Hi Jen,

 

In the U.S., newborn screening results are most commonly measured in units "ng/ml." ("nanograms/MILLI-liter.")  However, when talking about "normal" levels, or when assessing hormonal control after a patient has been put on medication, bloodtest results are usually reported in units "ng/dl."  ("nanograms/DECI- liter.")  "Ng/ml" and "ng/dl" are different from each other by a factor of 100.  (I.e. 200 ng/dl= 20,000 ng/ml)

 

 

So, yes, 200 is relatively "normal," when the doctors are talking about "ng/dl." But, they are extraordinarily HIGH when talking about "ng/ml." If the doctors say that "10,000" is when you need to get concerned, they mean 10,000 ng/dl.  But, as I said, newborn screening results are normally posted in unit "ng/ml" which would make your daughter’s newborn screening results the equivalent of 10,600 and 16,900 ng/dl....in other words, extremely HIGH!!  Along with the clitoromegaly, high potassium, poor feeding, lethargy, tachycardia, jaundice, etc., etc., etc., they are almost certainly evidence of a very sick baby with CAH! 

 

Like others have said, I would try to get your daughter seen by a pediatric endocrinologist ASAP!!

 

From old posts on this mb, here are the names of a few peds endos in the Dallas-FW area.  If you post to the parents who live in that area, perhaps they would also be able to help you as well!

 

 

********

 

re: re: re: re: Need help finding a good pedi/endo with CAH experience
Oct. 27th, 2005   2:22pm

My son see Dr. Dickson at Childrens in Dallas Texas.  We have always been very pleased with him.  We have a four year old son with SWCAH.

Carrie

CArrie

 

 

 

re: re: re: Need help finding a good pedi/endo with CAH experience
Oct. 27th, 2005   2:23pm

Hi Grady,

Congratulations on the baby boy!!!  I don’t know of any doctors in Florida, but since you had mentioned relocating to Texas and that is where I live I can help you out there.  I live in the Dallas/FtWorth area and we go to Children’s in Dallas to Dr. Tannin and Dr. Kaiser.  They are both wonderful and both see my son on each visit so there are always two opinions.  If you will be moving closer to Houston, you would want to talk to Sandra.  She lives close to Houston and I believe seen a ped endo there.  You can find her email at the cares foundation website as she is the leader of the Texas support group.  Hope this info helps.

Robin

 

Re: re: re: re: Need help finding a good pedi/endo with CAH experience
Oct. 29th, 2005   10:25pm

I’m in the DFW area, but on the Fort Worth side.  My daughter is 13 months old.    We go to Cooks Childrens in Fort Worth and see Dr. Thornton - he and his staff have been wonderful to us!  I highly recomend him :)

Amanda

Amanda