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New here

My son is 10 months old and has a NG feeding tube. I was wondering if anyone here has a child with a feeding tube? He has it for FTT/weight loss/ slow weight gain but we still don't know the underlying reason. I am not sure if this is where I should post but I'm a long time lurker on 9-12 board and haven't seen any.He has only had it for 1 week but I am starting to feel very alone and like my family just doesn't understand as hard as they try. 

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  • Welcome!  Congrats on your little guy!

    We managed to just beat the tube.  DS was FTT from 2-8 months.  He was gaining about 1oz/week.  His reflux was so out of control and the GI doctors kept trying to convince us to use hypoallergenic formula.  The formula was our big issue, it's loaded with corn syrup and we figured out he cannot tolerate it.  Once we stopped the formula and went back to regular Enfamil he started eating a bit more.  AFter that we played around with thickening his feeds and all of a sudden he started eating.

    He's still small, 9lbs at birth and 21lbs at 19 months.  There are a bunch of mom's on the board whose kids have feeding tubes.  Hopefully they can give you better advice.

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  • Thanks! My little man has only been FTT from month 8-now but he has always been a lazy eater. He was maintaining his weight until 8months then by 9 he was losing slowly,like 2oz in one month then by 10 he had lost almost 2 lbs in one month. He goes on feeding strikes and will only eat a max of 8oz/day then when he is eating good he only takes 16 oz. We were always at the ER or being admitted for dehydration so they had enough a put in his tube. There only giving him 2 months to get his appetite up and eat 28oz/day with no help. I honestly dont see that happening but what do I know, I'm just his mom. :)  i feel like there not doing enough to find the problem but then again every test he has had is normal besides VSS, he is an aspirator. Oh and they keep changing his formula also and is now on Elecare 24kcal.
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  • My LO is a tubie.  He has CF, severe reflux and eosinophilic esophagitus, which when you put them all together, caused FTT.  We had the tube put in on July 3 and the results have been amazing.  He went from barely 14 lbs in June to 21 lbs now. 

    In addition to the weight gain, he was starting to show some mild developmental delays and those have been eliminated.  He energy level changed dramatically and you can definitely tell that he needed more nourishment.

    It's not perfect and there can be side effects, the most significant for us has been tube dependency.  Before he wasn't eating enough to maintain his weight, but he was eating.  Now, he eats very, very little (like one or two bites a meal) and drinks 3-5 ounces of milk/juice a day.  We're fighting that battle now.

    For us, the g-tube was a fairly quick decision because weight is directly tied to lung function for CFers, so we felt it was more important to protect his lungs than to continue to fight to get him to eat.

     

    Baby Birthday Ticker Ticker Emergency ileostomy 11/28/10, CF dx on 12/3/10 and ileostomy takedown 1/24/11, feeding tube placed 7/1/11...still going strong! Little one lost 5w5d, 5/27/2012. CP 8/26/2012
  • Wow that's great he is gaining so well on the tube! We just had a followup today and ds has gained 5oz in one week! Thats unheard of for him so I was super excited!

    How old was your son when he was diagnosed with CF? What were his symptoms? I ask bc we talked about it today and are starting the testing soon. They want to do a sweat test, did lots of blood work, and going to schedule an abdominal u/s, mri of the brain, and a repeat VSS. We are also going to start speech therapy bc they think it might be behavorial bc of his severe adversion to food.

    I hope that you LO starts eating orally soon and win the battle. It must be very frustrating to go backwards. 

  • We found out that both DH & I are CF carriers when I was pregnant and when LO was born with meconium ileus, it was pretty much a slam-dunk that he had CF.  However, we did have the cord blood tested and we have genetic confirmation that he has CF.

    The symptoms for CF in a baby can be non-existent or they can have respiratory issues (which is what most people think of) or digestive issues.  For our LO, he's been almost exclusively digestive.  He has horrible reflux, problems digesting food (he takes pancreatic enzymes for that, again, common to CFers), problems with fat absorption and absorption of fat soluble vitamins (A, D, E, & K).

    I'm glad you did the bloodwork as the sweat test can be misleading and inaccurate.  

    If you have more questions, let me know.  It's not fun, but there is life after a CF diagnosis.  

    Thanks for the kind words on our little guy...he ate a potato chip this weekend!  He seems to love the crunch of the chip!  :)

     

    Baby Birthday Ticker Ticker Emergency ileostomy 11/28/10, CF dx on 12/3/10 and ileostomy takedown 1/24/11, feeding tube placed 7/1/11...still going strong! Little one lost 5w5d, 5/27/2012. CP 8/26/2012
  • Wow potato chips are a big step! Thats great!

    We are going for the sweat test today and should have the labs back soon. I'll be sure to let you know what happens and thank you. 

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