Hi Tom,

Good luck with Dr. Hwu :)  You might like her...maybe she just didn’t like me. I tend to ask lots and lots of questions and she felt that the info she had would be to basic for me but she didn’t bother to help me get the kind of information I needed...I hope you have better luck with her.

As far as Congenital Pseudo Hypoaldosteronism if it is the same as just Pseudo Hypo Aldosteronism (PHA) then... I have met a family who lives in NJ whose daughter has PHA (PsuedoHypoAldosteronism). I’m not sure if it is the same as far as symptoms or not. The little girl is a patient of Dr. New.  The baby now over a year old was thought to have CAH at first but then was diagnosed with PHA. She is on a few different meds to control the salt loss and keep the potassium normal. The mom has seen a nutritionist to make sure that she eats the right types of foods to keep her potassium and sodium in check.

The mom’s name is Nicoletta and if your son turns out to have PHA then I’m sure she would love to talk to you. We met by chance when both of our kids were in NY seeing Dr. New. We met during our hospital stay.  Jackson was getting some testing done and her little girl recouping from her near death crisis. By the way, Jackson and I stayed with them on our last trip to NY and the little girl is doing great!!! Thankfully, like CAH it is very, very treatable. She will be very happy to have someone else to compare notes with as she has not been able to find anyone else with this condition.  IN fact, Dr. Karaviti has a patient with PHA and I have been trying, unsuccessfully, to have her hook up Nicoletta with her PHA patient!

PHA is more rare than CAH and there is limited information on it. I would have to ask Nicoletta what and where she got her info. I have never been able to help her find a message board like this one for PHA. In fact I had in the past asked on this message board if anyone had heard of PHA and no one responded.

 Ok, my family is making me hurry to get ice cream!!!!  Please keep us informed...I hope your son is doing good and don’t worry...he will be ok...thank God for the medicine!! 

Sandra