I work for a not for profit helping connect families to community resources. I just attended an appointment with a mother and 3 month old infant with Down Syndrome at the child's Family Physician's office. When the mother made the statement that she feels like her child is choking on its tongue and asked if this would change, the doctor told the mother that persons with DS have larger tongues and hopefully as her child grows his mouth would grow.
***This is just not true. Low muscle tone may make the tongue appear to be enlarged but tongues of people with a diagnosis of DS are not larger than the typical population. If this child is choking it may be secondary to low muscle tone, the insertion of the tongue, or inability to coordinate suck, swallow and breath. Starting a muscle based program from birth will make a difference. Feel free to look at the resources on the TalkTools website, particularly the DS feeding class, at this point.***
The mother also raised a question about her child's head shape and if it would change (there has been a referral for a helmet consult and a request for referral for PT that the PCP does not want to make until after the helmet consult). The PCP told the mother that it may or may not change and the PCP associated the child's head shape with the child's diagnosis of DS. How can I better educate this mother about this? I am beside myself. Is there not information that states otherwise?
***I am not an expert in head shape...however some babies with DS do have some asymmetry or a flat back of the head. I have had a number of babies on my caseload that have successfully worn helmets.***
I would not consider myself an expert but I have a child with DS now 5, and he was referred to a specialist who prescribed the helmet for his flat head-though it was not a difficult case, he had to wear a helmet which was set just in the exact time (it is effective only before the child is a year old) and it worked perfectly, his head rounded and continue to grow nice.
Regarding the tongue size, there is still the unfortunate misconception that children with. DS have large tongues and we have to educate specialist who claim this, but the reality is people with DS have organs (heads, ears and ear canals,etc) that are smaller and make the tongue look larger, this together with some low muscle tone can make the tongue protrude. In my son’s case his tone is not that bad, and he’s never had a protruding tongue.