Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 , Hi, We had Kira's G-Tube placed at the same time as her muscle and nerve biopsies, for the very reason of the anesthesia risks involved with the Mito kiddos. We did not want to subject her to anesthesia any more than we had to. She has done so much better on the G-tube then the ingie feeding tube for several reasons. Now we have had some problems with finding the correct one for her. We tried the Mic-ky button however for her, with her being on the heavy side this was not a good thing for her as it caused her stoma to bleed and would get tight and then too loose as her weight can fluctuate from 10 to 30 pounds in a weeks time. Right now she uses a 16 French gastric tube. She is not as happy as with a Mic Ky tube because the Mic ky is fairly flat to the stomach, the tube she has now hangs out of her about 6 inches so it tends to show. She is 14 now so that is important to her. We have never tried the Bard button because of it needing to be put in and changed by the doctor. Kira puts in and takes out her own tubes when she is well enough to do it. Don't be afraid of the G-tube though, they can swim they can take baths or showers with it. The only true set back I see to hers right now is the granulated tissue we get sometimes from the tube rubbing in the stoma and her stoma is a bit stretched out at times so it leaks. That is really no big deal as the steri gauze soaks most of it up that we place around and under her tube before taping it to her. I wish I had a picture for you, but she has never let me take pictures of her site as she is a bit self conscious about it. You can search under G-tubes and pull up pictures I am sure. I hope this helped you out a bit. Lappan was a huge help to us when we were getting Kira's tube in as far as answering my questions. Hey did you get this one? Hugs O ( Kira, , Krisalynn Mito Myopathy MIDS- Treated By Dr. Boles and DR Bruce Cohen) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 Hello everyone, Sorry I haven't replied to all the good people who have replied to me in the past. Thank you for your support and suggestions. I have another question. Lucas who has a highly probable Leigh's syndrome is 16 months, he had a NG tube fitted 7 weeks ago, I have asked the docs about fitting a G tube. Is a G tube risky in procedure with Lucas's condition and is it easy to live with, the NG tube is sometimes a pain to live with has it gets blocked and and sometimes comes out? we were thinking of doing the G tube procedure at the same time as the muscle biopsy. Is a G tube much better as you can feed normal liquidised food into it? Also has anyone got a photo of a G tube they send me? Many Thanks - London UK Send instant messages to your online friends http://uk.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 Grace never had the NG tube, but has a g tube. If I can only go on what I have seen, the g tube seems to be easier and more comfortable. They should have no problem inserting the g tube at the same time of the muscle biopsy. Although, depending on hospital and doctor policy she may have to have a second procedure to go from a g tube to a button. (Cleveland Clinic will not place a button without the patient having a g tube first.) The second procedure is no big deal other than the anesthesia. Grace had two seperate procedures to go from the g tube to the mic key button she now has, but it was totally worth it. Sorry the picture I sent is not the best. Grace does not like to hold still. Best wishes Get the NEW version of MSN Messenger - it's FREE! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2005 Report Share Posted April 2, 2005 hi martin, my daughter, anna grace (leighs) has a gtube. it really was one of the best things we ever did for her (it was a hard decision at the time, but i am so glad we did!). she has the mic key. i do not have any experience with the NG, so can't compare. however, we feed anna grace approx. 4 times a day (bolus) using peptamen jr., but can also feed her any other liquids too. plus it is great for her medications. we really have not had many problems with her tube, just some granulation tissue at first. if there is ever a problem, ie, the button pulled out, we can replace it at home. it is simple, and i keep an extra button & supplies in case i need it for that reason. and like already stated, there are no restrictions....anna grace goes swimming, takes baths, etc. feel free to contact me directly with any other questions. bethany mom to brennan 8, palmer & anna grace (leighs) 5 > Hello everyone, > > Sorry I haven't replied to all the good people who have replied to me in the past. Thank you for your support and suggestions. > > I have another question. > > Lucas who has a highly probable Leigh's syndrome is 16 months, he had a NG tube fitted 7 weeks ago, I have asked the docs about fitting a G tube. > > Is a G tube risky in procedure with Lucas's condition and is it easy to live with, the NG tube is sometimes a pain to live with has it gets blocked and and sometimes comes out? we were thinking of doing the G tube procedure at the same time as the muscle biopsy. > Is a G tube much better as you can feed normal liquidised food into it? > > Also has anyone got a photo of a G tube they send me? > > Many Thanks > > > - London UK > > > > Send instant messages to your online friends http://uk.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2005 Report Share Posted April 3, 2005 , My daughter Miranda, who is now 8 got her first NG tube at 13 months. She kept it for 2 months until we had a G tube placed. The Gtube is so much better then the NG. I have enclosed a photo. In this picture she has a G-J tube (button style) It is the lower tube near her belly button. Of course there are risks with having it placed since it is a surgical procedure and sedation is involved. I much prefer the G tube (or GJ in our case) over the NG. We feed Miranda Neocate 1plus which is a formula but I have heard of people feeding blended foods through Gtubes. -- NG v G tube Hello everyone, Sorry I haven't replied to all the good people who have replied to me in the past. Thank you for your support and suggestions. I have another question. Lucas who has a highly probable Leigh's syndrome is 16 months, he had a NG tube fitted 7 weeks ago, I have asked the docs about fitting a G tube. Is a G tube risky in procedure with Lucas's condition and is it easy to live with, the NG tube is sometimes a pain to live with has it gets blocked and and sometimes comes out? we were thinking of doing the G tube procedure at the same time as the muscle biopsy. Is a G tube much better as you can feed normal liquidised food into it? Also has anyone got a photo of a G tube they send me? Many Thanks - London UK Send instant messages to your online friends http://uk.messenger.yahoo.com Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2005 Report Share Posted April 3, 2005 Hi , Our daughter was in the same position. She had suspected Leigh's Disease and we were worried about the risks of having a G Tube placed. We waited about 5 months and finally decided to go ahead with the surgery. The tape from the tube was beginning to irritate her skin on her face, and every now and then she would get her fingers underneath the NJ and pull it out. We took this as a sign that it was irritating her. One of our palliative care doctors was an anesthesiologist, and helped in the surgery. They did the muscle biopsy at the same and Kira handle the surgery better than we expected. She was in ICU for a day and then another 3 days inpatient. We were so happy that we went ahead with the surgery. It was nice to no longer that the NJ tube around. The G-Tube was easy to manage and I don't have a picture of it because it is so discreet, especially compared to a NG. Hope that helps Jen Mom to Lucas 3.5yrs and Angel Kira (June 6, 2003 - Jan 4, 2005) NG v G tube > Hello everyone, > > Sorry I haven't replied to all the good people who have replied to > me in the past. Thank you for your support and suggestions. > > I have another question. > > Lucas who has a highly probable Leigh's syndrome is 16 months, he > had a NG tube fitted 7 weeks ago, I have asked the docs about > fitting a G tube. > > Is a G tube risky in procedure with Lucas's condition and is it > easy to live with, the NG tube is sometimes a pain to live with > has it gets blocked and and sometimes comes out? we were thinking > of doing the G tube procedure at the same time as the muscle biopsy. > Is a G tube much better as you can feed normal liquidised food > into it? > > Also has anyone got a photo of a G tube they send me? > > Many Thanks > > > - London UK > > > > Send instant messages to your online friends > http://uk.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Sorry this note is late, but thought I would put in a few words as well. We have dealt with NG-tubes in two children. Both had them for approximately 6 weeks before their G-tubes (mic key buttons) were placed. We have been told by several docs that using a NG-tube for longer than that is really not good for the throat and esophagus. Besides that, it is really not very comfortable for the children and the tape that is required to keep it from moving around is bothersome. Many kids pull them out and of course that means another tube needing to be placed. I was able to replace them myself, but never enjoyed the process much. G-tubes, although requiring an operation to place them, are soooo much better and easier to deal with. They get clogged less easily, have to be replaced much less frequently, and once healed, are so much more comfortable to the kids. We feed our three kids that have G-tubes Enteral Pediasure w/ Fiber but have also used other brands of formula for one child before she was old enough to handle Pediasure. I do know some people even puree veggies and other foods up are put it through. As long as it is very balanced in nutrition and not lumpy, it could work. I also love the G-tube for meds. Asenath takes 12 different meds, Zipporrah takes about 5, and Joey takes 2 presently. Kids hate taking meds orally and if you can imagine having to take meds three times daily (and up to twelve at one time!) than you can understand how nice it is to just push it through the tube straight into the tummy. Another thing with the operation is that a nissen and the biopsies can be done at the same time so if they need to be done, this is a good time to do it! I hope I helped some. Let me know if I can help you more. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a photo look into Mito) Darla: mommy to Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder issues, some wheelchair use, eye issues, gastric emptying issues... Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (17)migraines, sensory issues, & some evidence of SLE's... Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3) Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays, left hemiplegia (arm)... (15 months) SID, dev. delays, right hemiparesis issues... NG v G tube > Hello everyone, > > Sorry I haven't replied to all the good people who have replied to me in > the past. Thank you for your support and suggestions. > > I have another question. > > Lucas who has a highly probable Leigh's syndrome is 16 months, he had a NG > tube fitted 7 weeks ago, I have asked the docs about fitting a G tube. > > Is a G tube risky in procedure with Lucas's condition and is it easy to > live with, the NG tube is sometimes a pain to live with has it gets > blocked and and sometimes comes out? we were thinking of doing the G tube > procedure at the same time as the muscle biopsy. > Is a G tube much better as you can feed normal liquidised food into it? > > Also has anyone got a photo of a G tube they send me? > > Many Thanks > > > - London UK > > > > Send instant messages to your online friends http://uk.messenger.yahoo.com Quote Link to comment Share on other sites More sharing options...
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