I posted about a month ago to remind everyone to make sure their medicine cabinet is well stocked and ready for the cold and flu season. Now I am here to encourage everyone to "make a plan".  I invite everyone to add to this with their own tid bits of info. Danny once posted a flow chart that he and his family followed if one of his CAH children got sick. I copied it and took it to my endocrinologist AND pediatrician. I went over my daughter's needs and we created our own personalized "flow" chart sorta say. I know when my salt waster is sick, my heart skips a beat with worry. SO, for me to take away some of that worry, making a plan worked. You may not think you need it until you are sleep deprived and antsy. I have found that writing down times I took her temp., her temp, the time and dosage of her last meds. including tylenol ect., this helps clear my mind. It also helps because once you call the doctor, these are the first questions they will ask. Every child is different. Some are severe salt wasters, some are non salt wasters, and some are mild salt wasters. Basically you know your child if not now you will through the years, and you can fine tune this flow chart. I know one mom that one of her CAH daughter's does not do well with fevers yet her other daughter does fine. And visa versa. I post this because I still have the post from last year that will ALWAYS be posted in my mind about the mother that lost her son. The mother that lost her three year old son, seemed to not mention through his vomitting or diarehhea, that she made a phone call to her doctor or increased his meds or used Solu-Cortef at the time of lethargy. Now she could have, and not posted that info. I am not here to condemn the poor mother. My heart broke for her thinking perhaps she did not get specific directions on how to care for her CAH son. I don't know. But even the thought of a parent not getting directions bothered me enough to continue posting this just in case. But a lot of us got the impression that these "deffenses" were not used. It was through her loss that will always drive me to post these reminders and suggestions. If you do not know how to use Solu-Cortef ask you endocrinologist. An example of how a chart can be set up is like this. :

1. Child gets a fever----- double or triple dose the cortisone (Cortef/pred.) (There are several different opinons on whether to double triple or even give the Solu Cortef. I hope they post and share their insight.)

2. I then give a Children's fever reducer, and even use this cool device that sticks to my daughter's forehead. It is a gel pack that stays cool. It helps with reducing the fever. Also I have on hand children's acetaminophen suppositories. You can find these in your local drugstore. You buy these according to your child's age and weight I believe. Some pharmacies keep them behind the counter in the fridge to keep them solid. I only give these when I my daughter cannot hold her meds down or she refuses. She takes chewable tablets now and the last time she was sick with a cold and fever she refused the Motrin but took the Cortef. She was so congested she was afraid of throwing up so she refused chewing the Motrin.  It is hard to force a pill so I just waited and used the suppositories. My ped. recommended to not use them so freely. I told her it was a matter of life and death if I did not get her fever down. She understood, but cautioned over use. Check with your ped. about use of these suppositories.

3. If the fever still does not come down at all after both the fever reducer and Cortef was given we inject with Solu-Cortef and take to the E.R. I sprinkle phone calls to my pediatrician through this to inform her of what is going on. If an E. R. trip is needed she either meets me at the hospital or calls and briefs them about CAH. (Now every child and doctor will have different ways or opinions. That is needed. Take every piece of advice  from here and weigh it with your doctors.) Fevers are dangerous to not get under control!!!!! Even in a non CAH child.

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1. Now if she vomits I triple her dose of Cortef. If she vomits again, we inject and then take her to the E.R. after a call to her pediatrician. The pediatrician than calls her endo.

***Again, others say inject as soon as vomitting occurs stating that the stomach lining shuts down after vomitting occurs, not letting an oral dose of Cortef be absorbed as fast. This too differs from person to doctor ect. I hope other will elaborate on this subject too.  If her eyes start rolling or she seems to go into some kind of seziure then of course we are to call 911. I have contacted our local EMT's to alert them to my daughter's condition. (I cover all aspects) I am glad I did because I found out because of my small town, they are volunteers, that do not always have a person that can administer drugs on hand (a medic). They will if they know they need her. So now they know if my call comes in they will send her. They also do not carry cortisone on their truck. Their drugs are limited that they carry. So I would either have to provide the Solu-Cortef or in some communities will not even use it for legal formalities, leaving it up to the parent. I carry this with me where ever I go. Her Medic ID information indicates it is carried with her. The Medic will also give her a bolus. (sp?) (an IV of salt and sugar, water, ect.) I also have a letter written by my endo. to take to the E.R. with me with a brief description of my daughter's CAH, the date she was diagnosed, date of birth, full name, name and number of endo., and how to treat her in the E.R. Some parents have found that the E.R. staff has brushed the parents off as over reacting when they bring thier sick child in. Not understanding the gravity of CAH when a child gets sick. 

I do not post to worry, I post to inform, to take away the worry. I am a worry wart period. The only way to ease my mind is to be prepared the best I can. It is not until I ran around like a chicken with my head cut off that made me sit down and get organized. Three in the morning when all kids seem to get their sickess, is not a time to plan or second guess what your ped. or endo. would want you to do. Moving fast on a CAH sick child is important. Please do not take this as a post to worry about, take it and make a plan. I find that having my ped. and endo. work together is a huge plus. Gather information, take it to your endo. and ped. and make a plan. Your endo. should have the last word on what to do. If neither is interested in helping make this plan, find a new one that will. Good luck! I invite everyone to add to my plan, delete, ect. I am open to many pieces of information and advice. PLEASE, my object is to insure our children's health, and to take the worry out of the parents. God bless.