genetist is almost 100% certain he
has Weavers Syndrome.
I shall tell you a litlle about Logan, he was born at 38wks I asked
to be induced as my prenancy was terrible and he had burst through
all my stomach muscles, I had to wear special supports and could not
walk. He only weighed 8lb 7oz which was not to bad for me as my
little irl had weighed 10lb she is now normal height and size. Logan
was born with les and feet that bent inwards but I was told that this
was because he had been squashed in the womb. I was given exercises
for this and they seem to have worked. He was also born with ingrown
toenails on both his big toes and still has them, Im not sure if this
is related.
He was breast fed but had to have formula top ups as I just could not
keep up with him and I didnt produce enough milk. At 3mth old he went
into hospital with suspected menigitis and that really is when
everything changed. I knew he was big but just thought he was
thriving, he went into hospital wearing clothes for a 9mth old and
all checks that were done on him put him above 98% on the rowth
chatrs for height, weight and head circumfrence. To be honest nobody
was particuarly bothered by this as he was coming along fine. On
leaving hospital thats when it all changed. When he was in hospital I
decided it would be a good time to wean him of the breast and
probably one of the worst things I could ever have done. In 2 years
he has had 23 ear infections, 14 upper respitory infections, he has
constant diahorea (but i was told not to worry as he was thriving) he
has constant thrush in his mouth and on his bottom, exzema on his
chin which is made worse by the constant drooling. Throuh all of
this thouh he seemed such a happy loving placid child, that was until
he was 18mth old. He seemed to go into his own world and nobody could
get to him. He stopped talking, he had had a few words before this,
he became very isolated and would not look at anyone and did not like
bein in anyone else company he prefered to be on his own and the only
time he had any joy on his face was when he was running in circles
flapping. He would daily go to work, or thats what I called it, this
would mean hours upon hours of lining things up or spinning wheels of
anything he could find. He at this stage started fitting and would
wake up in the middle of the night screaming for no apparent reason.
A few times I had actually though that he had stopped breathing which
was very scary. When he moved on to solids he was never to great
with lumps and would often choke or gag. The peideatricians at this
point desided to investigate further, he has a floppy wind pipe and
poor muscle tone in his mouth, he has enlarged liver, kidneys and
pancreas. This led them to Beckwith Weiderman Syndrome which he has
not not got so it was back to the drawing board. At this time he was
walking or doing the cowboy stroll as I call it, he has bow legs and
his feet turn inwards. He was diagnosed with Autism and this then put
them on the path of Soto Syndrome, but he does not have the mutated
gene nor does he have the facial apperance, so here we are at the
door of Weavers Syndrome. He has speach thereapy which is helping,
he has Occupational therapy and play therapy all really to help with
the Autism. He is an axtremely allergic little boy, allergic to
dairy, soya, wheat, gluten, casien, eggs and citrus. He is also very
violent at times and hyper active, he's still in his own world alot
of the time but I get in occasionaly, he has no fear of danger which
is very scary at times, he also does not feel pain. But through all
of this he is still Logan and I wouldnt change him for the world.
Im sorry for the essay but I just wanted to introduce us, and please
ignore any spelling mistakes.
So from Jacquie, Kirsty and Logan thank you for accepting us into
your group, we all look forward to sharing information and updates
with you all.
Jacquie x