Re: help for 6 months-old BERRA from Turkey

November 29, 2004

Hi Gulnur,

Welcome to our group. I hope we can answer all your questions.

First, pleae don't force your baby to eat. It would not be a good

idea to get her hating food or feeding time.

If you can, try and get her on a high calorie baby formula. Ask your

doctor of hospital what they recommend.

RSS kids are like normal kids. There is no one food that they like as

a rule. So feed your child whatever she will eat. Once she is on

solid foods, try and give her foods high in calories, things like

scrambled eggs made with cream instead of milk. Milk shakes ( milk

and lots of ice cream), fried foods, like fried potatos etc. If she

is eating ceral, add about 1/4 teaspoon canola or vegatable oil to

her ceral. But be careful, this cause very very messy diapers.

Here in the USA, doctors sometimes perscribe cyproheptadine. It is an

antihistamine but has some appetitie stimulanting properties. Doctors

usually don't like to give it to very young children.

Once your child gets to be 2 ( and she will get to be 2) then most

doctors will consider growth hormone. There are very few side affects.

Your daughter should not get sick more than any normal child.

However, since she eats little, she is somewhat malnourished. This

may aggravate any illnes she does get.

Generally, she will be fine but it maybe hard for a while. Try and

give her the highest calorie foods you can.

Last, if you can go to London, England, there is a Dr. Stanhope at

the Great Ormond Street hospital. He is one of the few experts on RSS.

I hope this helps.

Ken M

>

> Hi,

>

> I'm a mother of Berra. My daugther was born on May. 15th, 2004.

>

> During the 5th of my pregnancy, doctors told that there is an

asymetric development and there might be a genetic problem with my

baby.

>

> Berra was born one month early. She was 36 cm (14.17 inches) and

1330 gr.(2.93 pound)

>

> Now, she's 6 month old, 55,5 cm (21.85 inches) and 3150 gr.(6.94

pound)

>

> Addinationally, she had a reflu when she's 40 days old.

>

> When I force her to eat, most time she throws up

>

> At her birth, there was 2.5 mm diameter hole in her heart. We used

enapril, digoksin and lasix. Now the hole is getting close.

>

> She took 0.880 gr during her first month. And then, she took only

200-250 gr (0.440-0.550 pound) per month. Whatever we did, we

couldn " t make her take more than that.

>

> She has always lack of appetite. We noticed that she has anemia at

40 days old.

>

> By using some medicine (ferrum fort, ferro sanol) her appetite is

getting better but not so good. Nowadays she is eats not so good. She

always cry when I feed. She often gives her food back from inside her

mouth. She eats 350-400 cc per day. I feed her 7 times per day.

>

> The doctors say that her weigth is low, but they don't advise

anything. A doctor which we currently visited wants us to feed her

with a food named " Fantomalt " . This food is rieched by corbonhiareds.

I use this food 6 times per day for 10 days and she takes 200 gr

(0.440 pound) after 10 days.

>

> Fantomalt works but I have no idea it can from now. I've just

started using Zaditen for her appetite, I don't see anything good yet.

>

> She always eats hard. She loves pecifier so much. I try to fees her

by a pecifier. She sucks feeding bottle when she is in sleep. When

she is awake, using feeding bottle is not possible.

>

> Since we lives in Turkey, we have a`lot of problems. The number of

the baby who has this sendrom is very limited. We are in Ýstanbul, I

just meet only 2 family. I know that there are 3-4 family more. The

doctors don't have good experience about this subject and can not

help so much. You are only our hopes. We can buy medicine if it is

necessary.

>

> The subjects I need to help are as follows:

>

> .

>

> What are the medicine and methods that make her eats good?

>

> Some statistical data about your babies, like weigth and heigth

>

> Are ther get sick quickly?

> What are the food that they likes?

> What foods make them take weigth?

> What about growth hormon treament? Does it grow them? Is there

any negative subject?

>

> Thanks for your helps

>

> Sincerely

>

> Gulnur Ergun

>

> __________________________________________________

>

November 29, 2004

Gulner,

It is great that you have joined this group, they are all alot of help.

Periactin is used to stimulate the appetite, and for my son, it works very well.

But I don't know if they can take before about 8 months, which is when he

started. Also, 30calories per ounce with formula is great, because every calorie

counts. With the growth Hormone, I don't think that they will start until at

least 2 years old. I hope this helps, and if you have any questions feel free

to ask.

le mom to Datreon, RSS, 14months, 15lb 9oz, 26.5in, periactin, tubes,

assymetry

November 29, 2004

Hi, Gulnur,

I'm glad that you have found us. Just this past weekend I was

talking to my sister-in-law to see if she knew of any doctors in

Turkey who could help another family that has posted on this site.

My sister-in-law used to live in Istanbul (for over 2 years) and

visits there every two years. She said she knew of no doctors who

would be able to help, that most people go to Germany for medical

help.

I think that Ken's idea of seeing Dr. Stanhope in London, England,

is a great one. Dr. Stanhope is just as good as our Dr. Harbison,

here in the US (New York City). I'm sure it would be easier to go

there than to NYC.

Have you looked at the MAGIC Foundation website? Go to

www.magicfoundation.org. You will learn a lot from there.

Please keep us informed about your daughter. We will all try to

help as best we can. In the meantime, if I can get my sister-in-law

to answer any questions for you, let me know.

Jodi Z.

November 29, 2004

Welcome Gulnur,

My name is Pat, and I am grandma to . will turn 3 at the end

of Dec. He was born at 39 weeks gestation, weighing 3# 5oz, and measuring

15 " long.

was always hard to feed, and NEVER cried for a bottle. If we pushed

him to eat, he would throw up everything. At 8.5 months of age, oral feeds

were almost impossible, and we were only getting 8-10oz down him a day. He

weighed only 8# when we took him to see Dr H, an endo specializing in RSS

here in the States. She insisted on an immediate triple procedure (fundo,

pyloroplasty, and g-tube placement). I believe it saved his life.

She changed him over to EleCare, an elemental formula, mixe to 30kcal/30ml,

that does not have to be digested, only absorbed. She felt he was expending

too many calories just digesting his food. She, also, wanted him seen by a

Pulmonologist, as his breathing was always rapid, and his chest retracts.

She felt that this too was expending too many calories.

has always gotten very sick, very easily. He was frequently

hospitalized during his first year, and we almost lost him several times.

BUT this was because he was extremely malnourished.

is now considered to be too fat! If you can believe that. His

current stats are with my signature at the bottom of this post. I believe it

has a lot to do with his g-tube. The forced eating, combined with

undiagnosed reflux, created an extreme oral aversion. After his g-tube

surgery, any time we tried to feed him solids, he would aspirate. Just

recently we've been making some progress with his oral eating, but he is

still mostly g-tube fed.

Some people are resistant to the idea of a g-tube, but from experience I can

tell you that it's not nearly as bad as you imagine it will be. After two

years, it's just another part of , and it's strange to think of

without it someday.

began Growth Hormone in July. He's done pretty well. Because of

's extra weight, we are having some problems with insulin resistance,

and premature adrenarche. The insulin resistance can be made worse by GH, so

we are watching him very carefully.

I hope this helps, and if there is anything else that we can answer, please

feel free to ask.

Hugs for you all!

Pat (g-ma to , RSS, 35 months, 23.9#, 32.2 " , G-Tube, Zantac,

Prevacid, Singulair)

November 30, 2004

Maybe being preemie and so small at birth could be a factor in why she gets sick

easy.

Tonya mom to Aubrey

kmerrith wrote: