Re: Dr Stanhope

July 30, 2005

Brigitte,

I say somewhat embarassingly that we avoided Max's having a g-tube

for about 4 years. Instead we had him fed with an ng tube. We were

terrified of the surgery and the scarring and pain that he would

experience. We did not want him marked up anymore (he had already

had two previous surgeries, one for malrotated intestines; the other

for removal of tonsils) and I was just nauseated by the thought of a

g-tube. He was also eating fairly well for him at the time, but not

consuming enough calories to grow or gain weight and struggling with

hypoglycemia, so we kept using the ng tube and pump. We also did

not know anyone else who had a child like Max with a g-tube. The

only ones we had seen were severely delayed and in really bad shape.

Were we ever WRONG about waiting so long! We finally gave into Dr.

H's repeated requests and scheduled the surgery. I was a wreck and

it turned my stomach to look at it for the first few days. But one

things healed and Max felt better, it was like a huge weight was

lifted off of my shoulders. I no longer had to push a tube down his

nose, no one could see the tube, and Max was so much happier!

I do understand how you feel. It is such a difficult decision to

make and you don't want to lose ground with what you have

accomplished orally. But the relief you will feel after the surgery

is worth it. No longer will you have to worry about getting enough

calories into her. You won't worry about hypo-glycemia at night.

You won't have to struggle with making her eat. And she will begin

to gain weight, have more energy and GROW!!!

It IS possible to have a g tube and still eat orally. You may see

some setback at first, but over time you will be able to work out a

balance and she will respond. And the tubes are so much better now

than they were when Max was younger.

Please seriously consider what Dr. Stanhope said. He is such a

knowlegable, gentle and kind man. He is also not too aggressive and

knows what he is talking about. AND just know that you have all of

us on this listserve to help you through it. You can do it. And

you'll be so glad you did.

Jodi Z

July 30, 2005

Brigitte,

We used an ng for almost 2 years and squeezed a bottle then a medicine

dropper for another 5 yrs! He started having so much reflux, if he'd

cough at the end of a feeding, it would all come up and we'd have to start

over for another 1/2-1 hr in front of a video! And he only weighed 20 lbs

the month before his 7th bday, even though he was generally healthy

otherwise (except whenever he got a vomiting flu, he had to go to the

hospital because at that thinnesss, <1 percentile weight/height, he was in

danger of dehydrating quickly).

I had been really cautious about surgeries because of hearing about bad

experiences. But I think the g-tube surgeries have gotten so much better.

We found an excellent surgeon in Denver (Dr. Rothenberg) who place a g-tube

and fundoplacation (to keep him from vomiting too easily), all

endoscopically through 4 half-inch incisions. SO he has very little

scarring (when he gets chest hairs, they won't be noticeable at all). And

his life is so much fuller without the time and power struggle of having to

eat when you weren't born with much of an appetite! OH, and we also

started the growth hormone at the same time, even though this isn't what

Dr. H suggests. I have absolutely no regrets about this, because when TIm

was on high cals on an ng tube, he would constantly vomit out previous

feedings from not using nearly as many cals as the 'catch-up' calculations

suggested. THis is another reason I wasn't eager to get the tube and fundo

- I felt he would get a lot of internal organ pressure from trying to

follow such aggressive feeding perscriptions when his body couldn't use

them. He already got the same number of cals/kg/day through our other

feeding techniques that he tolerated through the ng and was still tiny

(although it took forever to get it in). I was glad to be able to do both

g-tube and a great fundo in 1 surgery and not have to keep re-opening him

up, and yet I was also happy to get his body to use the extra cals right

away (well, about a month later when he went on GH).

If I had another RSS child with the appetite problems, I think I'd go right

back to Dr. Rothenberg and get the surgery ASAP.

Inga

At 03:40 PM 7/30/2005 +0000, you wrote:

>Hi Everyone

>

>Yesterday we had our first appt. with Dr. Stanhope at Gt Ormond Street

>Hospital, He is such a lovely man and the first doctor we have seen

>that can actually help and knows a lot about RSS. He wants to admit

>Bobbi for 2-3 days to do blood sugar tests and for us to see a

>dietitian & surgeon as he felt that Bobbi would benefit from a G tube,

>as in his words 'her feeding has been diabolical from birth' and she

>needed far more calories than she currently has, which is about 500cal

>a day at the moment. So we are now having to think hard about having a

>tube placed or do I struggle on trying to get her to eat/drink more?

>everything about a G tube scares me to death (the surgery, and also

>how she will react to it) I would really appreciate any input on this

>subject, from all those who have been through the same experience or

>who are against it.

>

>Brigitte (mum to Bobbi 16.5months, 13lb 6oz, 68.5cm, Reflux,

>constipation & DGE)

>

July 30, 2005

Brigitte,

I am so glad you got to see Dr. Stanhope, a doctor that understands

RSS! From what I have heard he is a great doctor and I heard him

speak at the Convention last year and I was impressed with him. He

seems very nice.

Anyway, you wanted some feedback on people with the tube

experience! ) I guess you would say I qualify here. has

had some sort of tube since birth. He started out with an NG tube

because everyone was hoping he would begin to be able to eat on his

own. The NG was terrible for us. It just drove crazy and he

pulled at it constantly. I know also that it was making his reflux

worse, and had no desire to put anything in his mouth since it would

bother his throat. He would spit up all the time. At almost 6

months old, he had the g tube placed. He did have a problem with the

surgery due to hypoglycemia. We didn't know had RSS at that

time, and didn't realize that hypoglycemia could have been an issue.

But, when he came back up to his room he was as pale as it gets and

very lethargic. I just thought it was all the drugs in him. He

struggled for along time to wake up. You could tell he wanted to,

but in hindsight we understand that his blood sugar was way too low

at that point. So, make sure to monitor that if you decide to have

one placed.

's tube site healed very well and we have had no problems with

it. I was scared to mess with it too much, too. But, I made myself

and I kept it clean and dry while it was healing. To this day, he

has had no problems with it at all and has a beautiful site. For us,

the tube was not an option. But, you have a choice. In reality, it

may be a huge struggle to get Bobbi to eat more than what she is

getting now. Does she ever act like she could eat more? She may not

want to, and then it will be frustrating for you because in your

heart you know she needs to be eating more and getting more

calories. But, she could simply be too full, and then you pushing

her could give her a negative outlook on eating. I don't know that

for sure, but I am sure it is a possiblity. Also, if she has a tube,

you will have control over what she is taking in. And, giving

medicine is so much easier when there is a tube to put it in. On the

other hand, cannot handle g tube feeds. We have been back and

forth between a g tube and a j tube. He is very volume sensitive,

and we still even have trouble with j tube feeds, but he does better

with this type of tube over the one that goes into his belly.

Yes, there is a sense of uneasiness with the whole surgery process

and the taking care of a tube, but you have to weigh out your

options. Go with what your gut tells you. I am sure this would be a

very hard decision to make, but understand that feeding tubes aren't

bad. It is just going to give her a little assist to maybe get

calories in her while she sleeps. I am sure you will be able to find

a feeding regimine that works so that she will still eat on her own.

Let us know what you decide. And, if I canhelp further, feel free to

eamil me at rj rollison @adelphia.net (no space).

Take care,

Jodi R.

, 3, RSS, J tube, 23 lbs. 14 oz.

> Hi Everyone

>

> Yesterday we had our first appt. with Dr. Stanhope at Gt Ormond

Street

> Hospital, He is such a lovely man and the first doctor we have seen

> that can actually help and knows a lot about RSS. He wants to

admit

> Bobbi for 2-3 days to do blood sugar tests and for us to see a

> dietitian & surgeon as he felt that Bobbi would benefit from a G

tube,

> as in his words 'her feeding has been diabolical from birth' and

she

> needed far more calories than she currently has, which is about

500cal

> a day at the moment. So we are now having to think hard about

having a

> tube placed or do I struggle on trying to get her to eat/drink

more?

> everything about a G tube scares me to death (the surgery, and also

> how she will react to it) I would really appreciate any input on

this

> subject, from all those who have been through the same experience

or

> who are against it.

>

> Brigitte (mum to Bobbi 16.5months, 13lb 6oz, 68.5cm, Reflux,

> constipation & DGE)

August 3, 2005

Hi Brigitte,

We have seen Dr Brain, one of Dr Stanhope's colleagues and are scheduled to have

some one day tests at Great Ormond Street on 15th August. She never asked us

about calories etc. and we had to push for any action at all. Although she was

helpful once pushed, I'm geting worried that she doesn't know enough about RSS

or is just too busy. As you know it seems very difficult to get an appointment

with Dr Stanhope, we are thinking about trying to see him privately.

Do you think Dr Stanhope's recommendation of the G tube was because of Bobbi's

reflux, difficulty feeding or lack of calories. My daughter Maddie is 10

months, 11lbs 4oz and has only put on a few oz in the last 2 months, yet she

seems to love food, always has lots of energy and eats about 600-700 cals on a

good day.

I know what you mean about the G tube, surgery generally seems scarey, Maddie

recovered very quickly from her cleft palate operation she cried for 2 hours

inconcolably directly after the operation.

Thanks for your help,

Gillian

brigitteforeman wrote:

Hi Everyone

Yesterday we had our first appt. with Dr. Stanhope at Gt Ormond Street

Hospital, He is such a lovely man and the first doctor we have seen

that can actually help and knows a lot about RSS. He wants to admit

Bobbi for 2-3 days to do blood sugar tests and for us to see a

dietitian & surgeon as he felt that Bobbi would benefit from a G tube,

as in his words 'her feeding has been diabolical from birth' and she

needed far more calories than she currently has, which is about 500cal

a day at the moment. So we are now having to think hard about having a

tube placed or do I struggle on trying to get her to eat/drink more?

everything about a G tube scares me to death (the surgery, and also

how she will react to it) I would really appreciate any input on this

subject, from all those who have been through the same experience or

who are against it.

Brigitte (mum to Bobbi 16.5months, 13lb 6oz, 68.5cm, Reflux,

constipation & DGE)

August 3, 2005

Hi Gillian,

I think we were just lucky that Dr. Stanhope was in clinic the day we went, we

saw another Dr. first who took our notes & history and then waited around for a

while to speak to him. I think he said to think about G tube for Bobbi becasue

of difficulty feeding and for extra calories, but to be honest we didn't really

talk that much about her feeding other than it has been a struggle but is

getting easier, it was me who brought up the amount of calories after he had

suggested G tube. He is good though and I would try to get to see him if you

can, is a lovely caring man.

Bobbi's weight slowing quite a bit from 10 months onwards I like it does

naturally anyway, and now it has considerably decreased due to her bum shuffling

and generally being more active. Is Maddie moving about yet at all?

We are still waiting for a date when Bobbi will go in for tests so please let me

know how you get on. Maddie weighs more than Bobbi did at 10 months and is

taking in more calories, what does Maddie eat/drink at the moment?

Hope to hear from you again soon, Take Care

Brigitte

Re: Dr Stanhope

Hi Brigitte,

We have seen Dr Brain, one of Dr Stanhope's colleagues and are scheduled to

have some one day tests at Great Ormond Street on 15th August. She never asked

us about calories etc. and we had to push for any action at all. Although she

was helpful once pushed, I'm geting worried that she doesn't know enough about

RSS or is just too busy. As you know it seems very difficult to get an

appointment with Dr Stanhope, we are thinking about trying to see him privately.