I would suggest you talk with the doctor that is her primary care provider for the addison's and follow his/her recommendation. It sounds like she is having a short procedure that is probably fairly simply from the surgeon's viewpoint. Some don't recommend stress steroids for simple procedures. Some still do stress dosing anyway. Talk with her doctor. If that isn't possible, I always think it is better to be safe than sorry, and I'd give her some extra. I had surgery in december and no one wanted to address the issue so I took the extra myself. They don't always seem to know what to do with it. They want someone else to take care of it. I was miffed.

Vanyel
I have spoken with her PCP and right now it is kind of a tricky situation as we just started her on medication no less than three weeks ago and we are still trying to find what works with her. Our PCP is a MD/DO and also an alternative medicine doctor and is not treating with straight Cortisol as she is so young that he does not want her system completely reliant on the medicine. She is currently taking DHEA and adrenal supplements. PCP suggested that if the procedure is only for 5 to 10 minutes to just give her what her current dose is before surgery, if the surgery is going to take longer he wants a larger dose. I am not sure what to do since I have also spoken with the surgeon and he said if there is additional bleeding she may be under longer and he is already estimating 10 to 20 min. My daughter is very nervous about the surgery and is already showing some signs of stress. When they go to put the IV in I am afraid of the level of stress she will be under. It took me and two other people to hold her down for a blood draw last week and she was shaking for a long while afterward. I gave her a partial adrenal dose in the car and she settled down on the hour drive home! Thus the worry of a mother has taken hold of me. Remember she is only 6 years old!
I try to do a lot of research and I do trust her doctor as he has literally saved my youngest sons life by diagnosing adrenal insufficiency in him almost a year ago when no one else knew what to do (long story but very interesting!) But I am not sure how long the surgery will be and what her reaction to the pre-op will be.
L.

I have checked out the first site you mentioned in the past but have not emailed Mike Welch yet. I may try to send him some of my questions tomorrow. My daughter is currently at a Father/Daughter dance with "my man" right now, and I have the boys so we are going to spend some time just me and the boys tonight. I need the break! Thank you for the information though, I really appreciate it! L.

L,
If your daughter is not taking any steroids at the moment, then I think you are safe to wait and watch how she does. The adrenal supplements and DHEA are not critical in the stress response. If she has problems, she will need hydrocortisone. Do you have any? Make sure the surgeon and anesthesiologist know what she does take and that if there are any problems she will need hydrocortisone. Then they will know what to do should anything arise. What surgery is she having?

I do not have any hydrocortisone as we have some of her results back but still need to do some further testing. She has an extremely low A.M. Baseline Cortisol and throughout the day but we have not done the ATCH test because our PCP did not want to subject her to the test yet, (she does not do well with shots or blood draws as you read above)and we were not expecting to have a surgery come up like this. I must have some good doctors though as I just received a call from the surgeon. The surgeon said that they want to do a 23 hour stay after the surgery to monitor her response and see if she needs any steroids. If she does they would also send her home with a couple days worth of steroids to stabilize and then wean her off. My PCP also has a list of things that he wants me to do and has been in contact with the surgeon! I have dealt with many other doctors and am very fortunate to have found our PCP, even though he is not in our network. I have had some REALLY BAD experiences with doctors!
We were also trying to move slowly with the testing as our financial situation is not good and our insurance has very high deductibles before they will cover (or deny!) anything. I am not looking forward to getting my mail in a couple of weeks! I just got notice last week that the Cortisol testing was not covered by our insurance when they had told me, prior to the tests, that it was a covered benefit. Sad thing is we have linked the adrenal insufficiency in our youngest to his Central Sleep Apnea and have almost eliminated his apneas by supplementing his adrenal system! I have the sleep studies to prove it! He went from 66 to 12 to 5 central apneas! Yet the insurance will still not cover the cortisol testing. (They are refusing to cover the last sleep study also!) Think of the possibilities though- central sleep apnea in premature infants- test the adrenal system- maybe save a life! Any way I am way off the original topic of discussion. My daughters surgery is to remove something in her uterine wall. It may cause additional bleeding when removed, so we do not know exactly how long the surgery will be. If you could keep her in your prayers we would appreciate it!
L.

L.,
Sounds like the doctors are taking your daughter's situation well in hand. That is good. I'm glad they are paying attention. I hope that it all goes well for her. Don't be afraid to ask lots of questions of the doctors and insist on understanding what they are doing and why. I'll keep her in my thoughts and prayers.

Vanyel

I had surgery last week and had a stress dosage added to my iv. My endocrinologist made sure the surgeon knew to give me the extra doseage. Surgery went well and I have had no Addison's side effects.

I feel for your daughter. I hope everything goes ok for her. I know that everytime I have surgery even if it's just a minor surgery my Endo increases my Cortisol for 2 days before and 3 days after the surgery. But since your daughter is only 6, that might be too much. I do however suggest that you give her an extra dose before the surgery just to be on the safe side. I hope everything goes alright for both of you. Good luck.

dear three angels:

i HOPE i am not too late in responding!!!

please take this the right way when i say this:
NO NO NO NO NO NO NO!! clearly i am not a doctor, but you (and he) are taking a *HUGE* gamble by not giving your daughter a stress dose of steroids before surgery.

an extra dose of her medication is what you would give her perhaps if she weren't feeling well at night, if she was low on energy, smaller issues like that. YOU DO NOT KNOW HOW SHE WILL REACT TO SURGERY. if she were to go into crisis for some reason, especially while under anesthesia for fifteen minutes, the odds are great that you would not figure it out on time.

i would bet my right arm that the hospital staff will not be overly familiar, if familiar at ALL, with insufficient adrenal disorders, ESPECIALLY in children. i'm one of the lucky-duck-it-took-forever-to-diagnose patients, because NO ONE knew to look for addison's ... because they weren't familiar with it! it was so frustrating to me that i now ask every medical professional that i come into contact with if they are familiar with the disease. it sickens me to even TELL you what the response has been in the last four years of asking. i have been to *numerous* er visits (which is always a few nurses and doctors), specialist appointments, to have surgical procedures done - so i've probably asked well over 150 people with some form of a medical degree, and i bet 15 were actually familiar with the disease. almost everyone says that they remember the name from med school, but that they don't remember anything about it, or that yes, they know what it is, it's a disease that dog's get. i'm not sure how long your daughter has been diagnosed with this, but if you haven't already, i think you will most likely find that YOU will have to become an expert on the disease, and in any kind of surgical/er/urgent care type situation, you will most likely be educating the doctors and nurses treating your child; they'll simply be double checking what you say on their computers or w/endocrinologists. because i'm also a pain patient for other reasons, and that pain w/the addison's did not go hand-in-hand, i learned this the hard way; but for you, it will be even more difficult, because you yourself are not the patient.

that being said, the fact that your daughter is *already* nervous about her surgery (which is normal, but in a normal child's body would demand more cortisol), coupled alone with the fact that her surgery could run longer if there are any complications, in my opinion, should answer your question. if i were needing to make this decision for myself, i would actually be sure to have IV hydrocortisone before the surgery, which is actually what the standard procedure is. i wondered why your doctor didn't order this right away, but then saw that he is a PCP...
has your daughter seen an endocrinologist? because in my opinion, it should worry you that your doctor has not even done an acth test on your daughter yet due to her dislike of needles. while that's totally normal on her part, that is *not* ok on his, and only because i have addison's myself, i don't think i would allow my daughter to have aurgery before i knew exactly where her cortisol levels were. if hers are close to zero, and something goes wrong during surgery, and she goes into crisis mode w/out even so much as cortef in her system ... well, you know the rest.

there is a wonderful woman on this site, mommyfaith, who had the *terrible* misfortune of losing her 2 year old son last year to addison's - she was pushed around w/appointments, and he passed away right before he was finally due to see the endocrinologist, and would have been diagnosed. i'm sure she would tell you not to take ONE SINGLE chance! (not that i think you purposely would - i'm just telling you what i know, again, since i *do* have the disease.)

i didn't sleep last night, so forgive me, i feel like i'm rambling. to sum up (and this is all in MY opinion, but please know that i have done copious amounts of reading and research on this disease, so my thoughts do not come out of thin air):

- your daughter needs to have her acth checked YESTERDAY, by an ENDOCRINOLOGIST (i know this pcp saved your son, but that does not necessarily make him equipped to act as a specialist for your daughter)

- should see an endocrinologist about her daily medications for her addison's

- ABSOLUTELY needs a STEROID COVER DOSE before her surgery, through an IV; the adult standard is 100cc hydrocortisone). you can demand this through the hospital; tell them she needs an endocrinologist to administer.

if you cannot have these things done, than i absolutely, positively, without a doubt RESCHEDULE her surgery.

best of luck - let us know what you decide to do!

...and i'm a big fat idiot because i didn't see the last response that you wrote. i'm so glad that they decided to keep her overnight, and give her steroids. i'm sorry if i sounded like an idiot.

i also did not at all mean to infer that *you* were doing anything wrong by not testing her cortisol, i just thought it sounded a bit irresponsible of her pcp. i am SO suprised that your insurance won't cover that! ridiculous!! is it very expensive? you know what really annoys me? if they DID cover it, they would pay about HALF of what you will be charged. why medical costs are so much cheaper for insurance companies is just ridiculous, and beyond me.

again, i hope things go/went/are going well -
please let us know!

*misa*

Misababy:
I am not offended by your post, I am thankful for a listening ear and a patients perspective on this subject. I am trying to take care of children that have medical issues and I am trying very hard to learn all I can. I am open to any input you might have. I have been so consumed with the youngest ones medical conditions that it has made life difficult. We did a sleep study on the youngest in November and were going to retest his Cortisol levels, start him back on medication, and do a repeat sleep study in December. When we retested the youngest I decided to have myself and the other two children tested at the same time as the youngest. If I had not done that we would never have know that my daughters cortisol was low. (3.2 A.M. baseline) I am thankful that I tested her and now need to do more as I am very frustrated at this point!
Surgery went very well. She was under for only about 5 minutes. I did however have some major concerns. When we arrived for surgery we were prepared to spend the night. They said they would see how she does and send her home if there were no complications coming out of general. They did not give her the dose of steroids that they said they would because it here PCP said it was not necessary and it was not ordered by an endo! I almost canceled the surgery but it needed to be done. I was a nervous wreck during the procedure since I had just received the referral to the endo. (I need to get some paperwork from some other physicians and schedule the appointment. Pediatric Endocrinologist appointments are about 2-3 months out right now!) My daughter handled going back for the surgery like a champ and was all smiles when they put her under! She woke up slowly and they did not watch her like I was anticipating. She was released within two hours of waking up! My husband and I kept a close eye on her the whole day and I slept by her that night. It is extremely scary for me because I have been reading about what your body does when it is in adrenal crisis and the symptoms vary so much from person to person. I am not the patient and am trying to elicit the feelings of a 6 year old to judge if she is having a problem. I also do this with the two and eight year old. My PCP is trying to supplement the childrens adrenal systems to boost their own production of cortisol. It has seemed to work with the lab results that we have on the youngest, but the older two just had the cortisol testing done at the end of December and started medication the second week in January. My PCP does not know yet that I am looking to get a second opinion from an Endocrinologist and that if I can get into one I am going to DEMAND an ATCH test. In my mind this surgery happened to go well but I want to know for sure where we stand with the supplementation and the cortisol levels. I have had too much to deal with medically with the children and will not take chances. It took a miracle to get my daughter her and I intend on keeping her here!
I am just really frustrated right now because I was lied to. The surgeon said that the anesthesiologist would give her a steroid boost and observe for 23 hours and they did not do what they said! They sounded like they knew what they were doing! I thank God that everything went well in spite of the doctors.
Thank you again for your post!
L.