Hydrocortisone questions

[Rosita5]

Hello ALD parents,

We've had some incidents with my son and I wanted to know if anyone else has been through this. My son started Hydro when he was 1 year old, he is now 2.5 and they've not changed his dosage. Well there has been two instances now where his temp increases suddenly at night which is then followed by vomiting and diarrhea. The vomiting and diarrhea is not super violent but it happens every few hours. It's very odd to me because his brother usually gets sick before anyone yet these two times no one was sick and we've been in quarantine. I was just curious if anyone has had dosage problems in the past where maybe their child needed more for their size or if they weren't administering it properly. We still mix the medicine with juice and use a syringe.

Endocrinology always wants us to see the PCP, but generally the PCP doesn't know about ALD so that is frustrating. Well the PCP said he probably had gotten a virus, but I just think that's unlikely being we've been in quarantine. Yes my husband still goes to work but they make him follow strict cleaning policies at this time.

Has anyone experienced these problems when their son eats something that upset them, did you have dosage problems, was you son in some kind of pain that wasn't visible but was causing stress?

Thank you!

[AussieBob Moderator]

I would updose any time he get sick looks like getting sick Just do it and you should have been schooled in this dosage regime. Email me and I will send you some data [e-mail]

[Rosita5 in reply to AussieBob]

Thanks for your reply AussieBob. I do stress dose once I notice his temp rising but the problem is that, it happens suddenly and usually at night when he is sleeping. He shows no kind of symptoms like runny nose, fever or anything during the day.

[fightald Partner]

I would insist on seeing his endocrinologist again and review his dosage. This sounds to me like he is not getting enough cortisone and his body is going into stress mode. Maybe he needs a second dose in the afternoon. I ended up in the ER with my son on several occasions because of addison crisis. You should not need to stress dose him in the middle of the night.

[Rosita5 in reply to fightald]

Thank you for responding, that is my suspicion yet when I call his Endo and speak to the nurse she says it’s “probably” not his dosage. They don’t even ask the actual endocrinologist. So I’m getting bloodwork tomorrow and gonna make sure.

How did your sons Addisonian crisis occur? Was it also at night when his body ran out of meds? Was it after a while of not enough dosage that this was happening?

[fightald Partner in reply to Rosita5]

It was brought on by migraine and stress. He was diagnosed with ALD after his first crisis when he was 8. Unfortunately, too late for transplant.

Our bodies make our first bump of cortisone around 4:00 am. If he's not dosing properly through the day he will crash. Be sure to have pediasure or some other beverage high in electrolytes to give him when this happens until you can see his doctor.