Russell-Silver Syndrome and G-Tubes

There is no other way to say it ….a g-tube is NOT an easy decision.

There are plenty of skeptics, including well-known and respected physicians, that will tell you a g-tube is not necessary for an RSS child.  And, there are also many other well respected physicians that will tell you otherwise……what I always suggest to families and caregivers of a Russell-Silver Syndrome child – is to make the decision that is best for your child – not necessarily what has been the best for someone else’s child.  In addition, it is important to truly understand how your child is advancing on the growth charts, whether or not there is a drop-off in growth, what their eating habits are, and whether or not they have blood sugar issues.  There are also  gut dysmotility and reflux issues to consider when deciding which type of tube is appropriate and/or necessary.   I believe all of these factors are very important and should be made with your Gastroenterologist and/or specialist.

For us, it was a tough decision in the beginning – but, ultimately was the absolute BEST decision for Ian.  After being diagnosed at 9 mos., Ian began to fall off the charts (from the zero percentile to below….)….at around 15 mos.  Our Endocrinologist gave us the option to begin either growth hormone or G-tube placement to encourage better growth and weight gain.  Not only did we have a difficult time making a decision….we didn’t make it soon enough.

Ian was failing to thrive….  His weight continued to fall off the charts – aside from what we interpreted was acceptable eating and around the age of 18 mos began frequenting the ER as well as continued overnight stays at the hospital due to his inability to bounce back from illnesses – including a simple cold.  His blood sugars began to spiral out-of-control as a result of poor glycogen storage, poor muscle mass and lack of weight gain…we no longer had the liberty to wait for our decision.

Even after the g-tube, it took three years before we were able to regain his physical strength and derive a sense of balance within his frail system….But we noticed a difference almost immediately. 

After about a year….Ian no longer needed to be carried up the stairs.  He would run around with other young children.  He attended nutrition and physical therapies for his food aversions, and he began to play with a bountiful amount of energy we had never seen before.  He smiled, and wiggled, and jumped along with his brother….playing as a toddler should.

For three years we continually faced challenges, therapies, and countless hospital stays due to severe blood sugar issues….but – along with the growth hormone and the g-tube….Ian began to gain weight and was no longer considered – failure to thrive. 

Ian is 7 now, and has been hospital free for an entire year.  He still gets bolus feedings through his belly in the mornings – which encourages his appetite throughout the day (and gives extra calories).  He also get continous feedings through his tube overnight to help maintain his blood sugars for the early mornings.   But, Ian is a very happy, and healthier child.  The g-tube has been his saving grace.  He graduated from the Nutritionist and Nutrition Therapy 9 mos ago – and continues to make strides with his eating.  He is also at approximately the 5-7th percentile in weight and has maintained his curve on the growth charts.  Although Ian does suffer from reflux, he takes Mirilax for delayed gastric emptying and seems to manage these symptoms fairly well. 

So, if I were to make the decision all over again?  I would have done the same thing…..

Copyright 2010 – Heather J. Earley