Hi Lesly,

Considering that your daughter is only 4 months old you don’ t have the clinical background to support not having the solu cortef shot kit. Is your daughter Simple Virilizing? I have a now 2 1/2 yr old son with SV CAH. He was diagnosed through newborn screening as a SW and later at about 4 months was re-diagnosed as a SV. We did have genetic testing and so far his clinical presentation (phenotype) and his genetic presentation (genotype) match. He has had one severe boo boo 2 days before his 1st bday and did not require the shot. He barely required extra cortef.  He has had fevers, vomiting and all the lovely illnesses that his non cah brothers bring home from school. He has never been close to a crisis. Not even recently when he got two stitches in his forehead.  I guess what I’m trying to say is that right now, it’s too early to tell how your daughter will react in times of stress. Why not have it just in case. It’s like an insurance policy. It doesn’t hurt to have it.  With time, you will come to get a feel for how your daughter handles different situations.

As you have probably already learned by reading the experiences of some of the other people with CAH, just because you have Non Classic or Simple Virilizing CAH doesn’t mean that you will act like what you are diagnosed with. For example, some NC’s can have salt wasting and some SW can be more like SV or NC’s. It’s a broad spectrum. I am expecting my 4th son in a few weeks and he too has CAH. Although he has same genetic mutations as his brother, I am worried about how his CAH will manifest itself. Of course, I’m hoping that it will be similar to his brother but each person is different and we don’t know until his is born and we see how he does. So...after all of that I would say...get the shot kit. Hopefully, you will never have to use it... there are  people out there that never have had too. Chances are most NC and most SV will never have a crisis. The key word though is MOST.  Just think how thankful you will be though if you do need it. If anything get it for your piece of mind!!

Good luck,

Sandra