Re: Question about behavior, digestion, balance

[Guest guest]

dont know if our experience will help you any.

wesley was concurred the best kid ever and still usually is when

he is out places but at home, oh my , when he hit about 8 he

started acting out at home. being obsessed with dumping things out

and seeing how things go together like lint , plumbs , dirt ,and

water in the dog tub. and hitting himself . its hard to know how to

handle these things but I do find it easier now knowing he is not

the only child who acts this way. we dont know what caused Wesley

to change .

wesley also has balance trouble he has conductive hearing

loss but they dont know why as all his bones seem to be ok they

know his nerves are ok. so we are a bit baffled .

KayRena mom of wesley 10 charger Jake 8 Tristen 6 Zachary 4

KayLeigh 3 weeks

ShKendra@... wrote:

> Hi folks,

>

> I'm noticing a few major topics that seem to always be on the list,

> and of

> course since I'm new at this, I'm worried! My non-CHARGE 4 year old

> seems to

> have some level of sensory/speech stuff, but nothing too serious.

> Mostly, he's

> just " spirited " so, I'm used to challenging behaviors. People always

> tell me

> how calm and happy seems, and he is a very mild little guy.

> So, for

> those of you who have experienced challenging behavior, outside the

> norm, with

> your CHARGers, when did it start? And why? Our diagnosing geneticist

> was not very

> forthcoming with us about things other than the CHARGE basics, so I

> feel

> pretty in the dark about sensory stimulation and behavior issues.

>

> Do the digestive issues mostly affect those with CA? does not

> have

> this, and hasn't really done anything wierd yet digestively. Can I

> hope for the

> best?

>

> (Has anyone tried Aloe Vera juice for constipation? It is funny

> tasting, kind

> of bitter alone, but a tablespoon in cranberry juice is barely

> noticeable,

> and works very nicely at soothing the whole digestive tract from mouth

> sores to

> constipation and more. Works great for kids and grownups.)

>

> Is the balance thing related to a specific ear problem, or is it a

> separate

> thing altogether? Nobody mentioned anything about 's balance to

> me, so

> again, I'm in the dark. He has Mondini malformation in both ears.

>

> Thanks,

>

>

>

>

[Guest guest]

Hello,

Behavior issues - my son is 31 mo. and a very mild, loving child. I

have been noticing the normal 2's coming out in him. I have been

watching very closely like you, will it happen to my son? When

Garland gets wild with his play he acts like he is getting out of

control (not that he wants to be). I believe that for my son, his

behavior issues have started.

Digestion - The only time Garland has had any problems is when he is

in the hospital and can't get out of bed to play. His movements are

still normal.

Balance - If your child has the deformed outer ears then you need to

have the docs do a CT of the inner ears. We did not get the CT done

till Garland was about 21 mo. Garland has the deformed outer ears

and was not walking or even crusing much at 20 mo. We knew something

was wrong. The CT showed us that he is missing both center

semicircular canals, all the other canals are narrow, and the cholea

in both ears are deformed.

Remember you are your child's only voice speek clearly and loudly.

Do not give up or give in.

, Mama to Garland 31 mo. - CHARGEr

> Hi folks,

>

> I'm noticing a few major topics that seem to always be on the

list, and of

> course since I'm new at this, I'm worried! My non-CHARGE 4 year old

seems to

> have some level of sensory/speech stuff, but nothing too serious.

Mostly, he's

> just " spirited " so, I'm used to challenging behaviors. People

always tell me

> how calm and happy seems, and he is a very mild little guy.

So, for

> those of you who have experienced challenging behavior, outside the

norm, with

> your CHARGers, when did it start? And why? Our diagnosing

geneticist was not very

> forthcoming with us about things other than the CHARGE basics, so I

feel

> pretty in the dark about sensory stimulation and behavior issues.

>

> Do the digestive issues mostly affect those with CA? does

not have

> this, and hasn't really done anything wierd yet digestively. Can I

hope for the

> best?

>

> (Has anyone tried Aloe Vera juice for constipation? It is funny

tasting, kind

> of bitter alone, but a tablespoon in cranberry juice is barely

noticeable,

> and works very nicely at soothing the whole digestive tract from

mouth sores to

> constipation and more. Works great for kids and grownups.)

>

> Is the balance thing related to a specific ear problem, or is it a

separate

> thing altogether? Nobody mentioned anything about 's balance

to me, so

> again, I'm in the dark. He has Mondini malformation in both ears.

>

> Thanks,

>

>

>

>

[Guest guest]

Hello,

Behavior issues - my son is 31 mo. and a very mild, loving child. I

have been noticing the normal 2's coming out in him. I have been

watching very closely like you, will it happen to my son? When

Garland gets wild with his play he acts like he is getting out of

control (not that he wants to be). I believe that for my son, his

behavior issues have started.

Digestion - The only time Garland has had any problems is when he is

in the hospital and can't get out of bed to play. His movements are

still normal.

Balance - If your child has the deformed outer ears then you need to

have the docs do a CT of the inner ears. We did not get the CT done

till Garland was about 21 mo. Garland has the deformed outer ears

and was not walking or even crusing much at 20 mo. We knew something

was wrong. The CT showed us that he is missing both center

semicircular canals, all the other canals are narrow, and the cholea

in both ears are deformed.

Remember you are your child's only voice speek clearly and loudly.

Do not give up or give in.

, Mama to Garland 31 mo. - CHARGEr

> Hi folks,

>

> I'm noticing a few major topics that seem to always be on the

list, and of

> course since I'm new at this, I'm worried! My non-CHARGE 4 year old

seems to

> have some level of sensory/speech stuff, but nothing too serious.

Mostly, he's

> just " spirited " so, I'm used to challenging behaviors. People

always tell me

> how calm and happy seems, and he is a very mild little guy.

So, for

> those of you who have experienced challenging behavior, outside the

norm, with

> your CHARGers, when did it start? And why? Our diagnosing

geneticist was not very

> forthcoming with us about things other than the CHARGE basics, so I

feel

> pretty in the dark about sensory stimulation and behavior issues.

>

> Do the digestive issues mostly affect those with CA? does

not have

> this, and hasn't really done anything wierd yet digestively. Can I

hope for the

> best?

>

> (Has anyone tried Aloe Vera juice for constipation? It is funny

tasting, kind

> of bitter alone, but a tablespoon in cranberry juice is barely

noticeable,

> and works very nicely at soothing the whole digestive tract from

mouth sores to

> constipation and more. Works great for kids and grownups.)

>

> Is the balance thing related to a specific ear problem, or is it a

separate

> thing altogether? Nobody mentioned anything about 's balance

to me, so

> again, I'm in the dark. He has Mondini malformation in both ears.

>

> Thanks,

>

>

>

>