I have a question which I hope can be answered by someone who has more experience with CAH than I.

My grandaughter is almost 9 months old and was born with this syndrome. She is of course beautiful and healthy otherwise. My daughter and her husband take her regularly to an endocrinologist for checkups.  She is followed very closely.

My question is that she, it seems to me, does not get enough sleep. My daughter tells me almost every day the she did not sleep all night or only slept an hour or so each day. She seems to be always "wired up". Does anyone know what I am talking about? Of course my daughter is exhausted from not enough sleep also.

 

Has anyone else had this problem? If so, what is the solution? Can the doctor do anything? I think my daughter and her husband do not want to mention it to the doctor for fear that he will say she is only spoiled which would probably mean to put her to bed and "let her cry" but I know that would hurt my daughter very much. This is her first child and I think she feels responsible for the baby having this condition.

I wonder if the sleeplessness could be caused by the medicine she is taking. My daughter has noticed that when the baby is up and feeling good, she "wrings her hands" a lot and to me that would mean that she is very "wired" inside.

Can someone give me some advice or should i stop worrying and just enjoy her?

 

Thanks for listening

 

Mawmaw