Just wondered if anyone could tell me what they carry their meds round in?
We've just been told Maddie (2) needs hydrocortisone injection if she goes into crisis. Trouble is I'm not sure what I should carry it around in as obviously we need it on us at all times.
Anyone?
I believe there are like little case in which people who need to carry any kind of injection should put it on there. ask in the farmacy, you should as well ask your asthma doctor or nurse if you have one, wish I helped even a little. and hope you are doing well
I've got a little make up type purse/bag which I keep all my vital medication in. Wherever I go, that goes with me. I like bags so I have quite a selection to choose from, so whichever bag I'm using that day, I'll make sure to transfer the purse is in the current bag.That way it's easy to make sure I've always got everything I need, and I've done this for so long that it's routine for me to check that purse is in my bag before I leave the house.
I do something similar to Glitterdust I use a pencil case for my epipens, inhalers and antihistamines. I use one of those plastic see through ones sold at exam time.
If the injector is in a reasonably robust container already this should be fine. Epipens come in thin yellow plastic tubes which fall apart in no time!
Bryony
Hi.
Like Maddie, I also have adrenal insufficiency and have hydrocortisone to inject in an emergency. Sadly, unlike epipens or insulin, the drug doesn't come in any sort of pre-prepared auto-injector, and thus it is likely that you will also need to carry needles (one set to draw up with, another to inject with), syringes, and the drug itself, which comes in glass vials. As the vials are fragile, I wouldn't be prepared to use a pencil case or similarly soft container as the vials could get damaged.
I carry my supplies in a Peli 1010 microcase (waterproof-cases.co.uk/peli.... As well as the injecting supplies, I also have a set of instructions from my consultant to show the paramedics/A&E staff, and also some hydrocortisone tablets that I use in the first instant. The case is too small to carry that much more (certainly you couldn't get an epipen in), but for me it is reassuring to know that all my supplies will be available and undamaged when I need them, however much they have been thrown around in my bag etc etc.
I have to confess that I don't carry my equipment around with me, unlike my inhalers and epipens. It is always readily available in the house, and I never go away overnight wihtout it, but I tend to assume that the paramedics will be on the scene quickly enough if necessary, and thus a confirmatory letter explaining the problem is the most important thing to have at all times.
For further information, it might be worth subscirbing to the Addison's Disease Self-help Group (addisons.org.uk/). Obviously most of teh people there have auto-immune adrenal insufficiency, rather than the secondary (drug-induced) form like Maddie and myself, but the site still has lots of useful information and advice. For example, they can tell you what wording to put on the medic-alert bracelet (if Maddie has one), and attach teh relevant instructions to her file, and so on.
Sorry this is rather an essay, but hopefully it's of some use. Keep up the good work!
xx
Have a look at yellowcross.co.uk. They have a range of products and might have the answer.
Thank you ao much for your replies.
Maddie has indeed been given a glass ampule. We were given a couple of syringes with it and that's it! I was not really given much info just told that long term pred will cause adrenal suppression.
Having 3 children I want the needles safe in my bag and also well protected from smashing!
I haven't got maddie a medical bracelet yet but am in the process of sorting it.
Carrie, can I ask how u have adrenal suppression? Is it through long term pred? Have you had a test to check adrenal function? Maddie hasn't but we were just told by having pred log term, it would happen.
Is there anything else I need to know or be aware of with log term pred? Or the adrenal suppression part? I'm still v v confused by it all! It's like a new can of worms just as I'd got my head around her having brittle asthma at such a v young age!!
Would be so grateful of any advice or information. Feeling v naive!!
Hi Emily,
Yes my adrenal suppression is secondary to long-term
Oral steroids. Everybody was a little suprised as despite being on high doses for many years, I
don't show any physical signs and rather smugly thought that I'd got away with it! I've had both short and long synacthen tests (the definitive tests for diagnosis), but it appears that my
adrenals don't respond at all anymore. This is unusual, and hopefully
maddie will be luckier, particularly given how young she is.
It sounds stupid, but try not to worry too much. In my case, my asthma is so dependent on the steroids that whether or not I can ever come off them from the adrenal point of view is slightly immaterial. The important thing is just to ensure that Maddie always gets her steroids, and on time. This is frequently a problem in hospital where they tend to assume the iv hydro is for chest alone. Of course it is, but getting frequent doses regularly and on time is critical to prevent additional adrenal problems when the body is under stress.
I meant to say, the Peli cases are extremely sturdy - abd would I imagine be quite difficult for other kids to get in to. They're also quite heavy too- but then you can be reassured that the vials won't smash if you drop it. I have a red one (red cross!), with a clear lid, so that everybody (including paramedics) can immediately see what is inside. I also have a print out of the Addison's guidelines enclosed, ao that people are quickly made aware of the problem and how to treat it.
Have you seen an endocrinologist? I'm sure a specialist would help explain a little more and put you at your ease. Good luck!
Pop over to facebook.com/medicationbags.... We do custom made products and we are making a case for diabetics which can easily be adapted for your needs. We are closed at present due to my eldest son being in hospital but I am still taking orders and discussing orders with people
In response to Carrie, I just wanted to say please please carry your hydrocortisone around with you. My consultant said that he has seen many situations where the ambulance crew won't / are not trained/allowed to administer hydrocortisone. In this situation you would need to inject yourself with your own supply of hydrocortisone to save your life. I'm not sure what level of ambulance crew can administer hydrocortisone but I certainly wouldn't take the risk. Least then I can do it myself if need be !!
Google diabetes case or diabetes kit case. Many of these are designed for syringes etc. and would be perfect. I'm thinking of getting one for myself. I found some specifically designed for children - very tempted by these as they're a bit more interesting. There's lots of variety so you should find one to suit your needs. Best site I found which I'm really tempted by is Diabete-Ezy - they're Australian based but do say they deliver worldwide, though don't know their delivery charges.
As Looby says, very important to carry around injections at all times. A)some ambulance crews can't administer and b) if you're using British Rail, who knows where you may end up and for how long (yes, I had a bad experience...!!!) so better to have your meds with you.
Emily - I am really surprised they've given you this without your daughter being tested - did she have a crisis? Otherwise, I'm not sure how they would know she has adrenal insufficiency as it's definately not a 'given', just more likley with long term high dose steroid use.
Nope no tests whatsoever on adrenal gland!!!! Just been on high steroids for ages I guess.
I have to say I've educated myself re brittle asthma but as far as adrenal suppression goes, I'm completely naive!! I feel so dim!! We were just given hydrocortisone vial and syringe, shown briefly how to use it and given a sheet of signs of suppression and told to come back at next app.
My husband and I are a bit daunted to be honest as it seems ao complicated! We've dealt with difficult asthma for years (husband has it) but this has floored us!!
Got fasting blood sugar tomorrow cos her blood sugar levels have gone haywire!!
What next?!
I can't imagine what it must be like as a parent trying to understand this when responsible for a child. It really isn't easy and there isn't much literature specifically aimed at us - it's all Addison's, although apparently lots of the general stuff under that is applicable.
Having to learn to do injections is pretty frightening - that's something people go to nurse school / doctor school for a long time to learn, not something for patients - and it's not even epipen style, but proper injections - it's frightening. Any maybe even though brittle asthma is really difficult and uncommon, it's still part of asthma so you still feel it's something you can grasp - this has lots of long words, treatments, scary things and isn't well know.
I've got a great endocrine nurse in my endocrine unit who will give me as much advice/support/deminstration as needed. I don't know how things work for children, but it might be worth asking if something similar is available for you?
Ratty - thank you so much for your reply. Sounds like you have a very good support network. You are right, its very hard to get your head round as a parent.
I will have a look on the Addisons webpage. thanks for the tip.
Maddie starts preschool in Sept so Im trying at present to sort out info and support for them.
Thanks once again. hope you are keeping well at present.
ps: have you ever needed to use your injection?
I am also very surprised they haven't tested as my son does suffer with his adrenal glands was showing signs of crisis so admitted to hospital but his gland is working but not at a high rate but they didn't medicate just kept in to monitor him and if he got worse then re-test cortisol level. His gland is producing cortisol but we have been warned yet again how important it is to get his levels checked when he is ill or showing signs of crisis. Hi normal healthy level is <30mpl which is right on the boarder line so they are just going to keep monitor him for the rest of his life and as soon as he goes into what they are referring to as the red zone then daily treatment will be needed.
I personally would demand they test your daughter as they last thing you would want is for your daughters body to become immune to the medication and when she does need it in the future it fails to work. Our body adjusts over time to medication so it is important that you know for your own personal piece of mind whither or not your daughter does really need this medication.
Hi Asthma family. Thanks so much for your post.
Maddie is not taking the hydrocortisone daily. We only have one vial to carry on us at all times if she should become ill or have an accident etc. If this were the case we would need to get her to hospital too.
I will definately mention it at her next review tho. Thanks for making me aware.
No problem at all. Hope they listen and do the tests for you.
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