Re: STILL SEARCHING

[Guest guest]

Hi, I'm Terry Schleicher. My daughter is 5 and has CHARGE. We

live in Owings, land.

On Mon, 20 Nov 2000 21:14:42 -0500 mary saunders

writes:

>I AM STILL CURIOUS TO SEE WHERE THE REST OF OUR CHARGE KIDS LIVE.

>I HAD PUT A POST ON A COUPLE OF WEEKS AGO ASKING TO HAVE PEOPLE POST

>WHERE THEY LIVE AND THE AGE AND SEX OF THEIR CHILD WITH CHARGE.

> I HAVE GOT APPROXIMATELY 40 RESPONSES TO IT, AND ALSO HAVE

>GOTTEN RESPONSES FROM PARENTS WHO DIDN'T HAVE A CLUE THAT THEIR WERE

>OTHER KIDS IN THEIR STATE WITH CHARGE.

> IF U HAVEN'T RESPONDED YET, WILL U PLEASE TAKE THE TIME TO DO

>IT. IT HAS BEEN A HELP TO ALOT OF US THAT HAVE BEEN EITHER LOOKING FOR

>OTHER CHARGERS IN OUR STATE, CHARGERS THE SAME AGE, OR THE SAME SEX.

> ANY PROFESSIONALS OR GRANDPARENTS THAT R ON THE LIST. FEEL

>FREE

>TO POST WHERE U R LOCATED TOO.

> THANKS IN ADVANCE FOR YOUR RESPONSES AND YOUR TIME.

>

>MARY IN PA, MOTHER OF GRANT (12), BLAKE (12), AND TROY (8) CHARGER

>

>-------------------------- eGroups Sponsor

>

> " 5th CHARGE Syndrome International Conference, Indianapolis, Indiana,

>July

>20-22, 2001. Information will be available first in CHARGE Accounts,

>the

>CHARGE Syndrome Foundation's newsletter. "

>

>For information about the CHARGE Syndrome

>Foundation or to become a member (and get the newsletter)

>please contact marion@... or visit

>the CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

>

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[Guest guest]

Hi I'm Heidi Thimmesch my daughter, Hannah who is 7 has CHARGE we live in

Sheboygan Falls, WI

[Guest guest]

Hi I am , my daughter is Rose, she is going to be six weeks old on

Friday. we live in East Lansing, Mi. I also have a son, Henry who is 2 1/2

years old, and my husband is Dan. My aunt , from Texas has been posting

on this list--Hi !!

Rose has some swallowing issues and is beening tube fed thru an og tube. I

bedlieve it will be a long time until she will swallow safely. I know many

of you have experience with this, would you mind sharing with me about your

experiences, as far as pros and cons of having a tube going into the stomach

and also things you have done to help with this issue.

Thank you,

Beckett

________________________________________________________________________________\

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[Guest guest]

Marie and All

My name is Campanale and I have a daughter with cHARgE. Her name is na Sue Campanale and is 15 months old. She was born 8/18/99 and spent her first 6+ months in the hospital. My wife is Sue and our son is who is 4½ yrs old.

We live in ville, FL

Campanalejohncampanale@...http://members.truepath.com/hedgebuilder0074/brianna.htmlhttp://members.truepath.com/hedgebuilder0074/newbrianna.html<><><><><><><><><><><><><><><><><><><><><><>HEDGEBUILDERS---Protecting YOUR family and you...... www.hedge.org/sr/0074.htm "Making the Internet Safe for Work and Play"<><><><><><><><><><><><><><><><><><><><><><>

STILL SEARCHING

I AM STILL CURIOUS TO SEE WHERE THE REST OF OUR CHARGE KIDS LIVE.I HAD PUT A POST ON A COUPLE OF WEEKS AGO ASKING TO HAVE PEOPLE POSTWHERE THEY LIVE AND THE AGE AND SEX OF THEIR CHILD WITH CHARGE. I HAVE GOT APPROXIMATELY 40 RESPONSES TO IT, AND ALSO HAVEGOTTEN RESPONSES FROM PARENTS WHO DIDN'T HAVE A CLUE THAT THEIR WEREOTHER KIDS IN THEIR STATE WITH CHARGE. IF U HAVEN'T RESPONDED YET, WILL U PLEASE TAKE THE TIME TO DOIT. IT HAS BEEN A HELP TO ALOT OF US THAT HAVE BEEN EITHER LOOKING FOROTHER CHARGERS IN OUR STATE, CHARGERS THE SAME AGE, OR THE SAME SEX. ANY PROFESSIONALS OR GRANDPARENTS THAT R ON THE LIST. FEEL FREETO POST WHERE U R LOCATED TOO. THANKS IN ADVANCE FOR YOUR RESPONSES AND YOUR TIME.MARY IN PA, MOTHER OF GRANT (12), BLAKE (12), AND TROY (8) CHARGER"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

-

My daughter is almost 3. She also had swallowing difficulty as

an infant. She has been totally orally fed now for almost 2 years

and had her feeding tube removed in July '99. She had an NG tube

at first (she did not have choanal atresia) and then had a Gtube placed.

We agonized over the Gtube because we hoped that she would learn to swallow.

We gathered info and investigated all our options for a few months before

we decided to go ahead with it. The doctors also suggested a Nissen

Fundoplication be done at the same time as the Gtube because Aubrie had

severe GE reflux. Does Rose have problems with reflux too?

We couldn't decide what to do and, as I said, we really agonized over

the decision. After much contemplation, we decided to get the Gtube

but to wait on the Nissen. We wanted to try to manage the reflux

with medication. If it didn't work, we could always do the surgery

later. While it would be convenient to do them together, we weren't

convinced that the two had to be a package deal.

In the end, Aubrie was a success story and we were happy with our decision.

Her reflux continued to be a difficult problem for about a year.

We managed it with medication. We also positioned her upright for

feeding, kept her in a Danny Sling in bed to keep her from tangling in

her tubing and from going upside down in the bed (we raised the head of

the bed), and refrained from boisterous activity that would cause vomiting.

The vomiting controlled our life for that year, but when it was over, it

was over. She had a normal stomach and no reflux.

I'm not sure what your situation will be, but I wanted to share our

story with you so that you will know that you can take time to investigate

before you make these big decisions. Some of our kids' medical decisions

are life-threatening and do have to be made in short time limits.

But for those that aren't, it is ok to take time to consider all options

and make a decision you can live with. The doctors will think they

have the best idea in mind, but you have the right to question them and

make your own decision that might be contrary to theirs.

I know the OG tube is agonizing for you and Rose. Putting that

NG tube down Aubrie's nose was one of the worst things I've had to do.

If I could go back, knowing what I know now, I would have the Gtube placed

right away. However, back then, I didn't know what I know now, so

we waited and worried and questioned. The Gtube was not a bad thing.

It was a pain, but much less of a pain than an OG or NG tube. After

what you've been living with, you will love a Gtube.

Do you have a feeding pump? We found the pump to be a wonderful

help in giving continuous feeds as well as bolus feeds. Aubrie needed

to get her food at a slow rate and the pump could do that much better than

I.

I don't know if any of this is helpful. It's late and I'm tired

so I apologize for rambling. Good luck in working on the feeding/swallowing

thing!

Michele

mom to Aubrie (3 next week) CHaRgE and (9 yr.), wife to DJ,in

IL

west@...

[Guest guest]

,

WELCOME!!! Finally, we've heard so much about you all!!!

I am so pleased to hear Rose is home from hospital now, your Aunt has kept us up to date from the get-go.

Here are my opinions on the tube feeding thing:

My daughter was OG fed for 5 months (we took that tube out and in 6 times a day! UGH!) then got her g tube & nissen fundoplication (stomach wrap to prevent reflux) in the 6th month. What a relief to get the nutrition in and not have to worry about it. 6 months after that we moved to a button which is what we still currently use, it is very nice and discreet. The way I look at it is OG feeds are not a long term possibility (it'd be pretty uncomfortable after a LONG time). It just makes sense to get the tube in, so you can get the nutrition she needs in to get healthy, grow & develop. That takes a lot of pressure off if they are getting what they need that way. Then, you can always work with oral stimulation at first if it isn't safe to swallow, then work on the oral feeds as you go. We are still working on it with Kennedy, she is primarily tube fed, she is just having tastes of things still. Not enough to provide adequate nutrition though.

Good luck with everything , if you have anymore questions, feel free to shoot!!!

Hugs to Rose,

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

Re: STILL SEARCHING

Hi I am , my daughter is Rose, she is going to be six weeks old on Friday. we live in East Lansing, Mi. I also have a son, Henry who is 2 1/2 years old, and my husband is Dan. My aunt , from Texas has been posting on this list--Hi !!Rose has some swallowing issues and is beening tube fed thru an og tube. I bedlieve it will be a long time until she will swallow safely. I know many of you have experience with this, would you mind sharing with me about your experiences, as far as pros and cons of having a tube going into the stomach and also things you have done to help with this issue.Thank you, Beckett_____________________________________________________________________________________Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

,

It was difficult at first when had his g-tube placed. It was

difficult dealing with

it emotionally. Afterall, it wasn't what my daughter and her husband

expected with a new child. But now everything is as normal as can be. Josh

is 6moths old. His g-tube has been changed to a button. It is less

noticable than the g-tube. You just hook it up, feed, then disconnect.

We just think of Josh as our burpless baby!!! He hasn't gained weight as

fast as we would like but formulas has changed and he is gaining a little at

a time. Now, there are no questions that this is the best thing for Josh.

It might be a little less convienent? than a bottle, but this is the way

things have to be for now.

Iris, mother & grandmother of chargers, Kriste and Josh

[Guest guest]

-

My daughter Berkeley is 18 mo, and tube fed. She was fed OG prior and it

was an awful experience for both of us. Berkeley's reflux was so bad that

she would throw up the tube 2-3 times during a 2oz feeding. In the

beginning she was being fed every two hours and I was constantly having to

re-place the tubing. After 6 weeks we decided that eating orally was not

going to come along quickly enough to keep putting all of us through that.

Having the g-tube put in was the first decision we had to make regarding

surgery. Hindsight is of course 20/20. If I had know then the diffucult

decisions that lay ahead for us I wouldn't have agonized over that first one

so much. Once the g-tube was in (they did a nissen fundo at the same time)

I knew that we had made the right decision for us. Berkeley had only gained

4 oz in 6 weeks prior to putting in the tube. She didn't exactly pack on

the pounds afterwards either. But she did start to gain at a steady, albeit

slow, rate.

Today she is bolus fed 5 times a day. She gets 8oz at a time and we're

working on the oral feeding in between. (It's sort of joke with my mother.

When she calls and asks what I am doing, the answer is generally, " Feeding

Berkeley. " ) However she is making progress and the speech pathologist feels

like there is a good chance she'll be 100% oral by the time she's two. I

think that may be a bit optimistic, but I would like to see her prove me

wrong.

Best of luck with whatever decision you make.

P.S.

I thought it might interest you to know that unlike a lot of the kids

Berkeley has a perfectly fine swallow. She has never aspirated. The SP

says she suffers from " bad attitude " . I have learned to just be patient and

live by the mantra of so many others here: They will do it when they're

ready.

[Guest guest]

Michele,

Thank you for sharing your story it has really helped me. This may sound

strange but I am not sure if Rose has reflux. She has an OG, and for the

last 3days she had been coughing with feedings. Nothing comes up with her

cough but she sounds pretty gurgily back in her throat and she has an

increase in saliva. I am not sure if she has reflux or if the OG is

irritating her or a combination of the two. I spoke to the pediatrician

and she gave me a prescription for zantac, which I have not given yet.

Also, I think that we will be considering the stomach tube sooner rather

than later. I believe it will be a while, longer that 6mos at least, before

Rose will swallow, and she has been pulling at the OG and the tape keeps

coming off and the tube keeps coming out---so it seems that sooner would be

better. We do feed her using a pump so I am able to regulate the rate at

which it goes in, this is helpful.

Thanks again,

Beckett, mom to Rose 6wks-charge, and Henry 2.5

>

>Reply-To: CHARGEegroups

>To: CHARGE-List <CHARGEegroups>

>Subject: re: still searching

>Date: Tue, 21 Nov 2000 23:20:46 -0600

>

>-

>My daughter is almost 3. She also had swallowing difficulty as an

>infant. She has been totally orally fed now for almost 2 years and had

>her feeding tube removed in July '99. She had an NG tube at first (she

>did not have choanal atresia) and then had a Gtube placed. We agonized

>over the Gtube because we hoped that she would learn to swallow. We

>gathered info and investigated all our options for a few months before

>we decided to go ahead with it. The doctors also suggested a Nissen

>Fundoplication be done at the same time as the Gtube because Aubrie had

>severe GE reflux. Does Rose have problems with reflux too?

>

>We couldn't decide what to do and, as I said, we really agonized over

>the decision. After much contemplation, we decided to get the Gtube but

>to wait on the Nissen. We wanted to try to manage the reflux with

>medication. If it didn't work, we could always do the surgery later.

>While it would be convenient to do them together, we weren't convinced

>that the two had to be a package deal.

>

>In the end, Aubrie was a success story and we were happy with our

>decision. Her reflux continued to be a difficult problem for about a

>year. We managed it with medication. We also positioned her upright

>for feeding, kept her in a Danny Sling in bed to keep her from tangling

>in her tubing and from going upside down in the bed (we raised the head

>of the bed), and refrained from boisterous activity that would cause

>vomiting. The vomiting controlled our life for that year, but when it

>was over, it was over. She had a normal stomach and no reflux.

>

>I'm not sure what your situation will be, but I wanted to share our

>story with you so that you will know that you can take time to

>investigate before you make these big decisions. Some of our kids'

>medical decisions are life-threatening and do have to be made in short

>time limits. But for those that aren't, it is ok to take time to

>consider all options and make a decision you can live with. The doctors

>will think they have the best idea in mind, but you have the right to

>question them and make your own decision that might be contrary to

>theirs.

>

>I know the OG tube is agonizing for you and Rose. Putting that NG tube

>down Aubrie's nose was one of the worst things I've had to do. If I

>could go back, knowing what I know now, I would have the Gtube placed

>right away. However, back then, I didn't know what I know now, so we

>waited and worried and questioned. The Gtube was not a bad thing. It

>was a pain, but much less of a pain than an OG or NG tube. After what

>you've been living with, you will love a Gtube.

>

>Do you have a feeding pump? We found the pump to be a wonderful help in

>giving continuous feeds as well as bolus feeds. Aubrie needed to get

>her food at a slow rate and the pump could do that much better than I.

>

>I don't know if any of this is helpful. It's late and I'm tired so I

>apologize for rambling. Good luck in working on the feeding/swallowing

>thing!

>

>Michele

>mom to Aubrie (3 next week) CHaRgE and (9 yr.), wife to DJ,in IL

>west@...

________________________________________________________________________________\

_____

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[Guest guest]

,

I am sure that the tube at the back of the throat irritates them and would cause more saliva, I know Kennedy had reflux and you KNEW it was reflux! She also had a lot of spitty saliva in between feedings and I think it was from the tube. I think if Rose had reflux to any degree, you'd see some of it coming up and out. I'd be cautiously optimistic if nothing were coming out! Yay!

Mom to Kennedy 2.5yr old CHARGEr, 11, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

re: still searching>Date: Tue, 21 Nov 2000 23:20:46 -0600>>->My daughter is almost 3. She also had swallowing difficulty as an>infant. She has been totally orally fed now for almost 2 years and had>her feeding tube removed in July '99. She had an NG tube at first (she>did not have choanal atresia) and then had a Gtube placed. We agonized>over the Gtube because we hoped that she would learn to swallow. We>gathered info and investigated all our options for a few months before>we decided to go ahead with it. The doctors also suggested a Nissen>Fundoplication be done at the same time as the Gtube because Aubrie had>severe GE reflux. Does Rose have problems with reflux too?>>We couldn't decide what to do and, as I said, we really agonized over>the decision. After much contemplation, we decided to get the Gtube but>to wait on the Nissen. We wanted to try to manage the reflux with>medication. If it didn't work, we could always do the surgery later.>While it would be convenient to do them together, we weren't convinced>that the two had to be a package deal.>>In the end, Aubrie was a success story and we were happy with our>decision. Her reflux continued to be a difficult problem for about a>year. We managed it with medication. We also positioned her upright>for feeding, kept her in a Danny Sling in bed to keep her from tangling>in her tubing and from going upside down in the bed (we raised the head>of the bed), and refrained from boisterous activity that would cause>vomiting. The vomiting controlled our life for that year, but when it>was over, it was over. She had a normal stomach and no reflux.>>I'm not sure what your situation will be, but I wanted to share our>story with you so that you will know that you can take time to>investigate before you make these big decisions. Some of our kids'>medical decisions are life-threatening and do have to be made in short>time limits. But for those that aren't, it is ok to take time to>consider all options and make a decision you can live with. The doctors>will think they have the best idea in mind, but you have the right to>question them and make your own decision that might be contrary to>theirs.>>I know the OG tube is agonizing for you and Rose. Putting that NG tube>down Aubrie's nose was one of the worst things I've had to do. If I>could go back, knowing what I know now, I would have the Gtube placed>right away. However, back then, I didn't know what I know now, so we>waited and worried and questioned. The Gtube was not a bad thing. It>was a pain, but much less of a pain than an OG or NG tube. After what>you've been living with, you will love a Gtube.>>Do you have a feeding pump? We found the pump to be a wonderful help in>giving continuous feeds as well as bolus feeds. Aubrie needed to get>her food at a slow rate and the pump could do that much better than I.>>I don't know if any of this is helpful. It's late and I'm tired so I>apologize for rambling. Good luck in working on the feeding/swallowing>thing!>>Michele>mom to Aubrie (3 next week) CHaRgE and (9 yr.), wife to DJ,in IL>west@..._____________________________________________________________________________________Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com"5th CHARGE Syndrome International Conference, Indianapolis, Indiana, July20-22, 2001. Information will be available first in CHARGE Accounts, theCHARGE Syndrome Foundation's newsletter."For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Hi

My name is Corsini, my son is Sammy he is an almost 3 year old with

Charge. We live in Seattle Washington.