Re: Mickey Vs. Microinvasive Button

[Guest guest]

Reglan. Is anyone familiar with this drug?

We use reglan also in addition to prilosec. Maya did have a fundo, but has no problem vomitting still. She has significant gastritis still also. Anyhow, the reglan helps to empty the stomach more quickly and therefore helps reduce reflux. We do see more side effects from the reglan (this from a kid who never has side effects from meds). Maya's fundo was done laparascopically, therefore less invasive and shorter surgery, is that an option there? I know not all hospitals are able to do them.

Holly

[Guest guest]

Hi Amie,

Miranda, who is 6 years old, has used a Mickey on and off for years. I am very happy with it. Its also low profile and very easy to use and change. I am attaching a photo of Miranda when she was 2 when you can see the button ( and her fundo scar for that matter)

I will warn you, even if you opt to try the nissen, it doesn't always work. Miranda had her first one when she was 15 months and was back to the same problems 2 months later. We opted to have it redone when she was 5 1/2 due to respiratory problems. She is again throwing up and back where we started. One thing I might suggest is a J-tube through the G stoma ( G-J tube) Its a small procedure but much less invasive then the fundo. The one problem though with these tubes is they will sometimes float back to the stomach which requires it to be replaced again. ( usually done in endoscopy or radiology) But the advantage is this way you are not feeding into the stomach and therefore there is less to reflux up. One other disadvantage is you have to feed slow on a pump, no bolus feeds.

I hope this all makes sense.....I am tired....If you have any questions please feel free to email me.

-- Mickey Vs. Microinvasive Button

Hi All,Just got back from St. Louis with Audrey and I feel like we really haven't accomplished anything. The doctor increased her dosage on the prevacid and added a medication called Reglan. Is anyone familiar with this drug? They also told us that Audrey's button is worn out already and needs to be replaced. They want us to go with the Mickey instead of the Microinvasive button, but Doyle and I would rather stick with the type she has now. The button that Audrey has now is a soft and flexible and lays almost flat against her tummy. If anyone has any suggestions, please feel free to share. Doyle and I are getting very frustrated with everything that is happening. Oh, yeah, to top things ... they told us that Audrey's reflux is so bad that she needs to have a fundoplication done but she is so weak that they said she is not a candidate for this surgery because she would never make it through the surgery. That was the icing that topped the cake for me today. Excuses my language, but this has been a real pisser of a day.Talk more later. Amie ( Mommy to Audrey, 22 Months...TODAY)Please contact mito-owner with any problems or questions.

[Guest guest]

Amie,

So sorry things are not going well. I dont know about the buttons so cant help there...sorry.

Know that I am continuing to pray for all of you.

Horsley

Mickey Vs. Microinvasive Button

Hi All,Just got back from St. Louis with Audrey and I feel like we really haven't accomplished anything. The doctor increased her dosage on the prevacid and added a medication called Reglan. Is anyone familiar with this drug? They also told us that Audrey's button is worn out already and needs to be replaced. They want us to go with the Mickey instead of the Microinvasive button, but Doyle and I would rather stick with the type she has now. The button that Audrey has now is a soft and flexible and lays almost flat against her tummy. If anyone has any suggestions, please feel free to share. Doyle and I are getting very frustrated with everything that is happening. Oh, yeah, to top things ... they told us that Audrey's reflux is so bad that she needs to have a fundoplication done but she is so weak that they said she is not a candidate for this surgery because she would never make it through the surgery. That was the icing that topped the cake for me today. Excuses my language, but this has been a real pisser of a day.Talk more later. Amie ( Mommy to Audrey, 22 Months...TODAY)Please contact mito-owner with any problems or questions.

[Guest guest]

Amie,

I'm sorry that things have been difficult with the buttons issues

and all. I know that has a mic-key. I don't know about the

microinvasive. I know that I wish that hers was more flush with the

skin. I do know about the reglan. She was started on this about 6

months or so ago. She had major bowel issues. She would have a BM

every 3-4 days with great difficulty. We put her on a low dose and

have increased it slowly. She is now on 1.2ml 4xday. It seems to

help. She now has bms every day. I haven't had to do an

enema/suppository in quite a few months. She is also on pepcid 2.5ml

2xday. This has helped with the other stomach issues. Good luck!

Dawn

Happy 22 months Audrey!!!!

[Guest guest]

I am sorry to hear how bad things have been going for you lately. I think of Audry quite a bit throughout the week. I just wanted you to know that prayers are being sent heavenward for her. We have the mic-key and it is a very small one compared to most of the mic-keys out there so if she has to change, ask for the tiniest size possible. Take care. Darla: mom to Asenath (3) Mickey Vs. Microinvasive Button Hi All,Just got back from St. Louis with Audrey and I feel like we really haven't accomplished anything. The doctor increased her dosage on the prevacid and added a medication called Reglan. Is anyone familiar with this drug? They also told us that Audrey's button is worn out already and needs to be replaced. They want us to go with the Mickey instead of the Microinvasive button, but Doyle and I would rather stick with the type she has now. The button that Audrey has now is a soft and flexible and lays almost flat against her tummy. If anyone has any suggestions, please feel free to share. Doyle and I are getting very frustrated with everything that is happening. Oh, yeah, to top things ... they told us that Audrey's reflux is so bad that she needs to have a fundoplication done but she is so weak that they said she is not a candidate for this surgery because she would never make it through the surgery. That was the icing that topped the cake for me today. Excuses my language, but this has been a real pisser of a day.Talk more later. Amie ( Mommy to Audrey, 22 Months...TODAY)Please contact mito-owner with any problems or questions.

[Guest guest]

Hope that things start to look up for you guys.. Blake is on Reglan

for his intestines, but i have read it is for reflux as well. Blake

also has a Mickey g-tube, and although that is the only one we have

ever used, I like it, and have no problems with it. It does stick

out farther than the one you have now, but seems to hold up good.

Let us know what you decide..

carolynn

> Hi All,

> Just got back from St. Louis with Audrey and I feel like we really

haven't

> accomplished anything. The doctor increased her dosage on the

prevacid and

> added a medication called Reglan. Is anyone familiar with this

drug? They also

> told us that Audrey's button is worn out already and needs to be

replaced.

> They want us to go with the Mickey instead of the Microinvasive

button, but Doyle

> and I would rather stick with the type she has now. The button

that Audrey

> has now is a soft and flexible and lays almost flat against her

tummy.

> If anyone has any suggestions, please feel free to share.

Doyle and I

> are getting very frustrated with everything that is happening. Oh,

yeah, to

> top things ... they told us that Audrey's reflux is so bad that she

needs to

> have a fundoplication done but she is so weak that they said she is

not a

> candidate for this surgery because she would never make it through

the surgery.

> That was the icing that topped the cake for me today. Excuses my

language, but

> this has been a real pisser of a day.

> Talk more later.

> Amie ( Mommy to Audrey, 22 Months...TODAY)

[Guest guest]

Amie,

I was told the same thing about my son for a fundoplication surgery. He was

dyeing without it because he spit up everyting that he took in. We had to take

the chance and it went great. He was a trooper. And that was before they did

most of them by laproscopic, so he was cut from top to bottom. Now that it is

laproscopic, they still think it is too dangerous? We also have the

microinvasive tube. I like it much better as it is flexible and lays flat.

Changing it

out is alot more difficult though. I guess not difficult but more painful for

the kiddo. They had to jerk it out to put a new one in and with the Mickey they

just deflate the balloon. I thank god for the fundo every day as it saved his

life, but it was NOT an easy decision for us as I researched it for a year

before deciding to do it, and I chose the partial wrap vs. the full wrap as I

read it was alot less difficult to heal or deal with post op. Wretching was not

as bad is what I read. Good Luck with your decision, and I would inquire if

they were talking about doing it laproscopic is too invasive? If they don't do

it

that way there, I would go somewhere that does because most hospitals do.

Heidi Harmon

Parent Policy Partner

Kansas City Regional Center

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