Re: New Mom

April 28, 2004

Mimi,

Welcome to the group! I think you will find this listserve to be a

wonderfully supportive place to be.

There is a specialist that many of us on the list see. Her name is

Dr. Harbison and she is located in NYC. She is moving her practice

over to Mt. Sinai in the next few weeks. Dr. Harbison is fabulous.

We travel from Virginia to see her every three months.

Right now I would say the most important thing is to please make

sure your son is fed throughout the night (and day). Many RSS kids

are hypoglycemic (meaning when they are fasted their blood sugars

drop too low). For us, that means my son son never goes more than

three hours without eating. This is very important and many doctors

don't know this.

Also, many RSS kids have delays in the are of gross motor (sitting,

crawling, walking, jumping) and fine motor skills (writing,

coloring). This doesn't mean your son won't be able to do these

things, he will just have to work harder to learn. Your son can

get therapy through your local Early Intervention office. If you

let me know what state you live in, I could give you the contact

info. I don't mean to overwhelm you, it is just that I want you to

know this resource exist. Early intervention is generally free (or

on a sliding fee scale). And generally just having a diagnosis

qualifies a child.

I don't want to overload you with too much info, I just wanted to

point out a couple of areas to look into. Please ask questions you

might have. Odds are someone on the list has dealt with it.

Please know you are not alone. Being a new parent is tough enough,

and being a new parent with RSS is even tougher. But, it does get

easier with time and there are a lot of wonderful people on this

list that will help.

All my best,

Alison

Hang in there.

> I am a new mom and a new member. My son was born on 1-19-04 and he

> weighed 4 lbs 12 oz and was 15 " long. My pregnancy was normal, and

> the OB predicted an 8 lb baby! He was breech so the day after my c-

> section the doc came in and told me that he had problems and was

> handing my " case " over to a neonatologist. He suspected

> Achondroplasia, and told me that my son had " dysmorphic features "

> that needed to be looked at so he sent us to a genetic counseling

> session in March. She diagnosed probable -Silver and wants

us

> to come back in September. On top of the RSS, he was born with

> congenital hypothyroidism so we get blood work every month and see

> an endocrinologist. My pediatrician pulled out a book and showed

> pictures of kids with RSS but doesn't seem very knowledgeable on

the

> condition..are there specialists out there? I am having a hard

time

> coping with my son's problems and I would really appreciate any

> advice or insight you might have.

>

> Thanks so much-

> Mimi

April 28, 2004

Alison-

Thanks for your response. About 1 month ago my doc told me that he

could skip one of the night feedings...so 6 hours in between. What

are signs of hypoglycemia? He is now wanting to eat every 2 hours

(hitting a growth spurt I think!;O). I am breastfeeding and

supplementing with bottles of breastmilk + Enfamil Enfacare Lipil

(1/2 teaspoon per 100 cc's). I will start making sure to wake him up

for the night feeding. I am in Texas so the doc you suggested is

pretty far..the contact info you mentioned would be great! Your

encouragement means alot to me..it is nice to know that I am not

alone!

Thanks again-

Mimi

> > I am a new mom and a new member. My son was born on 1-19-04 and

he

> > weighed 4 lbs 12 oz and was 15 " long. My pregnancy was normal,

and

> > the OB predicted an 8 lb baby! He was breech so the day after my

c-

> > section the doc came in and told me that he had problems and was

> > handing my " case " over to a neonatologist. He suspected

> > Achondroplasia, and told me that my son had " dysmorphic

features "

> > that needed to be looked at so he sent us to a genetic

counseling

> > session in March. She diagnosed probable -Silver and

wants

> us

> > to come back in September. On top of the RSS, he was born with

> > congenital hypothyroidism so we get blood work every month and

see

> > an endocrinologist. My pediatrician pulled out a book and showed

> > pictures of kids with RSS but doesn't seem very knowledgeable on

> the

> > condition..are there specialists out there? I am having a hard

> time

> > coping with my son's problems and I would really appreciate any

> > advice or insight you might have.

> >

> > Thanks so much-

> > Mimi

April 28, 2004

hI Mimi!!

welcome to the group!! this is a very supportive and informative

bunch of people here!! they are like an extended family and will

try to help you in any way. my son is 3 and was 5lbs 10oz at birth,

i too was told to expect an 8' 8oz baby so had a planned repeat c-

section!!! Feel free to email me at jlcals2003@ yahoo.com (no space

after the @) good luck!!

jodie

(nicholas-6 nonrss, christopher-3 rss 23lbs 33 " ADHD(possible)

periactin, johnathon-10m nonrss)

April 28, 2004

Hi Mimi-

Your son and experience so far sounds so much like mine! Our sons

were almost the same size at birth, the doctor predicted mine would

be 8 pounds, my son was breech and I had to have a c-section.

It is great that you found this listserve so soon. I did not find it

until my son was one year old which was when he was diagnosed. You

have definitely come to the right place! There are some " experts " in

the field of RSS. I am sure you will hear a great deal about Dr.

Madeline Harbison if you continue to stay active on the listserve.

Many refer to her as " Dr. H " . She has over 130 RSS patients, is

located in NYC, has written many articles on the subjects, and really

loves our kids. We switched to her a few months ago and are so glad

that we did. We live in West Virginia which makes it hard to see her

but so far we are managing.

Where do you live? Chances are there are others on this site near

you and can help you find a good pediatric endo. We only saw the

geneticist two times and then did not feel that we needed her any

longer. Our pediatrician is on board with Dr. H's plan which I feel

is crucial.

I want to encourage you to feed your son every two to three hours

even if he doesn't want to eat. This will prevent hypoglycemia which

is very important. Dr. H feels that frequent bouts of hypoglycemia

may result in poor brain development, hence causing developmental

delays.

There are so many things I would like to tell you but I don't want to

overwhelm you. Keep asking questions and we will keep answering!

Fazzolari

(mom to Dominic - RSS, 4.5 years, 36 inches tall, 24.5 pounds, GHT,

periactin, prevacid)

-- In RSS-Support , " fairiegirl98 "

wrote:

> I am a new mom and a new member. My son was born on 1-19-04 and he

> weighed 4 lbs 12 oz and was 15 " long. My pregnancy was normal, and

> the OB predicted an 8 lb baby! He was breech so the day after my c-

> section the doc came in and told me that he had problems and was

> handing my " case " over to a neonatologist. He suspected

> Achondroplasia, and told me that my son had " dysmorphic features "

> that needed to be looked at so he sent us to a genetic counseling

> session in March. She diagnosed probable -Silver and wants

us

> to come back in September. On top of the RSS, he was born with

> congenital hypothyroidism so we get blood work every month and see

> an endocrinologist. My pediatrician pulled out a book and showed

> pictures of kids with RSS but doesn't seem very knowledgeable on

the

> condition..are there specialists out there? I am having a hard time

> coping with my son's problems and I would really appreciate any

> advice or insight you might have.

>

> Thanks so much-

> Mimi

April 28, 2004

Mimi-

I forgot to mention in my other reply that I would encourage you to

join the MAGIC Foundation. It is only $30.00 per year (I think) and

the benefits are amazing. You will have access to hundreds of

articles about RSS and related issues. They have done the research

for you and all you have to do is request copies. There are many

other reasons to join MAGIC as well. There is an annual convention

in Chicago July 22-25 (I think those are the dates). I am not sure if

your son can travel there at this point but you can definitely keep

it in mind for next year. At the convention you can receive a free

consultation from Dr. H which provides you with tons of great

information. You can meet other parents and see other RSS kids which

is priceless. You can also meet adults with RSS. WHen I met them I

realized that my son will be ok. There will be bumps in the road and

I will have to ensure I get him the correct medical intervention,

etc. but I do know that he will be ok. : )))

F.

> hI Mimi!!

> welcome to the group!! this is a very supportive and informative

> bunch of people here!! they are like an extended family and will

> try to help you in any way. my son is 3 and was 5lbs 10oz at

birth,

> i too was told to expect an 8' 8oz baby so had a planned repeat c-

> section!!! Feel free to email me at jlcals2003@ yahoo.com (no space

> after the @) good luck!!

> jodie

> (nicholas-6 nonrss, christopher-3 rss 23lbs 33 " ADHD(possible)

> periactin, johnathon-10m nonrss)

April 29, 2004

Mimi-

I am glad you are going to start waking him up in the middle of the

night. The signs are sweating - especially around the head area,

irritability, and lethargy - in an infant. In my son. who is 4.5

years old, he gets very cranky and tired when he has low blood

sugar. ALthough he is hungry at that point it seems that he doesn't

want to eat but I have to get him. I make sure he has a heaping

tablesppoon of cornstarch mixed in with something before he goes to

bed to get him through the night. I believe your son is too young

for the cornstarch. Before I started using the cornstarch, he would

wake up very cranky. I also tested his ketones in his urine on many

occasions and it showed that he was spilling ketones which is not

good.

F.

> > > I am a new mom and a new member. My son was born on 1-19-04 and

> he

> > > weighed 4 lbs 12 oz and was 15 " long. My pregnancy was normal,

> and

> > > the OB predicted an 8 lb baby! He was breech so the day after

my

> c-

> > > section the doc came in and told me that he had problems and

was

> > > handing my " case " over to a neonatologist. He suspected

> > > Achondroplasia, and told me that my son had " dysmorphic

> features "

> > > that needed to be looked at so he sent us to a genetic

> counseling

> > > session in March. She diagnosed probable -Silver and

> wants

> > us

> > > to come back in September. On top of the RSS, he was born with

> > > congenital hypothyroidism so we get blood work every month and

> see

> > > an endocrinologist. My pediatrician pulled out a book and

showed

> > > pictures of kids with RSS but doesn't seem very knowledgeable

on

> > the

> > > condition..are there specialists out there? I am having a hard

> > time

> > > coping with my son's problems and I would really appreciate any

> > > advice or insight you might have.

> > >

> > > Thanks so much-

> > > Mimi

April 29, 2004

Welcome to the list I am sure by now you have gotten some really good

responses but I wanted to say that this is such a great place for info and

support. My son is just over a year and was diagnosed around 4 months of age.

What state are you in? We are in Nebraska but seem to be the only ones

>

> Date: 2004/04/28 Wed PM 04:51:42 EDT

> To: RSS-Support

> Subject: New Mom

>

Mommy to Keigan 4-15-03 (RSS) and Tristian 9-26-01

April 29, 2004

Hi -

I am in Texas. Thanks for your response..I feel very welcomed!

> Welcome to the list I am sure by now you have gotten some

really good responses but I wanted to say that this is such a great

place for info and support. My son is just over a year and was

diagnosed around 4 months of age. What state are you in? We are in

Nebraska but seem to be the only ones

>

> >

> > From: " fairiegirl98 "

> > Date: 2004/04/28 Wed PM 04:51:42 EDT

> > To: RSS-Support

> > Subject: New Mom

> >

>

> Mommy to Keigan 4-15-03 (RSS) and Tristian 9-26-01

>

April 30, 2004

Dear Mimi,

I am so glad you found your way here in spite of my calling you 'Amy'

on the Parents of Little People listserve. I am sorry about that!

Several of us are in Texas. Where are you? I am in Garland, just

outside of Dallas. There are others on the list in Texas, too.

Conny, Great-aunt to

> > > I am a new mom and a new member. My son was born on 1-19-04 and

> he

> > > weighed 4 lbs 12 oz and was 15 " long. My pregnancy was normal,

> and

> > > the OB predicted an 8 lb baby! He was breech so the day after

my

> c-

> > > section the doc came in and told me that he had problems and

was

> > > handing my " case " over to a neonatologist. He suspected

> > > Achondroplasia, and told me that my son had " dysmorphic

> features "

> > > that needed to be looked at so he sent us to a genetic

> counseling

> > > session in March. She diagnosed probable -Silver and

> wants

> > us

> > > to come back in September. On top of the RSS, he was born with

> > > congenital hypothyroidism so we get blood work every month and

> see

> > > an endocrinologist. My pediatrician pulled out a book and

showed

> > > pictures of kids with RSS but doesn't seem very knowledgeable

on

> > the

> > > condition..are there specialists out there? I am having a hard

> > time

> > > coping with my son's problems and I would really appreciate any

> > > advice or insight you might have.

> > >

> > > Thanks so much-

> > > Mimi

April 30, 2004

I am in Watauga (mid-cites area). Thanks for showing me this great

list!

Mimi, mom to Isaac (probable RSS)

> > > > I am a new mom and a new member. My son was born on 1-19-04

and

> > he

> > > > weighed 4 lbs 12 oz and was 15 " long. My pregnancy was

normal,

> > and

> > > > the OB predicted an 8 lb baby! He was breech so the day

after

> my

> > c-

> > > > section the doc came in and told me that he had problems and

> was

> > > > handing my " case " over to a neonatologist. He suspected

> > > > Achondroplasia, and told me that my son had " dysmorphic

> > features "

> > > > that needed to be looked at so he sent us to a genetic

> > counseling

> > > > session in March. She diagnosed probable -Silver and

> > wants

> > > us

> > > > to come back in September. On top of the RSS, he was born

with

> > > > congenital hypothyroidism so we get blood work every month

and

> > see

> > > > an endocrinologist. My pediatrician pulled out a book and

> showed

> > > > pictures of kids with RSS but doesn't seem very

knowledgeable

> on

> > > the

> > > > condition..are there specialists out there? I am having a

hard

> > > time

> > > > coping with my son's problems and I would really appreciate

any

> > > > advice or insight you might have.

> > > >

> > > > Thanks so much-

> > > > Mimi

April 30, 2004

Mimi,

Glad to get your note. Hypoglycemia signs can include, lethargy,

excessive sweating, crankiness. My son, never had excessive

sweating, but was still hypoglycemic. One way to test is to use a

glucose monitor (like a diabetic would use). To be honest we rarely

use one unless our son is sick. We just never allow him to go more

than 3 hours without eating. There are also ketone sticks you can

buy at your local pharmacy. They test the urine and tell you if

your son is on his way to having low blood sugar. If a child is

sick (vomitting, diarrhea) please know hypoglycemia can hit much

quicker and be difficult to control.

To be on the safe side I would feed your son every three hours

during the night. I know this is tough, when all you want is some

sleep being a new mom. We can all relate. It is tough. But, this

extra feeding or two is so important, and hey a couple of extra

calories can only help. Older children can have cornstarch to their

bottle to allow them to go a little longer between feeds, but your

son is too young for that right now.

I would definitely urge you to join the Magic Foundation. For a

nominal fee ($30, I believe) it is a lifesaver. Then you will have

access to additional information (RSS growth charts, newslettersm,

medical journal articles and fabulous brochures....there is one that

is a must have for parents since it outlines how to handle a sick

RSS baby). Without Magic we would never, ever be as informed as we

are now. I can't imagine where our son would be without the

foundation.

Also, there is an annual convention in July where you can get a free

consultation with Dr. Harbison. There are many families who

fundraise to get there. And sometimes there are scholarships

available through the foundation (I am not sure if there are any

left).

Here is the contact information for Early Intervention in your state:

Beth O'Hanlon, Executive Director

Texas Early Childhood Intervention Program

Department of Assistive and Rehabilitative Services

Brown-Heatly State Office Building

4900 North Lamar

Austin, TX 78751-2399

Phone:

Fax:

Email: marybeth.ohanlon@...

Website: http://www.eci.state.tx.us/

Keep posting and let me know if you have additional questions,

Alison

October 8, 2005

Congrats on the baby. My son is 14 months old and just got out of casts for a

relapse. So, I know very well how they don't like the casts the first couple

days. He was almost walking, then he could barely crawl. After a couple days

he picked it up again. He is know back in the shoes with a bar. (DBB) He can

stand and walk with assistance in these. Just wanted to give you reassurance

that everything will progress normally if you have a good Dr. My sons feet look

so straight now. I had a very hard time at first and would cry along with him

at every cast change. I wish you and your son the best.

Tabitha

mom to Karter 7-30-04

sluster90504 wrote:

My baby () is 1 month old today and he has club feet. He gets

his second cast on Monday. The last one was so difficult. He hates

when he can't move around when he wants to, so having his legs messed

with and held still made him very upset. Of course I was in tears

because I thought for sure that it was hurting him and I just wanted

to hold and love him and make him feel better. I am so afraid that

this is not going to work and he won't be able to walk. He is getting

more used to his cast though. The first day was really hard because

he always slept with his feet stacked on top of each other on top of

his diaper. He got really upset every time he would try to get his

legs into that position again. I am hoping to find support here and

figure out how I can make him the most comfortable as well. Thanks

October 8, 2005

Congrats to you and the family. I have a 15 week old son, who began

treatment at 10 days old. I know how hard it is on you right now. Be patient

and its okay to cry over all of this because you are being a great mom to him

and getting this condition under control early. It is very hard to go through

the process and know your baby is hurting, uncomfortable, and there is not a

whole lot we can do for them but just cuddle and love as much as possible. It

will get better. was treated using the Ponseti method and suffered a

relaspe recently due to our Doctor rushing him through the process. He really

wasn't quite corrected when they attempted his first brace and shoes. Best

advice, research and ask questions. Let the doctors know you are watching their

every move. If it wasn't for us asking questions and talking to people on the

site my son would be under the care of the physician who was doing us know

favors. I took as far as emailing Dr. Ponseti himself who

called and asked us to bring our son to him for treatment. We are in Arkansas

and Iowa was a long trip but well worth it. Please feel free to email me

directly and we can talk anytime. We are here for you.

Mom to (BL CF 6-11-05) cast for relapse

Yarolim wrote: