Re: New to group, need support BADLY

May 28, 2004

Hi ,

My name is Kim and my son Dylan is almost 8. He has no hearing and limited

vision, and he has swallowing difficulties so he is still tube fed. He has

no other major medical stuff, but lots of little things that indicate his

nervous system is not wired quite right.

With the old way of diagnosing CHARGE, docs believed that all kids with

CHARGE had mental retardation. Now we know that is NOT TRUE! There are no

assessments to accurately measure cognition in a child with combined vision

and hearing loss (Professionally known as deafblindness), so the test

results are not accurate.

Each child with CHARGE develops a bit differently, but I think all have far

greater intellectual capacity than we give them credit for. Some kids are

verbal (or sign) and in regular classrooms with support for their vision or

hearing loss. Others learn formal language later, but are still very

cognizant before that.

I think a lot of it also is finding the right experts to help our children.

For us learning early about the field of deafblindness was important. Even

though it is a scary word, it simply refers to a child with a hearing loss

and a vision loss. Experts in this field understand the impact of this

combined loss and have strategies to help our children learn. Most states

have a deafblind project for support. Later we learned that in addition to

having colobomas, Dylan's brain was also not understanding everything he

saw. We have been working on these processing issues for about a year and

he has made great progress.

Dylan has had a hard time learning formal language, even though we started

sign language with him at 3 months. (I think because of the processing

problems, but who really knows) Even without words we can tell he

understands many concepts and is an excellent problem solver. For me having

a child who was Deaf was okay, but the thought of not being able to

communicate with him was horrifying. Now I am happy to say that even

without words, we communicate very well together and are very connected. It

is different than with my other kids, but not in a bad way.

Dylan is very happy and does not seem at all to mind his life. It is the

only life he has ever known and he is happy. I decided early on that

instead of feeling bad for Dylan because he could not hear music or could

not do (fill in the blank) I would grieve with him, if he ever grieved those

things. It frees me up to be happy now right along with him.

My oldest son has Inattentive ADD and learning disabilities. I have also

had a child die at birth and a miscarriage and yes sometimes I wonder what

did I do during my pregnancies that could have lead to such a bad track

record, but I know in reality that none of them were a result of anything I

did or didn't do, just the luck of the genes and timing. (I do have a

happy, healthy 13yo daughter too).

I also prefer the more natural approaches to dealing with Dylan's chronic

problems, such as the low tone, abdominal migraines, chronic constipation,

etc. We take him for cranial sacral therapy, which I believe has helped him

in so many ways. I still work closely with his medical doctors for acute

problems, but the long term stuff there is not much they can do.

I am glad you found the list and hope you find some comfort and support

here.

Kim L

Mom to Dylan 7 CHaRGE, Kayla 13, Tyler 16, wife to Roy

Tucson, AZ

> Hello all,

>

> My name is and my younger son was given the CHARGE label

> when he was about 3 days old. He is 8 1/2 months now, with a big brother

> getting

> ready to turn 4. We're a Navy family, and we just moved to land. I'm still

> getting settled in with our specialists after leaving some really great

> doctors behind in Virginia Beach. I really struggled with some PPD after

>

> was born, and I'm still really sensitive about him. I worry every day about

> what

> his life will be like, if he'll be lonely or unhappy. I'm sure most of you

> know what I mean. I also worry about this happening to us again. We really

> want

> more kids, but right now I don't even know how we would cope with any more

> medical issues.

>

> Luckily, from what I've read about CHARGE, is doing really well. He

> has coloboma in both eyes, visible in one pupil, further back in the other

> eye.

> He has some nystagmus (shaky eyes) but they think he can actually see

> decently. He loves to look at lights, that is for sure. He had his Tetrology

> of

> Fallot repaired on Thanksgiving, and is hopefully coming off of the heart

> medicine

> in the next month or two. He doesn't have any facial or throat issues and

> amazingly has been able to breastfeed, which is so wonderful. He is small for

> his

> age (25 1/2 in and 15 lb) but he was also born at 36 weeks. He's got low

> muscle tone, so sometimes it seems like he isn't doing much of anything. He's

> slowly getting stronger, can hold his head up pretty well on his tummy and

> will

> hold some toys. He loves to suck his thumb. He's got some funny endocrine

> stuff,

> including adrenal insufficiency and he was hypoglycemic but that seems to have

> gone away. He is doing testosterone shots right now for micropenis (I HATE

> that word!) and undescended testes. He also wears hearing aids for a mild to

> moderate hearing loss caused by a Mondini malformation in both ears. He has

> never

> had an ear infection though, which is great. Obviously, he got some major

> developmental delays, but we have no idea yet what his cognitive ability is or

> will be.

>

> I have so many questions for other people that have been through this period

> already. I am kind of confused as to how low muscle tone will affect him and

> what physical therapy is supposed to do. I have come to terms with his

> physical

> stuff, and I feel like I can handle all of that. But I am absolutely

> terrified of him having any sort of intellectual limitations. It's a real

> stmbling

> block for me, so I would love to hear from any of you about how you deal with

> all

> of this and what life is like after the baby period is over. His differences

> are just starting to be apparent to strangers, and it makes me so sad to do

> those stupid developmental checklists at the doctors office.

>

> I'm a pretty natural, non-interventionist person, so all of this medical

> stuff has been very taxing. Does it ever slow down?

>

> And finally, my older son has been mysteriously, but not too severely,

> delayed, mostly in his speech. I feel a lot like I must have done soemthing

> wrong!

> Anyone else have another child with special needs, either CHARGE or something

> else?

>

> Now that I've dumped all of that, please email me! I am a wreck!

>

May 28, 2004

Kim,

Thanks for your support. I keep trying to be positive since has been

getting help since he was born. It is just scary to have no idea how he will

develop, you know? It is nice to hear that families find ways to get around

stuff though.

You said that your son has low muscle tone. What sort of things did you find

helpful for that? Did craniosacral therapy help? Our insurance will cover

regular PT, OT, speech, but we have to go through the Early Intervention people

first. We're right in the middle of that process, but had to redo everything

when we moved.

Just curious about low tone stuff...

mom to (CHaRGE, 8 mos and 3 1/2)

May 28, 2004

Lori,

I feel pretty happy that has mostly good days. He's not seeming to

suffer at this point. It's looking like he doesn't have any of the chronic pain

sort of issues, thankfully. I do wonder if he is bored sometimes, not being

able to move very well. I actually have been on Zoloft since he was a week old

and just recently weaned off of it. One of those side effects were getting a

bit difficult! I'm definetly better on the actual depression front, but I am

greiving the child I thought I would have. Does that make sense?

I'm really curious as to how things go for you having a younger child after

your CHARGEr. We don't plan on even trying to conceive until is done

nursing, probably at least 2. But I often get from people, " How will you care

for a baby AND ? " In my heart I feel like that isn't a fair statement.

People with disabled kids have babies all the time. But in my head, I wonder

that too. Do you find that they are on the same/similar level?

I will certainly read that book...Thanks.

mom to (CHaRGE 8 mo) and 3 1/2, wife to

May 28, 2004

,

I have seen Kennedy! I think the info I saw on this particular site was

pretty old, so I can't wait to see her now. It's great that she is doing so

well.

Your story about her newborn days really hit me. I hated being apart from

. I think I actually read about Kennedy during Hurricane Isabel, when

was in NICU and I was trapped at home!

Those stupid checklists make me crazy. I think we've established by now that

he will be delayed! Why keep emphasizing that? I hate those things for

" normal " kids too! We actually are planning on homeschooling our kids, blending

in

whatever professional help we may need for .

This may seem oversimplified, but I really just want him to be able to play!

When did you find that Kennedy was able to play with toys and sit up?

May 28, 2004

My heart goes out to you. Our first year with was the most difficult.

I had my " breakdown " at around 9 months - maybe that's when it all sinks in.

After almost 4 years, it's not so bad, and frequently my husband and I say,

" we've got it pretty good. " We have a 6 year old, , with Charge

who is 3, and Emma (and unexpected blessing) who will be 2 in October. Life

is crazy and busy and frustrating--but good! I hate seeing suffer and

when I can't figure out what is getting her I go a little crazy, but all in

all, it is good. A good day makes it all worth while....and 's first

15 months were only filled with a handful of good days! Now most days are

good! Hang in there, it will get better. I also remember a depression

associated with the possibility of mental delays, I got over it and now I

just want her to be a happy kid--which she is. It helps me to think that

some people in this world are here just to add beauty--and maybe is

one of those. And typically, it is not the kid that grieves for normalcy,

it is the family. This is a wonderful group for support. I also recommend

a book called " Changed by a Child. " I fought antidepressants but now I

would have started them the day was born--they helped even out the

anger and helped me to be more patient with . (I prefer non-medical

ways too.....but Zoloft has really helped me!)

Good luck and keep reaching out!

Lori Myers

Mom to (6), , (CHARGE 3), and Emma (1 1/2)

Dallas Texas

New to group, need support BADLY

> Hello all,

>

> My name is and my younger son was given the CHARGE label

> when he was about 3 days old. He is 8 1/2 months now, with a big brother

getting

> ready to turn 4. We're a Navy family, and we just moved to land. I'm

still

> getting settled in with our specialists after leaving some really great

> doctors behind in Virginia Beach. I really struggled with some PPD after

> was born, and I'm still really sensitive about him. I worry every day

about what

> his life will be like, if he'll be lonely or unhappy. I'm sure most of you

> know what I mean. I also worry about this happening to us again. We really

want

> more kids, but right now I don't even know how we would cope with any more

> medical issues.

>

> Luckily, from what I've read about CHARGE, is doing really well.

He

> has coloboma in both eyes, visible in one pupil, further back in the other

eye.

> He has some nystagmus (shaky eyes) but they think he can actually see

> decently. He loves to look at lights, that is for sure. He had his

Tetrology of

> Fallot repaired on Thanksgiving, and is hopefully coming off of the heart

medicine

> in the next month or two. He doesn't have any facial or throat issues and

> amazingly has been able to breastfeed, which is so wonderful. He is small

for his

> age (25 1/2 in and 15 lb) but he was also born at 36 weeks. He's got low

> muscle tone, so sometimes it seems like he isn't doing much of anything.

He's

> slowly getting stronger, can hold his head up pretty well on his tummy and

will

> hold some toys. He loves to suck his thumb. He's got some funny endocrine

stuff,

> including adrenal insufficiency and he was hypoglycemic but that seems to

have

> gone away. He is doing testosterone shots right now for micropenis (I HATE

> that word!) and undescended testes. He also wears hearing aids for a mild

to

> moderate hearing loss caused by a Mondini malformation in both ears. He

has never

> had an ear infection though, which is great. Obviously, he got some major

> developmental delays, but we have no idea yet what his cognitive ability

is or

> will be.

>

> I have so many questions for other people that have been through this

period

> already. I am kind of confused as to how low muscle tone will affect him

and

> what physical therapy is supposed to do. I have come to terms with his

physical

> stuff, and I feel like I can handle all of that. But I am absolutely

> terrified of him having any sort of intellectual limitations. It's a real

stmbling

> block for me, so I would love to hear from any of you about how you deal

with all

> of this and what life is like after the baby period is over. His

differences

> are just starting to be apparent to strangers, and it makes me so sad to

do

> those stupid developmental checklists at the doctors office.

>

> I'm a pretty natural, non-interventionist person, so all of this medical

> stuff has been very taxing. Does it ever slow down?

>

> And finally, my older son has been mysteriously, but not too severely,

> delayed, mostly in his speech. I feel a lot like I must have done

soemthing wrong!

> Anyone else have another child with special needs, either CHARGE or

something

> else?

>

> Now that I've dumped all of that, please email me! I am a wreck!

>

May 28, 2004

--welcome, I don't have alot of time right now--sorry but I'll write

more over the week-end. IT does get better....if your son is anything like

mine and most chargers--he'll amaze you!!

you have come to the right place for support and help, wish I could say more

but the bus is coming soon and the other two will be up and needing to be

helped get ready too. have a great week-end.

mom to timmy ChARGE 8 1/2 , keegan 6, liam 3, wife to pat

burg, NJ

New to group, need support BADLY

> Hello all,

>

> My name is and my younger son was given the CHARGE label

> when he was about 3 days old. He is 8 1/2 months now, with a big brother

getting

> ready to turn 4. We're a Navy family, and we just moved to land. I'm

still

> getting settled in with our specialists after leaving some really great

> doctors behind in Virginia Beach. I really struggled with some PPD after

> was born, and I'm still really sensitive about him. I worry every day

about what

> his life will be like, if he'll be lonely or unhappy. I'm sure most of you

> know what I mean. I also worry about this happening to us again. We really

want

> more kids, but right now I don't even know how we would cope with any more

> medical issues.

>

> Luckily, from what I've read about CHARGE, is doing really well.

He

> has coloboma in both eyes, visible in one pupil, further back in the other

eye.

> He has some nystagmus (shaky eyes) but they think he can actually see

> decently. He loves to look at lights, that is for sure. He had his

Tetrology of

> Fallot repaired on Thanksgiving, and is hopefully coming off of the heart

medicine

> in the next month or two. He doesn't have any facial or throat issues and

> amazingly has been able to breastfeed, which is so wonderful. He is small

for his

> age (25 1/2 in and 15 lb) but he was also born at 36 weeks. He's got low

> muscle tone, so sometimes it seems like he isn't doing much of anything.

He's

> slowly getting stronger, can hold his head up pretty well on his tummy and

will

> hold some toys. He loves to suck his thumb. He's got some funny endocrine

stuff,

> including adrenal insufficiency and he was hypoglycemic but that seems to

have

> gone away. He is doing testosterone shots right now for micropenis (I HATE

> that word!) and undescended testes. He also wears hearing aids for a mild

to

> moderate hearing loss caused by a Mondini malformation in both ears. He

has never

> had an ear infection though, which is great. Obviously, he got some major

> developmental delays, but we have no idea yet what his cognitive ability

is or

> will be.

>

> I have so many questions for other people that have been through this

period

> already. I am kind of confused as to how low muscle tone will affect him

and

> what physical therapy is supposed to do. I have come to terms with his

physical

> stuff, and I feel like I can handle all of that. But I am absolutely

> terrified of him having any sort of intellectual limitations. It's a real

stmbling

> block for me, so I would love to hear from any of you about how you deal

with all

> of this and what life is like after the baby period is over. His

differences

> are just starting to be apparent to strangers, and it makes me so sad to

do

> those stupid developmental checklists at the doctors office.

>

> I'm a pretty natural, non-interventionist person, so all of this medical

> stuff has been very taxing. Does it ever slow down?

>

> And finally, my older son has been mysteriously, but not too severely,

> delayed, mostly in his speech. I feel a lot like I must have done

soemthing wrong!

> Anyone else have another child with special needs, either CHARGE or

something

> else?

>

> Now that I've dumped all of that, please email me! I am a wreck!

>

May 28, 2004

,

First bit of advice - THROW OUT THOSE STUPID DEVELOPMENTAL checklists! Kids

with CHARGE do things on their own timeline. I remember when my Kennedy was at

the same point with the low muscle tone, not seeming to do anything and everyone

said " they seem to go for a long time not doing anything and then have this big

spurt of development. " I had a hard time believing that (mostly because I can

be really impatient!) but now my little princess goes to regular kindergarten,

dance class, birthday parties, swimming, you name it, she does it. If you want

to see her, visit http://personal.nbnet.nb.ca/gweir/kennedy.html

As for the intellectual issues, I've come to realize that EVERYONE can learn,

they just might learn in different ways. Kennedy keeps right up with her class

now and is above average in some areas (reading) but behind in others

(concepts). Every accomplishment means so much, I realize she may not always

learn the same curriculum at the same pace but she does and CAN learn.

It's hard because I think your is in one of those lulls, but I will tell

you the same thing the other parents told me, he will come but it will be on HIS

timeline, no one elses. It's hard to realize, but things do come along.

Weir

Mom to Kennedy, 6 yr old with CHARGE, 14 1/2, 13 and wife to Graeme

New Brunswick, Canada

http://personal.nbnet.nb.ca/gweir

>

> From: ShKendra@...

> Date: 2004/05/28 Fri AM 12:53:27 ADT

> To: CHARGE

> Subject: New to group, need support BADLY

>

May 28, 2004

Welcome to the group.

The feelings that you have are so very normal.

What part of Mayland are you in? I am in Pennsylvania, so not to far away.

I also went through severe PPD after having my daughter, Vicky. She will be five

in September. She also had tetrology of Fallot, repaired at 10 mos of age. She

is off all cardiac meds now and doing very well. She has bilaterally coloboma,

her right eye being much more affected. She also had to have her esphogus

reattached to her stomach and needed a feeding tube for about 18 mos. As for

her tone, it too was decreased for around a year or better. Vicky still has some

gross and fine motor delays but is doing quite well cognitivily. If you would

like to contact me or call, please feel free to email me me at this address off

of the list. (goofycmhrn1@...) I would be happy to give you a call to

discuss some of your concerns.

Keep your head up.

mother to Vicky age 4 3/4

May 28, 2004

Have you tried some of the infant stim programs? Maby some of those

programs can help him to play a bit? Can I share the " welcome to

holland " and my " I am holland " poem? It probably wont help that much

but others say that my poem is good so I will take their word for it.

I really dont want to be harsh, but please, dont greave for the child

you could have had. Celebrate the child you now have. Both you and

your husband need to do that. Why not do a family outing, say this

weekend, have a family picnic at a beach or even your back yard and

just enjoy the day for what it is. Buy 4 t-shirts, and some fabric

paint. Make everyone put their hand print on each of the four t-

shirst. and write a message on each t-shirt like " we are family " and

write everyone's name on the shirts then get someone to take a

picture of the four of you with your t-shirst.

Just a thought.

Chantelle

May 28, 2004

I was sure worried about the mental delays too. infact when

wesley was going to start first grade they said they wanted to put

him in a school that is just for disabled kids. and I said NO WAY

.. from what it sounded like to me they where just going to label

him behind and keep it that way. I have seen many things with

wes I knew he was capable of more then they where giving him credit

for. I put him in a school where they main stream him. he goes

to a reg. class for part of the day and then takes his academics

to the resorse room to get one on one help with them. he is up

with his class in his science history computers and such. he

is half a year behind in his reading and close to a year behind

in his math. I really was afraid at how I saw kids who where

mainstreamed treated when I was young and in school. but it has

never been that way for wes. I dont know if we just got lucky or

what but the kids in the school Love him. they are kind and

helpful to him. and so many say hi to him when we are out

places I have no idea how he knows so many people.

oh on the physical side of things those papers you do are

just to help you. and your son. the more you can say is wrong even

exaggerating the wrong the more help he can get and the better he

will get. Wesley's balance is poor and his muscle tone is low

although he shows everyone how much muscles he has and says he

wants to be hulk when he grows up. we did opt to put wesley in

a younger PE class. he just finished fourth grade this year and

he went to second grade PE. we did this because his size and

balance made it hard for him to play as an equal player with the

fourth graders. second grade PE he still learned the games but

with kids more his size.

there seems to always be talk and concerns about having other

kids and the dr people dont seem to know the answers even. I

have four boys the oldest being wesley with charge and I am told I

have a little girl to be born here really soon I hope. my last

boy got pneumonia an hr after he was born so gets sick easily

but other then that the rest of the kids all seem to be very

healthy.

dont know if any of what I said helps or not. I wish you luck

and I understand your feelings.

KayRena Mother to wesley charger 10 Jake 8 Tristen 6 Zachary 4

and KayLeigh soon.

ShKendra@... wrote:

> Hello all,

>

> My name is and my younger son was given the CHARGE

> label

> when he was about 3 days old. He is 8 1/2 months now, with a big

> brother getting

> ready to turn 4. We're a Navy family, and we just moved to land.

> I'm still

> getting settled in with our specialists after leaving some really

> great

> doctors behind in Virginia Beach. I really struggled with some PPD

> after

> was born, and I'm still really sensitive about him. I worry every day

> about what

> his life will be like, if he'll be lonely or unhappy. I'm sure most of

> you

> know what I mean. I also worry about this happening to us again. We

> really want

> more kids, but right now I don't even know how we would cope with any

> more

> medical issues.

>

> Luckily, from what I've read about CHARGE, is doing really

> well. He

> has coloboma in both eyes, visible in one pupil, further back in the

> other eye.

> He has some nystagmus (shaky eyes) but they think he can actually see

> decently. He loves to look at lights, that is for sure. He had his

> Tetrology of

> Fallot repaired on Thanksgiving, and is hopefully coming off of the

> heart medicine

> in the next month or two. He doesn't have any facial or throat issues

> and

> amazingly has been able to breastfeed, which is so wonderful. He is

> small for his

> age (25 1/2 in and 15 lb) but he was also born at 36 weeks. He's got

> low

> muscle tone, so sometimes it seems like he isn't doing much of

> anything. He's

> slowly getting stronger, can hold his head up pretty well on his tummy

> and will

> hold some toys. He loves to suck his thumb. He's got some funny

> endocrine stuff,

> including adrenal insufficiency and he was hypoglycemic but that seems

> to have

> gone away. He is doing testosterone shots right now for micropenis (I

> HATE

> that word!) and undescended testes. He also wears hearing aids for a

> mild to

> moderate hearing loss caused by a Mondini malformation in both ears.

> He has never

> had an ear infection though, which is great. Obviously, he got some

> major

> developmental delays, but we have no idea yet what his cognitive

> ability is or

> will be.

>

> I have so many questions for other people that have been through this

> period

> already. I am kind of confused as to how low muscle tone will affect

> him and

> what physical therapy is supposed to do. I have come to terms with his

> physical

> stuff, and I feel like I can handle all of that. But I am absolutely

> terrified of him having any sort of intellectual limitations. It's a

> real stmbling

> block for me, so I would love to hear from any of you about how you

> deal with all

> of this and what life is like after the baby period is over. His

> differences

> are just starting to be apparent to strangers, and it makes me so sad

> to do

> those stupid developmental checklists at the doctors office.

>

> I'm a pretty natural, non-interventionist person, so all of this

> medical

> stuff has been very taxing. Does it ever slow down?

>

> And finally, my older son has been mysteriously, but not too severely,

>

> delayed, mostly in his speech. I feel a lot like I must have done

> soemthing wrong!

> Anyone else have another child with special needs, either CHARGE or

> something

> else?

>

> Now that I've dumped all of that, please email me! I am a wreck!

>

May 28, 2004

I remember Kennedy sitting up independently at 14 months. We sat her propped up

in her high chair with towels on either side and did a lot of playing with toys

on that tray. Also, she went into a Lilli Nielsen " Little Room " which she laid

down in and had things hanging down to explore and play with. She had a little

" tadpole " table (from Physiotherapy) that sat very low to the floor and she sat

with her legs under it, leaning forward supporting herself on the table. THe

top of the table was a mirror which she loved, so that encouraged her to try and

lift up to look at herself.

I know though, at 8 months it feels like they're never going to sit up, but he

will eventually!

>

> From: ShKendra@...

> Date: 2004/05/28 Fri AM 10:03:13 ADT

> To: CHARGE

> Subject: Re: New to group, need support BADLY

>

May 28, 2004

Hi ,

Dylan's doctor's describe his low tone as " central hypotonia " which means it

is neurological. The easiest way for me to think about it is that Dylan's

nerves do not send strong impulses to his body. This results in his failure

to cough to protect his airway, his low tone, his chronic constipation etc.

He has had PT, OT, SI since he was a baby and I think they are all very

valuable, particularly in teaching skills, but they have not produced the

visible changes that I see with cranial sacral therapy. Unfortunately

cranial sacral is not covered by our insurance and we pay $100 a visit,

which we really can't afford. We keep doing it, because I know it keeps him

from having the migraines as often and as bad as he used to; it keeps his

body straight; and it helps manually tell his intestines to move things

through.

When I refer to keeping his body straight that is connected to the

hypotonia, because he used to have a fairly significant curve in how he even

sat in a chair or when he stood, because of his low tone. I was concerned

that his muscles would get so used to being in that curved position that he

would develop scoliosis. Now he is noticeably straight in how he stands and

sits and of course he has more strength.

Is his tone normal no, but he seems to have far better function than he used

to.

I don't know if these answers help you, they are just what I see in Dylan

and my theories in trying to explain it.

Best of luck in getting the new services set up for .

Kim

> Kim,

>

> Thanks for your support. I keep trying to be positive since has been

> getting help since he was born. It is just scary to have no idea how he will

> develop, you know? It is nice to hear that families find ways to get around

> stuff though.

>

> You said that your son has low muscle tone. What sort of things did you find

> helpful for that? Did craniosacral therapy help? Our insurance will cover

> regular PT, OT, speech, but we have to go through the Early Intervention

> people

> first. We're right in the middle of that process, but had to redo everything

> when we moved.

>

> Just curious about low tone stuff...

>

> mom to (CHaRGE, 8 mos and 3 1/2)

>

May 29, 2004

-

From the keyboard of ShKendra@...:

> .... I actually have been on Zoloft since he was a week old

> and just recently weaned off of it. One of those side effects were getting a

> bit difficult! I'm definetly better on the actual depression front, but I am

> greiving the child I thought I would have. Does that make sense?

>...

My CHARGE baby was on the very severe end of the spectrum and didn't make it

(she died shortly after her heart surgery at 13 days old). Anyway, I've been

told that anti-depressants can interfere with the grief process, so it may be

that now that you're off of them, you're only now experiencing some of the

stored up grief from all those months.

Hang in there,

Debbie

--

+ Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html +

| Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & |

| Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and |

| birth defects, not by eliminating them or making them happen only to bad |

| people (He can't do that), but by summoning forth friends and neighbors |

+ to ease the burden and to fill the emptiness. " -- Harold S. Kushner +

May 30, 2004

,

Our cHARGE daughter will be 20 in Sept. We went throught the grief process

for " the normal " baby girl we had hoped for. I am not sure if others have done

the same. 's first two years were very frighening. ( we didn't know what

CHARGE was until she was 17) Her first 13 years were full of surgeries. I was

on Zoloft when she was about age 6 to 10 for depression and stress. I developed

a medical problem reaction to it and had to quite. We have been very fortunate.

She is now doing very very well. The only problem she has at the moment is a

bad ear ( not much hearing even with her aid) She sees the doctor again soon.

Hang in there. The first years have been the hardest for most of us. It

does get easier. Our is a real blessing to us and everyone she meets.

Blessings and Hugs,

Lynn

Pierpont , OH ( NEO 10 miles south of Conneaut)

Mom to Tom 24, cHARGE 19 1/2, and wife to Doug

Re: New to group, need support BADLY

-

From the keyboard of ShKendra@...:

> .... I actually have been on Zoloft since he was a week old

> and just recently weaned off of it. One of those side effects were getting a

> bit difficult! I'm definetly better on the actual depression front, but I am

> greiving the child I thought I would have. Does that make sense?

>...

My CHARGE baby was on the very severe end of the spectrum and didn't make it

(she died shortly after her heart surgery at 13 days old). Anyway, I've been

told that anti-depressants can interfere with the grief process, so it may be

that now that you're off of them, you're only now experiencing some of the

stored up grief from all those months.

Hang in there,

Debbie

--

+ Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html +

| Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & |

| Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and |

| birth defects, not by eliminating them or making them happen only to bad |

| people (He can't do that), but by summoning forth friends and neighbors |

+ to ease the burden and to fill the emptiness. " -- Harold S. Kushner +

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

May 31, 2004

hi ,

welcome to the list ... hope you've had a few of your questions answered,

keep'm coming!

one thing in your email really leapt out at me ...

----- Original Message -----

> I'm a pretty natural, non-interventionist person, so all of this medical

> stuff has been very taxing. Does it ever slow down?

>

> And finally, my older son has been mysteriously, but not too severely,

> delayed, mostly in his speech. I feel a lot like I must have done

soemthing wrong!

> Anyone else have another child with special needs, either CHARGE or

something

> else?

my older son's language is also a bit delayed ... it makes me wonder how

much attention i *really* gave him over the past wee while ... and then, do

you know what? ... i cut myself some slack! i think you should do the same

.... we can only do so much ... for me that has meant cutting back on just

about everything else except keeping our wee family in working order ... and

even that falls over every now and then!!

it has really made me concentrate on what i *really* need to, to think about

things, like what do we want for our children and ourselves and making sure

we can do that... as an example, we've just moved a long way to be back

closer to family, dh has a whole new job, and i am going to continue my

dream to do home schooling ... this time last year i didn't think i'd be

able to manage ... it does get easier. All the medical stuff becomes less

often (maybe not less serious just less often!), and i like to hold on to

the fact that i am not torturing my child - he needs the medical help to

live healthily and happily :0)

take care,

Jo

ds Ben 5yrs, ds Josh 21 mths my little CHaRGE'r

May 31, 2004