Re: What can it be?

June 15, 2005

Hi ,

Welcome to our group. I think it is great that you are looking out for

your niece.

I hope I can answer some of your questions. First though I have a few

of my own. Where in Ohio do you live? Many members of this group live

in Ohio. Pat, lives near Cleveland and is very helpful.

Does your niece receive services through early intervention?

There are no local support groups. This is a very rare growth disorder,

so there is not a lot local support. Have you heard of the Magic

Foundation? They have an annual convention in July in Chicago. They

have many sessions during the conference regarding RSS. It is

definitely worth the trip. You can contact the Magic Foundation via the

web. Their web address is www.magicfoundation.org Brock Salem

is a memeber of this list and is the Magic Foundation RSS Director. She

can provide all you ever want to know about Magic and RSS. She and

others are right now writing a guide book about RSS.

Night terrors are not part of RSS. They are common in young children. I

can't say ifit is a problem because it depends on how long they have

been going on. I would suggest a call to the pediatrician regarding

this.

Has your neice had her hearing tested? Has she had a lot of ear

infections?

My son did not speak until he was almost 3. We were teaching him sign

language. I would not be too concerned until she gets closer to 3. It

may be related to her haering problems. Again, I would talk with her

pediatrician regarding her not talking. Also, try teaching some sign

language. It does help them to talk. It promotes communication in any

form.

I hope this helps. Please feel free to ask anything.

Ken M

> Hello. My name is I just found your support group the other

> day. I have a niece Madyseon who was just diagnosed w/ silver

> syndrome. I myself and not really familiar with the disorder, so any

> help would be greatly appreciated. Madyseon screams at night a lot

> it's almost like a night terror but it happens during the day

> sometimes when she sleeps and it happens all night long... is this a

> part of RS or should we be concerned? Also she has very poor

hearing ?

> She will be 2 in July and doesn't speak... is this a part of RS?

> Finally my family is from OH does anyone know of a support group

they

> might be able to attend? Please help! Thanks--

June 15, 2005

Hi . We are also in Ohio. We live NE of Columbus. My son

just turned 3 at the end of May and also has RSS. He spends a

lot of time at Columbus Children's! I have heard of others having

night terrors, but it is not related to RSS. Also, if your neice has a

lot of ear infections, that could be why her hearing isn't that great.

I would definetly look into seeing an ear, nose and throat doctor to

check her out and get her a hearing test. Maybe she just has a lot of

fluid on her ears and ear tubes will help her hear better. My son had

to have tubes placed in January due to numerous ear infections, which

is a trait of RSS.

The only support we have for RSS is the MAGIC Foundation. They are

WONDERFUL and have so much information agthered on RSS. You should

check out their website at www.magicfoundation. org (no space. There

is a convention held in Chicago every July and they have seminars all

about RSS and there is even an RSS specialist from New York that comes

and has appointments with the kids to help and give advice to parents.

I hope you will check it out as you will not be sorry. They are the

best support and are great about getting information out to people.

Let us know in Ohio where your family is.

Jodi R.

, 3 RSS

> Hello. My name is I just found your support group the other

> day. I have a niece Madyseon who was just diagnosed w/ silver

> syndrome. I myself and not really familiar with the disorder, so any

> help would be greatly appreciated. Madyseon screams at night a lot

> it's almost like a night terror but it happens during the day

> sometimes when she sleeps and it happens all night long... is this a

> part of RS or should we be concerned? Also she has very poor

hearing ?

> She will be 2 in July and doesn't speak... is this a part of RS?

> Finally my family is from OH does anyone know of a support group

they

> might be able to attend? Please help! Thanks--

June 15, 2005

- The only organization for our families is the MAGIC

Foundation, based out of Chicago, IL. www.magicfoundation.org. We

are mostly volunteers (about 5 or 6 of us on the listserve currently

volunteer so we can have an RSS/SGA division), and hundreds of us are

also members ($30 a year to pay for postage, phone calls, etc).

Go to their website (its brand new so still getting all the info up on

it). They can mail you a pamphlet on RSS and ask for a copy of the

MAGIC magazine, and ask for a copy of the last newsletter. This will

give you an idea of what MAGIC is about.

But since you are from Ohio, I would strongly recommend, since the

location and timing are right, that you bring your niece to the MAGIC

convention July 21-24th. We usually have about 100+ RSS/SGA

families. There are medical speakers who will teach you everything

you need to know about different aspects of the RSS child. There are

social and networking events -- you get to meet the RSS children of

the 100 families -- all ages, all different sizes. It is

incredible!!! Many of us admit that it is the one weekend where both

our kids and us feel " normal. " Also, there is a pediatric

endocrinologist named Madeleine Harbison from NYC who has about 130

RSS patients -- the " witch doctor " of RSS. She provides 30-minute

consultations to new families FREE during the convention. I don't

know what spots are left, but know that there are some still.

PLUS, we have a scholarship program that can provide free hotel and

registration. Simply email Dayna at daycarney@... for more

information on that.

Re the not speaking -- that is a tough one. Has she been evaluated by

early intervention services (provided free by your state, referral

from the pediatrician). A majority of RSS children do have speech

articulation problems, and speak a bit later than normal, but it is

more that you can't understand what they are speaking, not that they

aren't talking at all. However, your niece also has hearing issues

which could be greatly exacerbating the problem. Has she had a

comprehensive audiology/speech workup by a Children's Hospital?

Let us know! We'll try and give you any info we can. Meanwhile, try

and talk to Dayna about the scholarship and come see us in 6 weeks!!!

Salem, , RSS, age 9 1/2, diagnosed at age 2; no

treatment until age 4yrs 9 months (when she was 27 pounds and 38.5

inches tall). Now on GH, Periactin for appetite, PRevacid for reflux,

Arimidex for early adrenarche, but she is at the 75th percentile for

height and about 20th for weight, BMI is an abysmal 5th percentile).

Bottom line, NO reason not to come -- you can drive from Ohio!!!

The hearing loss is definitely an increased risk for RSS children.

But the night terrors is pretty common for all 2-year-olds. Doesn't

make it easier but it is within the normal range. Have her parents

talk to the pediatrician about any advice the doctor might give them.

> Hello. My name is I just found your support group the

other

> day. I have a niece Madyseon who was just diagnosed w/

silver

> syndrome. I myself and not really familiar with the disorder, so any

> help would be greatly appreciated. Madyseon screams at night a lot

> it's almost like a night terror but it happens during the day

> sometimes when she sleeps and it happens all night long... is this a

> part of RS or should we be concerned? Also she has very poor

hearing ?

> She will be 2 in July and doesn't speak... is this a part of RS?

> Finally my family is from OH does anyone know of a support group

they

> might be able to attend? Please help! Thanks--

June 15, 2005

-hi stephanie i am also stephanie!!!! yes, speech problems are common,

i think, at least they are with my daughter she is 4 and has a lot of

speech problems, has your neice had a lot of ear infections that could

be the cause of the poor hearing? kyla gets hearing test every 4-6

months because of her ear infections, anyway i haven't read any of

your replies maybe your questions have already been answered, welcome

to the group, these people are great!!! stephanie, kyla 4 RSS

jonathan 19 months nin RSS

-- In RSS-Support , " rectherapists " <sjb_skeets@h...>

wrote:

> Hello. My name is I just found your support group the

other

> day. I have a niece Madyseon who was just diagnosed w/

silver

> syndrome. I myself and not really familiar with the disorder, so any

> help would be greatly appreciated. Madyseon screams at night a lot

> it's almost like a night terror but it happens during the day

> sometimes when she sleeps and it happens all night long... is this a

> part of RS or should we be concerned? Also she has very poor

hearing ?

> She will be 2 in July and doesn't speak... is this a part of RS?

> Finally my family is from OH does anyone know of a support group

they

> might be able to attend? Please help! Thanks--

June 16, 2005

,

Madyseon hasn't had any ear infections or tubes her mother says...

I am just worried about her hearing I know she has seen an

audiologists but my sister says that they didn't reccomend anything

for maddie. My sister says there are just going to monitor her.

Maddie will be 2 in July. She doesn't even try to speak.. and that

worries me.

Her mother is very young 22 to be exact and maddie has a sister who

will be 3. Being 6 hours from home it's hard. My sister doesn't have

internet access. What puzzles me is when they first diagnoised

maddie the doctors told Courtenay my sister that RSS is very rare

and there are only 500 cases in the US... But from what all of you

have shared thus far it seems to me that it is common.. and I

correct?

I however am really concerned about maddie's screaming out at night

she's even starting to do it during the day. If she falls asleep

like 15 minutes into her sleep she will scream but still be asleep

it's like a night terror except it happens all the time, and is

really bad at night. My sister told me she said something to the

doctor but I really don't belive her because wouldn't they have done

something by now?

-- In RSS-Support , " blondesteph_00 "

<jsskjadams@p...> wrote:

> -hi stephanie i am also stephanie!!!! yes, speech problems are

common,

> i think, at least they are with my daughter she is 4 and has a lot

of

> speech problems, has your neice had a lot of ear infections that

could

> be the cause of the poor hearing? kyla gets hearing test every 4-6

> months because of her ear infections, anyway i haven't read any of

> your replies maybe your questions have already been answered,

welcome

> to the group, these people are great!!! stephanie, kyla 4 RSS

> jonathan 19 months nin RSS

> -- In RSS-Support , " rectherapists "

<sjb_skeets@h...>

> wrote:

> > Hello. My name is I just found your support group the

> other

> > day. I have a niece Madyseon who was just diagnosed w/

> silver

> > syndrome. I myself and not really familiar with the disorder, so

any

> > help would be greatly appreciated. Madyseon screams at night a

lot

> > it's almost like a night terror but it happens during the day

> > sometimes when she sleeps and it happens all night long... is

this a

> > part of RS or should we be concerned? Also she has very poor

> hearing ?

> > She will be 2 in July and doesn't speak... is this a part of RS?

> > Finally my family is from OH does anyone know of a support group

> they

> > might be able to attend? Please help! Thanks--

June 16, 2005

> > Hello. My name is I just found your support group the

other

> > day. I have a niece Madyseon who was just diagnosed w/

silver

> > syndrome. I myself and not really familiar with the disorder, so

any

> > help would be greatly appreciated. Madyseon screams at night a

lot

> > it's almost like a night terror but it happens during the day

> > sometimes when she sleeps and it happens all night long... is

this a

> > part of RS or should we be concerned? Also she has very poor

> hearing ?

> > She will be 2 in July and doesn't speak... is this a part of RS?

> > Finally my family is from OH does anyone know of a support group

> they

> > might be able to attend? Please help! Thanks--

June 16, 2005

Ken,

My family is from a town called Arcanum it's about and hour or so

from Dayton. However I live in Grand Rapids MI 6 hours away. I love

Maddie to death despite the fact I don't get to see her often. I

worry though from what my mother tells me about her and what I see

when I do get to see her. I have encouraged my family to begin sing

with her... I worked on it with her while she is here w/ us. Her

mother and father however know no sign. I have given them books and

articles on signing as I have studied it for 3 years as part of

college courses. I encourage signing but to my knowledge it isn't

happening. Madyseon is going to a school called Wayne they

provide some early intervention. I am not sure if she still goes or

not. I have checked out MAGIC and passed all the information to my

mother who lives really close to maddie to share with her mother. I

am hoping they will be able to go. I know maddies mother needs a lot

of education shall we say on RSS as well as all of my family.

> > Hello. My name is I just found your support group the

other

> > day. I have a niece Madyseon who was just diagnosed w/

silver

> > syndrome. I myself and not really familiar with the disorder, so

any

> > help would be greatly appreciated. Madyseon screams at night a

lot

> > it's almost like a night terror but it happens during the day

> > sometimes when she sleeps and it happens all night long... is

this a

> > part of RS or should we be concerned? Also she has very poor

> hearing ?

> > She will be 2 in July and doesn't speak... is this a part of RS?

> > Finally my family is from OH does anyone know of a support group

> they

> > might be able to attend? Please help! Thanks--

June 16, 2005

Jodi,

I know Maddie was seeing some doctors at Dayton's childrens

Hospital and I believe she went to Cincinnati children's hospital

but don't quote me on that one. Now that you metion fluid on the

ears I believe my sister mentioned to me that when maddie was born

they said she had abnormal amount of fluid pressing on her ear

drums. They thought maddie had all kinds of things when she was

born. they originally diagnoised her with hydrocephlus ( not sure if

that is spelled right) and said that was causing fluid in her ears.

Finally when she was almost a year old they suspected RSS and

finally we got the diagnosis.

I will talk to my sister about Columbus children's hospital. Are

there doctors who know a lot about RSS there? I know when my sister

lives the doctors didn't even know very much about RSS

> > Hello. My name is I just found your support group the

other

> > day. I have a niece Madyseon who was just diagnosed w/

silver

> > syndrome. I myself and not really familiar with the disorder, so

any

> > help would be greatly appreciated. Madyseon screams at night a

lot

> > it's almost like a night terror but it happens during the day

> > sometimes when she sleeps and it happens all night long... is

this a

> > part of RS or should we be concerned? Also she has very poor

> hearing ?

> > She will be 2 in July and doesn't speak... is this a part of RS?

> > Finally my family is from OH does anyone know of a support group

> they

> > might be able to attend? Please help! Thanks--

June 16, 2005

I worried about my son - he didn't start talking until around 2 and a half. He

finally started taking off the month we were waiting for a speech referral

after his grandma was reading Mother Goose to him. She would point out the

various words which described things like 'door', and he started mimicking then

calling things by their names. Now at 10, he is a major talker - wants to be a

lawyer!!! It's hard for a Mom of a child with lots of medical problems

(especially the first few years of RSS!) just to sit down and enjoy a good

children's book with them sometimes, so I'm so grateful that during grandma's

brief visits she gave us such valuable input!

Also, my husband took awhile to talk - it turned out his older siblings did all

the talking for him, so he didn't feel he needed to talk.

Inga

08:39 PM 6/16/2005 +0000, you wrote:

>

> ,

> Madyseon hasn't had any ear infections or tubes her mother says...

> I am just worried about her hearing I know she has seen an

> audiologists but my sister says that they didn't reccomend anything

> for maddie. My sister says there are just going to monitor her.

> Maddie will be 2 in July. She doesn't even try to speak.. and that

> worries me.

> Her mother is very young 22 to be exact and maddie has a sister who

> will be 3. Being 6 hours from home it's hard. My sister doesn't have

> internet access. What puzzles me is when they first diagnoised

> maddie the doctors told Courtenay my sister that RSS is very rare

> and there are only 500 cases in the US... But from what all of you

> have shared thus far it seems to me that it is common.. and I

> correct?

> I however am really concerned about maddie's screaming out at night

> she's even starting to do it during the day. If she falls asleep

> like 15 minutes into her sleep she will scream but still be asleep

> it's like a night terror except it happens all the time, and is

> really bad at night. My sister told me she said something to the

> doctor but I really don't belive her because wouldn't they have done

> something by now?

>

> -- In RSS-Support , " blondesteph_00 "

> <jsskjadams@p...> wrote:

> > -hi stephanie i am also stephanie!!!! yes, speech problems are

> common,

> > i think, at least they are with my daughter she is 4 and has a lot

> of

> > speech problems, has your neice had a lot of ear infections that

> could

> > be the cause of the poor hearing? kyla gets hearing test every 4-6

> > months because of her ear infections, anyway i haven't read any of

> > your replies maybe your questions have already been answered,

> welcome

> > to the group, these people are great!!! stephanie, kyla 4 RSS

> > jonathan 19 months nin RSS

> > -- In RSS-Support , " rectherapists "

> <sjb_skeets@h...>

> > wrote:

> > > Hello. My name is I just found your support group the

> > other

> > > day. I have a niece Madyseon who was just diagnosed w/

> > silver

> > > syndrome. I myself and not really familiar with the disorder, so

> any

> > > help would be greatly appreciated. Madyseon screams at night a

> lot

> > > it's almost like a night terror but it happens during the day

> > > sometimes when she sleeps and it happens all night long... is

> this a

> > > part of RS or should we be concerned? Also she has very poor

> > hearing ?

> > > She will be 2 in July and doesn't speak... is this a part of RS?

> > > Finally my family is from OH does anyone know of a support group

> > they

> > > might be able to attend? Please help! Thanks--

>

> ----------

>

June 16, 2005

Your niece should be teaching her daughter sign language if she is not

speaking. It is easy to pick up a book and teach herself. I am a

special ed teacher working with kids with language disabilities and

use sign language even to help with reading words. It frees up the

mind and allows the child to express herself in some way. I'll bet

that some of the screaming/terrors are from frustration and not being

able to communicate. It is a primal instinct to react that way when

no one around you seems to understand your wants and needs. Even just

simple signs like " eat, more, drink, sleep, hi, " can open up a whole

new world.

Jodi Z

June 16, 2005

Hello Welcome to the group My son Grayson is almost 2 and does not speak more

than a few sounds, but Our therapist and family have been learning signs and it

has been great . Grayson knows over 25 diffrent signs and is now able to tell me

what he wants without getting so frustrated. Signing will not slow down their

talking abilities. I suggest everyone try signing.

Amber (austin 7 non-rss, Grayson 21 months rss-g-tube,meds)

rectherapists wrote: