Any down syndrome kids with NG's? — The Bump
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Any down syndrome kids with NG's?

Our son was born with DS and has been in the ICU for 2 months. Looks like he might finally come home but with an NG since he only eats about 30-50% by mouth..... If your child came home with an NG, how long did he or she need it before you got them to eat fully by mouth? Or did you have to transtition to a g-tube? Just curious....
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Re: Any down syndrome kids with NG's?

  • I am sorry to hear you are still in the NICU.  When my DD was born she was in the NICU for 10 days and had a NG.  The doctors were going to send her home with one but we were able to try bottle feeding her.  Thanks to her nurses they encouraged it and even tried all kinds of nipples to help.  We ended up using a special needs feeder nipple (by Medela).  It is made for kids with cleft palates but works well with DS babies, too as they sometimes have short palates.  It was struggle at home and she did eventually start to eat better (faster - it had been taking about an hour to feed a bottle and in a couple months we were down to 20 mins).  We worked with a speech therapist who introduced oral stimulation to her.  We also had a nutritionist to help get her the right calories needed to gain weight (she has a heart defect AVSD and burns more than she was consuming).  I would ask about anything that will help your DS to eat better.  You still may need the NG but maybe just for part of the day.  I heard tehy are not to hard to put in and easy to use. Oh and my DD had reflux and needed Zantac and Reglan to help. 

    My DD is currently in the PICU (for a non-downs related illness) and has been for over 3 months.  She will most likely need a G tube when she finally comes home.  I read your other post (about diagnosis) and feel your pain and frustration.  My DD has had multiple complications since being hospitalized and while they aren't because she has downs I think she is harder to treat because of it.  I am beginning to feel that DS babies are physiologically different.  They metabolize drugs differently and just react to issues differently which makes them harder to treat.  I have searched for specialist in treating DS children and have not found any (except developmental pediatricians - which is not really what she needs or what I am looking for).  BUT... they are very resilient little ones that has been proven day after day by my LO. 

    I hope that you get to take your little man home soon. 

     

     

  • Thanks so much for your note. Do you mind if I ask what she is in the PICU with? My son has medical issues beyond his DS (tachypnea - breathing fast - of unknown etiology) and NO ONE can figure him out. He absolutely responds totally different to medications than they expect him to and so much of what we've been doing with him is trial and error. I ALSO was thinking of trying to find a DS specialist, but it sounds like there is not such a thing. Ugh! We'll have to keep in touch with our difficult little ones! :) We may be headed toward g-tubeville ourselves too if he doesn't kick it up a notch with his eating!
    image Aiden Jude is on his way! Pregnancy Ticker
  • My DD was born with a heart defect and things were rocky at fist - mostly due to feeding but they were starting to improve and she was home for a couple months.  Then she had her 2 months vaccines and I suspect that her vaccine for Rotavirus caused her to have what is called intussusecption (your intestines telescope inside one another).  We will probably never know for sure but the fact that that vaccine had previously been pulled from the markert for causing intussusception is a big flag to me (unfortunately in hind sight).  She was rushed to the ER with blood in her stool and she had abdominal surgery and we have been here ever since.  She is intubated and on a ventilator. She has since had lung issues, multiple infections, pulmonary hypertension, another surgery to restrict blood flow from her heart to her lungs, hypothermia, free air, brain damage and lately more GI issues.  She has a carepage that has her whole story (website is in my sig), but I warn you she has endured a lot and it may be hard to read since you are still in the hospital. 

    We've attempted to wean her off the ventilator several times and she gets close and something happens (usually an infection).  We had just discussed having a tracheostomy in order to get her out of here, when she had her latest setback.  She has been on several different combos of pain/sedation meds and develops a tolerance to them quickly.  She needs high doses and finding a good combination is difficult. It is beyond frustrating, I have searched, googled asked the intensive care doctors, all to no avail. I believe when we are finally over this that the doctoirs in the PICU will be a little more educated on it themselves.  She is writing her own book according to them.

    If you hear of anyone please let me know.  I will keep searching and pass along anything I hear as well.  One of her nurses is trying to do some research too.  I am going to contact our local NADS as well. 

  • Oh dear lord! You poor thing! Too bad we aren't at the same hospital - our docs would be pros at DS by the time we left! We are actually taking our son home because the docs don't know what else to do with him. They have literally run out of ideas/medications/interventions to diagnose his other medical issues. What fun! Anyway, I will certainly be thinking of you....
    image Aiden Jude is on his way! Pregnancy Ticker
  • Thanks.  I hope all goes well with your little man.  I really suggest trying out the different bottle/nipple.  Ask the hospital so they can provide you with one - otherwise you can order it on-line from Medela.  You'll eventually use it even if he needs a NG tube now.  Also as soon as you start EI (which I recommend immediately) make sure to let them know his feeding issues so you can get a ST (one with feeding background) and a nutrionist to help you figure out how to best feed and get his weight up.

    I am sure it didn't take long for you to realize we have to be the adovcate for our kiddos.  Being in the hospital kind of pushes you to learn (and question) everything you can and get a mini medical degree. 

    Good luck with everything! I'm sure I will see you around the boards.

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