by Whitney Rinaldi | Oct 18, 2018
I am presently working with an 18-year-old boy who has CdLS. His mother has told me that he has not cut his 12-year molars yet. Recently he has been grinding his teeth frequently and “sliming.” By “sliming” I mean this that he puts a finger...
by Gabbie Nadeau | Oct 18, 2018
I have a child with CdLS who just turned 11 but according to psychological testing, functions at about a 4-year level. She has an exceptional vocabulary. After the age of ten she started to grow pubic hair. She has not said anything about it yet. I am extremely...
by Gabbie Nadeau | Oct 18, 2018
My adult son still struggles with periods of pain following gall bladder surgery. Recently, he was diagnosed with Levator Ani Syndrome, which is intermittent rectal pain caused by spasm of the levator ani muscle (situated on the side of the pelvis). Some treatments...
by Francesca Scognamiglio | Oct 18, 2018
Will my child’s bone age ever ‘catch-up’ to his chronological age? In general, individuals with CdLS have bone ages that lag behind their chronologic age. It should grow as they grow. It just means that it will take them longer to grow compared to...
by Gabbie Nadeau | Oct 18, 2018
Our daughter has not had any obvious feeding problems since shortly after her birth. She is currently at approximately the 50th percentile on a typically developing growth chart for height and weight. As a baby, she held herself rigid at times, arching her back. We...
by Gabbie Nadeau | Oct 18, 2018
If a person produces a child with CdLS, what is the recurrence rate of producing another child with CdLS with a different partner? Would it still be 1.5 %? It should be the same. A new partner would eliminate the likelihood of two recessive mutations (one silent...
by Gabbie Nadeau | Oct 18, 2018
In other families that went on to have other children after having one child with CdLS, how many were again affected by CdLS? A random mutation implies that every pregnancy has the same likelihood of producing a child with CdLS, but are families at a higher risk for...
by Francesca Scognamiglio | Oct 18, 2018
Can certain diets improve behavioral issues? My sonís neurochiropractor suggests the use of diet (i.e. eliminate wheat and dairy) to assist in neurological development (including improvements in behavior). Most of his patients are autistic but he has found that...
by Gabbie Nadeau | Oct 18, 2018
Is tracheomalacia common in CdLS? I certainly have heard of some children with CdLS having had tracheomalacia, although I don’t think that it is that common. It is a softening of the trachea, which causes part of the airway to collapse during inspiration. There...
by Whitney Rinaldi | Oct 19, 2018
My daughter began her period at age 12. It had always been very light. She is 19 now and somewhere along the way she stopped getting it altogether. I’ve noticed that the only time she gets it now is when she is sick and on antibiotics. Then she gets it lightly for two...
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