Genetics Question

November 5, 2006

There is no research that I know of at the present. There are

sibling studies, that I do know. Our 2 and a half year old nephew

was recently dx-ed with ASD this summer and my sons are wondering as

well--they are in their early 20s. My boys were very recentful of

all the time I spent working on CycleUSA in 2001--remember, the

cyclist who rode across the country raising money for autism

research? I told them then, I am doing this for my future

grandbabies, it is too late for your brother but I want YOU to be

able to have a genetic test (or something) by the time you want to

have kids. I still feel that way BUT I also tell tham having a

child with autism is not the end of the world--you can survive, they

know that. So, I guess I would tell them hang tough, we are trying

for an answer and if there isn't one by the time they want children,

they need to do what they feel is right for them. It sucks, doesn't

it?

Marie

>

> My two daughters regularly express their fear of having a child

with severe

> autism. They love their brother, but they don't want to spend

their entire

> lives with an immediate family member with autism. We of course

address

> their concerns from many perspectives, but the one thing we can't

answer but

> what they most want to know is their risk. I assume this is still

a big

> unknown, but can anyone in the group shed some light on this?

Possibly a

> valid study, or a professional who is currently studying this?

Have any of

> you had to deal with this? Would very much appreciate your

responses.

>

November 6, 2006

I too believe there are no studies to date, other than sib and concordant twin studies which indicate that there is definitely a genetic component to the disorder. I think we do need to be supporting good research in the field of genetics in order for our other children to make more informed decisions. I have a typical 22 year old and to be honest, though I adore my son with autism, it would break my heart to watch his typical brother have to go through what we have gone through.

It would be tempting to tell our son...don't do it until you can know for sure, but if and when a test exists, do we want to promote the killing of fetus' with autism? These are very weighty questions and they remind us that the issue isn't one dimensional.

Ellen

Ellen Garber Bronfeldegskb@...

Genetics question

My two daughters regularly express their fear of having a child with severe autism. They love their brother, but they don’t want to spend their entire lives with an immediate family member with autism. We of course address their concerns from many perspectives, but the one thing we can’t answer but what they most want to know is their risk. I assume this is still a big unknown, but can anyone in the group shed some light on this? Possibly a valid study, or a professional who is currently studying this? Have any of you had to deal with this? Would very much appreciate your responses.

November 6, 2006

Hello. This is a question my children have also asked me. This is

how I answer. I am a health care provider and therefore see more

illness and disability than alot of folks. Having said that. If

you are an individual who is not sure if you want to care for a

handicapped child/person or are unable to on all levels, don't have

kids, until you are sure. If it isn't Autism, it could be something

else, and there is always a first link in the family to any genetic

or non genetic situation, Disorder, Dx. Also lets face it, if

someone wants an " easy " time raising any kid, be it typical or

atypical again, don't have kids. There are no guarentees in

anything in life.Being a parent, even of typical kids let alone ASD

kids is sometimes very difficult and always challenging. There are

also accidents totally unforseen that happen to normally typical

kids that are unexpected and unforseen and change your families life

forever! Case in point- Reeves. Money won't even save

you. Having kids is not a rite of passage, or a have to do thing,

and should never be taken lightly, and having children is not for

everyone.

Hope this helps someone.

Diane S

-- In IPADDUnite , " lisa shanahan " <shanahanlm@...>

wrote:

>

> My two daughters regularly express their fear of having a child

with severe

> autism. They love their brother, but they don't want to spend

their entire

> lives with an immediate family member with autism. We of course

address

> their concerns from many perspectives, but the one thing we can't

answer but

> what they most want to know is their risk. I assume this is still

a big

> unknown, but can anyone in the group shed some light on this?

Possibly a

> valid study, or a professional who is currently studying this?

Have any of

> you had to deal with this? Would very much appreciate your

responses.

>

November 6, 2006

I try not to editorialize, but this was an interesting and thought provoking answer.

Thanks, Diane.

Ellen

Ellen Garber Bronfeldegskb@...

Re: Genetics question

Hello. This is a question my children have also asked me. This is how I answer. I am a health care provider and therefore see more illness and disability than alot of folks. Having said that. If you are an individual who is not sure if you want to care for a handicapped child/person or are unable to on all levels, don't have kids, until you are sure. If it isn't Autism, it could be something else, and there is always a first link in the family to any genetic or non genetic situation, Disorder, Dx. Also lets face it, if someone wants an "easy" time raising any kid, be it typical or atypical again, don't have kids. There are no guarentees in anything in life.Being a parent, even of typical kids let alone ASD kids is sometimes very difficult and always challenging. There are also accidents totally unforseen that happen to normally typical kids that are unexpected and unforseen and change your families life forever! Case in point- Reeves. Money won't even save you. Having kids is not a rite of passage, or a have to do thing, and should never be taken lightly, and having children is not for everyone.Hope this helps someone.Diane S-- In IPADDUnite , "lisa shanahan" <shanahanlm@...> wrote:>> My two daughters regularly express their fear of having a child with severe> autism. They love their brother, but they don't want to spend their entire> lives with an immediate family member with autism. We of course address> their concerns from many perspectives, but the one thing we can't answer but> what they most want to know is their risk. I assume this is still a big> unknown, but can anyone in the group shed some light on this? Possibly a> valid study, or a professional who is currently studying this? Have any of> you had to deal with this? Would very much appreciate your responses.>

February 2, 2008

Beth,

Our Experience with Genetis was GREAT. I have to say it is best to get

Medical information from Grandma and Grandpa forward. To siblings. Ummm This

was

easy as I had already did the Family Medical History a few years earlier.

You will go in and the Dr will come in and talk with you about Hannah.

Then ask you Questions about your side of the family as well as Hubby's side.

They mark it down on paper. Then Labs are done within a week or 2 you go back

in for results. They can tell what Hannah has in a way of what she could get

and what is in the DNA. If further issues come up they can test Siblings and

Parents.

Like with my Niece with Galactoseamia it is inherited and we had to see

which side of the family was the r. My Sister refused to go and have the

test done. The Dad did not have any signs of it so we did it by what My Mom

did and her Physical Health and then to all my Siblings then to . It

was GREAT they can do thing's like this. I found out it is running on our side

of the family. Genetic is GREAT.

Robbin

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

February 2, 2008

Jinny,

Your on the right path. As this is Family Medical History in which to get

done prior to the First visit. Just remember if anyone past as a child

please write it down from what. This is important as well. Since I had 2

Sister's

pass away as infants it was important to look at the cause of death was.

I also had a few relatives who passed away young. I had did my home work

prior to this and knew about all of them.

Remember this If a Grandma says oh her sister had Rhuematism be sure to

mark it as that. Ask about anything. The way they walked if any had a Limp

issues like this helped us. If you have pictures that even helped as 1 of the

kid's had 1 leg shorter than the other and the Genetics asked if that child is

still living. I looked and said she passed away with Rhuematism. BINGO the

line was there. Write down if the relative also had Scarlet Fever or Rhuematic

Fever as well. Heart issues and Diabetes. Something about the Scarlet fever

and Rhuematic Fever was of concern. Cancer's as well. Believe me when I say a

Genetics Dr will ask questions lololol. This is why the Papers are started

before you see him.

Giving you time to get the information up. Leukemia is another issue. As

when I told about my Brother in laws Brother passed with this the Genetics Dr

asked about if he had kid's Since it is my Sister's husband he said to make

sure if they decide to have kids to have both see a Genetics Dr. Since they

would be a High Risk on both sides of Health issues.

Robbin

**************Biggest Grammy Award surprises of all time on AOL Music.

(http://music.aol.com/grammys/pictures/never-won-a-grammy?NCID=aolcmp00300000002\

5

48)

February 2, 2008

Hi everyone:

I have a question about genetics testing. Can anyone tell me what is involved

in this? Do they test more than just the person with the medical problem or

would they test other family members too. I got the name of a genetics doctor

locally here that my friend takes her daughter to. She told them a little about

Hannah and they said they would see her without a referral.

So, how long does this process take and what should we expect if we decide to

go? I think this is our next logical step, but I'm hesitant to go back to our

Children's hospital for it.

Sending prayers & happy thoughts,

Beth :-)

February 2, 2008

Hi Beth

We're in the middle of this ourselves with Chris. I don't know how long

it will take, but I've been meaning to send you this info. The guy that

we're planning to see is in St Louis and was referred to us by the local

Ehlers-Danlos support group. His specialty is Ehlers-Danlos. Right now

all we've done is get some paperwork from his office that we are filling

out and we're waiting for some rheumy paperwork to send with the others

so that we can set up an appointment. The paperwork does include all

relatives- parents, siblings, aunts, uncles, cousins, great grandparents,

grandparents etc, but is very straightforward and not complicated.

S. Gottesman, MD

Associate Professor

Division Director

Division

Medical Genetics

Contact Information

Cardinal Glennon Children's Medical Center

1465 S. Grand Blvd.

St. Louis, MO 63104

Office phone: (314) 577-5639

Office fax: (314) 268-4112

I don't know much about him except what I've looked up on the web and

that the head of that support group recommended him and said that he's a

really nice guy.

Jinny (pauci? 11)

On Sat, 2 Feb 2008 13:40:21 -0800 (PST) Beth Yohnk

<yohnkmom@...> writes:

> Hi everyone:

> I have a question about genetics testing. Can anyone tell me what

> is involved in this? Do they test more than just the person with

> the medical problem or would they test other family members too. I

> got the name of a genetics doctor locally here that my friend takes

> her daughter to. She told them a little about Hannah and they said

> they would see her without a referral.

>

> So, how long does this process take and what should we expect if we

> decide to go? I think this is our next logical step, but I'm

> hesitant to go back to our Children's hospital for it.

>

> Sending prayers & happy thoughts,

> Beth :-)

>

February 2, 2008

Jinny:

I can't wait to hear your experience. I wonder if this is the doctor the woman

from our EDS foundation was talking about. She said she knew a great doctor in

St. Louis. I think I will look him up tomorrow and see what I can find. We've

had such bad luck at our Children's Hospital, I really don't think we will go

there. What information from the rheumy are they wanting, we've not done well

with rheumy's and I would be extremely hesitant to ask them to forward

information. Can you tell what kind of family information they are looking for?

I'm going to at least start collecting more detailed medical history on my dad's

side. If something happens to him, there would not be anyone else to ask, most

of his siblings are deceased.

Please keep me posted as to how things are progressing with your experience.

I'm hoping 2008 brings diagnosing for all our " mystery " kids!

Beth & Hannah, 11, unspecified arthritis w/hypermobility; asthma; gerd;

migraines

Sending prayers & happy thoughts,

Beth :-)

Re: Genetics Question