Re: Dasia's appts

[Guest guest]

,

I'm so glad that the GI decided to go along with the g-tube. I

think that Dasia needs it and will be so much better off for it.

Now you just have to manage her health until then. It's only three

weeks away. Just do whatever you can to get through this time.

Did you discuss the ketone issue with both doctors? Even with the g-

tube you are going to have to keep an eye on them. Even if she has

the g-tube, if she cannot tolerate the feeds, you will have to do

the hospital routine again. Make sure the GI and/or endo are on the

same page with you on that one. It will be more important than

ever, okay?

I don't know the exact timeline for waiting until starting gh once

catch-up growth is achieved. Don't even worry about that. You will

have the tube placed, work up to the proper amount of calories that

she needs and then see the catch-up growth start to happen. It will

not occur overnight, though. We are talking months here. What you

will see is Dasia will blossom before your eyes. Her eyes will

become brighter, her behavior will change and she will fill out.

You will just know it is working. She will start to grow, too, but

by then you will be on your way to, or have plans to see, Dr. H. who

will lay out the plan.

The other thing is that the endo did not totally refuse the gh

idea. He did say he would consider trying it, but not to expect

great results. He will see that it will work and will allow you to

continue. Just give it time.

Keep my phone number handy in case you need to talk again

Jodi Z

[Guest guest]

- yes - keep her phone number on hand. I'm talking from

experience <grin>.

- H

>

> ,

>

> I'm so glad that the GI decided to go along with the g-tube. I

> think that Dasia needs it and will be so much better off for it.

> Now you just have to manage her health until then. It's only

three

> weeks away. Just do whatever you can to get through this time.

>

> Did you discuss the ketone issue with both doctors? Even with the

g-

> tube you are going to have to keep an eye on them. Even if she

has

> the g-tube, if she cannot tolerate the feeds, you will have to do

> the hospital routine again. Make sure the GI and/or endo are on

the

> same page with you on that one. It will be more important than

> ever, okay?

>

> I don't know the exact timeline for waiting until starting gh once

> catch-up growth is achieved. Don't even worry about that. You

will

> have the tube placed, work up to the proper amount of calories

that

> she needs and then see the catch-up growth start to happen. It

will

> not occur overnight, though. We are talking months here. What

you

> will see is Dasia will blossom before your eyes. Her eyes will

> become brighter, her behavior will change and she will fill out.

> You will just know it is working. She will start to grow, too,

but

> by then you will be on your way to, or have plans to see, Dr. H.

who

> will lay out the plan.

>

> The other thing is that the endo did not totally refuse the gh

> idea. He did say he would consider trying it, but not to expect

> great results. He will see that it will work and will allow you

to

> continue. Just give it time.

>

> Keep my phone number handy in case you need to talk again

>

> Jodi Z

>

[Guest guest]

,

I am sorry you are having a problem with your endo....i know the

frustration with dealing with docs, especially ones who don't

understand the first thing about RSS. Once you get with Dr. H. you

will feel so much more relaxed, but I think the g-tube will help

Dasia and help you feel better too..

Take care,

Sheryl (mommy of Dalia and Hanna)

>

> Hi Everyone,

> It's been a hard week, Dasia is sicker than ever, today she

woke up with the biggest red puffy eyes, and they were glued shut.

But, the good news is, we finally have a plan. I basically told the

GI doctor that I really wanted a g-tube for her, explaining the

vicious cycle of her getting sick then not eating, then never

getting better because her body isn't getting what it needs to fight

off illness. So Feb 2nd she's scheduled for an endoscopy and g-tube,

3 days before her B-Day! Oh well, it's too important.

>

> However, our appt with Endo was very disappointing. She's not an

advocate for Periactin, and when I asked about GH, she said Dasia

isn't very short, (she's about 5 graph squares below the 3rd%.) She

said, if we did try GH, it would be a trial period later on, after

watching her growth velocity, then see if it would even work for

her. I know Dasia has a lot of weight to gain still, I just need to

make sure I have the right Endo on board. I've now learned, there is

only one Dr who is set apart from the rest.

> I know the g-tube will work wonders for her growth all the way

around, so I'll just be happy with that for now, and make sure when

Dasia has gained the weight, and her height starts to level off,

we'll be on our way to NYC. Considering age and weight are not an

issue, can anyone tell me, for how long the child's height is at a

plateau, before they decide to start GH? Thanks!

>

> Mom to Dasia

>

>

>

> ---------------------------------

> Yahoo! Photos

> Ring in the New Year with Photo Calendars. Add photos, events,

holidays, whatever.

>

>

[Guest guest]

this so sounds like what happened to Eva. we managed to not have a g-tube. we

were doe=down to having days before it would be a backward spiral. the decision

to take out the tonsils first is the best thing we ever did. when we went back

that next week for a weight check. she had gained a 1/2 pound. the Dr. was

impressed because we knew Eva had been put back in after she developed the flu

after the procedure, that was two days back. so we knew that the tonsils were

to big and that is why she chewed her food and spit it out. or gagged on

anything else. she would refuse to eat for days at a time. she was just

scared.she is 32 lbs. not big for most kids that are soon to be 7. but got big

attitude.

hang in there y'all we'll make it.

Donna, Eva's mommy, RSS,GHT

Malcolm wrote:

Hi Everyone,

It's been a hard week, Dasia is sicker than ever, today she woke up with

the biggest red puffy eyes, and they were glued shut. But, the good news is, we

finally have a plan. I basically told the GI doctor that I really wanted a

g-tube for her, explaining the vicious cycle of her getting sick then not

eating, then never getting better because her body isn't getting what it needs

to fight off illness. So Feb 2nd she's scheduled for an endoscopy and g-tube, 3

days before her B-Day! Oh well, it's too important.

However, our appt with Endo was very disappointing. She's not an advocate for

Periactin, and when I asked about GH, she said Dasia isn't very short, (she's

about 5 graph squares below the 3rd%.) She said, if we did try GH, it would be a

trial period later on, after watching her growth velocity, then see if it would

even work for her. I know Dasia has a lot of weight to gain still, I just need

to make sure I have the right Endo on board. I've now learned, there is only one

Dr who is set apart from the rest.

I know the g-tube will work wonders for her growth all the way around, so I'll

just be happy with that for now, and make sure when Dasia has gained the weight,

and her height starts to level off, we'll be on our way to NYC. Considering age

and weight are not an issue, can anyone tell me, for how long the child's height

is at a plateau, before they decide to start GH? Thanks!

Mom to Dasia

---------------------------------

Yahoo! Photos

Ring in the New Year with Photo Calendars. Add photos, events, holidays,

whatever.

[Guest guest]

Hi . I am sorry you are having a tough time. Dasia and

Autumn are very similar in size and her docs are all for GH, I guess

it just depends on the doctor. Search until you find the right one.

Also, I know the g-tube decision is such a hard one. I was so beside

myself when we had to decide for Autumn. But now 2 mos into it I am

so amazed at how well she is doing. She is so vibrant and

energetic. She is really trying to talk more, she is healthier than

ever and has not really been that sick since she was in teh hospital

before her tube placement. She was 16 lbs then and is close to but

not yet 18 lbs now (She's upper 17's lbs (no clothes), has also lost

a few oz). She is still underweight for length but she is such a

different kid now. Everyone is just so amazed at the difference. It

did take a month to even start noticing much difference. It is slow

but steady. Winter sickness is no longer a scary thought. She has

had ear tubes for chronic infections and no infections since they

were placed, an athsma preventative everyday helps her breathing, and

a g-tube to keep her nourished and boy is she thriving. On the days

she isn't taking what she needs to we just do one or more feeds. My

oldest just got sick tonight and has a fever. This is the first time

I am not worried Autumn will be in teh hospital if she gets sick

too! Even my husband who was so wary of the tube is just amazed how

well she is doing. It was funny, today I called and made an appt

for her at the ped for a 2 yr well visit and although a large

practice with many docs, we are well known becasue of all the

problems. The receptionist said " wow, we havn't heard from you in a

while. She must be doing really well! " It was a good feeling! Good

luck to you with everything!

mom to Autumn RSS almost 2, Summer SGA 6 mos, Ocean 3.5

yrs, Skye 7 yrs

>

> ,

>

> I'm so glad that the GI decided to go along with the g-tube. I

> think that Dasia needs it and will be so much better off for it.

> Now you just have to manage her health until then. It's only three

> weeks away. Just do whatever you can to get through this time.

>

> Did you discuss the ketone issue with both doctors? Even with the

g-

> tube you are going to have to keep an eye on them. Even if she has

> the g-tube, if she cannot tolerate the feeds, you will have to do

> the hospital routine again. Make sure the GI and/or endo are on

the

> same page with you on that one. It will be more important than

> ever, okay?

>

> I don't know the exact timeline for waiting until starting gh once

> catch-up growth is achieved. Don't even worry about that. You

will

> have the tube placed, work up to the proper amount of calories that

> she needs and then see the catch-up growth start to happen. It will

> not occur overnight, though. We are talking months here. What you

> will see is Dasia will blossom before your eyes. Her eyes will

> become brighter, her behavior will change and she will fill out.

> You will just know it is working. She will start to grow, too, but

> by then you will be on your way to, or have plans to see, Dr. H.

who

> will lay out the plan.

>

> The other thing is that the endo did not totally refuse the gh

> idea. He did say he would consider trying it, but not to expect

> great results. He will see that it will work and will allow you to

> continue. Just give it time.

>

> Keep my phone number handy in case you need to talk again

>

> Jodi Z

>

[Guest guest]

How is Dasia doing today? I hope she's feeling better.

B

and Kelli

Malcolm wrote:

Hi Everyone,

It's been a hard week, Dasia is sicker than ever, today she woke up with

the biggest red puffy eyes, and they were glued shut. But, the good news is, we

finally have a plan. I basically told the GI doctor that I really wanted a

g-tube for her, explaining the vicious cycle of her getting sick then not

eating, then never getting better because her body isn't getting what it needs

to fight off illness. So Feb 2nd she's scheduled for an endoscopy and g-tube, 3

days before her B-Day! Oh well, it's too important.

However, our appt with Endo was very disappointing. She's not an advocate for

Periactin, and when I asked about GH, she said Dasia isn't very short, (she's

about 5 graph squares below the 3rd%.) She said, if we did try GH, it would be a

trial period later on, after watching her growth velocity, then see if it would

even work for her. I know Dasia has a lot of weight to gain still, I just need

to make sure I have the right Endo on board. I've now learned, there is only one

Dr who is set apart from the rest.

I know the g-tube will work wonders for her growth all the way around, so I'll

just be happy with that for now, and make sure when Dasia has gained the weight,

and her height starts to level off, we'll be on our way to NYC. Considering age

and weight are not an issue, can anyone tell me, for how long the child's height

is at a plateau, before they decide to start GH? Thanks!

Mom to Dasia

---------------------------------

Yahoo! Photos

Ring in the New Year with Photo Calendars. Add photos, events, holidays,

whatever.

[Guest guest]

,

I am so sorry to hear that Dasia is so sick. I hope she is feeling

better today, though. I am very happy to hear that the G tube will

be placed. After having it put it, you will be amazed at the

results. Even over the short term. Just ask , Ian's mom.

Ian has an NG tube right now until he gets the actual G tube placed,

but he is doing worlds better now and is functioning well. And, I

think overall much happier and lively! ;o)

Hope she gets better soon. Keep us posted, okay!?

Jodi R.

>

> Hi Everyone,

> It's been a hard week, Dasia is sicker than ever, today she

woke up with the biggest red puffy eyes, and they were glued shut.

But, the good news is, we finally have a plan. I basically told the

GI doctor that I really wanted a g-tube for her, explaining the

vicious cycle of her getting sick then not eating, then never getting

better because her body isn't getting what it needs to fight off

illness. So Feb 2nd she's scheduled for an endoscopy and g-tube, 3

days before her B-Day! Oh well, it's too important.

>

> However, our appt with Endo was very disappointing. She's not an

advocate for Periactin, and when I asked about GH, she said Dasia

isn't very short, (she's about 5 graph squares below the 3rd%.) She

said, if we did try GH, it would be a trial period later on, after

watching her growth velocity, then see if it would even work for

her. I know Dasia has a lot of weight to gain still, I just need to

make sure I have the right Endo on board. I've now learned, there is

only one Dr who is set apart from the rest.

> I know the g-tube will work wonders for her growth all the way

around, so I'll just be happy with that for now, and make sure when

Dasia has gained the weight, and her height starts to level off,

we'll be on our way to NYC. Considering age and weight are not an

issue, can anyone tell me, for how long the child's height is at a

plateau, before they decide to start GH? Thanks!

>

> Mom to Dasia

>

>

>

> ---------------------------------

> Yahoo! Photos

> Ring in the New Year with Photo Calendars. Add photos, events,

holidays, whatever.

>

>

[Guest guest]

- I am SO glad you posted an update on Autumn. I've been

meaning to e-mail you privately and haven't taken the time quite

honestly. I am equally glad to hear that Autumn is doing so well.

As you know - we have been going through similar issues with Ian and

I want to tell you that Ian has been doing FABULOUSLY with the NG

tube and we are confident that he will probably do well considering

with the G-tube. Ian too has gained a much needed pound and he too

looks and acts better. It is so nice to see my son back to

normal!! He is so much happier and he is enjoying life again - that

makes me happy. It is such a relief to hear Autumn doing so well.

Did she ever get the hiccups while on the NG tube? Just curious. I

haven't noticed any air bubbles in Ian's bag/tube - but, he's been

getting them a lot lately. Just curious.

Thanks again for the update - I've been thinking of her lot's.

- the G-tube is a tough decision. You know, I waited an

entire year to decide. I had 3 physicians (an Endo, GI doc, and

Pediatrician) tell me in the last year that Ian needed one and I

waited - hoping him eating volitionally would be enough. It wasn't

and I have just met a 3rd physician (Endo) who thinks it is a good

idea. I feel very confident in our decision and seeing what the NG

tube has done for Ian confirms my decision even more. No matter

what you decide - it's your decision and as long as you feel

comfortable - you will know in your heart you have done the right

thing. Trust me on that <grin>. My best to you both.

- H

RSS-Support , " anderkat3 " <anderkat3@y...> wrote:

>

> Hi . I am sorry you are having a tough time. Dasia and

> Autumn are very similar in size and her docs are all for GH, I

guess

> it just depends on the doctor. Search until you find the right

one.

> Also, I know the g-tube decision is such a hard one. I was so

beside

> myself when we had to decide for Autumn. But now 2 mos into it I

am

> so amazed at how well she is doing. She is so vibrant and

> energetic. She is really trying to talk more, she is healthier

than

> ever and has not really been that sick since she was in teh

hospital

> before her tube placement. She was 16 lbs then and is close to

but

> not yet 18 lbs now (She's upper 17's lbs (no clothes), has also

lost

> a few oz). She is still underweight for length but she is such a

> different kid now. Everyone is just so amazed at the difference.

It

> did take a month to even start noticing much difference. It is

slow

> but steady. Winter sickness is no longer a scary thought. She

has

> had ear tubes for chronic infections and no infections since they

> were placed, an athsma preventative everyday helps her breathing,

and

> a g-tube to keep her nourished and boy is she thriving. On the

days

> she isn't taking what she needs to we just do one or more feeds.

My

> oldest just got sick tonight and has a fever. This is the first

time

> I am not worried Autumn will be in teh hospital if she gets sick

> too! Even my husband who was so wary of the tube is just amazed

how

> well she is doing. It was funny, today I called and made an appt

> for her at the ped for a 2 yr well visit and although a large

> practice with many docs, we are well known becasue of all the

> problems. The receptionist said " wow, we havn't heard from you in

a

> while. She must be doing really well! " It was a good feeling!

Good

> luck to you with everything!

>

> mom to Autumn RSS almost 2, Summer SGA 6 mos, Ocean 3.5

> yrs, Skye 7 yrs

>

>

> >

> > ,

> >

> > I'm so glad that the GI decided to go along with the g-tube. I

> > think that Dasia needs it and will be so much better off for

it.

> > Now you just have to manage her health until then. It's only

three

> > weeks away. Just do whatever you can to get through this time.

> >

> > Did you discuss the ketone issue with both doctors? Even with

the

> g-

> > tube you are going to have to keep an eye on them. Even if she

has

> > the g-tube, if she cannot tolerate the feeds, you will have to

do

> > the hospital routine again. Make sure the GI and/or endo are on

> the

> > same page with you on that one. It will be more important than

> > ever, okay?

> >

> > I don't know the exact timeline for waiting until starting gh

once

> > catch-up growth is achieved. Don't even worry about that. You

> will

> > have the tube placed, work up to the proper amount of calories

that

> > she needs and then see the catch-up growth start to happen. It

will

> > not occur overnight, though. We are talking months here. What

you

> > will see is Dasia will blossom before your eyes. Her eyes will

> > become brighter, her behavior will change and she will fill

out.

> > You will just know it is working. She will start to grow, too,

but

> > by then you will be on your way to, or have plans to see, Dr. H.

> who

> > will lay out the plan.

> >

> > The other thing is that the endo did not totally refuse the gh

> > idea. He did say he would consider trying it, but not to expect

> > great results. He will see that it will work and will allow you

to

> > continue. Just give it time.

> >

> > Keep my phone number handy in case you need to talk again

> >

> > Jodi Z

> >

>