Re: Problems with new Mic-Key button-HELP!

[Guest guest]

Jocelyn,

I'm sorry to hear about this situation.

If the problem is with the tube, do you think there is any chance it has

to do with a sensitivity to the material it is made out of? Our

daughter always had a problem with the Mic-Key, but it was the lesser of

several evils in her case. IS there a chance that the PEG could be put

back in? DO you think that would help?

Very best wishes to find a solution soon.

Problems with new Mic-Key button-HELP!

Last week our eihgt year old CHARGE daughter recieved a Mic-Key

button, replacing the existing PEG tube she had. Prior to the

change Jordyn was tolerating bolus top ups well. Since recieving

the Mic-Key she has been vomitting after most of her top ups. We

have been venting air and have been cutting back the amounts she

recieves at each feeding. But we are still having problems with

vomitting. In fact she has lost about 3 pounds since the switch.

Her doctor's have suggested it is due to a flu virus, but she shows

no other symptoms. Our doctor's and home nursing support staff have

no real answers to our problem. Has anyone else experienced similar

reactions to a Mic-Key button? If so, what worked. We are desperate

for answers.

Sincerly,

Jocelyn Robbins

Membership of this email support groups does not constitute membership

in the CHARGE Syndrome Foundation.

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

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

_____

[Guest guest]

Jocelyn,

I'm sorry to hear about this situation.

If the problem is with the tube, do you think there is any chance it has

to do with a sensitivity to the material it is made out of? Our

daughter always had a problem with the Mic-Key, but it was the lesser of

several evils in her case. IS there a chance that the PEG could be put

back in? DO you think that would help?

Very best wishes to find a solution soon.

Problems with new Mic-Key button-HELP!

Last week our eihgt year old CHARGE daughter recieved a Mic-Key

button, replacing the existing PEG tube she had. Prior to the

change Jordyn was tolerating bolus top ups well. Since recieving

the Mic-Key she has been vomitting after most of her top ups. We

have been venting air and have been cutting back the amounts she

recieves at each feeding. But we are still having problems with

vomitting. In fact she has lost about 3 pounds since the switch.

Her doctor's have suggested it is due to a flu virus, but she shows

no other symptoms. Our doctor's and home nursing support staff have

no real answers to our problem. Has anyone else experienced similar

reactions to a Mic-Key button? If so, what worked. We are desperate

for answers.

Sincerly,

Jocelyn Robbins

Membership of this email support groups does not constitute membership

in the CHARGE Syndrome Foundation.

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

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

_____

[Guest guest]

We had problems like this when the button is the wrong size and its putting

too much pressure on the stomach.

Drew

Problems with new Mic-Key button-HELP!

>

>

> Last week our eihgt year old CHARGE daughter recieved a Mic-Key

> button, replacing the existing PEG tube she had. Prior to the

> change Jordyn was tolerating bolus top ups well. Since recieving

> the Mic-Key she has been vomitting after most of her top ups. We

> have been venting air and have been cutting back the amounts she

> recieves at each feeding. But we are still having problems with

> vomitting. In fact she has lost about 3 pounds since the switch.

> Her doctor's have suggested it is due to a flu virus, but she shows

> no other symptoms. Our doctor's and home nursing support staff have

> no real answers to our problem. Has anyone else experienced similar

> reactions to a Mic-Key button? If so, what worked. We are desperate

> for answers.

>

> Sincerly,

>

> Jocelyn Robbins

>

>

>

> Membership of this email support groups does not constitute membership

> in the CHARGE Syndrome Foundation.

> 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

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

> _____

>

>

[Guest guest]

Jocelyn,

I would have them check placement, can be done with an X-ray I believe or

easily by putting some barium into the tube and having a look. It might

just be a different feeling inside and may take her some time to acclimate

to it.

Good luck!

Weir

Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to

Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Problems with new Mic-Key button-HELP!

Last week our eihgt year old CHARGE daughter recieved a Mic-Key

button, replacing the existing PEG tube she had. Prior to the

change Jordyn was tolerating bolus top ups well. Since recieving

the Mic-Key she has been vomitting after most of her top ups. We

have been venting air and have been cutting back the amounts she

recieves at each feeding. But we are still having problems with

vomitting. In fact she has lost about 3 pounds since the switch.

Her doctor's have suggested it is due to a flu virus, but she shows

no other symptoms. Our doctor's and home nursing support staff have

no real answers to our problem. Has anyone else experienced similar

reactions to a Mic-Key button? If so, what worked. We are desperate

for answers.

Sincerly,

Jocelyn Robbins

Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

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

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

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

--

[Guest guest]

I always felt like tolerated less food when her new MicKey is

put in. I think it takes more room in her little stomach with the

balloon that holds it in place inflated fully.

But not to the extent that your Jordyn is experiencing.

G

> Jocelyn,

> I would have them check placement, can be done with an X-ray I believe

> or

> easily by putting some barium into the tube and having a look. It

> might

> just be a different feeling inside and may take her some time to

> acclimate

> to it.

> Good luck!

>

> Weir

> Mom to Kennedy 5 1/2 yr old with CHARGE, 14, 12 and wife to

> Graeme.

> New Brunswick, Canada

> Weir homepage: http://personal.nbnet.nb.ca/gweir

> CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

>

> Problems with new Mic-Key button-HELP!

>

>

> Last week our eihgt year old CHARGE daughter recieved a Mic-Key

> button, replacing the existing PEG tube she had. Prior to the

> change Jordyn was tolerating bolus top ups well. Since recieving

> the Mic-Key she has been vomitting after most of her top ups. We

> have been venting air and have been cutting back the amounts she

> recieves at each feeding. But we are still having problems with

> vomitting. In fact she has lost about 3 pounds since the switch.

> Her doctor's have suggested it is due to a flu virus, but she shows

> no other symptoms. Our doctor's and home nursing support staff have

> no real answers to our problem. Has anyone else experienced similar

> reactions to a Mic-Key button? If so, what worked. We are desperate

> for answers.

>

> Sincerly,

>

> Jocelyn Robbins

>

>

>

> Membership of this email support groups does not constitute

> membership in

> the CHARGE Syndrome Foundation.

> 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

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you

> may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

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

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>