Hi,
Maddie is on pred and hydro maintenance. (For brittle asthma and adrenal insufficiency) She is having hideous side effects from it all now as she's been on pred solidly for 3 yrs now. (She's 6 yrs old!!)
Soooo one consultant mentioned getting her onto a non steroidal alternative soon. What alternatives at this treatment level are there??
WHat else is maddie on?? It's a bit tricky as some things just aren't liscenced for littluns to use!
Her meds are often tweaked at each app but this is what it is at present:
Pred maintenance
Hydrocortisone tablets for maintenance back up
Seretide 250
Atrovent
montelukast
Salbutamol
Saline nebs
Azithromycin
Calcichew for Vit d deficiency
Iron for anaemia
And then we have salbutamol nebs on standby and hydrocortisone emergency injection too!!
Hmmmm......she does seem to be on a fairly efficient cocktail. I would really discuss with her endo and reso cons about an alternative preventor. I was told by by endo cons that seretide was one of the worst inhaled ones for adrenal surpression (in fact she went so far as to say she feels it should be banned) and so i'm no longer on that. In fact, despite little evidence showing a difference (although the same can be said with salbutamol) I have found significant improvement on budesonide nebs compared to inhaled steroids (like inhaler not neb lol!).my consultant felt that he'd rather me nebulise silly quantities of steroid rather than ending up on oral ones all the time, but then on the other hand, i spoke to a consultant who feels with me nebulising so much it cant be good for me (although frankly i'm not 100% sure I believe what he was saying, he said he reckons that by nebulising 4mg budesonide a day I am basically getting another 5mg pred systemically - i'm going to discuss with my GP re// potency of different steroids, but to me that just doesnt add up!) so it is up for debate as to whether that is better.
The main 'general' drug I would say isn't on her list is something theophylinne based - although whilst i'm not sure, it's a prettty nasty drug in terms of potenital side effects so could well believe it not being liscened in kids, and the same goes for steroid sparing agents and sub-cut terbutaline. I know Maddie has very severe asthma and so there may be some discussion of going 'off liscence' for drug doses etc but i'm pretty sure you'd want to use those drugs as a proper last resort!
So assuming we dont want to do general meds its got to be about 'trigger specific treatments' so my questions would be about whether she is a perticularily allergic kiddie - i know Philomela from here has doubled up on her montelukast dose and benefitted, and then there is the potential to add in a regular antihistamine. Again, not sure of her age, but I think I have heard of Kids on Xolair, but that might be in the USA and so possibly isnt the case here, and obviously there is quite specific inclusion criteria for Xolair anyway. The second 'common' one is reflux (and so could be worth getting her a ph study to confirm this or not) which would mean adding in a PPI like ompeprazole. She is already on Azithro which is pretty good at increasing gastric motility and frankly with the new research coming out she'd never going to be started on long term domperidone unless she has very significant issues with reflux even once you've explored other options, and whilst on Azithro you'd hope she wouldn't need it anyways!
Whether or not you change the inhaler(s) for adrenal reasons there is always something to be said for a bi of experimentation with different inhalers. If she's able to use turbohalers then symbicort is meant to be really good, and I know Fostair is good for little airways and as an asthmatic child you'd expect hers to be fairly petite - and both of those have the potential to be used as reliver and preventor and that is meant to be good in terms of the way the steroid dosing in the lungs works out. And there is the potenital to try spiriva instead of atrovent (i believe its like comparing a LABA to salbutamol)
Is she under a resp physio? Saline nebs implies lots of gunk in there, and so a physio might help with that - although I have a vague recolection ofyou guys doing percussions on her in which case i'd assume she had been seen by a physio. Has she ever seen someone from CAMHS or some kind of councelling type person (art therapy, play therapy etc)? Stress is a trigger in asthma, and i'm sure it can be in kids, and being a poorly bunny rabbit (technical medical term there) she will occasionally be havig a bit of a hard time of it, and even if it didnt improve her asthma it might well be good for her to have a space to explore her emotions about the issues shes up against. Just worth putting a thought in (and going down the 'prevention is better than cure' route and given the fact that the vast majority of severe asthmatics I know are on an anti-depressant)
It's so tricky, but i hope that there is something in that list worth persuing for the both of you! All the best hun!
Wow thanks sooo much soph, what an amazing reply!! So helpful.
I'll kinda answer in order....
So, budesonide v seretide....she used to be on budesonide nebs too. I think they were good. Then we had a random doctor tell us to stop. So we went to fluticasone and now seretide 250.
She's had a ph test which was clear. She also has no allergies despite taking montellukast, and I think that's just as a 'take everything approach'. So therefore I believe xolair is of no benefit. They do prescribe for children aged 6 and above if their IgE levels are high. No good for Maddie cos zilch!! However her consultant has said that if only we could find something Maddie was allergic too then Maddie would be perfect to trial it.
What are steroid sparing agents?? The name sounds perfect lol!! And are theophylline and sub cut turbutaline steroid free alternatives?? I don't know anything about these drugs..can you help?!
She's under a resp physio who has taught us techniques so I do this along with saline nebs when she's mucusy.
As for cahms, I hadn't thought of this one. We have a monthly multi agency meeting for her and she has an advocate. So this is someone who talks in the meeting on her behalf. Maddie chats to her about her feelings surrounding asthma. She hates it!!
Thanks soooo much once again. Will look into terbutaline and theophylline. Many thanks indeed.
Steroid Munchies
