Re: A Chinese girl with CAH need help!
8/30/99 7:57 PM
I feel for you so much. What a difficult thing to see your child so sick. Many parents write on this message board and I am sure you will find great support here. You are so strong and such a good mother for doing everything for your baby. I have a 14 mo. old boy so I don't know a lot, but I'll try to answer your questions and I am sure others will too. When my son was 3 months old it was so hard and someone on this board said "it will get easier". They are right. You are going through the hardest time now. To answer your questions . . . 1) For a fever or vomiting we have been told to double the dose of Cortef (hydrocortisone, cortisol, taken by mouth). If our son is not able to keep the dose down because of the vomiting, or, if he gets lethargic and unresponsive we are to give him an injection of solucortef (injectible hydrocortisone) and get him to a hospital. Broken bones also require an injection. We have been told not to increase the dose for common colds or small things with no fever. I think people have different opinions on this, but I have heard that they do not develop their immune systems properly if they are always given extra hydrocortisone for colds or minor things. 2 and 3) I am not the best at the formulas. There are at least 2 people who sometimes visit this board who are excellent at explaining the formulas. I hope they answer you. All I can tell you is the formula my son's doctor uses = 31 inches tall and 24.8 pounds = .6 meter squared of body surface = .6m/2 * 15mg/m2 = 9mg. My son takes 9 mg divided equally three times a day. (this is 4.5 ml of Cortef (hydrocortisone). 4) We have always given it three times a day. As close to 8 hours apart as we can. For his night dose we just slowly squirt it into my son's mouth while he sleeps. We also give him milk at that time as the medicine seems to upset his stomach. He gets his morning dose as soon as he wakes up. 5) The bloodwork has been very hard for us as well. We only have him checked every three months as long as his levels are o.k. There is a cream brand name EMLA that numbs the area of the blood draw. We have used that and it helps. Although his last draw was from his head so we couldn't use it. There are 24 hour urine tests but I think they are difficult until the child is potty trained. Sorry for the very long message - I just feel for you. You are doing a good job. Love your little girl. I am sure she is precious. Take care.
Chris D
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