31 for 21, Day 3: Q & A

Yay! We have a question!!  I did have a couple questions on our adoption blog also, and wrote quite the lengthy post with pics if you care to check it out! :)  Thanks so much to the people who asked questions!

Question:  Actually, I was wondering, do kids with D.S. have to eat special foods because of their low muscle tone, or can they eat regular food? Thanks.

Different kids with DS have different issues with low tone and what areas of the body are more affected than others.  Some children with DS have very serious issues handling different textures and learning to chew properly.  Others have no issues at all.  Feeding has been challenging at times for Evan, but he has really come a long way since we started solids.


Some kids with DS have no trouble at all swallowing thin liquids like tap water or milk from the jug, but Evan needs his thickened so he doesn't risk aspirating into his lungs.  All his milk, juice, water, anything liquid must be thickened to a nectar consistency.  We use Simply Thick brand gel thickener.  The only time this really presents as an issue is while eating out or traveling.  I bring his own drink from home if we are eating at a restaurant, and we take travel packets of thickener with us while traveling on vacation.  Some children with DS have no problem at all with thin liquids while others need an even thicker consistency like honey.  


How did I know Evan had this problem?  The moment we brought him home from the hospital, he was having trouble drinking his bottles without coughing and gagging.  When I took him to the gastroenterologist to be treated for his reflux, she ordered a modified barium swallow.  Barium was mixed in his bottle so the liquid would appear on x-ray.  Evan was strapped into a little chair and fed a bottle while technicians watched how the liquid went down on the x-ray.  Evan was observed to have penetration- meaning the liquid would go down his airway, but he was able to bring it back up before it reached his lungs.  This is still a serious concern so the recommendation was to thicken liquids.  It is easy to tell if there isn't enough thickener in his drink- he will drink too fast and cough.  As children appear to have less problems with swallowing, they return for another swallow test to be sure it is safe to use less thickener.  We haven't gone for a repeat test yet as it is apparent that Evan still needs the nectar consistency.


Some kids with DS don't have trouble eating solid foods, but Evan has had some challenges here too.  Evan did great starting with pureed baby foods, but once we started introducing texture- he had problems gagging.  We first introduced texture slowly by using a hand crank babyfood grinder with soft fruits like canned peaches and pears.  After he tolerated those well for a few weeks, we introduced canned veggies like green beans, carrots, and spinach.  He also did well with avocado, baked sweet potato, and acorn squash.  As he did well with those foods a few more weeks, we began dicing them very very small and have worked up to a bigger size.  He eats pretty much everything we do (we haven't introduced seafood nor nut products due to his age and recommendations by our pediatrician- nothing to do with DS), it's just a matter of cutting it to size.  He's not really ready for firm veggies like the frozen variety, so he eats either canned veggies or very well done steamed veggies.  Meats have to be cut very small as well as pasta.  Breads he does better with toasted- softer bread is more difficult for him to feel in his mouth and he tends to choke.  Fruits should be pretty ripe.  He has gotten past the gagging, but now it's more a matter of jaw strength... getting him to properly chew his food as opposed to swallowing it whole.  We practice chewing by giving him veggie straws to bite as well as bubble gum wrapped in gauze.  He receives feeding therapy once a month, and his therapists provide various strategies for me to use.  While out eating at restaurants or at large family gatherings- you would never notice Evan had trouble with feeding.


Hope this helps- please let me know if you have any other questions regarding feeding or anything else Down syndrome related- keep the questions coming! :)