advice on issues for my baby with down syndrome

Re: advice on issues for my baby with down syndrome

• thehanrahans05 member

  September 2013

  thanks for replying! I have begun with early intervention he is only going to receive PT. He actually starts tomorrow and will attend day care at the school on the 16th. We are going back to Dr on tuesday so i have a list of questions. The hospital where he was born sent a home care nurse, social worker and PT to start before early intervention kicked in. But since he was discharged from the hospital nurse these spitting up issues and leaking began. what us NBD? sorry new to acronyms. he is squeaky all the time, quiet when he eats and sleeps, kind of sounds like a chimpanzee... 

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• ToastieSimons member

  September 2013

  My son has a differ genetic issue but had suck/swallow problems. Is the flow too fast for him? Dr browns makes a preemie flow which is pretty decent. ,y som has hypertonia so open mouth was a difficult position for him so no wide bottles worked. We stuck with dr browns, narrow vent aire and cheap bottles.

  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
  

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• Assembly_Reqd member

  September 2013

  Welcome to the board! Nate does not have Ds but he does have genetic deletions on chromosome 1.<br> sorry about any lame formatting. I am posting from an ipad<br>

  
  

  Nate has a wide space between his eyes and a low bridge. He had clogged tear ducts his whole babyhood. It was annoying because daycare would think he had pinkeye. Our ophthalmologist said that 90% of clogged ducts resolve on their own in typical children by age 1. Nate's did not, so at about 15 months we had his stretched/opened. Basically, what they do is put them under and thread ever increasing sizes of catheter type tubing in through the corner of the eye and then out to the nose cavity. Our doctor said Nate's were "the thinnest he'd ever seen, even thinner than the kids with Ds"<br>

  
  

  We also had poor tone around the mouth and I just used cheap nipples and squeezed his cheeks during feeding. At about 4 months he learned how to make a seal on the nipple using his tongue and roof of his mouth and the leakage stopped. <br>

  
  

  The barfs were another problem and due to low tone in his trunk. The stomach sphincter is also a muscle, and if it has low tone, the tummy will just push the milk out if you squeeze too hard or move too quickly. Spitups happened here until about 14 months. Invest in quality bibs with the backing or layer that keeps the clothes dry. We would double up with a cheapy terry bib over a Carter's waterproof one and remove as needed. <br>

  
  

  Welcome again. Hope this helps!

  WAY 2 Cool 4 School
  

  
  

  
  

  

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• PipSqueak0313 member

  September 2013

  Congratulations and welcome.

  I have a 6mo boy with down syndrome as well. 

  For feedings, we used Nuby variable flow nipples for the first few minutes of the feeding when ds was hungriest since they require harder sucking to get anything out and they don't drip like regular nipples do.  After the first few minutes, we would switch to a regular medium, then later a slow flow nipple, so ds could get his feeding.  He couldn't use the wide Playtex nipples at first and he couldn't breastfeed.  After about 2 months of using the variable flow nipples, I was able to successfully latch him on to breastfeed using a nipple shield and then breastfeed without the nipple shield a few weeks later.  I do not know how much was the variable flow nipples strengthening his mouth muscles and how much was age in his ability to eventually breastfeed, but his OT does think having to work harder for his feeding did help ds.

  My ds was not gaining weight (failure to thrive kind of not gaining weight), acting like he had tummy troubles, and something undefined tripped my mommy instincts at 3 weeks old so I switched ds from milk based formula to soy based formula for supplementations.  The pediatrician was skeptical at first but since ds suddenly started gaining weight and just started sounding and acting better the pediatrician advised me to treat ds as milk allergic for now.  A few weeks ago he started acting like he was having tummy troubles again and I started noticing it occurring most often after a bottle of soy formula so now I'm thinking he is milk and soy intolerant.

   

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• Louise06 member

  September 2013 edited September 2013

  Congratulations on your baby! My son does not have DS, but he did sound like a squeaky toy when he was little.
  
  I played an audio recording of the squeaking and his pedi diagnosed him with tracheomalacia. The squeaking could also be due to laryngomalacia. They did not need to treat him for it.

  
  
  

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• preggersINschool25 member

  September 2013

  A girl on my BMB has a baby with DS. Her daughter is now around 19 months. She has a blog: www.meetinglauren.blogspot.com.
  
  She did not have feeding issues though.

  
  

  
  

  
  

  
  

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• Jfila13 member

  September 2013

  My son is 15 mos and was born with a cleft lip and palate. He had feeding issues from the start. I pumped, and he drank very well from a Medela special needs feeder, also known as a Haberman feeder. It has 3 levels of flow and a one way valve that allows milk to flow out of the nipple with any level of suck/pressure. They are pretty expensive (around $25/$30), but very effective for babies with a variety of needs.

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