My friend S– posted a warning to the ES list about low iron/ferritin levels in kids who have had duodenal atresia or stenosis surgery, or Celiac and Crohn’s. I’m going to reproduce here some of that discussion for you.
I wanted to pass on some news about J– as you have been kind enough to listen to me whine about her health problems all these years. After her most recent hospitalization for severe anemia she was treated by a hematologist as well as a gastroenterologist. They put their collective “ologies” together and came up with the plan to treat the iron depletion first.
Had any doctor ever suggested treatment of iron depletion? Read on.
No one ever suggested this before….low iron, and other nutrients were considered a result of GI disease. I’ve learned the hard way how extremely important iron stores are to the well-being of the brain and the heart and general health.
And for J– treating iron depletion had dramatic results:
She had 8 IV infusions of iron over a period of 9 weeks. Her most recent labs show her hemoglobin and iron numbers to be in the normal range. She is no longer yellow (this was attributed to my feeding her too much carotene, and low iron to my not giving her enough meat). She’s no longer pasty and pale and cold. And I almost want to say she is no longer “retarded” but of course that’s not quite the case. We’ve had a pretty intense Verbal Behavior program going for the past couple of months and she is talking so much more and willing to vocalize and learning so much more quickly.
… I did some checking and apparently one of the 4 reasons given for an inability to absorb iron can be small intestinal surgery, in particular the duodenum..which results in a much smaller area of absorbable intestine. This is where most iron is absorbed. So while I’m ready to go kick some more doctor butt because absolutely noone in all these years has put this together I did want to get the word out there to any of you who’s children have had duodenal atresia or stenosis surgery as babies to be vigilant about iron levels [emphasis added].
This information that some of our kids are at particular risk for low iron is important.
I, like many of you, was volitionally brainwashed into the idea that extra iron for our kids was a bad bad thing.
S- was referring to this article on the danger of excess iron in Down syndrome.
I’m hoping you will help get the word out that low levels of iron can be equally if not more dangerous, particularly in kids who’ve had these duodenal surgeries. (Also kids with Celiac and Crohn’s).
According to Paul at Super Down Syndrome (one of my new favorite sites), the blood test to get is a ferritin reading.
Both a paediatric sleep paediatrician and a paediatric gastroenterologist that we consult with strongly recommend supplementing with iron for sleep disturbances in children IF A FERRITIN LEVEL LESS THAN 50mcg/L IS SHOWN. Note that the “normal” range is 20 – 200 mcg/L. Ferritin is the iron storage molecule of the body. In children with DS iron supplementation should only be undertaken if low iron levels are proven and they should be monitored regularly during supplementation so that the supplement can be stopped ASAP.
There is much, much more at Super Down Syndrome, including the relationship between iron deficiency and sleep disturbances.