Families views:
Amy Barnett-With many of our SMA kids, a G-tube/button is needed for not only nutrition but for the extra fluids that it takes to keep the secretions thin. Lily of course is a type 1 and cannot swallow but there are many kids who are type 2 weak and stronger ones that NEED the tube as well. As we know fasting with our children is an issue as they begin to break down their precious muscle quickly. Most kids when sick will not eat and that to me would warrant having a feeding tube placed. Rhea, I know what you mean about them being messy but for most of us it is necessary and I do not want other parents to have a bad viewpoint about the G-tubes. Personally I find it very easy to feed through it, of course I would naturally want Lily to eat by mouth but since that is impossible we have to feed her that way. We find it amazing at how many people stop and stare when we are out and about and I whip out the G-tube to feed her. I know that it is a personal thing with each parent but please know that sometimes it not only is necessary but useful too. I know of a few parents that have been told when getting a g-tube placed that their kids will not be able to eat by mouth again or that because the g-tube is placed they will lose the ability to eat by mouth and that is simply not true. We had Lily's G-tube surgery done when she was 4 months old and she continued to nurse and eat things by mouth for many months after that until she actually lost her swallow. Having a g-tube is simply put another way to eat so I make a thing of it with Lily by telling her what she is being fed today and asking her "is it time for lunch yet?" or something like that and when I took her out to eat with my family the other week I make sure that she "ate" while we ate too so that she knew she was a part of all of that too. 

We have the PERFECT set up with our venting system now. 

Ok ready.... my dad who is a musician gave me a microphone stand that bends (like if you were going to put it over drums etc.) and it is sturdy and I can move it around, raise it, lower it, and put it directly over her still.  It is hard to imagine I am sure but IT WORKS.  I had the hook in the ceiling in my old house but when I moved to this place I didnít' have a hook put up and was just using the IV pole with a string.  Well, Lily has been a little extra gassy herself and I wanted to use the big bolus tube to vent her instead of the smaller extension BUT when I tried to hook it up to her IV pole it tugged and pulled at her button all funny SO I got the mike stand and it works great.  I will have to take a picture and find a way to scan it for you guys...the bag Still hangs off of it find and all that jazz.  It is GREAT.

Monica English-Even with the G-tube Taleah has always had an IV during hospitalizations. If she is hospitalized for respiratory infections she is almost always given IV antibiotics that can't be given any other way. Also there have been a few instances where she needed to keep her stomach empty for a procedure or such and needed nutrition and fluids through the IV. One thing I wish I'd done when we had Taleah's G-tube & Nissen surgery done is I wish I'd insisted on Total Parental Nutrition. This is where they give all the needed nutrition through the IV even when the stomach needs to remain empty. With the TPN given there is no break down of muscle during the fasting period. I didn't know much about the metabolic issues surrounding SMA at the time and I did see some loss of function after the surgery, I can only speculate how much of that was due to the prolonged fasting she had to go through for the surgery and recovery.

Jeni-She was diagnosed as *malnourished/failure to thrive due to SMA 2* and scheduled for an upper GI and surgery. I almost guarantee a surgeon will not tell you no.

KIMI-I had a gj-tube before and I loved it.  Having things put through the j tube is more comfortable to me and I had less reflux.  I currently do not have a gj-tube anymore because they found out I also had reverse peristalsis, which did not allow the j-tube to stay in the duodenum.  The only thing different from g tube and gj-tube is that us cannot place the j part by yourself at home, it has to be done in radiology at the hospital.

Corby- While you are holding off on his surgery for his g- tube and nissen. I would strongly suggest that they turn the NG tube into an NJ tube. The NJ will bypass his stomach and go straight to his jejunum so there is no chance he will reflux again.

We contain Kaelan's mild reflux with Reglan and zantac, and he does great with them. I heard that if they do not have reflux before the g-tube, it's only a 5% chance that they will develop it afterwards. And that would mean you could do the surgery under mild sedation and the all important NO INTUBATION!! In addition, one other thing is with the NG tube Kaelanís secretions were really bad and we moved the surgery up because they were just to hard to manage.

Lisa Huston- Have blood work to determine that they arenít in any kind of metabolic acidosis. I would be very concerned about them knowing the trouble kids with SMA can get into when not receiving proper nutrition. What harm would it do to have an NG tube?  They really are no big deal.  Many parents put NG tubes in their kids without any problems.  This is definitely a very easy way to get food in and liquids in.  Oliver had an NJ (into intestine not stomach) for 6 weeks and it was no big deal. A "cut-down" IV is where they cut through the skin layers using a scalpel; find a vein and stitch in an IV line.  This is usually only used in emergency situations.  If Oliver needed a cut-down to live, I would do it but I still think an NG would be the best bet.    This is similar but not exactly the same as a central line.  Oliver has had 2 femoral central lines and one subclavian central line during his hospitalizations because they couldnít get ďregularĒ IVís in. I canít believe a hospital would discharge a child who was in such obvious need of medical intervention to prevent severe dehydration.  If they really donít want to keep them, I would at least push for a temporary NG tube until they can start eating and drinking normally.

We forced fed Oliver with a syringe for months before getting a feeding tube because I was obsessed with him eating orally.  I donít know why I thought it was such a big deal, maybe because so much of our society and social life involves eating.  Sadly, it was a very stressful thing for Oliver.  We even did 8 months of speech therapy to possibly prevent getting a feeding tube.  It took him a long time to get over his oral aversion because I forced him to eat.  He eats more now orally (which isnít a lot but is some) than he did before he got his feeding tube.   Itís quite funny that Oliver doesnít eat much orally but still begs to go out to eat.  We always give him a plate with food on it (small amounts), so that he can pick and choose what he wants to eat.  He is still getting all the pleasure of eating without the stress of having to worry about nutrition.  Getting the feeding tube has improved Oliverís quality of life by leaps and bounds.  Now there isnít stress about him eating.  When he is sick he gets the fluids and nutrition he needs to give him the best odds of fighting off infection.  And the best part is  . . . No fighting over meds.  

As for handling secretions, Oliver has never had trouble handling normal secretions.  He has ďpassedĒ all of the swallow studies and his swallow improved after getting a feeding tube (Iím assuming, due mostly in part to getting optimal nutrition).

We use a clean extension after every feeding.  Which means I have 4 extensions tubes to clean every night.  We get four new extensions a month.  We usually throw out the four worst extensions when we get our new ones.  In addition, we flush Oliverís mic-key button after every feeding with about 30 cc of warm water.  Nevertheless, we also change Oliverís mic-key button every 6 to 12 weeks depending on how bad it is leaking.  Thankfully, our insurance has never balked one bit about this. 

We run the "regular - baby food included" formula at night but we put a gallon zip lock bag between the extension tube and the syringe barrel.  This way if the food overflows, at least Oliver isn't bathing in it.  It does
make it more difficult to get all of his food in during the day but at least I know he's getting all of his food.

Oliver's tube is changed every 6 to 10 weeks, depending on how bad it is leaking. I totally agree that all kids with SMA (especially stronger type 2s and 3s) don't need feeding tubes. However, there are a number of kids (mine included) who "need" a feeding tube. No matter how long we could have worked to feed Oliver, he never would have received enough to ensure proper nutrition. The feeding tube is a very personal issue. We have found it to be a huge blessing. It has given Oliver a quality of life he never could have had without it. I fought getting the feeding tube for about 6 to 9 months. Those were 6 to 9 months where Oliver could have been getting good nutrition. I really believe that in Oliver's case we did him harm by not getting the feeding tube earlier. So while for some kids, the feeding tube is pushed on them by the "experts" some kids really can and do benefit from them. Sometimes I think that other parents of kids with SMA who don't have or need feeding tubes think that we lost something by getting the feeding tube. But truly we gained from it. As for the surgery that prevents vomiting, it is called a Nissen fundoplication. Oliver had it done. We fought getting that too but in the end we are glad that we did it. Oliver has severe reflux, especially when constipated, and it has saved us lots and lots of episodes of vomiting and the risk of aspiration. Rhea, I am glad that you shared your story so that others know that feeding tubes aren't for all SMA kids but I wanted to share ours because I truly believe this has made a huge difference in Oliver's life.

Deborah Flemming- We had this situation with Joseph.   Heart rates were up 170-180, sats were 80-85, and he was admitted to ITU.  This was the first time Joseph had been ill and we were really reluctant to let them put in an NG tube.  He was put on a glucose drip but it didn't provide enough calories and we watched him get weaker.  When we finally agreed to put an NG tube in, he started picking up really quickly.  We were out of hospital 2 days later, admittedly with NG tube in place and us bolas feeding him (holding up a syringe dripping liquid in) every 2 hours.  We have since been provided with a pump that drips food in as fast or slowly as you need. For Joseph we had it going in very slowly all night and then quicker feeds while sitting up every few hours during the day.  The machine works better as it doesn't disturb his sleep.

Since then he's had a couple of chest infections and the first thing we do is pop a tube in.  Each of these illnesses has been managed at home then, heís fought them off much quicker, and his energy is kept up.  He's fed with Nutrini as the Nutrini extra is too strong on his stomach.  We've now been taught to do the tube ourselves. (You can put all the vitamins and acidophilus etc. down the tube too.)

Nadine- A g-tube is an absolute godsend. It will only help her. Just think, if she got really sick again would you just keep on wanting to put down an ng tube? She can only get stronger with the g-tube. It will give her all the calories she needs and she will no longer have to feel pressure to eat, nor will you feel pressure to feed her as much and worrying about caloric intake. I tell Type 2 parents, hey, why not have it use it for awhile, and then if itís not working out you could always have it removed, itís easy because it would heal over. The mic-key hardly protrudes & stays well. Jarred rolls, lays on his tummy & all kinds of things. We also do hydrotherapy (swimming) so I donít think it interferes with his exercising. I think you would notice the opposite, she would get much stronger and be able to do more than before. And she can always eat with a g-tube also, it doesnít have to interfere with her eating. You could use it for water during the day & just do a drip at night and she could eat whenever she wanted. That in itself would help build her up. Spinning the Mickey is good, you want to be sure you move it every so often during the day so it doesn't adhere. Our TLSO we cut a huge hole out for the whole belly area, Jarred doesn't tolerate his very much and is truly a diaphragmic breather. However, cutting out the middle was the best thing and no more worry about the Mickey. If the site looks good, I would take it off. Remember to keep up with the acidophilus. Nothing is better than some good old soap and water and fresh air. We've never had anything wrong with our site; it is usually perfect, except maybe very rare redness & irritation but no leakage or anything else. We had a PEG tube done with the endoscopy (camera to ensure placement), and we had fentanyl as our local. It went very smoothly.... our doctors place g-tubes all the time in our childrenís hospital. The actual procedure takes only 30 min or so, we were able to go in there with Jarred in the OR when they put him to sleep then go in right after they were done. The recovery time is actually pretty quick too. He was back to himself the next day.

Laura Stants- You can add Devon to the list of kids with a g-tube that didn't have trouble still eating orally and enjoyed sleeping on his tummy.  It didn't interfere with anything he did, the only thing he had was more reflux after it was placed, though I didn't know it at the time.  Nevertheless, it was a godsend to us, I shouldn't have waited so long on it! When I got Devon the g-tube, he was not aspirating and he could still eat orally.  But I spent so much of my time trying to GET him to eat that both of our quality of life was down.  I would take a syringe and squirt it in his mouth, etc.  Finally when I got it for him at a year of age, it was a total turn-around for both of us.  I had him eat orally FIRST, whatever he wanted, then I would give him the rest of what he needed by the tube.  He retained his swallow that way and still got the nutrition he needed and didn't fight the meds.  I didn't want him to lose the ability to eat either, so it was just a choice to have him eat orally first and then supplement with the tube.  I guess nobody can promise you wouldn't start relying too much on the tube, that's in your hands, your control, and yours alone.

Brandi- I haven't done anything to help her keep her swallow.  Her swallow isn't what it used to be though - she doesn't handle meats very well (good thing for when I put her on the AA diet) and it is SUCH a major struggle to get her to eat.  I don't know if it is because it makes her tired (which eating DOES tire her out a bit I think) or she just isn't hungry or just being stubborn OR if it is just that she has trouble swallowing food.  She doesn't seem to have a problem with liquids, but solids I'd definitely say she was a bit slower than normal at it.

Sallie- I wrote this to a mother who was afraid that if she got her child a gtube that the child would lose their ability to eat orally because she would be eating less orally. (This can seem to happen if a child becomes very sick and is hospitalized/fed through Ng tube or IV and even when they recover they are weaker orally, I believe that this is not because they didn't use the muscles but because they were so sick and that if they had the tube and could more easily stay hydrated etc. they would be less likely to get that sick) Many Type 2s never lose their swallow but have trouble getting enough food and drink in. This particularly becomes a problem when the child becomes ill and an already undernourished and borderline dehydrated child quickly deteriorates to severe dehydration and metabolic distress because they can get nothing in. After struggling for years to get enough fluid and nutrition into their children. Many parents of Type 2 children are finding that once they made the decision and had their child's gtube placed, the child was not only healthier, stronger but even was better able to eat orally when so desired. Here is what I wrote to her:

"But also, remember that the times when they are "not using their swallow" and they lost some of their ability to swallow. It is likely that "not using their swallow" meant not getting much in, in the way of food or liquid which meant a general, overall weakening that also affected their ability to swallow. In addition, when you come in and get lots of little bites and drinks in, they are getting more nutrition and hydration, so, they get stronger again and so will their swallow."

Kenya Birkle- Aschdon has only had his mic-key button since Oct 4. We were so worried that it would make him lose his swallow, make him lose the ability to eat by mouth but what it has done is just the opposite. In the morning, he is more energetic and happy. When he wakes up he wakes up hungry just like normal, it hasnít changed his eating habits at all. I think it really has improved them. He is even more willing (once in awhile) to try something new. I just want to reaffirm that by getting the g-tube it will not weaken their swallow, now there is a chance for reflux but we donít have to deal with that as we opted for the Nissen to be done, as we are not big advocates of having to take medicine everyday. It was a good decision for us.  Now if you do opt to get it done their desire to eat for a few days will not be there but that is a normal thing to happen. To keep their swallow just make sure to offer water often. Keep the foods they likes in sight that way when they "feels" hungry they will have the desire to eat by mouth. Aschdon always has some kind of food by him. If he eats it or not I know it is offered. I keep track of how much he does eat and if he doesnít eat enough during the day I supplement him at night (so our mix is different every night) for what he is lacking. I am really picky on it and it has worked for us as Aschdon has gained 2 pounds and looks better than he has in a long time.

He had the nissen and G-tube done laparoscopically.  They did four incisions one for where they placed the mic-key button and the others for the instruments used.  I was very impressed on how well Aschdon recovered. He was able to be extubated within about 2 hours I think right on to the BI-pap (I did learn though to make sure they have the settings right. We were just learning and they had the settings at 12/5 and he would go into panic attacks because he could not trigger the breaths) He was in PICU only for less than a day and never had to have pain medicine once he was out of PICU.  He had one dose of Tylenol the next day (this was only less than two days after having it done) and the next day he was up and at 'em like nothing happened. They had started him feeding through the mic-key button with in the 24 hours of surgery.  It was started out at 5cc an hour with the iv going at 40cc then every four hours the feeding would be upped 5cc and the iv would be lowered 5cc until he was at 65cc's an hour. He never showed any problems.  He was on a very soft diet or what they call a mechanical diet for 2 months but is now going back to eating anything.  (They said think of it as anything that is sticky, or if you had water too gets sticky or doughy so no potatoes) In addition, we were not too stressed about feeding him (making him eat by mouth) because it came back on its own. We had the nissen done the same time as the button because we didnít want to have to put Aschdon through another surgery. They were able to do them both the mic-key button and the nissen during surgery. Not all doctors do the laparoscopic surgery either. Dr. Downey put the mic-key button in right away instead of having the feeding tube placed and then returning to have the mic-key placed.

Krystal Brown- I can tell you that Ryan, now 6 and 1/2, is finally on the growth charts.  He's in the bottom 5 percent, but at least he's on it!! We did not expect the G-tube to be so sensitive for so long.  He got the tube put in, in July and he vomited for 12 hours afterward, could not keep anything down!!  He also had residuals (was not digesting the formula very well) the first few nights.  We put him on one packet of vivonex at first.  We are still only doing 1 and 1/2 at the most, plus several vitamins, etc. Anyway, no one told us he would be so sore and tender around the tube for as long as it was.  He still does not want you to touch it, or to lay him on his tummy.  Another thing we learned was that you must use that lactobacillus to keep the site clean.  Otherwise, you will get drainage and stuff you do not want.  So, always put that into the night feedings.  We tried skipping it when we ran out, etc. and because it is so smelly and stinky and we have to reuse our bags for 3 nights.  Point is, do not omit it. Just expect it to be sensitive for a few months.  Ryan is just now not scared to have us touch/turn it.  It has been 5 months.  We got the Mickey button put in the first of October.  That is nice, getting rid of that tube.  That thing is a pain because it is in the way, and boy if it is pulled, it really hurts them, so always keep it taped up to her chest somewhere.  Or, at least check to see where it is and be sure it isnít pulled in any way.

The night feedings themselves are very easy and pretty hassle free.  We feel it is well worth everything.  Only thing we regret is that Ryan will not lay on his tummy at all anymore and that was a nice stretch for him, and a nice change of position.  But, I hear some kids don't mind, so maybe it's just him.  In addition, it has been hard fitting a new TLSO on him for the scoliosis, because of the tenderness of the site.  Therefore, we are doing without for now and hoping to fit a new one soon. We are just so relieved, not having to constantly worry about nutrition. We feel like we have fed him constantly like a baby bird, for so many years...and he still was not able to get enough.  It is so much work for him to chew.  He still eats and enjoys it, but the pressure is off.

Laverne Heathcott-the Mickey button is the best as you can change it at home.  We also live quite a distance from childrenís, and at first had another kind, Taylor out grew it, and it came out so we had to cover-mand hold it in until we got to childrenís, which is 3 hours away.  They then put a mic-key button in, and showed us how to change it.

Jennifer Eastham-Courtney has gone threw several buttons and the best so far is the Mickey button. In addition, if it comes out you can put a new one in your self and its not painful. Itís easy to take care of. The other button is the hard button and its painful to watch it be removed and another replaced. The surgery will be ok. Its and easy simple surgery and she should recover very fast. Itís hard to describe, but they will probably put in a long tub first. They go in, make an incision in her stomach, and place the tube. Courtney never had a nissen put in but Courtney has done much better with the Mickey. Getting the tube is not pleasant at all cause you have to worry about granulation tissue and then you have to apply silver nitrate sticks to get rid of it. Thatís painful. The tube is a pain, but if your child needs it for nutrition then you really need to get it.

Monica English- The one thing I would be concerned about is the mechanism that keeps the PEG in place inside the stomach.  Can it be replaced when the times comes without further sedation?  I don't know a thing about PEG tubes so everything may be just fine.  The reason the Mic-Key is so nice is that the balloon is deflated to allow the old tube out and the new one slipped in.  It can be done with no sedation or discomfort.  Taleah has a genie button right now due to some very unusual circumstances.  It was placed with sedation they took one piece down her throat, up through her stomach and attached a piece on top to secure it.  I believe that with children with enough tone in their stomach this can be replaced in the office because they can stretch the piece in her stomach and just pop it through.  From difficult experience, we've learned that Taleah's flaccid stomach won't allow that to happen and when we replace this there will need to be sedation.  That makes me very, very nervous.  I have even considered having her surgery redone so that we don't have a regular procedure requiring sedation every 6 months to a year.  I would just ask your surgeon about that. The other thing you might do is give Dr. Bethel in New Jersey a call. Then you could get the pros and cons right from him.

Harland Johnson, adult gtuber- After five years with a gtube I feel semi-qualified to give advice, particularly to those who have just had one placed, or are about to. And especially to those who are worried or depressed about the prospect. This message is for those who will or do rely totally or partially on nutrition by means of a gtube or gbutton.  It's obviously from a patient perspective and not to be construed as medical advice (i.e. don't sue me or the
publishers of this newsletter). I don't know all of the answers but I have some definite opinions and several "tricks" on living with tube feeding. And I mean living. My strongest opinion is that unless you have other medical problems, tube feeding should not change or interfere with your lifestyle.  It's a minor inconvenience at times, but so is getting up and going to work.  So don't be downhearted about the prospect.  There are actually some advantages, the greatest one being that tube feeding is a very convenient and relatively worry-free way to maintain your nutrition and hydration, which is especially important if you are facing radiation treatment or further surgery.  Or, if for whatever reason you are facing an indefinite duration with a tube, it is essential to your well-being. I can honestly say that after the first period of learning the tricks and getting adapted to the new procedures, the gtube hasn't had much effect on what I or my family (wife and teenage daughter) do. We still dine in or out with friends and guests.  We travel a lot, domestically and
internationally. I swim in the Gulf of Mexico (we live on the beach in Coastal Alabama), exercise and work in the yard.  Tube feeding should not interfere with most sports (tackle football or wrestling may be an exception!), with
intimacy, and with participation in all of the hobbies and recreational activities that you enjoyed prior to the tube. Have you ever considered the advantages of tube feeding?  I can work on the computer while I feed, or play the piano, or work at my desk (before I retired I would have meetings in my office while I was feeding), or read, or even nap (but you should keep your upper body at least at a thirty degree angle to avoid reflux).  I get all of the right vitamins and minerals and calories to keep my weight where it should be, my cholesterol is way down, I get no overdoses of nasty caffeine or chocolate or alcohol, I don't have to worry about grocery shopping, I have my food delivered to my door, and insurance pays for 80% -- what a deal! In my opinion, the first and biggest step to successful gtube living is mental:  DO NOT consider tube feeding as a medical procedure.  It's a shortcut way to get food into your stomach.  It's just another way of eating, for goodness sake.  It's not a blood transfusion or an IV.  It
doesn't require any higher level of hygiene than you use for normal eating. The location where the tube penetrates the abdominal wall (the stoma site) is not a sterile site.  It needs to be kept reasonably clean and dry to avoid irritation and bumpy tissue growth (called granulation tissue) but you don't need a mask and gloves!  In addition, there are creams, ointments, and powders to help with site maintenance.  You don't need an IV pole on which to hang your feeding bag (if you feed by gravity).  When I travel I carry several "over-the-door" plastic hooks in my feeding supplies backpack to hang over pictures in hotel rooms or at rest stops or to hang from the rear hatch of our mini van.  At home, I use the same hooks or a handy nail at one or two spots where I typically eat.  In addition, if I can't find a place to hang the bag I use my 60-cc syringe to inject the formula into my tube. The second most important principle is to be self-reliant. Whether you keep your feeding supplies in the kitchen, bedroom or bathroom, look after them yourself.  Unless you are physically unable to do so, take care of your own feeding.  It's very natural for a spouse to want to help, but it isn't necessary.  My wife is a nurse who would and could help if necessary, but I prefer to be independent, and I wouldn't think of getting her involved anymore than I would think of having her spoon-feed me if I were eating "normally."  Her typical level of participation is to ask, "Have you eaten supper yet?" when we're sitting in front of the TV.  Yes, you will get hungry or not get hungry just as you always have, and sometimes you'll forget it's mealtime. Plan ahead:  If you're going out with friends for dinner, eat ahead of time. If you're going on a shopping trip, throw your backpack and a few extra cans of food in the car just in case you stay beyond mealtimes.  Ditto for long distance travel.  Take a few extra cans on the plane just in case. Use humor:  If you're dining out with guests, and you've already eaten, you can dominate the conversation (!!) while everyone else has their mouth full. Tell the waiter, "Nothing for me thanks.  I'm just here to watch and pay." Or order a glass of wine to have something in front of you, and wet your lips and savor the aroma during the meal.  If you're able, sneak tastes from your wife's dish, and discreetly spit it out in a napkin if you can't swallow at all.  If you're at a banquet, don't make a big deal out of not eating.  Let them serve you.  Push the food around if necessary. Whether you tell your tablemates about your feeding habits depends on you and whether anyone notices.  You'll be surprised how few do. Join in support or discussion groups to ask questions, exchange ideas and tips.  It has become obvious to me that most caregivers do not give new gtubers adequate instruction, and most physicians are woefully uninformed about the ins and outs of enteral feeding.  I rely on the Internet, and can recommend www.gtube.org as one place for information.  It has about 400 participants, mostly parents of small children that are tube fed (and typically have a multitude of other medical problems), but there are many adults on the list also, and you can always learn something from everyone who participates.  Another source is the Oley Foundation http://c4isr.com/oley/, which is a support organization for enteral and parenteral feeding.  Professionals can find information on ASPEN's website (American Society for Parenteral and Enteral Nutrition) http://www.clinnutr.org/Finally, consider how wonderful it is that we have the opportunity to continue our lives in an almost-normal fashion because of enteral feeding. The gtube is simple in concept, and easy to use, and I thank God for this low-tech procedure.  The alternative is not nearly as appealing.

Brenda (MJ)-Let's see:  The  PEG is when they insert an endoscope tube down through the mouth with a light at the end and then pulling it through from the inside out.  Takes 30 minutes.  Bethel and the radiologist looked at the CAT scan and didn't see a hiatal hernia, so aren't sure what that was about.  Regarding the Nissan, when the schedule surgery, they will do an upper GI the day before when we check in and that will determine what type of surgery MJ will be having.  Dr. Bethel believes just the g-tube will be fine.

Ashley-At the Dr. Bach conference there was a Dr. there talking about G-tubes and he said that it should be something that as a family you have decided you really want when you go to get it and if you're not sure than wait.  That helped me a lot, although I do not think Christian needs one at all right now. How old is Crystal (I forgot?)? The only downfalls he told us were that can cause heartburn and eventually will need to be replaced as they grow. Every parent sees how well their child does with feeding so I think you'll know when she's ready. I just keep an eye on Christian's weight gain, but then too I have 2 healthy nieces that both went for about 1 year weighing the same without gain. God's blessings to you!

Rhea Canfield-HI everyone. About the G-Tube ~ Courtney has had her "button" since August of 2000. The doctor did ONE swallow test and concluded that she had SEVERE swallowing issues. So severe that she never has to use the darn thing! It's a pain, it stinks and for her, it serves absolutely no purpose. I wish we would of had someone to give us different perspectives of the tube rather than just hearing from the "experts" that it's the right thing to do. The surgeon that put it in did not do some kind of technique that helps to prevent vomiting. I'm not certain what he should of done but something to the fact of wrapping part of the stomach around the tube inside of her? As I said - I do not know the exact process but evidently, the surgeons have their own preference of how these tubes are placed. A few weeks after Courtney's surgery we noticed this stuff coming out of the incision and it was growing! After a few trips to the emergency room we found out it was the lining of the stomach and stomach acid. When stomach acid touches an open wound, it's extremely painful! Courtney had to be admitted to Scottish Rite so they could apply Silver Nitrate to the incision to get it to go away. The only thing Courtney's tube is used for is medicine and that's just a matter of convenience. There's actually no need to administer the meds through the tube because she can physically swallow it all. If we had it to do all over again, we would not of had the tube placed. Our views overall on the feeding issue are that there are other alternatives such as blending the food and using smaller spoonfuls.  Someone in the nutrition class at the conference said that it takes forever to feed their child; the doctor said that it is your own preference as to how long you will spend feeding your child.  I'd feed Courtney all day long if it meant her not having to use that stupid tube! In fact her button is getting to the point that it doesn't stay closed and stomach fluid is constantly leaking, and let me tell you - IT STINKS! I'm sure the doctors will want to replace it very soon but we're going to have it removed instead. Dr. Iannaccone is Courtney's SMA doctor and she said if Courtney went one year without using the tube and gained or maintained her weight than it could be removed. I'm sorry this is so long. The feeding tube is different for everyone. I am sure it saves some of these kidís lives; it just necessarily is not for everyone.

Cindy Cox-Parents of newly diagnosed type 2 kids should know that a G-tube is not always inevitable. I am certainly glad it is available to those who do need it, but hopefully Danny will continue to eat everything that we eat and stay as healthy as he has all these years. He actually got too heavy during early teens (too much pizza), but is at a good weight now. He's never had pneumonia or been too sick to eat so we've been lucky. He does have a younger friend (strong type 1, I think) that has been fed that way for about 4 years and is doing fine with it. Well, that's my input as mom of a very healthy 20 yr old son with sma 2.

Brenda Brames-Crystal can eat independently, but with the fasting issue having such a severe affect on her, this is why I would decide to place a G-tube. She is a very picky eater and I know that there are times that she doesn't meet the dietary requirements for her age and weight and that really bothers me. Also, I feel that there are so many issues that our children have no choice with: Therapies, medicines, stretching, Tolerex (for some), doctors, labs...For Crystal's ego, I thought wouldn't it be nice not to have to stress over some things like the diet.  Let her make her own choice for once and then if she does not meet her needs by mouth I can use the G-tube as a back up. Especially with liquids, Crystal has gotten much better but her last blood draw proved that she still isn't getting enough. It is bad enough that they have to get blood drawn or IVs from time to time but then for it to always be so difficult for them to find a good stick just makes it worse. With the exception of the initial surgery when the G-tube is placed, I see the heavy being placed on the caregivers for the tube and that it does not cause any problems with the child

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