It is nice to meet you! My name is April and I have a now almost 7 year old son named Devon. It is hard to believe so much time has gone by, the days can seem to take forever, although the years fly by! I would like to share our story with you, as I do see some similarities. We had a hard time getting pregnant in the first place, loosing several pregnancies before we got pregnant with Devon. I was put on bed rest from about 5 months of pregnancy on. I had a horrible pregnancy. I am diabetic, I swelled up huge everywhere if I even sat up in bed for too long. Devon was born right on his due date, but by emergency c-section. Every time I had a contraction, his heart rate would stop. I had been in labor for hours, and he would not drop down. (I broke my pelvic bone giving birth to my first son, now almost 13!, so Dr's thought this could be why) I had several ultra sounds while I was pregnant and the technicians all said he was HUGE, they measure by bone size and the water left in the sac. Devon was only 8#15oz, nut he was 23 3/4 inches long! He looked so skinny, almost like laffy taffy (do you have that there, it is a candy that strings out?) He went home at normal time, I took him for his circumcisions, and Dr's would not do it, said he was too jaundice. We spent two weeks in  the hospital, only to find out it was breast jaundice, soon as I quit breast feeding it went away! He was almost going to have a transplant and blood transfusion!!! When he was about 2 months old, he started throwing up, and it would shoot out 8 feet across the room, it was very scary. He was diagnosed with projectile vomiting, secondary to acid reflux. He was put on several meds, but about a week later he got pneumonia. He was in the hospital for about a months. We were home for only a couple weeks, and he quit breathing on us at night. We live 45 miles away from the hospital, so I did CPR on my lap on the way to the hospital, he was air lifter into the big city, and diagnosed with sleep apnea. He was sent home a couple week later with oxygen, machines galore and scared parents. He was huge still, well over the 98% on all charts, but was "sickly." most of the time. When he was 10 months old a a state program suggested he was developly delayed. To be honest, I was making logical excuses. Thinking ofcourse he is not doing everything most kids his age were doing, he was HUGE and in the hospital and tied down with nachines more than not. How was he suppost to "develop" "normally"? I agreed to take him in for a evaluation at least, see what the experts thought. The first evaluation with a speech theripist was freeky, she noticed how noisily he drank his bottle, she asked to listen to him, and freaked out, asked us NOT to feed him and left the room. She came back and explained what was going on...he was silent aspirating, everything he was taking by mouth was going into his lungs, his muscle tome is very low and he had no controle (neither did the brain) on wher it went. This was why he had pnemonia ALL the time, the acid reflux did not help things we later found out. The stomach acid burnt his lung, the doc were not sure how this would turn out. He is now almost 7, still has problems, but doing better than any docs thought he would be doing!

Devon was born with ingrown toe nails too! He still has them as well. He gets ingrown easily on other toes as well, his nails are thin and somewhat flat. You are ther only other mother that has said this! It is nice hearing my son is not alone. My son also has been plagued with ear infection on top of ear infection. The wierd thing is he never complained, and they never really "leaked", he just had ear infections every time we went in. We seen the ENT, she said the presure in there was not right, ear tubes would help the pressure (so he could hear & hopfully talk better) he had the tubes for about three years, It sems like after he got the tubes his ears would drain like nothing I have ever seen before,he got them out last summer and is doing fine.  The upper resperatory thing is so familiar too. My sons started when he was about 2 months old, he got his first phnemonia. They say he has asthma too.Devon has had well over 30 operation and procedures done, and we know of a few more, like his nose reconstrict when he is around 9 years old, he has nasel deformities that do not help things)

Sorry this has turned out so long...Devon has low muscle tone through out his body, global delays, he is also on the autism spectrum, allergies to everything, stomach issues, behavior issues, sleep apnea, obstructive and central, lots of thing I am forgetting right now.

Devon is also very hyper active, does not sleep much inless it is medicine induced. Whenh we done his allergy testing, they tested for fourty things, he was NOTt allergic to pork and chocolate! he is t everything else. Same goes for enviromental allergies, allergic to everything. This last fall/winter he had a first reaction...he got 9 allergic reaction on his eye ball in a matter of three months, we narrowed it down to horses, he had always been arounf them, but all of a sudden developed reactions to them. He does thid often too, He is on many allergy medication, and gets sinus infections spring and fall.

Sorry for my essay....I look forward to getting to know you and your family, welcome! We are all very happy to have you. This seems to be  a lone syndrome, but at least we can talk with other parents on the internet!

April

mother of Devon 6

--- On Sat, 6/14/08, jacq1976 <jacq1976@...> wrote:

From: jacq1976 <jacq1976@...>
Subject: [WSSA] Thank you all
To: WSSA@yahoogroups.com
Date: Saturday, June 14, 2008, 1:24 AM

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