Concerned !!
 

Hi,
When Lyss was born( 6lbs), She had noisy breathing and her
pediatrician found out that , she had lyringo malaysia. They had done
a "45 minute" procedure to cut a small portion of her tissue and the
noisy breathing , almost , stopped. This was done when she was 2 months
old. But right from the beginning , She was very slow with her
feeding. We were giving her Enfamil and usually spent 45mnts to an
hour for 1oz, But she used to drink 24 oz every day !!! We started to
introduce some solid foods around 4 months and she was taking it
without any problems, But her milk intake came down to 6oz !!! She was
12 lbs at the end of 6 months and had a weak cry and didn't babble at
all. She just gained 1 lbs for the next 4 months (10 months , 13 lbs)
and this "triggered" a "failure to thrive" and was admitted in
hospital 2 times. After all kinds of testing ( MRI of the brain,
Swallow study,sweat chloride,upper GI , DNA , vision etc) , The doctors
said "No diagnosis". Lyss started to sit by herself when she was 10
months and her health looked really bad.. She was not that active and
didn't babble at all. We decided ( Against the pediatrician's opinion
!!) to go with the G-tube when she was 13 months and since then , Lyss
started to gain weight . She was able to walk by herself when she was
16 months and started to babble a lot..

She is 25 months now and weighs 25 lbs . Overall , She is within the
chart (Weight 30%,Height 50%, head size 15%), But she hasn't started to
talk. Although , Sometimes she says "mamma" and lately "dada" , We
would like her to say "mamma " when she sees her mom. She knows her
older sister( 6 years old) and plays with her. She seems to be
understanding some of the stuff like "Where is your shoes, put it back,
wipe your face , where is the ball , dog " but when she sees a ball,
She won't say it. When we ask her , she would say ball . Now, When I
leave home or go to my car, She cries and will only stop , when I take
her into the car or outside.
She plays well with her crib toys end even if we turn it off, She turns
it on by reaching the back side of the toys ON/OFF switch.
When we take her to the Neurologist, His comment is "Don't give up
hope and time will tell". The developmental pediatrician gave us the
"future" for Lyss and We just walked out of that meeting. We switched
our pediatrician and visited many doctors and all of them are
suggesting a "genetic test" and we said "No". When Lyss walks , She
turns her right feet "in" and has little bit of muscle stiffness. Also,
When she sees strangers , She spits or put her finger in the nose. She
plays well inside the house but
Won't play with other kids , Once she steps outside of our home.

Anyone going through the same situation?

We have twins that were so different to each other (until 30 months) that it
was quite hard to believe they could both be normal. Your description of her
mental development didn't seem that out of the ordinary to me.

Personally I'd have opted for the genetic tests. I don't know where you are
in but in England it's easier to get access to support services/treatment
once you have a definite diagnosis. A negative test would also put your mind
at rest.

I couldn't find "lyringo malaysia" using Google.

Hi,
Thanks for the post. Lyringo Malaysia is some sort of tissue
blocking the "airway". Kids with this problem will have noisy breathing
and there is a simple procedure to cut that tissue. This is usually
done before they are 1 yr of age.
I am here in the States and really scared to go for genetic
tests. Whether your kids have the same "symptoms" like Lyss or ?
Are they alright now ? Have you done anything different ?

Thanks
MarkV

MarkV wrote:
Hi,
Thanks for the post. Lyringo Malaysia is some sort of tissue
blocking the "airway". Kids with this problem will have noisy breathing
and there is a simple procedure to cut that tissue. This is usually
done before they are 1 yr of age.
I am here in the States and really scared to go for genetic
tests. Whether your kids have the same "symptoms" like Lyss or ?
Are they alright now ? Have you done anything different ?

Thanks
MarkV


Here's the correct spelling: Laryngomalacia
From googling it, the condition seems minor for most children.

There shouldn't be anything to fear from genetic testing. If
they *do* find something, it's usually better to address it
earlier in the child's life, rather than later.

Laura

"MarkV" wrote in message
oups.com...
Hi,
I am here in the States and really scared to go for genetic
tests.

Scared of the tests or the results? I look at it this way - if there is a
problem NOT having a test won't make it go away. Some DNA tests are done
using a mouth swab but a blood sample might be needed. Taking blood is not
entirely pain free either but its over in seconds and not as painful as
getting a shot in my experience. Our son spent the rest of the day showing
off his sticking plaster and we had to give his brother one to match. The
worse part is waiting for the results which might take a few weeks.

Whether your kids have the same "symptoms" like Lyss or ?

No our boys turned out to be perfectly normal - it was just that when they
were younger they appeared to have a few problems with their eating. One
also had a very large head and the other a very small one. Both off the
chart. It doesn't seem to have effected their development though.