DD 4 on long term prednisolone for eczema - horrible side effects - help!

[luzluz]

Anyone else had a child on prednisolone steroid tablets for long term treatment?

DD, who is 4.5, meant to be on it for a few months before switching to azathioprine for two years to deal with very chronic eczema.

The eczema has pretty much gone but she has swollen up unrecognisably, her face looks like a balloon, she has excess hair growth on face and back and is now complaining of joint pain. We've just heard that her blood tests suggest she is not suitable for a high dose of azathioprine so going to be on steroids for the foreseeable future (up to a year).

She is already getting comments from other children at pre-school which she is handling quite well but I am terrified that she will be bullied by older kids at primary school when she starts in Sept and that it will put her off school.

Does anyone else have experience of this and how you coped? Would love to hear some positive stories.

Also are there any other treatments that people have been prescribed e.g. UV therapy that might offer a good alternative?

Before this she was covered in awful eczema which didn't respond to topical treatments (tried them all) and even had eczema in her urinary tract so was unable to urinate without screaming in pain.

Just feel so bloody helpless...

Oh your poor DD that sounds terrible!

Have you made contact with the National Eczema Society? They have a website and I'm sure someone there will have had experience with severe eczema like this.

It sounds like shes improving which is great but I hope you can get more advice soon.

Hiya, my son was steroid dependent for a long time and also went cushingoid. Have the clinic assessed her recently to make sure this is not cushings? What dose is she on and is it every day? An every other day dose can limit the symptoms - again worth asking about. Do they weigh/measure her regularly?
For joint pain it is worth looking into vit/mineral deficiencies in paeticular maagnesium, calcium and vit d. These can also cause severe joint pain and are linked to steroid treatment (well vit d might not be but ds was severely vit d deficient). You can buy a magnesium oil spray that might help. Ask about calcium
/mag supplements from specialist - in some countries they routinely supplement when on high dose steroids don't give at the same time as pred though!

Hiya, my son was steroid dependent for a long time and also went cushingoid. Have the clinic assessed her recently to make sure this is not cushings? What dose is she on and is it every day? An every other day dose can limit the symptoms - again worth asking about. Do they weigh/measure her regularly?
For joint pain it is worth looking into vit/mineral deficiencies in paeticular maagnesium, calcium and vit d. These can also cause severe joint pain and are linked to steroid treatment (well vit d might not be but ds was severely vit d deficient). You can buy a magnesium oil spray that might help. Ask about calcium
/mag supplements from specialist - in some countries they routinely supplement when on high dose steroids don't give at the same time as pred though!

Thanks both, think it sounds like a good idea to go to GP and have her checked over again as we're 10 weeks in now. Hopefully we can bring the dose down a bit as she is currently on 20mg down from 25mg.

Feels a bit like dammed if you do and dammed if you don't at the moment.

That's a fairly high dose. Will they do it as an every other day dose if she is on it longer? This is supposed to be better for limiting side effects. I have no idea how it affects excema though.
If she's on it long term then definitely look into supplements. They help a lot with the joint pain
You can also put in a dla claim if side effects of the meds affect her day to day life. Ds1 had a lot of problems. He was on various doses from 60 to 25 daily or eod
Tapers can also trigger pain and behaviour problems as the body adjusts - just so you are aware. If you've just started tapering and the problems started then, maybe there is a connection

That's a fairly high dose. Will they do it as an every other day dose if she is on it longer? This is supposed to be better for limiting side effects. I have no idea how it affects excema though.
If she's on it long term then definitely look into supplements. They help a lot with the joint pain
You can also put in a dla claim if side effects of the meds affect her day to day life. Ds1 had a lot of problems. He was on various doses from 60 to 25 daily or eod
Tapers can also trigger pain and behaviour problems as the body adjusts - just so you are aware. If you've just started tapering and the problems started then, maybe there is a connection

If her skin stays clear on 20 they will probably gradually reduce the dose to a lower maintenance dose and the side effects will decrease with lower doses. Steroids do have lots of side effects so doctors like keeping people on the lowest dose possible to treat whatever they are treating. I'm sure you have already been told but when on long term steroids they shouldn't be stopped suddenly and may need increasing if she gets a significant illness - should she be admitted to hospital for anything remember to let the doctors know she is on regular steroids

I hope that they will take it down but we haven't got another appointment now for 6 weeks so it's not likely to come down soon. The GP is pretty useless but I may ring the consultant and ask if we can reduce given her skin seems good at the moment and the side effects are getting worse.

Forgot to add that we are giving her a general kids multi-vitamin but will look into other supplements.

Hope you can get her on a lower dose. It is a bit early now, but once she starts primary school do let the school know and also that they have to notify you immediately if there are children with chickenpox (eg if your dd has been exposed to chickenpox) and other children's illnesses as the steroids are suppressing her immune system. Chickenpox can become life threatening (even when vaccinated, although that does help of course) and she may be given anti-virals and be admitted to hospital for very close monitoring. Steroids are one the one hand brilliant but also horrible. Really hard.

Hi there luzluz,

I'm sure you have probably had loads and loads of 'my dc had eczema and I used x cream and gave them x supplement' but I thought I would briefly share my recommendation... My ds was born with a small patch of eczema and by the time he was 8 months you couldn't find a patch on his body that wasn't horribly inflamed... He was given a low dose prednisilone which fixed him up within days but I knew I didn't want to stay on a road of steroids all of his life... My research into natural healing informed me that eczema is a manifestation of poor gut health... so to cut a long story short I started him on the following supplements and his eczema is cured and hasn't been near a steroid in years (he's just turned 4).

Higher nature smart start omega liquid
A good quality probiotic (udos choice v good, can mix it into yogurt etc)
Natures plus kidzgreenz (contains chlorella & spirulina)
Natures plus kidz zinc

Taken daily the gut heals within and the external symptoms ease, if not disappear. I use a website called 100percentnature which is excellent (I don't work for them btw!). He has a number of severe associated allergies too (peanut, sesame, tree nut etc) and has already started to grow out of some of them too which I'm sure is all related.

Good luck x

Meant to add D3 to the daily supplement list, again the natures plus brand... All easily taken chewables...

I wouldn't wait 6 weeks for a dose review, she is showing all the symptoms of a steroid overdose. I wouldl take her back to the GP tomorrow rather than waiting for the hospital appointment.

I think Pedigree is right, you need to get her seen earlier. You may need to really push for a quick referral or maybe go private if you can afford?

Thanks all. She doesn't seem to have any allergies so this is purely a genetic fault with the top layer of her skin which is very dry and so the immune system thinks it is under attack/needs to repair it but goes overboard.

I just want her off them but consultant (at GOSH so hoping he's very best) recommends keeping them on this treatment for 2 years with a slow tapering of medication and then you get the eczema back 'under control'.

Neither my husband or I have had eczema - I have allergies but I just had no idea that eczema could get this serious.

I just wanted to know if there were any parents out there that had supported their kids through this - the consultant seems very comfortable with the side effects but we're not.

Hmmm I'm not sure he should be so comfortable with the effects! Our consultants have never ever been blase about it. Ds is regularly weighed, measured and bp checked as it can affect growth and development. Many parents claim dla due to the severe emotional and physical side effects of high dose steroids, including steroid rage and worse. It is not a good drug at high doses.
Perhaps he will have her on lower doses once it is settled? I would ask a lot of questions about 25mg daily for two years, frankly for a 4 year old that's a high dose
Phone up and ask consultants secretary to ask consultant to phone you if you are worried
If she's only been on it for 2 months so far, that's not too bad at that dose but if you're looking longer term, look into it more

That is a high dose for a child so that explains the effects. I have been on both for 30 years almost for a transplant. I have had vit d supplements and am active and have been very lucky with side effects. I am now down to 5mg a day which my consultant says is virtually homeopathy . Are they planning to reduce them gradually? Is she very hungry?

Thanks for your thoughts.

She has been very hungry but that comes and goes now. i took her to the GP today and they didn't seem too fussed either. Am waiting on some reassurance from the consultant.

Very hard seeing my 4 year old swollen up like this - think we will just have to take each day at a time.

Gosh poor you and your dd, it's very difficult. My ds 2.11 has severe eczema but is currently almost controlled through emollients and potent steroid cream 2x a week, although it's starting to flare more often again so not sure of next steps.

But I have been recommended to try the GAPS diet by ds's homeopath/herbalist. I'm seriously considering it now as I just don't want to be using steroids on him forever! Maybe worth researching, it does seem quite hard core. It's basically removing all grains/sugars and adding high fat - met broth etc. It works on helping the gut alongside using high dose probiotics.

God luck with it all

Not the same but a family member is on a high dose of steroids of 40mg a day. His gp says it can be dangerous to be on steroids for a long time. His appetite went haywire which is a side effect and his face and neck was like a balloon. Also his legs and ankles and couldn't get shoes on. Is there anything else apart from steroids that your dc can have? I know people who have had to change their childs diet and it helped a lot and also some cream stuff but i can't remember what it is. Best wishes.

Makingmama Have a look on the Special Needs:Children board where there are people doing GAPS.

Thanks, we've fiddled around with diet over a number of years with little effect. I think we are just very unlucky and this eczema is not caused by any discernable allergy.

She has come down 5mg in last week and the eczema has returned with a vengeance. We are also now on azathioprine but it takes a couple of months to kick in. We are pulling our hair out as she looks so bloated and we're worried about bullying at school come reception class in september.

Did you ask about an every other day dose? If steroids work I would assume other immuno-suppressants/modulators would work too. Is there a more 'specialist' specialist you could go and see?

Did you ask about an every other day dose? If steroids work I would assume other immuno-suppressants/modulators would work too. Is there a more 'specialist' specialist you could go and see?