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Hi Jayne

Do you ever check Lilys blood sugar, if she is not eating properly she

is at risk of becoming hypoglycemic(having a low blood sugar) this is

a real risk with our kids.

One of the first indicators that they are dropping their blood sugar

is ketones in the urine. You can buy ketosticks from the chemist and

all you need to do is put a cotton ball in her nappy and use the

soaked ball to wet the stick.

There is a very good info sheet written by Dr Harbison in America,

which explains all this. You can get it from the Magic foundation, or

if you want I can send you a copy.

The fact Lily is not eating regularly is not good. RSS kids need

regular calories.

Let me know if you want more info.

If lily is sleepy all the time or sweats alot, doesnt have much

energy, these are all symptoms of hypo g.

Tube feeding has got problems, the kids that have tubes have them

because they dont have an option.

When Liam got his tube, it was almost a relief to know he was being

fed properly.

Go one step at a time though.

Jody(Friday afternoon, time to sit back and enjoy the weekend!!!)

Hope its not to cold over there, we are expecting a heatwave.

>

> Jodie I will talk to our dr re Lily ? having reflux,I will also ask

> about Periactin.We really dont want her tube feeding but at the

moment

> she has not ate for over 2 weeks now,but she may just start again

> tomorrow. so we are finding it hard to decide what to do.what are

the

> complications of tube feeding?? jx

>

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Jayne - yes, I concur with Jody. Another symptom believe it or not

is crankiness, hunger - but then not wanting to eat, and as Jody

said - fatigue or lethargy. Prior to Ian's hypo issues - he would

be tired one minute, he would eat and then be very hyper and

sometimes volatile, then he would be tired again. This is a sign I

have come to find out with Ian - that his sugars are low, too high,

and then low again.

Keep us posted! Thinking of you.

- H

> >

> > Jodie I will talk to our dr re Lily ? having reflux,I will also

ask

> > about Periactin.We really dont want her tube feeding but at the

> moment

> > she has not ate for over 2 weeks now,but she may just start

again

> > tomorrow. so we are finding it hard to decide what to do.what

are

> the

> > complications of tube feeding?? jx

> >

>

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hi thanks for the thoughts on tube feeding.i feel excactly as you

described, I feel she doesnt need it then she definatly does. Lily

started to eat again 2 days ago and then this am she has refused

everything. I managed to get 15mls of milk down her but she vomited.

And there was much more than 15mls.she even started shaking her head

when she saw a spoon and bowl.. Could this be reflux??? she seems to

not be able to tolerate anything, as if she is full...... I know that

RSS is the reason for it most of the time but she has been so eager to

eat over the last few days. She has even woke up for the past 2 nights

and hasnt settled back down til after she has had a 4oz bottle each

time. The the dramatic change. Is it reflux...??? jayne x

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Hi Jayne,

There are a couple tests that are done by a GI doctor, I think you should

have Lily tested for. As you have probably read, the reflux is common with RSS,

and not eating, spitting up or vomiting are symptoms, and you don't want this to

go unchecked because the rising stomach acid causes damage to the esophagus.

And, if you think there was more than what you gave Lily this morning, that she

vomited, she should be tested for delayed gastric emptying, meaning, her body

didn't digest last nights meal, got too full and vomited. Both these tests are

pretty standard with RSS kids. Not to scare you, I just want to help anyone

avoid what some of us have recently gone through, since you are describing

exactly how it starts. These problems seem to catch up with these kids with a

vengeance around age 2. If there is a condition that is treatable, you may

avoid a worse problem down the road. Also, does Lily get constipated? This would

make Dasia basically not eat for a couple days, if it was

real bad. Then she would vomit if she would eat, having too much constipation

backed up. Dasia has low muscle tone, and her Dr thinks this could be the cause,

since it is also muscle that works the digestion process. So it could be a

number of things, I even read once that there might be a hormone that is not

being produced adequately, that gives the sensation of hunger, and could be that

it just intermittently affects our children. As Jodi Z has so lovingly pounded

into us, low sugars are the most dangerous, because this condition can lead to

brain damage, some have speculated, that kids with learning disabilities may

have had unchecked low blood sugar as infants and young children. This is the

most important reason our kids can't go without regular meals. Their bodies

don't have enough fat stores to get the needed sugar, when there is a " famine " .

Also, you can get ketone sticks for under $10, testing her urine, you can find

out when her body is burning up body tissue for fuel, you

don't want this either! Sorry, if this is too much info all at once. I know

this can be overwhelming, I just wish I would have acted sooner, I guess this is

my way of making up for it!

Best of luck to you. We all understand, so keep posting, and all of these

wonderful people will have so much to share and offer. I would be lost without

them.

Mom to Dasia

23mo RSS

jaynetolan wrote:

hi thanks for the thoughts on tube feeding.i feel excactly as you

described, I feel she doesnt need it then she definatly does. Lily

started to eat again 2 days ago and then this am she has refused

everything. I managed to get 15mls of milk down her but she vomited.

And there was much more than 15mls.she even started shaking her head

when she saw a spoon and bowl.. Could this be reflux??? she seems to

not be able to tolerate anything, as if she is full...... I know that

RSS is the reason for it most of the time but she has been so eager to

eat over the last few days. She has even woke up for the past 2 nights

and hasnt settled back down til after she has had a 4oz bottle each

time. The the dramatic change. Is it reflux...??? jayne x

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Hi Jayne,

GI is short for a Gastroenterologist, he will do the testing for reflux

and delayed gastric emptying. Specializing in failure to thrive and feeding

issues that involve the esphogus, stomach, and intestines, (other organs too,

that we don't have to worry about). Spitting up is a very small amount of vomit,

that babies do after feedings, (of course normal for infants, this shouldn't

happen regularly for toddlers). If you notice Lily swallowing a lot, she's

trying to keep small amounts from coming up, but this doesn't have to be present

to be reflux. There is what is known as silent reflux too, where you would not

see any symptoms.

I also had a lot of faith that a regular Ped Endo would have much

knowledge of this growth disorder all the way around, to much disappointment.

When I had many questions and concerns, she told me, the only thing we deal with

is her linear growth, then said, she didn't think she was that short! So we are

planning to see Dr. Harbison in NYC once or twice a year, and find an Endo

locally who will confer with her opinions on treatment. Then we are left to find

a specialist for each of the problems we encounter. So we've just recently been

to GI for the first time, and plan to see a Ped Orthopedic once a year to

monitor her asymmetry, and watch for scoliosis.

I'm so glad Pattie sent that wonderful message about her son, and what

bright futures these kids have. RSS is considered a childhood disorder. These

issues will all be a distant memory, someday we'll all be talking over coffee

with our children about all the worries and stress we endured! They grow up and

live normal lives, and have the same life expectancy as anyone else. As hard as

it can be, try not to think the worst. Everything will turn out fine, I think

it's more trying for us than for our kids!

Mom to Dasia

23mo

jaynetolan wrote:

> hi thanks for the thoughts on tube feeding.i feel excactly as

you

> described, I feel she doesnt need it then she definatly does. Lily

> started to eat again 2 days ago and then this am she has refused

> everything. I managed to get 15mls of milk down her but she

vomited.

> And there was much more than 15mls.she even started shaking her

head

> when she saw a spoon and bowl.. Could this be reflux??? she seems

to

> not be able to tolerate anything, as if she is full...... I know

that

> RSS is the reason for it most of the time but she has been so

eager to

> eat over the last few days. She has even woke up for the past 2

nights

> and hasnt settled back down til after she has had a 4oz bottle

each

> time. The the dramatic change. Is it reflux...??? jayne x

>

>

>

>

>

>

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> > hi thanks for the thoughts on tube feeding.i feel excactly as

> you

> > described, I feel she doesnt need it then she definatly does.

Lily

> > started to eat again 2 days ago and then this am she has refused

> > everything. I managed to get 15mls of milk down her but she

> vomited.

> > And there was much more than 15mls.she even started shaking her

> head

> > when she saw a spoon and bowl.. Could this be reflux??? she

seems

> to

> > not be able to tolerate anything, as if she is full...... I know

> that

> > RSS is the reason for it most of the time but she has been so

> eager to

> > eat over the last few days. She has even woke up for the past 2

> nights

> > and hasnt settled back down til after she has had a 4oz bottle

> each

> > time. The the dramatic change. Is it reflux...??? jayne x

> >

> >

> >

> >

> >

> >

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> > hi thanks for the thoughts on tube feeding.i feel excactly as

> you

> > described, I feel she doesnt need it then she definatly does.

Lily

> > started to eat again 2 days ago and then this am she has refused

> > everything. I managed to get 15mls of milk down her but she

> vomited.

> > And there was much more than 15mls.she even started shaking her

> head

> > when she saw a spoon and bowl.. Could this be reflux??? she

seems

> to

> > not be able to tolerate anything, as if she is full...... I know

> that

> > RSS is the reason for it most of the time but she has been so

> eager to

> > eat over the last few days. She has even woke up for the past 2

> nights

> > and hasnt settled back down til after she has had a 4oz bottle

> each

> > time. The the dramatic change. Is it reflux...??? jayne x

> >

> >

> >

> >

> >

> >

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  • 1 month later...
Guest guest

I am so glad Dasia is doing so well! It's funny how different your child is

after the tube! The added energy you didn't even know was missing!!

Amazing!!

Are you doing bolus feeds or continuous?? I know often Dr. H prefers

continuous feeds to bolus because our kids simply don't tolerate them very

well. Each child for different reasons, but mainly delayed gastric emptying

and it seems to aggravate reflux. Now some kids do just fine. I know

, Judith's son has done bolus's. Alyssa doesn't even have reflux and

she has much more difficulty with bolus's than with continuous. Just a

thought.

Dayna

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of

Sent: Monday, March 06, 2006 10:42 AM

To: RSS-Support

Subject: reflux question

Hi Everyone. Sorry it's been so long. There has been so much going

on, and I'm just barely hangin in there, hopefully all I have to say

is 1st trimester and you'll all understand! On top of that I've had

complications with Dasia. After surgery, she developed what seemed

to be pretty severe reflux. She began vomiting her feedings about

once a day, usually in the morning, she'd start coughing halfway

through her feedings, and I'd know to stop it, that she was going to

vomit. One time in between feedings she spit up plain stomach acid,

it was on her clothes strong, but you couldn't see it, and she would

touch her cheeks and say owe. After I described her symptoms to the

Dr., of course he prescribed prevacid. She's been on it for 4 days,

and most of the symptoms have gone away, but I sometimes see her

taking deep breaths and swallowing. But I don't know if that is from

feeling so full from her feedings or she's still experiencing

reflux. Now I'm worried the reflux is bad enough that the medicine

will not be enough, that she'll need the nissen procedure. So that's

my question, did her symptoms seem so severe, that medicine may not

take care of the problem? Any input will be greatly appreciated!

Thanks Everyone!

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