Re: repeat fundoplication? swallowing issues? (LONG)

[Guest guest]

In a message dated 7/25/01 2:36:29 PM Pacific Daylight Time,

lappan@... writes:

<< In spite of having the nissen, she can easily burp and vomit.

>>

Then, most likely, the fundo is not patent. Have they checked the status of

the fundo, in light of her recurrent pneumonias? Our pulmonary docs here in

Seattle have always talked about the relationship of GERD (reflux) with

pulmonary disease and now it appears that they have always been the

enlightened ones. It sounds like your daughter is like , in that the

Prilosec (and other meds they each take) have probably regulated the acid pH

problem, but not the pulmonary/aspiration issue. I guess the tough question

is: Which carries more risk? A repeat fundo or continued pneumonias/lung

damage? sigh...a tough question

Dena

[Guest guest]

Hi Dena,

My daughter Miranda is 4 1/2 and had a fundo ( full wrap) done when she was 15 months. She does have a gtube for feeding, as she does not eat orally. She also does aspirate on thin liquids. We were instructed to thicken any thing she might drink to help that. She has had so many cases of pneumonia that I have last count. The last one being last week. No one has ever suggested redoing her nissen in spite of the fact she takes 20 mg day of prilosec as well as reglan for motility ( she did have a pyloroplasty) She is also on singulair and pulmocort nebs as well as albuteral as needed for her breathing.

In spite of having the nissen, she can easily burp and vomit.

repeat fundoplication? swallowing issues? (LONG)

Hi all,I hope this morning is one of hope and relative health for all of you! In any case, my son , (generalized dysautonomia, 33 hospitalizations, suspected mito) had another upper GI (barium swallow) yesterday to check the patency of his 6 year old Thal (partial wrap) fundoplication. I expected it to be normal, as all the others have been, although the pulmonary docs wanted it done because of his decreasing PFTs (lung function studies) and his continually "hazy" chest xrays. The barium went through okay and the fundo appeared patent, but then when they had him drink water as a follow-through, "lots of reflux" is what the radiologist said. So, they are talking a redo of his fundo. We were supposed to also have a swallowing/feeding study yesterday, since it often seems that is aspirating/choking from "above", but the speech therapist who does the studies was sick, so now we have to repeat the study. (a 3 hour drive/ferry each way...arggh).So, before meeting with the GI docs, and possibly surgeons ( had the fundo in KC and we are now in Seattle), I need some more info/input. Have any of your children had a fundo redone because of pulmonary issues? 's pH/acidity problems have been corrected with daily Prilosec and Gastrocrom, so I'm not worried about esophagitis, etc. anymore. But, the reflux/aspiration is obviously a problem. Yet, had severe Dumping Syndrome (and pancreatitis) after the last fundo and it was a nightmare. He lost 25% of his bodyweight (at age 4 1/2) and was very sick. If you have dealt with a repeat fundo, did you personally feel the benefits outweighed the risks, or not? did not have a GT or GJ tube placed with the last fundo (but did have NG tube feedings for several months with the Dumping Syndrome), but I imagine they would put one in this time because of the history. If you have had a fundo with a child who eats orally, did you also have a GT/GJ tube?Finally, how many of your mito kids aspirate from above? Food/drink only or secretions also? How do you handle that? 's brief sleep study (we're waiting for the full test) showed borderline abnormal RDI and obstructive sleep apnea, which the docs say may be secondary to the reflux also.Sorry this is so long, but appreciate your input.Dena, mom to , , naPlease contact mito-owner with any problems or questions.

[Guest guest]

In a message dated 7/26/01 5:45:49 AM Pacific Daylight Time,

juhlmann@... writes:

<< Every single thing the MD and I do we do

based on the premise that energy demands must not exceed energy

requirements. My kids still decompensate after surgeries that are one hour

or longer but never again have they like that time with Zachary. We know

to be watchful of each detail and intervene aggressively early on to

address any sign that they are becoming stressed.

>>

Thanks for the input Anne. Every bit helps in evaluating the situation.

What you and Zach went through is my biggest fear after the complications we

had last time. *I'm* actually the one asking about a GJ tube, since

got dumping syndrome after the last fundo and couldn't eat orally for several

months. (They put in a NG tube for nutrition, but that caused further

problems with motility issues.) I know the pulmonary risks for NOT doing the

fundo are serious, but *right now*, they don't limit him beyond his normal

energy (which is low already and not pulmonary related). He is also much

thinner (comparatively) than he was when he had his first fundo, so I worry

about him coming out of surgery/recovery period much more fragile also.

Dena

[Guest guest]

My son who is 9 now had a repeat nissen fundoplication done about 2 years

ago.He needed to have an open procedure rather than a laporscopic one which

makes things a lot more difficult. Surgery went perfect but the stress of

the surgery was too much metabolically for Zachary. He ended up in the

hospital for 5 months straight and came home a very different boy than how

he went in. He is much more medically fragile now.

You asked if the benefits outweigh the risks in my opinion. For my son

there have not been any benefits that I can see but it was a risk we had to

take at the time. Zach had a life threatening risk that necessitated it. I

suppose there is a great benefit in not worrying about that risk (which was

esophageal rupture).

You asked about placing a feeding tube in a child who eats orally. In our

case Zach was an oral eater but did also have a G tube to supplement

calories at night due to persistent vomiting. The G tube was redone at the

time of surgery. I was unsure how necessary this was given that he ate like

any other kid and this surgery was supposed to fix his vomiting, thus in

theory eliminate a need for supplemental tube feeds. We kept the G tube

simply as a precaution. In the end he needed a J tube and finally a central

line and remains IV fed for the most part. I would discuss this with the

doctor at length. At our hospital they do not routinely place G tubes with

nissen if the child eats orally.

What I learned is that at least for my kids surgery is not a good idea. My

kids can not deal well with long surgeries and the aftermath of that stress.

However, at times surgery is impossible to avoid and then it has been

critical for us to have a detailed plan in place to maximize energy delivery

while minimizing energy demands. Every single thing the MD and I do we do

based on the premise that energy demands must not exceed energy

requirements. My kids still decompensate after surgeries that are one hour

or longer but never again have they like that time with Zachary. We know

to be watchful of each detail and intervene aggressively early on to

address any sign that they are becoming stressed.

These are my experiences only.

Anne

repeat fundoplication? swallowing issues? (LONG)

If you have

> dealt with a repeat fundo, did you personally feel the benefits outweighed

> the risks, or not? did not have a GT or GJ tube placed with the

last

> fundo (but did have NG tube feedings for several months with the Dumping

> Syndrome), but I imagine they would put one in this time because of the

> history. If you have had a fundo with a child who eats orally, did you

also

> have a GT/GJ tube?

>

[Guest guest]

Hi I was wondering what a fundo is?? I have been reading some of the feeding topics and was wondering if anyone could help. My friend's son has Marfan syndrome. It is not a mito disorder but has a similar coughing and gagging spell. Twice he vomitted. He will cough and gag then put his fingers down his throat. He will do it every 5-10 min then he will stop for awhile does this sound similar to anyone? Could it be GERD?? How do they test for GERD? Thanks for the imput

Angel

[Guest guest]

HI, a fundo ( aka, nissen fundoplication) is a surgery that is done to stop GERD. When this surgery is done, it is supposed to make it impossible to vomit or even burp. Nothing should be able to come up. Sometimes they put in a gtube for venting and/or feeding.

There are several test that can be done to test for GERD. A PH Probe and upper Gi are probably the most common. I have been told that the fingers down the through can be a sign of reflux in a small child. I wish I could tell you more.

Re: repeat fundoplication? swallowing issues? (LONG)

Hi I was wondering what a fundo is?? I have been reading some of the feeding topics and was wondering if anyone could help. My friend's son has Marfan syndrome. It is not a mito disorder but has a similar coughing and gagging spell. Twice he vomitted. He will cough and gag then put his fingers down his throat. He will do it every 5-10 min then he will stop for awhile does this sound similar to anyone? Could it be GERD?? How do they test for GERD? Thanks for the imput Angel Please contact mito-owner with any problems or questions.