Adrenal management....again!!

[yaf_user681_15459]

Hi,

Sorry..another adrenal question from me!! After another Synachen test, maddies (aged 5) adrenals are worse than last time (not been told level this time, last time was 16!!)

Anyway she's on hydrocortisone 3-4 times a day depending on a multitude of things. Prior to her going on to this, she was on pred for 3yrs. That was simple to manage - it was one tablet once a day!!

Anyway....I can see her dip quite alot between doses of hydrocortisone and I can tell she needs the next dose. When she does any exercise, should I change her dose to accommodate this?? She seems to tire very easily compared to ther children her age. She wants to do it but her body just can't maintain the activity level. She went swimming with school yesterday and was quite poorly last night and then this morning it took her ages to kick start, if that makes sense. I've picked her up again tonight and she's wiped!!

This is how she was when diagnosed 3 yrs ago. I feel we are struggling with management..it's all so confusing yet we don't have any support from the medics. Our asthma consultant is amazing but when it comes to adrenal side, we have nothing!!

Any help would be sooo appreciated xx

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Assuming you have rules for sick day dosing, it might be worth trying this for a few days (doubling dose - I don't know anyone with SAI who doesnt do this - but maybe its different in littluns). I know that my adrenals notice an infection WELL before I do, must be even harder to pick up an infection in someone else!

In terms of exercise - theoretically, no, she shouldn't need extra hydro, in practice however it doesnt always work out like that. If you were doing any kind of endurance training or crazy exercise then you'd need to double up, and if Maddie has particularily brittle asthma, any exercise is going to put an increased stress on her body. That is really what you're thinking of - 'is the body under any stress?' and if the answer is yes, then you need to increase HC.

Hydro (at the correct dose) should last about 6hrs - not sure if you've been told this - but I find it can help. When i'm not on pred I find that often my first and second doses are quite close together with my third one being much later - so its always worth remembering to ensure it isn't more than 6hrs afterwards or i'll crash pretty hard.

Are you under an endo consultant? Might be worth it to make sure you're clear on the 'rules' and also to run tests to check it IS SAI (as opposed to pituitary issues etc) as endo is a widely misunderstood specialty - its the worst one ive come across (in terms of non-endo-cons tryning to treat it). Maybe worth a refferal, maybe not, but worth considering.

Also, don't forget that sometimes kids get bugs and get tired and feel rubbish. How obvious are Maddie's 'low steroid' sumptoms. I personally tend to get tachy, tired and dizzy very early on. Then i start to get postural drop. Then i become confused and grumpy (which is when my mum starts to notice). Then i get very pale, with low BP and will go curl up in a corner somewhere. Then i just start ignoring everyone and refusing to do anything (other than maybe cry and tell everyone i hate them) and by that point my bloods are all over the shop and i should probably start stabbing myself. At different points i get the nausea/vomiting, stabbing stomach pains and headache. Those are all pretty good things to look out for as being more specific to adrenals than 'just' being tired. I suspect it probably is the case, especially if it is long term. But I let myslef get quite anemic on the assumption is was adrenal stuff, so its worth rememebring to not let pre-existing diagnosis be wrongly accused of causing symptoms.

Final point is does she have any stomach upset at the moment? With SAI you are so often told about vomiting steroids, and the need to inject in that scenario. On addisons forums it is widely accepted that and kind of D&V or bad stomach pains, severe nausea, etc can all be signs that stomach is upset enough to not be absorbing the full steroid dose (at a time when if anything the body needs extra) and so can require a huge bump in dose (with discussing with GP/Cons) or even in some cases an admission to get things stable. Just another thing to watch out for (esp as crisis can upset stomach too!)

Hope thats clear - and somewhat helpful!

[yaf_user681_15459]

Wow thank you sooooooo much!! I'm really truly grateful for this reply. It's wonderful to hear from someone who feels it themselves and can relay that to me. Due to maddies age, it's difficult to dissect her symptoms. Thank you loads.

Yup she complains of random pain/stabbing/cramps in her tummy. She flakes easily compared with my other children. Her blood sugars go low, she goes very pale with dark eyes too. Also, she goes very cold (around 35.4) She also complains of headaches.

After the Synachen test, she was really dizzy and cried that she felt 'wierd and scared'..she looked dreadful too..the colour had just drained out of her!!

Her consultant is a paediatrician with endocrine interest. In our hospital that's all we have. However she has been referred to anther hospital to a major team (3.5hrs drive away!!)

As for testing if primary or secondary..this has always been my issue..I've always questioned that her breathing difficulties are as a result of endocrine issues and not the other way round!! She was born with a dodgy thyroid but that's been ok since. Wouldn't the low dose long Synachen have picked this up?? I've questioned it lots and all the medics say is that it has to be secondary to steroid use!!

Thanks once again, I really really appreciate you taking the time to write.

Emily x

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My understanding is that it is a whole different type of test that tests primary/secondary. All synacthen does is tell your adrenals to produce cortisol, it doesnt tell your pituitary to tell your adrenals to produce cortisol! My endo wants to test my pituitary (because she wants to be thorough) but she needs to wait till i'm off pred.

Adrenal crisis (or the feeling as you head towards it) is the strangest feeling in the world - i wish i could describe it in words. Because it is the body starting to shut down, instinct tells you to go curl up and sleep and hide (the idea being that you're very vulnerable to predators) but because cortisol is part of producing your fight or flight response, that isnt working properly, so you're getting 'fight or flight' feelings without the fight or flight physiological response, so essentially you just feel WEIRD!!! The first time it happened to me i just remember mum getting angry at me coz i was just telling her to go away and crying and saying i didnt feel well but she was asking me in what way i didnt feel well. The issue being that I was so confused (maybe its a little similar to when someone wakes you up from a very deep sleep, or that slightly foggy feeling you get with a very high temperature - not quite but thats the closest feeling i can relate it to) AND trying to articulate something that even now I find very hard to articulate that i was just getting more and more frustrated and scared and upset. The further into crisis I get the more angry I get, and the less able to make decisions. I very much lash out (part of the animal response to get everything away from me so it wont attack me while im vulnerable) which upset my mu the first time. Thing is she's there saying ""only you know how you feel - do you need to inject/take more tablets?"" (we have a very low threshold for injecting in our house because I do have gastro issues, and also if i have a full-blown crisis my lungs go MENTAL. But the point is i honestly DONT know how i feel at that moment. Maddie is right - it just feels strange. My endocrinologist once jokingly said to me that adrenal crisis is the poorliest you can feel without being able to think of a single symptom - and she's right. Have you ever had a lot of nebs back to back. And afterwards you do feel a bit weird - you can tell that the main issue is that you're tachy, but you also get a slightly anxiousy type feeling thats quite hard to explain - its not dissimilar from that part. That is my very bestest explaination of how crisis-y-ness feels - hope thats helpful!

When i do feel like that a couple of things: my endo has specifically told me I should always take steroids if i'm in doubt as to whether i need them. If it doesnt improve at all (esp after injecting) then she says i probably made the wrong call, but that can be learnt over time. She has said in the short-term i cannot overdose on steroids, the only issues occur with long-term overuse. Check with Maddie's consultant whether that rule holds for you - it's useful to have a 'default response'. In terms of feeling like that, it is nice to have someone give very clear simple instructions as to what I should do (you feel confused and like you want to be doing something but dont know what - part of this fight or flight response having nowhere to go). It is nice to lie down and be cuddled by my mama (it feels very vulnerable), being reminded that we're sorting it out, how i feel now is normal, you understand i feel very strange and that you're sorting it. If you get angry or frustrated i will cry and lash out. Usually afterwards I will feel very hungover and want to sleep it off. That is my personal feelings and thoughts - I'm sure everyone is a little different, but i hope it gives you an insight

[yaf_user681_15459]

Thanks so much, it's good to know how you feel so I can understand more how my daughter is feeling.

I'm struggling with the not knowing. Also this is the first time since her original diagnosis a few years ago, I'm asking myself 'why' about it all..why is she poorly, what is making her poorly etc. I just wish I had answers but I don't. It's so frustrating and horrid being out of control..I wish there was a magic tablet that could make it all ok..but instead we have hydro that has sooo many variables depending on this or that.....and I'm left, as a mummy, to play detective as to how she's feeling and therefore how much meds she needs!! The fact that it can be fatal puts so much pressure on too!!

Right.....will pull myself together now!!!!!

Thanks again. Xx