Adrenal Insufficiency Support Group

I've been a little hesitant to talk about this because I feel like I'm not so great of a mother but I've found myself really wondering and finally decided that I needed it cleared up for my own peace of mind.

Back about a month after Chance was diagnosed our Endo told us to try to get every dose every day but that if we missed one it really wasn't that big of a deal and to just make sure we got his next dose in. Specifically he said we didn't really need to worry about things unless we missed several doses in a row.

We dose him at 6am and at 6pm. 1/2 his daily dose each time. On average I miss the 6am dose about once a week (usually because I am really tired and want to let him and myself sleep in a little). I feel guilty for doing it but don't feel BAD for doing it because there is absolutely NO change in his behavior either way.

But when I read about what everybody is dealing with regarding their dosing schedules and amounts and extra bumps to keep going etc it makes me wonder. As I said he has no change in behavior or activity level on the days I miss that first 6am dose vs the days he has it.

The only time I have ever noticed a change is one time when we missed it on accident (I apparently turned my alarm off in my sleep), then went and had a full day playing with cousins, and we weren't there in time to give him his 6pm dose as well (he missed two doses in a row). He was extremely tired that night but I made double sure to get his next day morning dose done and he was fully recovered that morning when he woke up at 9.

I'd really love to hear thoughts on this. I know it's a hard one because he's a kid and so small/young but I need to know if it really is 'okay' to occasionally miss that first dose (as long as nothing to "big" is planned that day) or if I need to make a bigger effort to make sure he gets that dose.

Gwyneth,

It may be a bit different with children? But I would guess that the more stable you can keep the dosing, the better for him. I missed a dose once (forgot) and within a couple of hours my muscles were seizing up bigtime. So like I said, it might be different for children being that they are a bit more flexible, etc. Or maybe he's just not telling you that his muscles feel different? But if you didn't observe noticable fatigue I wouldn't worry too much. Sorry I can't be of more help, I just don't know that much about children and their cortisol needs.

Deb

Hi Gwyneth

I think that dosing kids is far different from dosing adults. I would suspect that their adrenal system respond to demands a little different too but to be honest its only a gut feel.

I am pretty sure I have mentioned this before.

The big difference adults/kids I think is the higher than average physical activity that translates to a narrower range of cortisol needs. In other words if you could dose an adult exactly at what they needed it may swing 2:1 from one day to the next (eg 20mg to 40mg) whereas a kiddy might be only 1.2:1 (eg normalized to 28 to 32mg. Dont worry about my bad maths!) This means that stress dosing for exercise level bumps is far less of an issue for kids. Of course illness is something else..

I'd also suspect that he is being overdosed but his system is far more capable of ridding excess cortisol than an adults. I dont remember what his dosage pattens and size was except that was HC. I am sure that if we calculated the need by weight his dose would be far higher than adult levels. This really is a guess mind you, but since kids bodies are far better at doing all types of things I would suspect this to be true.

I think the major import is that you are reacting to tiredness and illness well. As he gets older of course I suspect it would be a good idea to start matching the diurnal curve better if for no other reason than his sleep patterns develop normally.

I had a pediatric Addisons paper somewhere. Not sure if it covers this topic but I'll see if I can dig it up.

Bad mother? No way! You are making choices based on the facts you have and the advice you were given. AI is rare enough to have many conflicting views and ideas. You are doing the best you can!

Bob

Gwyneth,

I wrote my first reply in a hurry - I echo Bob. You are a great mom, and only following doctor's advice. I like Bob's idea that the swing isn't as wide for kids, makes sense.

Deb

I keep thinking that I'm overdosing him too! Though he doesn't show any of the obvious signs of overdose. The fact that there is no change in behavior whether I dose him or not bothers me a LOT... I have never been able to shake the feeling that I'm medicating him for something he doesn't have!! But we've been giving him 5mg HC a day for it since August so I don't think it's really possible to re-test or anything. I trust our doc a lot (he takes care of a lot of kids who have AI so one would think he would know what he was doing)... Part of me just really wishes I could SEE something that shows me he needs it and it helps him. Which is an awful thing to wish because any symptom he would show to prove it would mean he was feeling yucky right?

So I had a thought. Do you think the fact that he isn't showing any sign of overdose (I'm having a brain block moment and can't even think of what the 'overdose' symptoms would be right now *sigh*)... anyway if he's showing no sign of overdose then is it logical to take that as a sign that he needs the medication? ie he's low so the meds put him up where he needs to be, vs him being where he needs to be and the meds putting him high?

Post edited by: Gwyneth, at: 01/22/2010 08:50 AM

Gwyneth

Have uploaded the following if you wish to read it;

"Primary Adrenal Insufficiency in Children: Twenty Years Experience at the Sainte-Justine Hospital, Montreal"

http://pages.suddenlink.net/vespergirl/K.pdf

I think though that yours is secondary rather than primary.. See what you think! I have not read it..

There will be a minimum and maximum "window" that you see when drugs are being administered for any reason. There is also an optimum point in the middle of that. In terms of "feeling" though it is impossible to maintain an optimum, only known when you go outside the window. You might find for example that you could dose anywhere between 2 and 10mg and no adverse effects would be noticed.

I dont think it is a good (or logical) idea to dose for onset of maximum or overdose level. At the point where behaviour changes it is probably already way too much and you are into immuno-suppression and too much BSL territory. It is of course a hard call to make but it seems endos like you to dose for occasional minimum/underdose situations instead. That way you know you arent going over the top.

Bob

I saved the article Bob, thank you. I will read it this afternoon (when I have the kiddo distracted by sesame street so I can focus *chuckle*)

Gwyneth,

I have always been frustrated by the fact that some of the symptoms (not all) are the same for extremely low, and also for too much cortisol. For example, high blood pressure (in me) can mean either low OR high cortisol. When I'm low, my blood vessels and muscles constrict - which raises my blood pressure, also when I'm extremely low, I get an adrenalin response which can feel very much like too much cortisol - and that also raises my bp. My pulse can either speed up or else become very low, depending on whether or how much adrenalin is kicking in. I also get very red in the face when I'm low, which can also be a symptom of high cortisol. Confused yet? Because I have been.

But the basic Cushings-type symptoms - weight gain, bloating, round face, high blood pressure, irritability are the symptoms that show up with repeated excess.

Deb

P.S. The integrated doc I went to on Tues. said my "head runs my body." In other words, I've gotten so used to pushing through when I feel bad that it's hard for others, when they look at me, to believe I'm fatigued, etc. He said my body wants to shut down but my brain just won't let it. I think kids can be like that, too. They just don't quit easy, you know?

Deb,

You just described me to a T. This is why I feel like a yo-yo. I get very red in the face and neck. The day of my crisis my whole body was beet red and my blood pressure which usually is pretty normal (use to be really low until I started on HC) was pretty high so the Dr in the ER didn't think I was in crisis because my blood pressure was way up. Oh the ups and downs of AI.

Barb