Re: My son has just recently been diagnosed with RSS - new member

[Guest guest]

Hi Maeve,

Welcome to the RSS-Support list.

First, you are not alone. Many on this list have been through what you are now

going through. Some are in exactly the same situation as you. So feel free to

ask any question you want. I have often been told and I am constantly learning

that the only bad question is the one you don't ask.

If you go to the database section of the RSS-Support web page(

/database/RSS-Support ) you will see a small table of

children, birth weights, lengths, and current heights and weights. It is still

growing but it gives you some idea of where fits in. I think you will

see that a birth weight of 4lbs 4oz is about average for an RSS child.

Also, if you go to the links section you will find a link to the Magic

Foundation ( http://www.magicfoundation.org ). Click on the word divisions and

then on RSS. There you will find a very good description of RSS.

One thing to keep in mind. As far as science and medicine know, nothing you did

caused this. So far as any one knows 90% of the cases of RSS are undetermined.

In about 10% of the RSS cases the child gets 2 #7 chromosome from you (the

mother). This is called Uniparental Disomy #7 (UPD #7). Otherwise, like I said

there is no other know cause of RSS.

It was at about 28 weeks when the doctor noticed that my son was growing slowly.

So he ordered a high resolution ultrasound. The doctor who did that could not

get my son to respond to his prodding. So he immediately concluded severe brain

damage and ordered an immediate C section. So we rushed back to our ob/gyn who

said that conclusion was wrong. Instead our ob/gyn ordered daily monitoring for

2 weeks. So everyday for 2 weeks we drove 60 miles round trip to see the ob/gyn.

Each time my son's heartbeat was just fine. He moved frequently and everything

seemed fined except he wasn't growing. So at the 32 week, my wife had another

ultrasound which showed still no growth. An amnio was done to see if my son's

lungs were fully developed. The sample was taken and rushed by taxi across town

to the lab to get immediate analysis. The results were called back to the office

that my son's lungs were fine. Next there was some negotiation with the hospital

about admitting my wife for a c section. The hospital had a policy of no

emergency c sections. All such cases were to be transferred to downtown Boston.

But our ob/gyn was buddies with the admitting doctor and they snuck my wife in.

Since was small and not growing my wife's placenta was tested and it came

back normal. So we are in the unknown cause category of RSS.

was born 4 lbs 5 oz and 17 " long 1 month premature. He was in the hospital

for 21` days. Some of that time he had an NG tube. We finally got to take him

home after he showed he was growing slowly. When he was about a year old he

dropped from the 10th percentile to the 3rd. We were sent to Children's Hospital

in Boston where the pediatric endocrinologist took one look at him (literally)

and said " Have you ever heard of Silver Syndrome? " We of course then had

all kinds of blood tests done and genetic testing to rule out all other

possibilities. When no other cause could be found we were left with a diagnosis

of RSS.

Like , is a happy healthy growing ( slowly) 3 1/2 year old boy. He

is given periactin to help stimulate his appetite. Soon we may be starting

growth hormone.

Others on this list have RSS children who require feeding tubes. They can give

you more info about why that might be necessary. Also, many children receive

growth hormone. Some do not think that growth hormone is appropriate for their

child. You can get advice about what may be best for about this issue

also.

Last there are 2 other lists you may want to consider. The first I highly

recommend is the Magic List. It is composed of people with children who have all

kinds of growth problems and not just RSS. They have been a big help to me also.

The second and one that I have some issues with is called RSS-Solutions. It is

made of parents who are seeking alternatives causes and cures of RSS. My opinion

is that a few are a little too radical for my taste but you may want to check

them out.

I apologize for the long reply. I am usually much more brief.

I hope this helps.

Ken M

[Guest guest]

Hi Maeve,

Welcome to this list. For myself, finding it was a godsend. My son

was diagnosed when he was 13 month old (he is now 20 mos.),

and I went through all of the feelings you are feeling (and still

do!) I worried about what the future will hold for (and

still do.)

But this group is great for support and information. And I am coming

to realize that being " small " is not so bad in the spectrum of

things. We are lucky in that doesn't really have any other

medical issues besides not eating well and being small. You will

find by reading the posts here, that there is quite a spectrum of RSS.

When I first found this site, I obsessively read all the past posts --

not that I recommend that ) but there is a lot of info packed in

there.

Just wanted to say we know how you are feeling and you are definitely

not alone!

Sandy - Mom to - 20 mos 18lbs 10 oz, 30 "

[Guest guest]

Hi Maeve,

As you can see from the replies, I hope it is a bit reassuring to

know that you are certainly not alone. Without going through all the

long details, in my case with my daughter, a, the ob/gyn team

of doctors did notice that at the end of my pregnancy the baby was

small for gestational age. I was given non-stress tests and so on.

Unfortunately, my daughter went into fetal distress during labor and

complications occured during the emergency-c and she was later placed

on heart/lung bypass(ECMO)life support 3hrs. after delivery. It was

then, after delivery that my placenta was sent to the lab and

detected to be insufficient due to infarctions. Because of all the

other things that we had to rule out due to her medical needs, we did

not conclude with an RSS diagnosis until this past summer when

a was over 3 years old. I would wonder how many others had

placental insufficiency? Even though I haven't responded often to

the list, I am always reading the posts and gain a great feeling of

support from just knowing that everyone is going through many of the

same issues that we are going through or even have already been

through. The beginning is very rough, but it certainly does get

better!

Sincerely,

Diane (mom to a, 3 yrs. 9 mos.,RSS & , 6)

[Guest guest]

Hi Maeve,

As you can see from the replies, I hope it is a bit reassuring to

know that you are certainly not alone. Without going through all the

long details, in my case with my daughter, a, the ob/gyn team

of doctors did notice that at the end of my pregnancy the baby was

small for gestational age. I was given non-stress tests and so on.

Unfortunately, my daughter went into fetal distress during labor and

complications occured during the emergency-c and she was later placed

on heart/lung bypass(ECMO)life support 3hrs. after delivery. It was

then, after delivery that my placenta was sent to the lab and

detected to be insufficient due to infarctions. Because of all the

other things that we had to rule out due to her medical needs, we did

not conclude with an RSS diagnosis until this past summer when

a was over 3 years old. I would wonder how many others had

placental insufficiency? Even though I haven't responded often to

the list, I am always reading the posts and gain a great feeling of

support from just knowing that everyone is going through many of the

same issues that we are going through or even have already been

through. The beginning is very rough, but it certainly does get

better!

Sincerely,

Diane (mom to a, 3 yrs. 9 mos.,RSS & , 6)

[Guest guest]

Hi Maeve

My name is Debby and I live in Toronto, Canada. My son, Adam is 8 years old and

diagnosed

with RSS (around the age of 2 we got the diagnosis)--gee I sound like an AA

meeting!! LOL

YOU ARE NOT ALONE!!! My goodness, the fear, the tears, the uncertainty, the

pain. I know it,

and we all do here, as we've been through it. It is not easy dealing with all

this

information. And yes, " it " could be worse (and people WILL tell you--at least he

doesn't

have ***...but, right now, you feel like your world is upside down and this is

WORSE!! So

please, take it from someone who goes through these emotions at regular

intervals, it is OK

to want to scream " why me? why my beautiful son? " You need to feel it

all.....forget that

others think things " could be worse " !!

As grows and you see and feel his joy and his love he will become the

most precious

thing to you. Our kids seem to have a special " something " (I'm not sure what it

is--maybe we

want to protect them from the world or we worry so much that they become that

much more

special?? I'm not sure.) I have an 11 year old, tall, smart wonderful daughter

but my son

has a special pull on my heart strings. And will be the same. They are

special. Some

days I see Adam and all the RSS " stuff " and his problems at school as a gift.

(sometimes I

could scream!! don't get me wrong!!) but he is extra unique and he was sent to

me for a

reason.

Oh I am rambling on here. I'm sorry. But you need to go through all the emotions

as they

come and know we have all been there (and we visit them again and again). I just

recently

started giving Adam nightly growth hormone needles and I was back into my old

" why us? " and

" this isn't fair " and all the guilt and pain that happened back in the

beginning. In a way,

we grieve our notion of the " perfect " child. Our RSS children will grow up, they

won't die,

they will lead " normal " lives but still there is SOMETHING wrong, and we grieve

that. So all

the stages of grief (denial, anger etc etc) we have to go through. I just hope

you have a

wonderful support system for you as you travel along that road.

Now on to your question. Many of us had different experiences with our

pregnancies. Just a

week or so ago, we were trying to see if we had a pattern, because a lot of the

mom's had

had problems getting pregnant and had IV methods to aid in getting pregnant.

But, there were

many of us (me included) that had no problems getting pregnant. Some of the

babies were

preemies and some were at the right gestational age for birth. My son was

labeled small for

dates. He was born at 38 weeks (same as my daughter) but was tiny. Now, where

you and I have

a tiny similarity is that I had bleeding at 32 weeks of pregnancy and it was

" assumed " there

were problems with the placenta and that is why the baby didn't grow any bigger

than he was

at 32 weeks. Of course no one thought to tell me to stop working (after a brief

hospital

stay) or to " take it easy " --and so I wonder there. I demanded after Adam was

born that the

placenta be checked for something but my doctor said a small tear that was

undetectable to

them, could have caused lack of nutrition to the body. You see after a certain

point in the

pregnancy most of the nutrition the mom supplies goes to brain development and

some to the

body to increase size/weight. Now the doctors told me since a restricted amount

of nutrition

was getting into the baby it all went to brain development (nature's way) and

none to weight

gain.

So I was just told he was small for that reason and would " catch up " . He did,

for a spell,

but around 6-9 months his gains leveled off. So it wasn't until 2 years that the

doctors

became concerned and here we are today.

I know this is long--so sorry. One last thing--have you checked out

www.magicfoundation.com

yet?? They are a non profit organization with a list serve (like this) that have

wonderful

information on a variety of growth disorders. You should consider joining. There

is a small

fee, but they are a fantastic source of information. Also, being here, with us,

will help

you tremendously.

Glad to have you here. Please feel free to ask any question you want. We have

all been there

and some of us are still there (!!!). I can't answer your questions about

feeding tubes, as

Adam never had one, but Jodi and some others are well versed in that area.

Please write often and lean on us for support. That's why we are here.

Debby

Maeve.McEvoy@... wrote:

> My name is Maeve Mc Evoy and my son (our first child) has

> just recently been diagnosed with RSS ( celebrated his first

> birthday last Saturday 13th)

> Last Christmas at app. 29 weeks pregnant I became very sick. My

> gynaecologist established that wasn't growing and hadn't got

> any bigger from the previous scan 4 weeks earlier. I was sent for an

> amniocentesis and dopler tests to establish if wasn't growing

> because of congenital abnormalities or placental problems. The amnio

> was clear and the dopler test was in reverse so we were all relieved

> that the problem was placental and was delivered by emergency

> cs at 30 weeks weiging 1lb14oz. As far as everyone was concerned

> 's tiny size was due to placental insuffieiency and in time he

> would catch up.

> was in neo-natal care for 10 weeks (came home at 4lb 4oz)and

> began with tube feeding etc. After 5 weeks (I knew nothing about

> centile lines) the paediatrician called me in to discuss the

> possibility of RSS because was failing to show catch-up

> growth on the centile lines. I was shocked because I thought

> everything was related to placental insufficiency as tests showed

> that part of my placenta had died. 5 days later the geneticist

> examined and was 99% sure he hadn't got rss. We were all very

> relieved.

> After a further checkup with the geneticist several months later she

> was less certain and finally was diagnosed in October past.

> It has been a very traumatic year with feeding problems, hospital

> visits etc and I suppose I am devasted that is now labelled

> as having a 'syndrome'. I just need to talk to someone who

> understands what we are going through.

> is a wonderful child, very bright and active and I know

> things could be so much worse for him but I am worried about what

> lies ahead and if his feeding problems etc will improve with time.

> Sorry this letter is so long - I just want someone to say I know what

> you're going through and you're not alone.

> PS Has anyone had a similar experience to ours? Is there a link

> between RSS and placental insufficiency?

> Maeve Mc Evoy

> Maeve.McEvoy@...

[Guest guest]

Hi Maeve

My name is Debby and I live in Toronto, Canada. My son, Adam is 8 years old and

diagnosed

with RSS (around the age of 2 we got the diagnosis)--gee I sound like an AA

meeting!! LOL

YOU ARE NOT ALONE!!! My goodness, the fear, the tears, the uncertainty, the

pain. I know it,

and we all do here, as we've been through it. It is not easy dealing with all

this

information. And yes, " it " could be worse (and people WILL tell you--at least he

doesn't

have ***...but, right now, you feel like your world is upside down and this is

WORSE!! So

please, take it from someone who goes through these emotions at regular

intervals, it is OK

to want to scream " why me? why my beautiful son? " You need to feel it

all.....forget that

others think things " could be worse " !!

As grows and you see and feel his joy and his love he will become the

most precious

thing to you. Our kids seem to have a special " something " (I'm not sure what it

is--maybe we

want to protect them from the world or we worry so much that they become that

much more

special?? I'm not sure.) I have an 11 year old, tall, smart wonderful daughter

but my son

has a special pull on my heart strings. And will be the same. They are

special. Some

days I see Adam and all the RSS " stuff " and his problems at school as a gift.

(sometimes I

could scream!! don't get me wrong!!) but he is extra unique and he was sent to

me for a

reason.

Oh I am rambling on here. I'm sorry. But you need to go through all the emotions

as they

come and know we have all been there (and we visit them again and again). I just

recently

started giving Adam nightly growth hormone needles and I was back into my old

" why us? " and

" this isn't fair " and all the guilt and pain that happened back in the

beginning. In a way,

we grieve our notion of the " perfect " child. Our RSS children will grow up, they

won't die,

they will lead " normal " lives but still there is SOMETHING wrong, and we grieve

that. So all

the stages of grief (denial, anger etc etc) we have to go through. I just hope

you have a

wonderful support system for you as you travel along that road.

Now on to your question. Many of us had different experiences with our

pregnancies. Just a

week or so ago, we were trying to see if we had a pattern, because a lot of the

mom's had

had problems getting pregnant and had IV methods to aid in getting pregnant.

But, there were

many of us (me included) that had no problems getting pregnant. Some of the

babies were

preemies and some were at the right gestational age for birth. My son was

labeled small for

dates. He was born at 38 weeks (same as my daughter) but was tiny. Now, where

you and I have

a tiny similarity is that I had bleeding at 32 weeks of pregnancy and it was

" assumed " there

were problems with the placenta and that is why the baby didn't grow any bigger

than he was

at 32 weeks. Of course no one thought to tell me to stop working (after a brief

hospital

stay) or to " take it easy " --and so I wonder there. I demanded after Adam was

born that the

placenta be checked for something but my doctor said a small tear that was

undetectable to

them, could have caused lack of nutrition to the body. You see after a certain

point in the

pregnancy most of the nutrition the mom supplies goes to brain development and

some to the

body to increase size/weight. Now the doctors told me since a restricted amount

of nutrition

was getting into the baby it all went to brain development (nature's way) and

none to weight

gain.

So I was just told he was small for that reason and would " catch up " . He did,

for a spell,

but around 6-9 months his gains leveled off. So it wasn't until 2 years that the

doctors

became concerned and here we are today.

I know this is long--so sorry. One last thing--have you checked out

www.magicfoundation.com

yet?? They are a non profit organization with a list serve (like this) that have

wonderful

information on a variety of growth disorders. You should consider joining. There

is a small

fee, but they are a fantastic source of information. Also, being here, with us,

will help

you tremendously.

Glad to have you here. Please feel free to ask any question you want. We have

all been there

and some of us are still there (!!!). I can't answer your questions about

feeding tubes, as

Adam never had one, but Jodi and some others are well versed in that area.

Please write often and lean on us for support. That's why we are here.

Debby

Maeve.McEvoy@... wrote:

> My name is Maeve Mc Evoy and my son (our first child) has

> just recently been diagnosed with RSS ( celebrated his first

> birthday last Saturday 13th)

> Last Christmas at app. 29 weeks pregnant I became very sick. My

> gynaecologist established that wasn't growing and hadn't got

> any bigger from the previous scan 4 weeks earlier. I was sent for an

> amniocentesis and dopler tests to establish if wasn't growing

> because of congenital abnormalities or placental problems. The amnio

> was clear and the dopler test was in reverse so we were all relieved

> that the problem was placental and was delivered by emergency

> cs at 30 weeks weiging 1lb14oz. As far as everyone was concerned

> 's tiny size was due to placental insuffieiency and in time he

> would catch up.

> was in neo-natal care for 10 weeks (came home at 4lb 4oz)and

> began with tube feeding etc. After 5 weeks (I knew nothing about

> centile lines) the paediatrician called me in to discuss the

> possibility of RSS because was failing to show catch-up

> growth on the centile lines. I was shocked because I thought

> everything was related to placental insufficiency as tests showed

> that part of my placenta had died. 5 days later the geneticist

> examined and was 99% sure he hadn't got rss. We were all very

> relieved.

> After a further checkup with the geneticist several months later she

> was less certain and finally was diagnosed in October past.

> It has been a very traumatic year with feeding problems, hospital

> visits etc and I suppose I am devasted that is now labelled

> as having a 'syndrome'. I just need to talk to someone who

> understands what we are going through.

> is a wonderful child, very bright and active and I know

> things could be so much worse for him but I am worried about what

> lies ahead and if his feeding problems etc will improve with time.

> Sorry this letter is so long - I just want someone to say I know what

> you're going through and you're not alone.

> PS Has anyone had a similar experience to ours? Is there a link

> between RSS and placental insufficiency?

> Maeve Mc Evoy

> Maeve.McEvoy@...

[Guest guest]

Maeve,

So many people responded to your email that I just did not want to overwhelm

you with saying the same things as they have said. But then I was reading

Debby's reply to you and I saw my name mentioned, so I thought I should

introduce myself.

I am the " famous " Jodi - mom of 12 1/2 year old Maxwell (RSS) and 15 year

old Jenna (no RSS, but a big mouth for a typical teenager-said with lots of

love .) Max, bless his heart, has had just about all he could have. In

particular interest to you would be the feeding tube part. Max had one for

11 years. That is unusual for RSS kids, but then again, that is hard to say

because Max is among the oldest of the RSS kids that we talk about and have

followed closely since birth.

The one thing I want to assure you of is that WILL eat eventually.

I can guarantee you that. It will take a long time, but he will get there.

Your number one priority is to help him gain weight and get the nutrition he

needs. The rest will come along. I promise.

At one year of age, is a bit young, but there is a medication called

Periactin (cyproheptadine) that is an antihistamine that has a side effect

of increasing appetite. Many RSS kids take it to help increase their

appetites and help them gain weight/grow. The success of it seems to be

greater if the child is a bit older, like closer to two years old. But that

is between you and your doctor.

If you ever have any questions that I can help you with, please email me

directly at z4all@... or via the egroups list. I am very open about

our experiences. My husband and I believe that it is rotten that Max has

RSS, but in the scheme of things, it is not terrible and we are weathering

the " storm " pretty well. We have been open and honest with family and

strangers because we do not want Max to ever feel uncomfortable or

embarassed and feel as if he has to keep a secret or feel that there is

something " wrong " with him. He just needs a bit more medical attention than

most. Okay, a lot more, but we don't need to get into that right now.

In the meantime, hug your baby boy, enjoy him and just give time a chance to

help you adjust and deal with things. Educate yourself, yell and scream via

this group and you all will be okay. P.S. We love to hear good things as

well as bad!

Jodi

[Guest guest]

Maeve,

So many people responded to your email that I just did not want to overwhelm

you with saying the same things as they have said. But then I was reading

Debby's reply to you and I saw my name mentioned, so I thought I should

introduce myself.

I am the " famous " Jodi - mom of 12 1/2 year old Maxwell (RSS) and 15 year

old Jenna (no RSS, but a big mouth for a typical teenager-said with lots of

love .) Max, bless his heart, has had just about all he could have. In

particular interest to you would be the feeding tube part. Max had one for

11 years. That is unusual for RSS kids, but then again, that is hard to say

because Max is among the oldest of the RSS kids that we talk about and have

followed closely since birth.

The one thing I want to assure you of is that WILL eat eventually.

I can guarantee you that. It will take a long time, but he will get there.

Your number one priority is to help him gain weight and get the nutrition he

needs. The rest will come along. I promise.

At one year of age, is a bit young, but there is a medication called

Periactin (cyproheptadine) that is an antihistamine that has a side effect

of increasing appetite. Many RSS kids take it to help increase their

appetites and help them gain weight/grow. The success of it seems to be

greater if the child is a bit older, like closer to two years old. But that

is between you and your doctor.

If you ever have any questions that I can help you with, please email me

directly at z4all@... or via the egroups list. I am very open about

our experiences. My husband and I believe that it is rotten that Max has

RSS, but in the scheme of things, it is not terrible and we are weathering

the " storm " pretty well. We have been open and honest with family and

strangers because we do not want Max to ever feel uncomfortable or

embarassed and feel as if he has to keep a secret or feel that there is

something " wrong " with him. He just needs a bit more medical attention than

most. Okay, a lot more, but we don't need to get into that right now.

In the meantime, hug your baby boy, enjoy him and just give time a chance to

help you adjust and deal with things. Educate yourself, yell and scream via

this group and you all will be okay. P.S. We love to hear good things as

well as bad!

Jodi