Re: new SGA infant

[Guest guest]

Hello - welcome,

My little girl was 3 pounds 10 at birth, she is now 1. Her head circumference

has always been 50th percentile, weight and length well below the normal graphs

- we have recently found her length was always on the RSS curve (graphs from

MAGIC).

May I ask why -Silver has been ruled out, perhaps her head circumference

is also below the graph?

How old is she now? My little girl still has max of 90mls (3 ozs) at each feed

and when she wasn't eating solids (at 5 months) was only having about 12 oz

infatrini (1 cal per ml) per day. We used a squeezy bottle and this way were

able to give her milk even when she wasn't hungry - not a miracle cure, it was

still hard work, but it helped. You need to make sure her swallowing is all

working OK first though, I heard of one boy's family using an NT (nasal feeding)

tube who found it was going into his lungs and causing recurrent bronchitus -

(that little boy had Pierre Robin syndrome affecting his swallowing).

Calories up to age 1 are by far the main thing known to impact weight and height

of children who have no other known factors influencing growth.

In my daughter's case everything improved once we started her on solids -

although this is not always the case.

Best wishes, Gillian

karenzaritsky wrote:

Hi

I am new to the group. My daughter is SGA- born weughing 3 pounds 14

ounces with head and length also well below 3rd percentile. She

doesn't seem to have russell silver syndrome but it has been

impossible to get her to eat since she was born. Is SGA similar to

RSS, are the issues similar? She is now almost 4 months and I have

difficulty getting her to eat. She is just on 3rd percentile on the

height for weight curve. She is 22 height-3rd percent and 9 pounds 6

ounces- below 3rd percent. She is on reglan, pepcid and prevacid for

reflux. But I don't know what to do because she is now eating less

than she used to. The most she has eaten is 18 ounces ina day on

24kcal/ounce. The only way I can get her to eat is in a sleepy state.

She will only eat about 40ml when fully awake. But now she is

starting to refuse to eat when sleeepy as well. Is this similar to

experiences other people have had? Does anyone know doctors in the

Los Angeles region who knows how to deal with this? Her growth is

starting to level off. She never demands for food. I currently feeed

her every 4 hours and it takes an hour to get her to take anything.

Does anyone have some advice for me. She is getting a gastric empting

study tommorrow. My pediatrician said that she doesn't think giving

her more calories will make her grow any better- this doesn't sound

right to me. My pediatrician said that she will have growth spurts so

it is ok for her not to gain good weight occasionally and that she may

improve as she get older. But her eating seems to be worsening. Does

anyone have some advice?

Thanks,

[Guest guest]

Hi . Glad you came to our group. If your daughter is SGA, you

have found the right place! ) This group is dedicated to parents

of children who have RSS OR SGA! RSS and SGA are very similiar. It

is just that SGA children may not have all the characteristics of an

RSS child, but they are typically treated in the same way. Others

will post on here and share more with you, but I wanted to welcome

you to the group and tell you that you have found a wealth of

information here. All these people are great. Also, look up the

MAGIC Foundation. www.magicfoundation.org. They are wonderful too

and have so much information for you to look through.

Talk to you soon,

Jodi R.

, RSS, 3, 24 lbs.

> Hi

> I am new to the group. My daughter is SGA- born weughing 3 pounds

14

> ounces with head and length also well below 3rd percentile. She

> doesn't seem to have russell silver syndrome but it has been

> impossible to get her to eat since she was born. Is SGA similar to

> RSS, are the issues similar? She is now almost 4 months and I have

> difficulty getting her to eat. She is just on 3rd percentile on the

> height for weight curve. She is 22 height-3rd percent and 9 pounds

6

> ounces- below 3rd percent. She is on reglan, pepcid and prevacid

for

> reflux. But I don't know what to do because she is now eating less

> than she used to. The most she has eaten is 18 ounces ina day on

> 24kcal/ounce. The only way I can get her to eat is in a sleepy

state.

> She will only eat about 40ml when fully awake. But now she is

> starting to refuse to eat when sleeepy as well. Is this similar to

> experiences other people have had? Does anyone know doctors in the

> Los Angeles region who knows how to deal with this? Her growth is

> starting to level off. She never demands for food. I currently

feeed

> her every 4 hours and it takes an hour to get her to take anything.

> Does anyone have some advice for me. She is getting a gastric

empting

> study tommorrow. My pediatrician said that she doesn't think giving

> her more calories will make her grow any better- this doesn't sound

> right to me. My pediatrician said that she will have growth spurts

so

> it is ok for her not to gain good weight occasionally and that she

may

> improve as she get older. But her eating seems to be worsening.

Does

> anyone have some advice?

> Thanks,

[Guest guest]

,

My son wasn't diagnosed with Silver Syndrome until he was about 5

months old. We had actually been ng-tube feeding him, and when they tried

150kcal/kg/day, he would vomit and poop the previous meal, so we were able

to go back to 130 when we got the diagnosis (since his body has a form of

dwarfism, he couldn't use the extra cals before giving him growth hormone).

The thing that decided it was noticing that one leg was much thinner than

the other. The geneticist hesitated to give this diagnosis at first

because she hadn't noticed the assymetry (I had to point it out) and

because there is no definite genetic test for RSS so she wanted to be very

sure before calling it this.

My son was 3 pounds 5 ounces taken 1 week before my due date (and we knew

exactly when I got pregnant!). He only weighed 10 pounds at 1 year. Now

with growth hormone and a feeding tube along with a fundoplacation which

keeps him from reluxing/vomiting, he has actually gotten chunky and grown

quite a bit. Many of the treatments are the same for RSS and SGA, so I

think you may want to look into them. One is Periactin for appetite or

tube feedings. Another is growth hormone. And now Lupron to delay

premature puberty. Our son is an extremely intelligent 10 year old now -

he actually tested at college level for social sciences! So don't ever

give up hope!

Inga

At 06:34 AM 10/5/2005 +0000, you wrote:

>Hi

>I am new to the group. My daughter is SGA- born weughing 3 pounds 14

>ounces with head and length also well below 3rd percentile. She

>doesn't seem to have russell silver syndrome but it has been

>impossible to get her to eat since she was born. Is SGA similar to

>RSS, are the issues similar? She is now almost 4 months and I have

>difficulty getting her to eat. She is just on 3rd percentile on the

>height for weight curve. She is 22 height-3rd percent and 9 pounds 6

>ounces- below 3rd percent. She is on reglan, pepcid and prevacid for

>reflux. But I don't know what to do because she is now eating less

>than she used to. The most she has eaten is 18 ounces ina day on

>24kcal/ounce. The only way I can get her to eat is in a sleepy state.

> She will only eat about 40ml when fully awake. But now she is

>starting to refuse to eat when sleeepy as well. Is this similar to

>experiences other people have had? Does anyone know doctors in the

>Los Angeles region who knows how to deal with this? Her growth is

>starting to level off. She never demands for food. I currently feeed

>her every 4 hours and it takes an hour to get her to take anything.

>Does anyone have some advice for me. She is getting a gastric empting

>study tommorrow. My pediatrician said that she doesn't think giving

>her more calories will make her grow any better- this doesn't sound

>right to me. My pediatrician said that she will have growth spurts so

>it is ok for her not to gain good weight occasionally and that she may

>improve as she get older. But her eating seems to be worsening. Does

>anyone have some advice?

>Thanks,

>

>

>

>

>

>

>

[Guest guest]

Hi!

I have an SGA daughter, Emerence, 31 mo 32 " 22lb, who has a lot of

RSS characteristics (about 10) just all very mild. RSS kids are SGA

and just have a few extra characteristics is my understanding. It

took my daughter forever to eat her bottle (all 1.5 - 2 ozs) and she

ate frequently. Emerence has never even been on the growth curve

until recently when she hit for height. This is the best place for

you!!! Everyone is very helpful so I'm sure you are already getting

great advice! If you haven't heard yet, join the MAGIC foundation

and mark your calendar for the annual convention next July in Chicago

and you can meet 125+ other families who " get it " .

Take care!

> Hi

> I am new to the group. My daughter is SGA- born weughing 3 pounds

14

> ounces with head and length also well below 3rd percentile. She

> doesn't seem to have russell silver syndrome but it has been

> impossible to get her to eat since she was born. Is SGA similar to

> RSS, are the issues similar? She is now almost 4 months and I have

> difficulty getting her to eat. She is just on 3rd percentile on the

> height for weight curve. She is 22 height-3rd percent and 9 pounds

6

> ounces- below 3rd percent. She is on reglan, pepcid and prevacid

for

> reflux. But I don't know what to do because she is now eating less

> than she used to. The most she has eaten is 18 ounces ina day on

> 24kcal/ounce. The only way I can get her to eat is in a sleepy

state.

> She will only eat about 40ml when fully awake. But now she is

> starting to refuse to eat when sleeepy as well. Is this similar to

> experiences other people have had? Does anyone know doctors in the

> Los Angeles region who knows how to deal with this? Her growth is

> starting to level off. She never demands for food. I currently

feeed

> her every 4 hours and it takes an hour to get her to take anything.

> Does anyone have some advice for me. She is getting a gastric

empting

> study tommorrow. My pediatrician said that she doesn't think giving

> her more calories will make her grow any better- this doesn't sound

> right to me. My pediatrician said that she will have growth spurts

so

> it is ok for her not to gain good weight occasionally and that she

may

> improve as she get older. But her eating seems to be worsening.

Does

> anyone have some advice?

> Thanks,

[Guest guest]

, A couple things.

1) Call MAGIC Foundation tollfree 800-3MAGIC3 and ask them to mail

you the SGA pamphlet. You can also find it on the website

www.magicfoundation.org.

2) Email me privately at magicrss@ mindspring.com. I live in

Manhattan Beach and am very familiar with many many specialists in

the Los Angeles area. I can also hook you up with some other SGA or

RSS families that live in the area, if you wish.

3) Yes, your daughter's eating description is very common. What

was her gestational age, and what is her current age? Keep in mind

that her GI issues could be completely at fault here, for keeping

her stature down. Or she could be one of the very small %'tage of

children born SGA who never catch-up. I can explain more if you

need, but read the MAGIC information first.

Welcome!!! Salem

> Hi

> I am new to the group. My daughter is SGA- born weughing 3 pounds

14

> ounces with head and length also well below 3rd percentile. She

> doesn't seem to have russell silver syndrome but it has been

> impossible to get her to eat since she was born. Is SGA similar to

> RSS, are the issues similar? She is now almost 4 months and I have

> difficulty getting her to eat. She is just on 3rd percentile on

the

> height for weight curve. She is 22 height-3rd percent and 9

pounds 6

> ounces- below 3rd percent. She is on reglan, pepcid and prevacid

for

> reflux. But I don't know what to do because she is now eating less

> than she used to. The most she has eaten is 18 ounces ina day on

> 24kcal/ounce. The only way I can get her to eat is in a sleepy

state.

> She will only eat about 40ml when fully awake. But now she is

> starting to refuse to eat when sleeepy as well. Is this similar to

> experiences other people have had? Does anyone know doctors in the

> Los Angeles region who knows how to deal with this? Her growth is

> starting to level off. She never demands for food. I currently

feeed

> her every 4 hours and it takes an hour to get her to take anything.

> Does anyone have some advice for me. She is getting a gastric

empting

> study tommorrow. My pediatrician said that she doesn't think

giving

> her more calories will make her grow any better- this doesn't sound

> right to me. My pediatrician said that she will have growth

spurts so

> it is ok for her not to gain good weight occasionally and that she

may

> improve as she get older. But her eating seems to be worsening.

Does

> anyone have some advice?

> Thanks,

[Guest guest]

- welcome to the group. My heart goes out to you - I know

this is difficult and you are doing all the right things. I'm going

to let all the " brains " of the group respond to you about your

concerns - but, I will say - check out the MAGIC Foundation and keep

us posted. Hugs to you.

- H

> Hi

> I am new to the group. My daughter is SGA- born weughing 3 pounds

14

> ounces with head and length also well below 3rd percentile. She

> doesn't seem to have russell silver syndrome but it has been

> impossible to get her to eat since she was born. Is SGA similar to

> RSS, are the issues similar? She is now almost 4 months and I have

> difficulty getting her to eat. She is just on 3rd percentile on

the

> height for weight curve. She is 22 height-3rd percent and 9

pounds 6

> ounces- below 3rd percent. She is on reglan, pepcid and prevacid

for

> reflux. But I don't know what to do because she is now eating less

> than she used to. The most she has eaten is 18 ounces ina day on

> 24kcal/ounce. The only way I can get her to eat is in a sleepy

state.

> She will only eat about 40ml when fully awake. But now she is

> starting to refuse to eat when sleeepy as well. Is this similar to

> experiences other people have had? Does anyone know doctors in the

> Los Angeles region who knows how to deal with this? Her growth is

> starting to level off. She never demands for food. I currently

feeed

> her every 4 hours and it takes an hour to get her to take anything.

> Does anyone have some advice for me. She is getting a gastric

empting

> study tommorrow. My pediatrician said that she doesn't think

giving

> her more calories will make her grow any better- this doesn't sound

> right to me. My pediatrician said that she will have growth

spurts so

> it is ok for her not to gain good weight occasionally and that she

may

> improve as she get older. But her eating seems to be worsening.

Does

> anyone have some advice?

> Thanks,

[Guest guest]

Hi, I am , mom to Autumn 20.5 mos who has RSS and I also

have a 3 mos old daughter Summer who is SGA now and is not showing

any signs of catch up growth. She doesn't seem to have the RSS look

(head shape) that Autumn does yet her size is following same growth.

She was 4 13 at birth and has gained almost 4 lbs now and is 8.75 lbs

and 20.5-21 inches, somewhere around there. She also has bad reflux

and was in the NICU for a week with reflux and trachea-larangeal

malacia and had eating issues..would also turn blue when feeding,

desat, bad coordination with feeding and couldn't stay awake long

enough to get her tiny amount she takes in, after a lot of work, she

is doing better. she still has bad reflux wiht malacia and a low

appetite although she does eat (I am breastfeeding) and seems to like

to, she doesn't take much and most of the time I have to get her to

feed or she would go long periods in between. At birth Summer and

Autumn were both proportionate IUGR although Autumn's head growth

started under the charts there was immediate catch up growth to mid

charts by a few weeks age and is now 50-75%. Summer's head growth is

also now on the charts although it started at 31 1/4 cm and is now

37.5, not much on the charts but is moving up or so it seems. I know

this is a hard time for you. It is very difficult wanting to get

more calories in but no matter what we do, they just will not eat

more. Having Summer now is a repeat of Autumn with a couple added

issues, but it is a little easier having gone through it before.

Autumn is now 20.5 mos and is 16 lbs. Her growth was good (for

RSS/SGA) until solids then went downhill and hasn't stopped. Good

luck to you. I hope you find the answers you need here. Also, I do

think it is way too early for the ped to rule out caloric intake for

the cause of size. We are dealing with that too with Summer. Feel

free to e-mail me privatly at anderkat3@...

Also, congrats on the birth of your little girl!

mom to Autumn RSS 20 mos, Summer 3 mos, Ocean 3, and Skye 7

> Hi

> I am new to the group. My daughter is SGA- born weughing 3 pounds

14

> ounces with head and length also well below 3rd percentile. She

> doesn't seem to have russell silver syndrome but it has been

> impossible to get her to eat since she was born. Is SGA similar to

> RSS, are the issues similar? She is now almost 4 months and I have

> difficulty getting her to eat. She is just on 3rd percentile on the

> height for weight curve. She is 22 height-3rd percent and 9 pounds

6

> ounces- below 3rd percent. She is on reglan, pepcid and prevacid

for

> reflux. But I don't know what to do because she is now eating less

> than she used to. The most she has eaten is 18 ounces ina day on

> 24kcal/ounce. The only way I can get her to eat is in a sleepy

state.

> She will only eat about 40ml when fully awake. But now she is

> starting to refuse to eat when sleeepy as well. Is this similar to

> experiences other people have had? Does anyone know doctors in the

> Los Angeles region who knows how to deal with this? Her growth is

> starting to level off. She never demands for food. I currently

feeed

> her every 4 hours and it takes an hour to get her to take anything.

> Does anyone have some advice for me. She is getting a gastric

empting

> study tommorrow. My pediatrician said that she doesn't think giving

> her more calories will make her grow any better- this doesn't sound

> right to me. My pediatrician said that she will have growth spurts

so

> it is ok for her not to gain good weight occasionally and that she

may

> improve as she get older. But her eating seems to be worsening.

Does

> anyone have some advice?

> Thanks,