My son is 15 years old and has CF and Autism. He was not diagnoised last year but has had symptoms all his life. Make a long story short, his sweat test was not done properly and delayed his diagnoisis. Anyway, he has struggled with his weight since he was 7 years old because of malabsorption, severe allergies, (gluten, wheat, milk, dairy, soy, and rice) which limits his diet. The autism causes him to limit his diet even more because there are only certain foods he will eat. He is 5ft 3 in. and only weights 72lbs. He is super skinny. Recently I spoke with his diatician who said he may benefit from a g-tube for night feeds. This has never been brought up. My son is way below the 3rd percentile for weight. I was wondering how difficult of a surgery this is especially because of the autism. He has severe sensory issues. How hard of a recovery to expect for him and if this is something we should seriously consider. He also hates to drink liquid, water, kool aid, he only likes popcicles. I think he is always mildly dehydrated-dark urine, not going often, ect. Would we be able to maybe put pedialite through it each day to be sure he stays hydrated well? Sorry this is so long, this is all new to me, we are not taking this lightly and have seen enough on this site to know you are all great people who not only care about your children but everyone elses. Any advice or information will be greatly appreciated. Thanks so much, Janelle
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G-tube
- Thread starter jshet
- Start date
Hi Janelle: Yeah a G-tube is essential. Getting nutrition is imperative. Leaving it up to the whims of when we need to eat is impossible. I have several posts on g-tube and nutrition. let me see what I can find and repost. Gluten Free is the way to be. If you are trying to be healthy and live with CF you have to take a very aggressive approach to your health. We do not want to do anyting difficult and we all want the silver bullet, but we need a strong foundation to be able to fight this disease: Gluten, dairy and sugar is the worst foods for CF's it really sucks but that is the cold hard facts. I wish I did this 40 years ago!
Recently I had a tune up at the hospital and I notice what is on the food trays of some of the other patients. Junk, Coke, jello, mac and cheese - this is a problem. There is no way to get healthy eating from a vending machine.
I have been using the G-Tube for over 20 years and only the last few recently and just real recently as the G-Tube advantage I am seeing great results. The key is consistency and manageable processes.
I know it is struggle to eat most the time we do not want to or feel like it. Most feeding formulas are just crap food not live and healthy. In the past where would I be able to consume an whole avocado, ½ cup of cottage cheese, six egg whites, table spoon of olive oil, 1 Cup of sweet potato all washed down with a cup of coconut milk. If I told you to eat that for lunch you'd be like ah no thanks. Not possible well that was lunch and some leftover for later. Plus I'll try to eat some leftovers or a sandwich. You have to take it up a notch and utilize the G-tube to really make an impact in your health.
Before I was a proponent of a G-tube for those who could not gain weight. Using it you will gain weight, but will you gain health? Hardly, no I am such a believer in the G-Tube that I recommend to someone with Cf that just wants to be healthier to get one. If you have one it is time to use it to your advantage.
4 years ago I was real sick and could not eat(I was in a coma for 2 weeks, my family had made funeral arrangements for me is how bad I was). I survived and slowly got back to health. Found out I had many food allergies and had to radically alter my diet. So going from a deathly 99 pounds to a healthy 150 is pretty life changing for me. I eat well and my stomach is in great shape. I marvel at how good some poops are and just wish I could show someone, I guess I keep it to myself and just chuckle they would have to take my word on it.
Give your body the nutrients it needs it will figure it out.
With CF we often focus on what is not working, well something is working somewhat or we would not be here. It is such a catch-22 situation. You are deficient in nutrients, your bowels and enzymes are poorly performing, you can not get enough nutrients to be at a healthy weight so you low energy, a higher calorie requirement due to lung problems and around and around it goes. Well lets say you do the bare minimum with regards to nutrition. You eat low quality foods and digest poorly you then are missing key nutrients that your body needs to build and repair and grow let alone gain weight. You can not to the bare minimum you have to do the maximum and a better and more complete job. Not fair I know it is just how it is.
I have been using the G-Tube for over 20 years and only the last few recently and just real recently as the G-Tube advantage I am seeing great results. The key is consistency and manageable processes.
I know it is struggle to eat most the time we do not want to or feel like it. Most feeding formulas are just crap food not live and healthy. In the past where would I be able to consume an whole avocado, ½ cup of cottage cheese, six egg whites, table spoon of olive oil, 1 Cup of sweet potato all washed down with a cup of coconut milk. If I told you to eat that for lunch you'd be like ah no thanks. Not possible well that was lunch and some leftover for later. Plus I'll try to eat some leftovers or a sandwich. You have to take it up a notch and utilize the G-tube to really make an impact in your health.
Before I was a proponent of a G-tube for those who could not gain weight. Using it you will gain weight, but will you gain health? Hardly, no I am such a believer in the G-Tube that I recommend to someone with Cf that just wants to be healthier to get one. If you have one it is time to use it to your advantage.
4 years ago I was real sick and could not eat(I was in a coma for 2 weeks, my family had made funeral arrangements for me is how bad I was). I survived and slowly got back to health. Found out I had many food allergies and had to radically alter my diet. So going from a deathly 99 pounds to a healthy 150 is pretty life changing for me. I eat well and my stomach is in great shape. I marvel at how good some poops are and just wish I could show someone, I guess I keep it to myself and just chuckle they would have to take my word on it.
Give your body the nutrients it needs it will figure it out.
With CF we often focus on what is not working, well something is working somewhat or we would not be here. It is such a catch-22 situation. You are deficient in nutrients, your bowels and enzymes are poorly performing, you can not get enough nutrients to be at a healthy weight so you low energy, a higher calorie requirement due to lung problems and around and around it goes. Well lets say you do the bare minimum with regards to nutrition. You eat low quality foods and digest poorly you then are missing key nutrients that your body needs to build and repair and grow let alone gain weight. You can not to the bare minimum you have to do the maximum and a better and more complete job. Not fair I know it is just how it is.
I believe most of the time the surgery can be done on an out patient basis. Generally, I think they tell you to expect a couple days of discomfort. When I had my g-tube placed I experienced severe cramping for about a week, which I was told was unusual.
One thing to check out is if they can place a "button" immediately, and not place a tube first to be changed to a button later. The "button" would be low profile against the skin, rather than have several inches of tubing hanging out. That may be important due to sensory issues.
And yes, you would be able to put fluid in it during the day. You could use the pump at night, and just use gravity feeds or syringes during the day.
One thing to check out is if they can place a "button" immediately, and not place a tube first to be changed to a button later. The "button" would be low profile against the skin, rather than have several inches of tubing hanging out. That may be important due to sensory issues.
And yes, you would be able to put fluid in it during the day. You could use the pump at night, and just use gravity feeds or syringes during the day.
isabella Mendoza
New member
g tube
Thanks for the info on the g tube. My oldest son w/cf is so sos SOOOO skinny and his docs always criticize his weight. The most helpful (note sarcasm) advice he has ever gotten is "I want you to gain weight". I have often thought that he could really use help with just plain quantity because his appetite is pretty crappy.; Are you saying that you make your own concoction (sp?) to use as a supplement? Avocado, eggs, etc,? Can you post a little more about this? Or send me an email?
Thanks for the info on the g tube. My oldest son w/cf is so sos SOOOO skinny and his docs always criticize his weight. The most helpful (note sarcasm) advice he has ever gotten is "I want you to gain weight". I have often thought that he could really use help with just plain quantity because his appetite is pretty crappy.; Are you saying that you make your own concoction (sp?) to use as a supplement? Avocado, eggs, etc,? Can you post a little more about this? Or send me an email?
When they told me that my daughter was going to need a g button, I was very against it. She was only three, and I hated the idea of it, but the truth is, it has been very beneficial to her over-all health. It's a source of calories at night or even during the day if she has no appetite. Not to mention, it's a good way to take the nastier types of medicine. Lol My daughter is still very small for her age, but close to the scale of where a seven year old girl with cf should be. A marked improvement from before.
Here is my g-tube post, pm me with any questions no problemThanks for the info on the g tube. My oldest son w/cf is so sos SOOOO skinny and his docs always criticize his weight. The most helpful (note sarcasm) advice he has ever gotten is "I want you to gain weight". I have often thought that he could really use help with just plain quantity because his appetite is pretty crappy.; Are you saying that you make your own concoction (sp?) to use as a supplement? Avocado, eggs, etc,? Can you post a little more about this? Or send me an email?
http://forum.cysticfibrosis.com/threads/35226-G-Tube-Advantage-and-recipes?p=911159#post911159
Thanks Rob, I appreciate your advice. My son has been gluten free for 8 years now and that has helped alot, he also has celiac disease. It is a big decision but your advice will be so helpful while my husband and I are deciding. Thanks Janelle
If I can be of any help please let me know.
My theory is that most Cf's have celiac and all cf's should be gluten free.
http://forum.cysticfibrosis.com/threads/35226-G-Tube-Advantage-and-recipes?p=911159#post911159