reflux

January 5, 2006

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

>

January 7, 2006

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

> >

>

January 12, 2006

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

January 12, 2006

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: