Ewan got back from MDA camp yesterday afternoon. Today, when taking his morning pills, he let it slip that he didn't take his Prednisone a couple of times. After asking a few questions, I was able to determine that he missed Sunday through Tuesday. I'm sure they just gave him the bag with all of his pills and he only took the OTC stuff that was in his normal weekly pill holder. We had to keep the prescription stuff in its original containers. If we had been allowed to store them the way he is used to them being stored, I'm sure he would have been just fine.

Anyway, my question is this. Has anyone else had their son miss several days of his steroids and what were the consequences? I know that when you stop steroid treatments, you are supposed to gradually wean off of them. Ewan has been a little moodier than normal today, but I don't know how much of that is from missing the pills and how much is from coming down off of all the fun of camp.

Also, I know that he can't "make up" for the days he missed and that we just have to put him back on his regular schedule, but how long might it take for his little body and mind to recover from this?

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Hi Jerry,

Please let us know what your MD says to do under these circumstances. It will be helpful for all of us. I hope Ewan is ok.

cheryl

ps I would not hesitate to call MDA straight away. They need sorting out before some kid gets hurt or sick from this type of thing.
Have you contacted MDA? This is absolutly inexcusable. There is no reason that your son should have missed three doses of his medicine. You need to get to the bottom of how this could have happened so that it does not happen again or to another child with worse results. Please let us know what they say when you do speak to them.
Justin has missed several days in a row of prednisone before and he never had any problems. A little bit more crankiness when he started back on them, but nothing major. He missed them due to stomach virus' and things like that.

--Samantha
I know Dr Wong has very strong opinions about this and does not want boys to even go one day without them. speaking from a nurses point of view adrenal crisis is very serious and for all who miss even a day it can be very serious. even if nothing has happened to your child in the past missing a day or so PLEASE do not do so anymore. for stomach bugs etc they have IV dosing that can be given and Just last month Dr Wong told us that if child has stomach bug to try everything to at least get the steroid down, if that does not work than get the IV dose at local ER. I don't mean to sound like a know it all or bossy but I get the chills thinking of that 7 year old in England and don't want anything that can be avoided to ever happen to one of our boys again.
Just a quick update on this. We are going to clinic next week, so I plan on bringing the issue up at that time. We saw no big health problems, other than some emotional ups and downs which may or may not have been the result of fluxuating levels of Prednisone in the blood.

At any rate, I will bring it up, but to be honest, I equally fault MDA, myself and Ewan. When we dropped him off and I handed over his meds, I asked if we could keep the OTC stuff in his days of the week pill keeper. They said that would be okay. I told them that Ewan knew which ones to take in the am and which to take in the pm, so they could just give him the meds and he would be fine. Well, the Pred obviously had to be kept in the original container. He's so used to having them all in one place that he completely flaked on them for those three days. Yes, MDA should have kept a closer eye on him to ensure that he was taking the meds, but the bottom line is that I TOLD them he would be okay to do it on his own. Next year, we will take steps to make sure this doesn't happen again. If they would just let us keep the prescriptions in the pill box, everything would be okay. But I don't suppose they would allow that.

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