I am an older mother of a beautiful 13 month old baby girl adopted at birth. DD has epicanthal folds & open mouth posture half the time. She also has a fascination with her tongue - she likes to lay it between her lips at times. When she was a baby it happened much more frequently, and with time it's not as often but it's still there. Since I am a MAJOR worry wart I asked her pedi about it & he said it was nothing to worry about. I then went on to make an appointment with a pedi neurologist to ask about her tongue & she said the same thing. Both said babies do weird things.
Fast forward, two months ago DD had hand-foot-mouth disease. She was pretty sick & wasn't eating. Brought DD to a pedi office that was open late on a Saturday. Clinic was a bit scarey but we stayed. As the doctor was entering the room he asked if DD was Downs. WHAT? No....I asked why he would say that. He said due to her epicanthal folds & her wide set eyes (never heard that before or since). He checked her out & then stated that she must not have Downs because her palm matched his palm & that he did not have Downs but then he said there is something called Mosaic Downs. I questioned further & he back peddled big time. He kept saying that he wasn't sure why he said that & started making excuses as to why he made that statement..... he said he was tired. Then after my 20th question he suggested that I contact her pediatrician which I did on that Monday. Told doctor about our visit & he went on to say that he had no concerns about DD at all. He spoke with that "other" doctor & that doctor said he had mispoken & should have examined her before he made a comment such as that. He just made the remark based on her epicanthal folds and did not look at the bigger picture. Well, since then I haven't been able to get it out of mind.
After that appt I contacted her neurologist via email to discuss what "that pediatrician" said. She said she understood why he made the remark - due to her folds and slightly low muscle tone in her mouth- and if we wanted to have her tested she could order the blood work. Me being me, I brought DD in that day to have the blood work done. Few weeks later, the neurologist called with the results - all was normal. But then she went on to say that only a few cells were tested & if I wanted to continue with this tseting for Mosaic Downs she could order a micro array test which is not covered by insurance. The cost of the test - $5000. By having this test, it could open up a whole new can of worms......
All of this craziness over one doctor's statement that knew my DD for all of 20 seconds.
I am having such a hard time getting past this. I posted a couple of pics of DD on my profile page if you would like to take a look.
I just needed to "talk". If anyone has any advice for me, I could really use it....