we are new persons

February 23, 2004

Hello to all.

We are new persons in this group,so please forgiwe us some mistakes,

particularly in English, because it is not our mother tongue.

We are a youg couple from Poland.we hawe two children ,one 5 years healthy

daughter Marta and a baby daughter Agata, born on 7 October 2003.Agata was born

with a Silver- Syndrome.

She was born full term and with the normal head size but with small rest of the

body.Her weight at birth was 1kilogram and 850 grams (4,1 lb ) and her height

was 44 cm. Now she weighs 2 kilograms and 850 grams ( 6,3 lb ) and is 51

cm.long.

Her right site of the body is underdeveloped ,the right leg is 2.5 cm. shorter

then the left one.

The information we can find here in Poland about RSS is slance, even amongst

the medical circles.We wer with our daughter at the best Polish hospital in

Warsaw. Unfortunetly ,none of the doctors we were talking to ,has never seen a

child with RSS.They know a little about such disase only from the medical

books.They didn`t tell us how much Agata should eat and how quickly she ought to

grow up.

Agata eats Humana nutrient by dummy.She eats very unwillingly about o.4 litre (

it is about 400 kcal) during day and night (24 hours). Despite this she hasn`t

put on weight any gram for a month. She is almost five months old but she can`t

keep her head herself. We don`t know whether it is normal among children with

RSS - our doctors don`t know the answer to that.They say only that we must wait.

But we don`t want to miss a moment when our daughter will expect necessary help.

Agata perspires very much every night. Our doctors tell us not to worry and

that it can`t be hipoglikemy at Agata`s age. We have read in MAGIC something

different ! So , we still don`t know what to do !

We apply to you for help because you know children with RSS the best. We would

like to know how much should Agata eat and what, how quickly should she grow up

, what do you think about taking drugs,did your cildren take any etc.etc.

We have so many questions.... Please forgive us , but as we wrote , we are not

able to get real help in our country in Poland. And of course we don`t have any

experiences to share it with other people.But we hope that in the future we also

will be helpful for the group.

Yours faithfully

Witold & Dorota

February 23, 2004

Witold & Dorota

You have found the right place, welcome. Your English does not

inhibit your ability to communicate Agata's needs. Our information

comes from experiences with our son Grant as well as from material

available from the " Magic Foundation " which can be found on the Web

at http://magicfoundation.org/ . My wife and I have three children,

the third has RSS, we remember well the difficulties we experienced

trying to understand Grant. Though you may not feel it right now

you are indeed fortunate that Agata has been diagnosed at a young

age, Grant was 26 months old before we heard of RSS. The Magic

Foundation has a list of pertinent articles which would be extremely

valuable to you. Two in particular would be articles number H-43

which contains a list of general recommendations and article H-26

which discusses the topic of nocturnal hypoglycemia, both are

written by Dr. Madeleine Harbison, pediatric endocrinologist at New

York Presbyterian Hosp.. I'll summarize a few points now because it

seems that Agata could be experiencing some hypoglycemic episodes.

From article H-43:

For an infant with RSS/SGA there are four goals

1. provide sufficient calories.

2. treat gut motility (reflux, delayed gastric emptying, slow small

bowel transit and constipation) if it is present.

3. prevent hypoglycemia.

4. provide age-appropriate activities and stimulation.

Children with gastrointestinal reflux often times need to be fed via

a gastrostomy tube as the feeding experience is uncomfortable to

them and the caloric goal is unobtainable.

Do not allow Agata to fast for more than 4 hours without and IV in

place, fasting is common protocol for various medical tests the IV

solution D10W is recommended as opposed to D5W.

To address you question of caloric intake:

A minimum of 130 but ideally 160 kcal/kg/day for caloric intake is

required for young RSS infants. Formula can be concentrated but may

increase reflux. This calculates out to 370-456 kcal/day at Agata's

current weight.

From article H-26:

Hypoglycemic episodes are common in RSS children, it is often

overlooked by even the most concerned physician.

This article pertains to the use of cornstarch to prevent nocturnal

hypoglycemia, according to the article children less than eight

months old do not have the enzymes required to breakdown

cornstarch, " Polycose " can be added to the nighttime feed to protect

against hypoglycemia. Sweating is an indication that Agata may be

experiencing a hypoglycemic episode.

_______

" Magic " has an RSS growth chart you can obtain.

Many of the RSS kids are on medication to ease the effects of

gastrointestinal reflux, either histamine H2 antagonist ( " Zantac " ),

or acid (proton) pump inhibitors ( " Prilocec " , " Prevacid " ).

I strongly encourage you to become members of the Magic Foundation.

The information thy have available far exceeds what you will find

anywhere else, it is also updated regularly. There is a yearly

conference in Chicago, Illinois, USA, in July where families gather

to become informed in the latest medical, educational and family

information. The membership fee is nominal by U.S. standards,

please let us know if it is too much or to difficult to transfer

funds, we would be willing to pay this years membership to get you

the information quicker.

I have no idea what the health care system is like in Poland but I

know numerous parents in the United States who have had to fight

long and hard to obtain the necessary care for their children. I

encourage you to become educated in the intricacies of RSS, as best

you can, you will likely always know more about Agata's condition,

needs and care than the doctors treating her.

Do you speak English?

Please be encouraged.

and Kim.

> Hello to all.

> We are new persons in this group,so please forgiwe us some

mistakes, particularly in English, because it is not our mother

tongue.

> We are a youg couple from Poland.we hawe two children ,one 5

years healthy daughter Marta and a baby daughter Agata, born on 7

October 2003.Agata was born with a Silver- Syndrome.

> She was born full term and with the normal head size but with

small rest of the body.Her weight at birth was 1kilogram and 850

grams (4,1 lb ) and her height was 44 cm. Now she weighs 2 kilograms

and 850 grams ( 6,3 lb ) and is 51 cm.long.

> Her right site of the body is underdeveloped ,the right leg is

2.5 cm. shorter then the left one.

> The information we can find here in Poland about RSS is slance,

even amongst the medical circles.We wer with our daughter at the

best Polish hospital in Warsaw. Unfortunetly ,none of the doctors we

were talking to ,has never seen a child with RSS.They know a little

about such disase only from the medical books.They didn`t tell us

how much Agata should eat and how quickly she ought to grow up.

> Agata eats Humana nutrient by dummy.She eats very unwillingly

about o.4 litre ( it is about 400 kcal) during day and night (24

hours). Despite this she hasn`t put on weight any gram for a month.

She is almost five months old but she can`t keep her head herself.

We don`t know whether it is normal among children with RSS - our

doctors don`t know the answer to that.They say only that we must

wait. But we don`t want to miss a moment when our daughter will

expect necessary help.

> Agata perspires very much every night. Our doctors tell us not

to worry and that it can`t be hipoglikemy at Agata`s age. We have

read in MAGIC something different ! So , we still don`t know what to

do !

> We apply to you for help because you know children with RSS the

best. We would like to know how much should Agata eat and what, how

quickly should she grow up , what do you think about taking

drugs,did your cildren take any etc.etc.

> We have so many questions.... Please forgive us , but as we

wrote , we are not able to get real help in our country in Poland.

And of course we don`t have any experiences to share it with other

people.But we hope that in the future we also will be helpful for

the group.

> Yours faithfully

> Witold & Dorota

>

February 23, 2004

Witold and Dorota -

Your Poland doctors are WRONG -- if she is sweating she is already

probably spilling ketones. It is very important that you feed her

every couple of hours during the night, EVEN if she is asleep. You

will have to wake her.

Second of all, congratulations on her birth!!!

I am going to contact an RSS family in Belgium, who has a foundation

there called ALICE -- for children with RSS. The mother speaks

multiple languages, and is much more familiar with doctors in

Europe, OK? Her name is Nojia Rosen, and I will send her your email

address. OH, I can't read your full address here.

Can you send me your email address privately to

magicrss@ mindspring.com?

I will get Nonjia to help you, OK? But to know that yes, it is

normal that your daughter can not hold her head up because her head

is so large compared to her body weight. Calories, calories,

calories. You have to get more calores in to her.

Does she show any signs of reflux (painful burning in the

esophogus?). Doe she drink a small amount and then arch her back,

or pull away and scream and cry? I hope you can understand my

English.

I am going to email Nonjia now, and please send me your full email

address, OK? Salem (volunteer for MAGIC, parent to

, age 8 yrs old with RSS)