Questions about tube feeds

[Guest guest]

I'm in the process of looking for a new Dr. for Olivia because the

one we have now isn't willing to " get on board " the RSS train with

us. Everything we know about RSS has come through this listserve

and Magic which we are very grateful for but our Dr. is not willing

to research the syndrome or learn anything about it. This leads me

to think that we havn't been getting the best medical care for

Olivia and her weight is really starting to concern me.

I hate to compare kids to each other especially when every one is

different but............. Olivia hasn't gained any weight for

almost a year now, she's been stuck at 18 lbs. She's grown about an

inch though which is good but she looks terribly skinny and bony,

she spills keytones regularly. Olivia stopped gaining weight as

soon as we took the night bottle away at 3 years old. She has a

great appetite so we've never needed a stimulant for that but I'm at

a loss as to why she doesn't gain weight.

Have RSS kids ever started tube feeds when they are older and they

are good eaters? Olivia had an NG tube for the first 2 months but

then was able to take small feeds on her own and they took the tube

away.

Hope this all makes sense, it got a little rambly there.

Leah mom to Ash,8 non-RSS and Olivia 4yrs, 18 lbs, 32 "

[Guest guest]

Leah,

I think you are doing the best thing for your child. I am appauled

that the doctor wasn't willing to research more about RSS. What, did

he just flat out think she doesn't have RSS, or what? What a poor

excuse for a doctor! Man, I hope you find someone that is willing to

help you and be proactive for you and Olivia.

Now, on to the tube question. I am NOT, by any means, an expert

here, but I am pretty sure there have been kids start tube feeds

later. I know that Alyssa, Dayna Carney's little girl was eating

well on her own, but not gaining the weight. So upon seeing Dr. H,

she put a g tube in. As a matter of fact, they were supposed to have

an appointment with Dr. H today to have a button put in Alyssa! And,

from what Dayna has told me, Alyssa has gained quite a few pounds

since first seeing Dr. H in October! It sounds like Olivia does need

something to help her gain. But, I am not saying a tube

necessarily. Is ther any way you could see Dr. H? Are you going to

the convention in July so that you can see her there? I hope you

find a good doctor to help you and take care of your little girl.

Sounds like she just doesn't have what she needs if she is always

spilling ketones. I guess she needs to get a little more fat on

her. was the same way until we saw Dr. H. He was so skinny

and had NO fat to speak of on him. He is still a little skinny, but

atleast now I am seeing a little roll here and there! ) His

little wrists and legs are getting chbby and he is finally getting a

belly on him! ) Seems like the hypoglycemia is better now too.

So, keep searching for a good doctor that has ateast heard of RSS and

willing to research it if need be. I am sure others on here can help

you with the tube feedings starting later in life too.

Take care, Leah,

Jodi R.

's mom

20 months, 14 lbs. 7 oz.

[Guest guest]

Leah, I am not a doctor but Olivia sounds like !!!

stayed at 18-19 pounds for about 18 months, and she was a GREAT

eater. Some local doctors were talking g-tubes, trying to figure

out a solution. They kept saying " she's eating enough calories for

her weight. "

Long story short. Dr. Harbison says in general (clearly, unique

cases aside), if an RSS child has a good appetite and isn't gaining

weight, g-tube is not the best option until you have tried other

means of getting more calories into them.

First of all, if they have a good appetite and are eating well, that

is the first step. But she isn't getting ENOUGH calories, if she

isn't gaining weight. If she is flat and not losing, then you can

guess that she probably needs about 30% more calories a day than

what she is getting. This is the goal we set for .

So the first thing you have to do is know how many calories she is

already getting a day. Your insurance should pay for a

nutritionist. Otherwise, it is harder but you can track the

calories yourself with a good book. Track for 3 days, and

estimate " bad " eating day, average day, excellent day.

would have about 2 " bad " days, 3 average days and 2 excellent days.

Now you know the number of calories and you can calculate the extra

30%. (I am just using 30% because that is what worked for us.)

So, let's say she is eating 1000 calories a day, you have to get 300

more into her.

Next, spilling of ketones means she is not eating enough

carbohydrates often enough. If she is spilling during the day, you

have to get her to eat more complex carbos (lower on the glycemia

index) with snacks. If she is only spilling in the morning, are you

doing the milk with a tablespoon of cornstarch at night routine?

This is a MUST for any severely underweight child, and an ABSOLUTE

for any child spilling ketones.

Start with a teaspoon of cornstach (ask MAGIC for articles #H-

26/28). Shake/stir. Then gradually increase it. It is tasteless

and cheap.

(NOTE: this is only for babies over 1 yr old. Otherwise, polycose

is added for babies).

Now, for a child who has a good appetite, 300 extra calories should

be a no brainer. One can of Peptamen Jr or Pediasure is 240

calories.

One 4-6oz homemade milkshake (use ice cream, 1/2 envelope of

Carnation Instant Breakfast any flavor, 1/2 and 1/2 or

Pediasure/Peptamen Jr. and you can add fruit if you want, chocolate

sauce, etc).

You can get a good 300 calories in one small milkshake like this.

Or.... the more frequent snacks. Canola oil added to soup, macaroni

& cheese, pastas, etc. -- 1tblsp = 80+ calories.

There are lots of little ways to get extra calories in, but the

milkshake/formula is the fastest route.

Just remember, she may be a good eater, but she still isn't getting

enough calories. If you put a g-tube in, most likely her oral

eating will go away -- and when you have a good eater to start, that

would be LAST choice.

The next option after the normal caloric increase is adding

cyproheptadine (Periactin). Sort-acting antihistamine that

increases her appetite even more (if you can believe it). We had

on this and it truly is the ONLY way she can gain weight, as

it naturally makes her hungrier and she eats even more than the

enormous amount she already ate before. After a year, we stopped

the Periactin for about 9 months, and her weight gain velocity fell

way off. MAGIC article #H-27 explains about Periactin.

I hope this is a good start for you.

Salem

>

> I'm in the process of looking for a new Dr. for Olivia because

the

> one we have now isn't willing to " get on board " the RSS train with

> us. Everything we know about RSS has come through this listserve

> and Magic which we are very grateful for but our Dr. is not

willing

> to research the syndrome or learn anything about it. This leads

me

> to think that we havn't been getting the best medical care for

> Olivia and her weight is really starting to concern me.

> I hate to compare kids to each other especially when every one

is

> different but............. Olivia hasn't gained any weight for

> almost a year now, she's been stuck at 18 lbs. She's grown about

an

> inch though which is good but she looks terribly skinny and bony,

> she spills keytones regularly. Olivia stopped gaining weight as

> soon as we took the night bottle away at 3 years old. She has a

> great appetite so we've never needed a stimulant for that but I'm

at

> a loss as to why she doesn't gain weight.

> Have RSS kids ever started tube feeds when they are older and

they

> are good eaters? Olivia had an NG tube for the first 2 months but

> then was able to take small feeds on her own and they took the

tube

> away.

>

> Hope this all makes sense, it got a little rambly there.

>

> Leah mom to Ash,8 non-RSS and Olivia 4yrs, 18 lbs, 32 "