Chronic eczema in 6 year old - any stories/advice of medications?

[missybct]

Hi all,

My stepson has just turned 6. He's had chronic eczema since 6 months old in varying degrees; at the moment (and since 4 yo) it's been generally manageable, but during the ages of 10-24 months his skin was so bad it blistered and was referred to an acute dermatology ward due to pervasive infections and all over eczema. He also has several other allergies - eggs, seafood, cats, pollen (and other airbornes) and was initially allergic to milk, but is now fine with it. He also has asthma; all the above are co-morbid with each other, which is common.

He was prescribed Alimemazine at 2 yo, alongside various ointments which are now Hydromol, Aveeno and a steroid cream that is applied as and when certain areas flare up.

Alimemazine was initially prescribed for both the pervasive itching, which caused DSS to wake at all hours during the night - it had a dual purpose in tackling the allergy and keeping him asleep. This worked for lots of reasons at this age - however, he would often overheat at night and this caused an instance of febrile seizure. He generally has a low immune system, and we encounter cold after cold after cold. So it's a fine balance between ensuring he is medicated, creamed but not overheating.

However, he is still bed wetting - we're not talking about once a fortnight - this is 3-5 nights a week bedwetting. Although I know boys generally still wet the bed at an older age than girls, at 6 years old both me and DP feel that there should be some progress; even if he's waking and then wetting as he can't get to the toilet in time. DSS Mum uses pull-ups every night with waterproof bedsheets. We had DSS most weekends, and try at least one night without pullups - usually on a night whereby him waking (if he does wet) won't cause too much disruption (eg: not Sunday night as we take him to school on Mondays/we have work). This works about 50% of the time - he often wakes at ours and takes himself downstairs. At his Mum's, he wets more often perhaps because of the constant use of pullups - which was why we tried to encourage one night on, one night off.

We know that the Alimemazine has affected his sleep routine - if he doesn't take it, he sleeps lighter and for less time, is more prone to nightmares BUT he wakes to use the loo, and is far less groggy. My DP and I spoke to the doctor back in April about this, and GP recommended that we switched to Cetirizine, which was a non-sedative antihistamine. We did this and DSS Mum did too - but she continued to use Alimemazine if he was a) under the weather generally and b) having a bad flare. We thought this wasn't good practice, and neither did the GP, but we've long since accepted that DSS Mum thinks she knows best.

During the summer, his skin flared badly - he had a nasty patch above his ankle that looked almost like a welt. He was constantly itchy - mainly because of sweat and pollen increase. At the same time, his behaviour has worsened; disobedient, rude, aggressive and cheeky beyond what we'd consider acceptable, whenever we disciplined or said no. We were having a hard time getting this across to DSS Mum who maintains that he is always perfect and rarely disobedient. This isn't really about his behaviour, but DSS Mum rarely feels the need to say "No" to him, and as a result, even by DP's (and his families) admission, he's spoilt rotten. There is also the relationship between DP and his ex - which is hostile at best; she doesn't respect him or his decisions, and he just gets fed up. She thinks she is the main parent, and thereby makes the rules and everyone else follows suit - if we disagree (which we do for a plethora of very valid reasons) then we are "shit" parents and we don't know or care what is best for DSS.

This is probably a post more to do with the lack of respect DSS Mum has for DSS Dad, but without the background story it's so hard to explain how difficult it is to get her to listen to our ideas - we're not trying to take over, we're trying to ensure DSS can have fun, whilst accepting discipline, and without having to constantly be aware and scared of his allergies and eczema. DSS Mum is adamant the medication the GP put him on (non-sedative) isn't strong enough, and this past week has switched him back on to Alimemazine and higher doses of cream. Unsurprisingly, his skin has cleared up massively - so we're again, the bad parents who should have listened to her in the first place etc etc. She rang the GP and told him that she wants him back on Alimemazine (we had no idea about this btw) because of the flare ups, which he agreed to, but she DIDN'T tell the GP about the bedwetting or behavioural issues - she admitted this, and said as far as she was concerned, the eczema was the highest priority and GP wouldn't re-prescribe alimemazine if she'd mentioned this (she's right, GP wouldn't).

So now, she's demanding we switch back to Alimemazine - we disagree with giving him this; it makes him very sedated - slow and sluggish. He has a speech impediment (stammering) which he's been really improving on lately, and since being back on alimemazine for 1 week, he's already stammering again. His brain is clearly working differently, and he's yawning throughout the day. The whole reason we wanted him to come off it was to treat the allergies at the same time as reducing bedwetting, getting his sleep pattern regular and less "forced" and to prevent him from being groggy and distracted - both at school and at home.

We're desperate to try and find some alternative to the alimemazine, which is clearly having adverse effects on both conscious and subconscious behaviour, and is perpetuating bedwetting and grogginess. This wasn't such an issue pre-school, but during his last school year, he was getting very frustrated with not being able to always keep up with class, mainly because the alimemazine was sedating him during school times too. This was why we suggested non-sedative antihistimines in the first place. DSS Mum is right - the other stuff obviously isn't keeping the allergies at bay, however,we've just come out of summer season and it's always worse in the summer because of pollen and sweat - so there are many variables at play.

It's so heartbreaking to see him stressed with bedwetting and avoidance towards sleepovers, anything do with with animals (which he loves) and playing outside. He keeps telling us "Mummy says not to..." and he's becoming a child who constantly wants to stay indoors at home. The GP has told her that exposure to the elements will help, but she's more concerned with treating the short term problem. We don't care that he wets the bed - we care that it bothers HIM.

I need advise, mainly - do any of you have stories, advice or recommendations for allergy treatments that you find allows a nice level of treating but not impacting adversely? We're willing to try combinations - even if this is just to suggest them to DSS Mum initially - he's getting to that very important developmental stage and he has enough adversity with having two homes and two differing parental styles - I want his life, and also the hostility between DP and ex to be as smooth as possible.

Thanks in advance, and sorry for the essay .

My friend has had amazing results with her DD. google Dr Aron.

Thanks TrixyMalixy - I actually follow the Dr Aron Facebook page, but unfortunately he isn't accepting new patients at the moment, and also he uses a topical antibiotic compound doesn't he? We want to avoid the reliance on antibiotics as much as possible for DSS, generally because he has such a low immune system.

Your DSS needs his mum and dad to be on the same page regarding his treatment and the bedwetting.
As a life long eczema sufferer I can see why his mum is prioritising treating his eczema. The mum and dad need to agree a plan of action with a GP or preferably a specialist. If he's allergic to animals he needs to stay away from them. If he's wetting at night he needs to wear a pull up to stop his skin getting wet and irritated (how many sleepovers is a 6yr old invited to?). If the Cetirizine isn't actually working then he needs something else.

Now assuming the mum and dad can act together on this, the best way to get proper treatment for eczema is to not accept it. Lots of chronic sufferers don't go to the GP enough - they just live with moderate eczema all the time. Everytime he flares up or even has patches he needs to go to the dr and get some steroid cream and antihistamine. If that doesn't completely clear it up he needs to go back for the next level up until they find a potency that does clear it up. If the strongest steroid doesn't work they will try protopic cream. He'll only get access to the stronger stuff if the GP can see that the other stuff is not working.

Thanks PosterEh. Some very valid points there.

We try to agree plans going forwards in terms of treatment and management, but we often aren't informed of goings on until after the fact (in this case, we had no idea - weren't told and a week has passed with new treatment without knowing). This makes it really hard to get on the same page. Furthermore, Mum doesn't accept anything Dad says because she thinks she knows best. Anything we do say is met with apathy and eye rolling because as weekend parents, we can't know much. Like I said, I believe it's more about the lack of respect from Mum > Dad than either of them being right or wrong in treating it. Believe me, this is probably the most serious issue of all, which we are trying to address, and my position is one of support for both of them. (I came on the scene long after the split)

The ezcema is manageable on a daily basis - it doesn't flare like it used to, but since April whenever DSS has had a flare, Mum has first of all a) blamed us and b) poo-pooed the prescribed medication without really trying it properly - which is why I mentioned the two medications often being used. This makes it hard to see whether it's effective or not. Also, if ceitirzine isn't working in treating the allergies, then we have suggested we return to the GP for either a check up or repeated allergy test - but Mum prefers to speak to the pharmacist rather than the GP, and if she does talk to GP, it's only over the phone (she doesn't like going into the surgery because she is afraid DSS will get sicker from visiting). If we were to ring off our own back, we'd be "undermining" her - we aren't, we're doing exactly what you said - not accepting it and exploring different ways of treating it.

She chooses to use the same medication he's been on for years because yes, it does work. But it is having an adverse effect on other physical and emotional aspects of his health - does that mean it's still working? What if there is a treatment that can deal with the ezcema and NOT cause the other potent effects?

What do you/she define as medication working/eczema manageable? Does it completely disappear between flare ups or is it just less angry?

I guess I'm wondering if the medication he's on is only treating his flare ups and not giving him completely clear skin in between. There is a good book for adult sufferers called "the Eczema Solution" a lot of it might not be helpful for a child (lots of psychology stuff on how to beat the itch/scratch cycle) but it does explain the correct way to use the medications etc. Its based on a programme developed at Chelsea andWestminster hospital so not woo.

It hasn't disappeared completely for over a year - but yes, it becomes a lot less angry. The issue we have often is that it will almost clear and he will get a cold/sickness bug that then perpetuates a flare up - common I suppose due to the immune system.

I'd be incline to say the medication he is on isn't curing the eczema (or treating it completely) but rather treating the very short term itching/scratching/reactive response. DSS Mum is very much the type that treats the immediate problem, even if the immediate problem is hiding something else. She's adamant that alimemazine is NOT a sedative and we've tried to explain it's not the alimemazine that treats the eczema but rather the depressant of the histimine reaction, meaning he isn't scratching or reacting so much which in turn prevents as much flare. For some reason, DSS Mum thinks alimemazine actually cures the eczema.

We've suggested using the alimemazine for serious flare up's in combination with the prescribed creams, but in the meantime through the advise of the doctor we can manage it without using sedative antihistimines - these exacerbate his stammering and bedwetting, which were making him hugely irritable and aggressive to both her and us. She is reluctant, saying that the Alimemazine works the best - except we've not really tried anything else or a combination of things.

The fear DP has is that DSS Mum used to use Alimemazine even when DSS didn't have a flare - because she was scared he'd GET a flare. This is one of the reasons we wanted to stray away from it - she was giving it to him EVERY night even when it wasn't required with no beneficial effect - DSS gets flares ups for a variety of reasons, and the use of alimemazine before the fact doesn't prevent it. This is her way of parenting, and I appreciate it differs to ours, but we really wanted to see if there was another method that we could show her or advise her may work, which would prevent this unnecessary over reliance on Alimemazine - which, in turn, would improve other areas of his behaviour and development, which would then result in the potential of less hostility and more union between Mum and Dad.

My ds has severe eczema, and his behaviour is atrocious when he's flared, he becomes violent, stroppy, has an attitude and a half, and he's just generally horrible to be with.
Does dss see a dermatologist? Gps can only prescribe some things, the derm can prescribe a lot more. What steroid is he using?
My ds has just seen a higher level dermatologist, and he's been taken off cetirizine and alimemazine, and put on loratadine and ucerax instead, with piriton for as and when he needs it. He was using the alimemazine every night, it affected him for a while, but not huge amounts.
I'll come back later when I can get on the pc.

Hi Nousernamesleft thanks for replying.

No, DSS doesn't see a dermatologist currently - he did when he was severe back when he was about 2 yo, but generally he's not what we'd consider severely affected anymore, fortunately. Sorry that your DS has it severely :o( How old is he?

We've suggested to DSS Mum that he is referred back to the dermatologist, as well as having a repeat allergy test. He had a very scary bout of viral myostitis about three months ago and was hospitalised for a night unable to walk, so we know his immune system is shot to pieces sometimes. That's why we really want to get this eczema controlled - especially whilst he's compliant enough to accept the treatment - he's starting to talk back when we are giving him medication and cream. But DSS Mum is insistent that alimemazine and cream treats the eczema and that taking him to the dermatologist causes unnecessary stress and exposure to germs - this is why she always chooses telephone consultations. Unfortunately it's harder for us to take him to his doctor as we work full time, although I have mentioned to DP that we should take a morning off and try to sort it out if she's so reluctant to take him. But the mere mention of doing it causes so much unnecessary friction that we end up rolling over and accepting it.

The steroid cream he is using is Eumovate (topical corticosteroid) which we don't use all the time as it was thinning his skin and causing hair to grow around the area that became trapped in the flare. DSS Mum for some reason, was so against cleaning the wound that during the summer holidays it became infected as she was repeatedly putting the cream on top of the dirt without cleaning it - DSS said it hurt so she stopped cleaning it - we took him away on holiday for a week and during that period I cleaned it carefully (which he hated) and applied cream - it's now looking so much better thank goodness.

DP has said it's like DSS Mum is treating the eczema like it was when he was 2 yo - when it was severe - except it isn't now, and it's being treated the same way. He's built up a resistance to the medication, so she's giving him more to make it effective.

Did the dr tell you to clean the wound? Only I'd think that would not be very helpful with eczema and it's not something a dr has ever advised me. If infection is a problem then it needs a steroid cream.
If he's having to use the Eumovate for so long that it is thinning the skin then he needs a stronger steroid. The current advice is to blast eczema with thronged stuff for shorter periods to prevent skin thinning.

It really sounds like you all (and by that I mean your dh and his ex and yourself if that is possible) need to see a dermatologist together and get a decent plan for dealing with his eczema. It sounds like that will be very difficult to arrange because of what sounds a bit like anxiety on his mother's part surrounding visiting the doctor. If she won't do it then I think maybe your dh has to on his own.

I've only skim read, I have little advice/experience of such severe medical issues.

The main thing is that the bed wetting is a complete red herring. It's linked to hormone production best way to help trigger that is getting him drink lots more fluids during the day. The medics won't consider it an issue until he's nearer 10 so just cross it off the list of concerns for now.

The behaviour and eczema could also be aggravated by food sensitivities but you'd need to very carefully food diary and try elimination for that which could be tricky.

Protopic is a good preventative cream without steroid in it.

Just hugs for you all tbh very horrible condition to live with.

PosterEh - when I say clean the wound - I didn't do it with anything other than soft application of steroid cream to the wound, with a small amount of massaging to dislodge the dirt and grime. Once it was done, within two days the entire area looked clearer. I can see how that could sound vague - was definitely not done with anything medicinal other than steroid cream! Thank you for all your advice btw - I too believe the steroid cream needs to be stronger as DSS Mum is having to apply it multiple times a day.

If DSS Mum wants me to attend, I will - but I know my place for the most part and tend to allow them to "ask" me rather than turn up - it would help though as it means I know better how to deal when he's with me and DP; generally I will wash and cream him anyway.

I think DSS Mum anxiety has worsened since DSS hospitalisation - she's very nervy and overbearing in general, but as I've said to DP, it is just her and DSS in the house. A lot of it is choice and stubbornness, but I always extend my help whenever she needs it. She doesn't have a problem with me, just DP.

RandomMess - I know the medics won't consider it an issue, which is why we've deliberately not investigated it medically. It's more to do with the effect it has on DSS psychologically. He's now exhibiting signs of being deliberately avoidant over certain activities due to allergies and bedwetting - some of which are perfectly normal (eg: not wanting to be around cats) and some of which has been misfed information that has led DSS to believe he is allergic to everything and anything. He also thinks that if he pees all the time, he won't wet the bed - even though we've been trying to encourage him to hold it for a bit longer. We've been getting him to drink plenty of water during the day - whilst he was mostly Cetizine there was minimal bedwetting at ours. He was waking at 5-6am to go for a wee, so the hormone that was waking him up was doing it's job. It's just since he's been back on the Alimemazine, he's wet every single night - it's actually making the dry patches around his stomach worse, because of the acidity of urine. Because of this it makes him both sad and avoidant and it's therefore impacting his general behaviour - he's been in reasonably good spirits today but we've just said it's bed time, so he's been furiously emptying his bladder and avoiding going to sleep. We'll end up having a half hour battle to get him to go to sleep because he associated sleeping with bedwetting and thus doesn't want to go - this was one of the reasons we thought switching to a non-sedative may improve the situation, which it did.

Thing is, we don't care about the bedwetting at all - we never make light of it, or really mention it at all - we know if he's wet because he's very withdrawn in the morning and/or goes straight downstairs, whereas if he's dry he'll come and tell us. It breaks my heart because he can't control it, and when he was on Cetrizine he was getting excited because he noticed he wasn't wetting all the time. DSS Mum gets up all hours of the night to change beds and to lift him to the toilet before she goes to sleep, but she doesn't work full time or live in a tiny cottage - he's a big 6 year old .

I think it's just the helplessness of our situation more than anything else. We want to help him mainly, but also by virtue DSS Mum too - but she sees it as us trying to be Billy Big Balls when it's quite genuinely just trying to make a chronic condition on top of early development on top of being a 6 year old easier for DSS.

I tried to get an appointment with Dr Aron any more but as he’s not accepting new patients I went on the hunt for another person. There's actually a great retired GP in Reading, UK called Dr James Pimm that uses the same method (blending low dose steroid, anti-bacterial and natural oils into a prescription cream) he's been a godsend and does free consultations over skype I think? Might be worth checking him out...