Re: Hello from Germany

[Guest guest]

Joachim,

My 7 yr old Brittney has ALWAYS looked through me.I too don't understand

this but know it does get frustrating but also upsetting. I want my little girl

to look into my eyes. I don't have any words of advice except not to give up.

Keep working with him. the harder you work, the better results in the end. It

may take several yrs but it's better than giving up.

Hugs from the USA, Michigan to pin point it

Amy mom to Brittney 7 CHARgE, megan 4, robert 3

Hello from Germany

Hello everyone on this list,

we have been members of this list for quite a while now (more reader then

writer), as Tobias ( 14 month old) our son is a charger. Fortunately the syndrom

didn't hit him to bad, but it is clear that it is charge. Basically his left

body side seems to be affected by charge, as he has a coloboma in his left eye,

which reduces his abilty to see in a yet not determinable way, he can't breathe

through his left nostril, his right ear seems to have a certain inner defect, he

has a small defect on his heart and his overall size is too small for a kid his

age. Well, I guess that sounds familiar to most of you. Luckily it hadn't been

necessary to do any surgery on him until now. Only at the end of this week my

wife will take Tobias to a hospital where he will get special little tubes in

both of his ears, so that some fluid that sits behind his eardrumskin can sip

out. This should improve his hearing abilities a lot (We hope).

Else then that, we can definitely confirm, what experiences a lot of you have

had with doctors. The big problem seems to be, that they are not able to admit,

that they don't know everything, and that they themselves may need help in

finding out about charge.

Our experience since today had been, that you always should consult at least

two doctors before you start to believe what they want to tell you. It had been

this way with Tobias hearing and seeing abilities. For the good off our

chargers, it seems that we have to have more knowledge about everything, so we

are able to tell the docotors about it, so they don't make a wrong diagnosis.

Well, concerning our son, we love him so very much and he his great joy in our

life. As we don't know how things will turn out with him, everyday is so

interesting and exciting watching him grow up (even if it's slow) and learn

about his learning abilities. The only thing that we still don't understand is,

even though he can see quite good and can hear quite good, he doesn't react on

us, when we are close, as other kids does. When we stand in front of him, it

seems that he looks through us and then he looks directly towards people when

they get close to him. Very irretating. Has somebody experienced something

similar?

My wife and I would like to say a big thank you to all the people who made

this list come true. It had been a great help for us and will be in the future.

This is a very important place to turn to, when you experience any problems with

your charger. Being here gives hope for the future of our kids.

Best greetings from Germany

Joachim, Astrid and Tobias (14 month old charger)

[Guest guest]

Joachim,

My 7 yr old Brittney has ALWAYS looked through me.I too don't understand

this but know it does get frustrating but also upsetting. I want my little girl

to look into my eyes. I don't have any words of advice except not to give up.

Keep working with him. the harder you work, the better results in the end. It

may take several yrs but it's better than giving up.

Hugs from the USA, Michigan to pin point it

Amy mom to Brittney 7 CHARgE, megan 4, robert 3

Hello from Germany

Hello everyone on this list,

we have been members of this list for quite a while now (more reader then

writer), as Tobias ( 14 month old) our son is a charger. Fortunately the syndrom

didn't hit him to bad, but it is clear that it is charge. Basically his left

body side seems to be affected by charge, as he has a coloboma in his left eye,

which reduces his abilty to see in a yet not determinable way, he can't breathe

through his left nostril, his right ear seems to have a certain inner defect, he

has a small defect on his heart and his overall size is too small for a kid his

age. Well, I guess that sounds familiar to most of you. Luckily it hadn't been

necessary to do any surgery on him until now. Only at the end of this week my

wife will take Tobias to a hospital where he will get special little tubes in

both of his ears, so that some fluid that sits behind his eardrumskin can sip

out. This should improve his hearing abilities a lot (We hope).

Else then that, we can definitely confirm, what experiences a lot of you have

had with doctors. The big problem seems to be, that they are not able to admit,

that they don't know everything, and that they themselves may need help in

finding out about charge.

Our experience since today had been, that you always should consult at least

two doctors before you start to believe what they want to tell you. It had been

this way with Tobias hearing and seeing abilities. For the good off our

chargers, it seems that we have to have more knowledge about everything, so we

are able to tell the docotors about it, so they don't make a wrong diagnosis.

Well, concerning our son, we love him so very much and he his great joy in our

life. As we don't know how things will turn out with him, everyday is so

interesting and exciting watching him grow up (even if it's slow) and learn

about his learning abilities. The only thing that we still don't understand is,

even though he can see quite good and can hear quite good, he doesn't react on

us, when we are close, as other kids does. When we stand in front of him, it

seems that he looks through us and then he looks directly towards people when

they get close to him. Very irretating. Has somebody experienced something

similar?

My wife and I would like to say a big thank you to all the people who made

this list come true. It had been a great help for us and will be in the future.

This is a very important place to turn to, when you experience any problems with

your charger. Being here gives hope for the future of our kids.

Best greetings from Germany

Joachim, Astrid and Tobias (14 month old charger)

[Guest guest]

Hello to you! My daughter Amy 3 has ChARgE. I was glad to see your advice on

seeing AT LEAST 2 doctors. Not knowing what to expect when Amy was born we

figure that these doctors were the specialists. Surely they knew what was best

more than my husband or I. unfortunatly we learned the hard way, That they don't

know everything. I think the best peice of advice is to always get a second

opinion. escpecialy if your gut instinct is telling you there must be another

way, proceedure...ect. Yes they are specialists, BUT even if they are all (for

example) plastic ssurgeons with a cleft team, they all have there own techniques

to dealing with and correcting the problem. Doesn't necessarily mean its a wrong

technique, It just may not be the best for your child. After 2 failed lip

adhesions we were told... " wow, this has NEVER happened before. She's gonna need

a metal device screwed into her jaw bone and you get to turn the little screw

that pulls her front gum back into place over the next 10 weeks. Not sure if

this will even work on her. 40/60% chance. We knew there had to be another way.

another surgeon, a different aproach to this problem. With the help of our

contact from the Bureu of Special Medical Services, we found the surgion we had

hoped for. He was from the childrens floating hospital in Boston Mass, and after

our consoltation visit we knew we had the right man for the job! He simply jusrt

did the full repair, and part of the hard palate at the same time! in time her

front gum moved back on its own from the pressure of her lip(being repaired.) He

saved her 3 operations, and 10 weeks of pain and suffering. I guess the main

point of my story is there is always someone that has a different approach. With

a second opinion you can weigh the facts and the instincts you have! This goes

for ANY proceedure. Its nice to hear from you way over there in Germany! Kerrie

mom to Amy 3 ChARgE

Hello from Germany

Hello everyone on this list,

we have been members of this list for quite a while now (more reader then

writer), as Tobias ( 14 month old) our son is a charger. Fortunately the syndrom

didn't hit him to bad, but it is clear that it is charge. Basically his left

body side seems to be affected by charge, as he has a coloboma in his left eye,

which reduces his abilty to see in a yet not determinable way, he can't breathe

through his left nostril, his right ear seems to have a certain inner defect, he

has a small defect on his heart and his overall size is too small for a kid his

age. Well, I guess that sounds familiar to most of you. Luckily it hadn't been

necessary to do any surgery on him until now. Only at the end of this week my

wife will take Tobias to a hospital where he will get special little tubes in

both of his ears, so that some fluid that sits behind his eardrumskin can sip

out. This should improve his hearing abilities a lot (We hope).

Else then that, we can definitely confirm, what experiences a lot of you

have had with doctors. The big problem seems to be, that they are not able to

admit, that they don't know everything, and that they themselves may need help

in finding out about charge.

Our experience since today had been, that you always should consult at least

two doctors before you start to believe what they want to tell you. It had been

this way with Tobias hearing and seeing abilities. For the good off our

chargers, it seems that we have to have more knowledge about everything, so we

are able to tell the docotors about it, so they don't make a wrong diagnosis.

Well, concerning our son, we love him so very much and he his great joy in

our life. As we don't know how things will turn out with him, everyday is so

interesting and exciting watching him grow up (even if it's slow) and learn

about his learning abilities. The only thing that we still don't understand is,

even though he can see quite good and can hear quite good, he doesn't react on

us, when we are close, as other kids does. When we stand in front of him, it

seems that he looks through us and then he looks directly towards people when

they get close to him. Very irretating. Has somebody experienced something

similar?

My wife and I would like to say a big thank you to all the people who made

this list come true. It had been a great help for us and will be in the future.

This is a very important place to turn to, when you experience any problems with

your charger. Being here gives hope for the future of our kids.

Best greetings from Germany

Joachim, Astrid and Tobias (14 month old charger)

[Guest guest]

Kerrie,

I am supposing you are talking about a Latham device (the thingy

with the screws) They mentioned it to us when Aari was born but

no one said anything about it.. I asked about it at a pre-op appt for

his lip repair and the doc said.. too late for that now.. takes at least

a month to get one done and because of his choanal atresia on the

other side we would have had a heck of a time trying to get a mold

done (he wouldn't have been able to breathe) so what we did, Aari

had a 2cm gap in his gum, was use tape.. the flesh colored

stretchy stuff, and tape it from one side of his face across his

upper lip and to the other side... worked like a charm.. two weeks

later he went into surgery with his gum opening all closed up.

Now we are looking at the dental side of things.. getting cavities

filled, and all the neat stuff for palate expansion for the bone graft.

One nice thing about delayed growth in CHARGErs is that it gives

you a couple extra years to deal with all the nifty things that go

with a cleft palate.... Now on to find a dentist that isn't scared of

him.. we've been through three that said they can't deal with him,

one he kicked in the mouth after double dosing with chloral

hydrate.. our family dentist doesn't do sedation (too far from a

decent hosp if anything goes wrong), and another who has years of

experience with clefts said there was no way he'd touch him with

his anesthesia history.. finally after a year of having a tissy at his

(ha ha) " case manager " it took the crainal facial social worker to

get me a name of a dentist associated with my HMO to do

sedation at the hosp and do it all at once.... geez

Casey

Mom to Dawn 20 HH, Ken 10 ADHD, 7 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220

[Guest guest]

I feel like most everything i read i can add a little to! any way when Amy was

born she wouldn't look in my eyes. i knew right away something was wrong, but it

took quie some time to get anyone to listen. She has coloboma in both eyes. The

right is smaller and more affected than the left. MICE vision therapists used

pinwheels to start her tracking things. Still by 6-8 months she did not look in

anyones eyes. slowly her vision improved. the nastagmas got worse when she would

try to focus on something. The pinwheel was her favorite(and mine!) the light

would reflect nicely as it spun around. Made it easier for her to try and see. I

think Amy was about 1 1/2 years - 2 years before she actualy looked in my eyes.

I can't describe the intence feeling of joy the first time she did this! It was

well worth waiting for!!!! Now at age 3(in a month) she even looks at my moulth

when i'm close to see me talk! She still hasn't needed glasses. She gets checked

once a year. she can even find the smallest thread on our livingroom rug when it

matches color! It just amazes me what she can see now and how well she uses the

vision she does have. I was told when we fianly were seen by an opthal;mologist

at age 2 months that she was completwely blind,couldn't see light and would

never see. I went home and did research of my own and i'm now happy to be one of

those stories that end with a " she realy proved them wrong. " I read of a boy who

was 7 and his sight was still improving. Not that the coloboma heals, but that

they learn to focus better, and use the vision they do have better. other than

that i realy don't know why or how. But i do knowthat Amy...mom to Brittney is

so right...Keep working with him..the harder you work, the better results in the

end. and it may take several years, don't give up.

Kerrie Amy 3 ChARgE

Re: Hello from Germany

Joachim,

My 7 yr old Brittney has ALWAYS looked through me.I too don't understand

this but know it does get frustrating but also upsetting. I want my little girl

to look into my eyes. I don't have any words of advice except not to give up.

Keep working with him. the harder you work, the better results in the end. It

may take several yrs but it's better than giving up.

Hugs from the USA, Michigan to pin point it

Amy mom to Brittney 7 CHARgE, megan 4, robert 3

Hello from Germany

Hello everyone on this list,

we have been members of this list for quite a while now (more reader

then writer), as Tobias ( 14 month old) our son is a charger. Fortunately the

syndrom didn't hit him to bad, but it is clear that it is charge. Basically his

left body side seems to be affected by charge, as he has a coloboma in his left

eye, which reduces his abilty to see in a yet not determinable way, he can't

breathe through his left nostril, his right ear seems to have a certain inner

defect, he has a small defect on his heart and his overall size is too small for

a kid his age. Well, I guess that sounds familiar to most of you. Luckily it

hadn't been necessary to do any surgery on him until now. Only at the end of

this week my wife will take Tobias to a hospital where he will get special

little tubes in both of his ears, so that some fluid that sits behind his

eardrumskin can sip out. This should improve his hearing abilities a lot (We

hope).

Else then that, we can definitely confirm, what experiences a lot of you

have had with doctors. The big problem seems to be, that they are not able to

admit, that they don't know everything, and that they themselves may need help

in finding out about charge.

Our experience since today had been, that you always should consult at

least two doctors before you start to believe what they want to tell you. It had

been this way with Tobias hearing and seeing abilities. For the good off our

chargers, it seems that we have to have more knowledge about everything, so we

are able to tell the docotors about it, so they don't make a wrong diagnosis.

Well, concerning our son, we love him so very much and he his great joy

in our life. As we don't know how things will turn out with him, everyday is so

interesting and exciting watching him grow up (even if it's slow) and learn

about his learning abilities. The only thing that we still don't understand is,

even though he can see quite good and can hear quite good, he doesn't react on

us, when we are close, as other kids does. When we stand in front of him, it

seems that he looks through us and then he looks directly towards people when

they get close to him. Very irretating. Has somebody experienced something

similar?

My wife and I would like to say a big thank you to all the people who

made this list come true. It had been a great help for us and will be in the

future. This is a very important place to turn to, when you experience any

problems with your charger. Being here gives hope for the future of our kids.

Best greetings from Germany

Joachim, Astrid and Tobias (14 month old charger)