A blessing and a curse

We gave in.

J. has his hands constantly at his neck scratching and he scratches his hands and legs. At night he often asks to have his neck creamed. The skin on his neck has really become bad. The whole neck region in inflamed. It probably doesn’t help that he picks his nose in between scratching, nicely distributing the staph aureus bacteria which makes everything worse.

So, we gave in. We are treating his neck with a thin layer of 0.5% hydro-cortisone cream twice a day for the last few days. Within a day his skin became nice and smooth. He stopped scratching his neck. And if it would not be for the cortisone, I would dance with joy. I hope
that we can start reducing the use of the hydro-cortisone soon. I just don’t feel comfortable using it.

We will also have to treat his arm with hydro-cortisone cream if we want him to have a break from the itch. I wished we would have a better solution, but at this point I start to believe that the risks associated with the use of  cortisone out-wights the benefit of having a child that does not try to tear off his skin several times a day and does not constantly pick and rub and  scratch his skin…… But still, we want to keep the use of cortisone as short and minimal as possible.

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Another visit to the skin clinik

We had another visit at the skin clinic. This time we finally had an appointment with a doctor who was seeing specifically patients with eczema. The doctor was very friendly, and he did not push us to use steroids or immune suppressant but respected our skepticism  towards this drugs. He took some time to make notes about all the creams etc. we are using and also approved our homemade cream.

He recommended a treatment plan focusing on two things: moisturizer and scratch prevention:

  1. Because the skin barrier of eczema skin is broken, it is very important to provide and maintain moister in the skin. He recommended to use Dermifant Kinderlotion. Because of our problems with skin infections he recommended to mix the lotion with 1% Triclosan, which is an antibacterial and antifungal agent.
  2. Scratching damages the skin barrier further, which leads to more itching etc. Therefore it is important to prevent scratching as much as possible. The doctor recommended to relieve the itch by giving antihistamine as much as needed. He suggested to give antihistamine whenever J. scratches, or when we anticipate strong itching.

The lotion seems to be ok, but it leaves a weird feel on the skin. We use it but it is not ideal. After using it for a week or so we might be able to tell if it is really good for J.’s skin.

The recommendation to administer antihistamine ad libitum leaves us weary. I simply cannot believe that giving antihistamine to a three year old twice a day is ok. Our pediatrician once told us that antihistamine just makes tired and therefore also suppresses the itch, but it does not affect the itch per se. This makes sense, because the antihistamine and the itch pathway are not the same, as I understand. It would be more useful, in my opinion, to use a topical analgesic, since itch and pain use the same pathways. But according to the doctor, there is not therapeutic solution available. I wonder why not?

The doctor agreed that we use antibiotic cream very sparsely and locally when we have an acute bacterial infection. Although there is the risk of resistance and allergy, the benefit of preventing wide-spread infection out-wights the risks. So, whenever we see a pustule somewhere we attack it immediately with the antibiotic cream before it can spread.

Over all, the visit was petter than previous visits, mainly because the doctor was quite relaxed and not imposing too much one treatment over an other. But it also reminded us again how frustrating the treatment of eczema is. It seems, the main strategy is to just wait until “they outgrow it”. It reminds me of the ostrich who sticks his head into the sand…..

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Sleep. Sleep?

Sleep is not easy for us. J. wakes up several times a night and asks to be creamed. Because this is so much easier when he lays next to us, he is used to sleep with us. He loves to cuddle at night and of course his favorite place is between me and my husband. The problem only is, that (a) he is getting to warm under the blanket (he is wearing his relatively thick anti-scratching overall at night and eczema children are heat sensitive anyway) and tries to kick it off, resulting in me and my husband getting cold; (b) I am a bad sleeper and J. and I keep waking each other up. So, all sleeping in one bed is just not working for us.

We could finally convince J. to sleep in his own bed, and my husband (and sometimes me) sleeps on a folding bed next to him. This works at least for some part of the night – until J. wakes up and crawls under Papa’s blanket. And it is not that he is just awake for a minute or two and then goes back to sleep quickly after crawling under the blanket. J. has usually a period of light sleep that lasts for 2-3 hours during which he frequently scratches and needs to be creamed around his neck and sometimes also his hands and knees. My husband manages him during this time and is only too grateful when J. finally falls back into deeps sleep next to him. The interrupted sleep is hard on both of them.

Then I had to glorious idea to promised extra reward points to J. when he would stay in his bed all night long. That worked for one night. After the next night I found him again under Papa’s blanket and before he was fully awake he told me that he didn’t want any extra point. Well, he made the conscious decision FOR sleeping under Papa’s blanket and AGAINST the extra points. I guess that’s a 1:0 for J. So, this attempt to do it with positive reinforcement failed, and I didn’t come up with something that would be more tempting than the immediate reward of sleeping under Papa’s blanket.

Now, my big question is: How to sleep train a child with eczema. If he fully wakes up at night and is getting upset because we don’t allow him to sleep with us, he will start scratching heavily, and scratching attacks at night are harder to calm down than during the day. And if he does have a scratching attack, than we surely will hold him until he is back asleep, which is entirely counterproductive and feels like a catch 22.

So, what shall we do? The let-him-cry-and-scratch method is unacceptable. A search on the internet didn’t bring up anything useful how to deal with the scratching at night while sleep training. How do you manage the nights of your child with eczema? How did you manage to sleep train them? Maybe someone has a tip for us?

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Cream 1.0

This was a lot of fun and really easy! I made our first cream. It is a bit oily but feels good on the skin. We used it now for three days and we like it. It has glycerin for moisturizing, wax for protection, good oils and lanolin, which has many good properties. Lanolin is also great in the cream, because it serves as an emulsifier. The constancy of the cream is really nice and smooth. Because the cream is a mixture of water and oil, the water does drain out a bit. Maybe I didn’t mix the cream enough. But it is not so bad and the watery drops mix back in when the cream is rubbed onto the skin. In case you would like to try it, too, here is the recipe:

5 g    bee wax
15 g    lanolin
40 g    evening primrose and almond oil
5 g    glycerin (85%)
35 g    warm water
tea tree oil

Melt bee wax and lanolin in a water bath, let cool down a bit and add the oils.
Mix glycerin and water. Stir the water mix into the oil mix. Stir well. Add a few
drops of tea tree oil. Mix well. Makes 100g of creme.

A few comments on some of the ingredients:

Lanolin: it is also called wool wax and is secreted from the sheep’s skin.  This substance has many good properties – many nursing woman know its soothing and healing properties.

Evening primrose and almond oil: I used 20g of each. I realized too late that the evening primrose oil I bought is refined and stabilized. I would have preferred native oil, but native oil oxidants quickly and I don’t know how long it will stay fresh in the cream. When I have used up the oil I bought I will try to use native oil.

Glycerin: The glycerin I could buy is a 85% concentration in water. A moisturizing skin product should not have a glycerin concentration exceeding 2-5% (otherwise it will dry out the skin). This cream has a glycerin concentration of about 4%.

Water: I used distilled water. But I would guess that any good clean water would do.

Tea tree oil: This oil is really intense. I put only two drops and my husband finds it already too strong. I think next time I will mix the tea tree oil only into half of the cream so that I have a mild version for e.g. the face and a bit stronger version for infected areas.

The recipe still needs a bit of practice and it needs to prove itself worthy, but so far we are really happy. We know exactly what is in there and we can modify the ingredients if necessary. It creams nicely and J. likes it.

J.’s skin has much improved over the last couple of weeks. His face is almost completely cleared up. And his scratching improved enough so that my husband and I were confident enough to leave J. for one night with my mother, so that we could enjoyed a short trip to Strasbourg together. Even such a short getaway has not been possible for a very long time.

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Check-up

Two months ago I described the current condition of J.’s skin and how we treat it. Since then we learned a lot, had a few doctor’s visits and did some alterations in our treatment plan. So I thought it is time for a check-up:

Skin condition: J.’s skin is overall very dry. The areas that bother him most are red and have this typical eczema-roughness. Especially affected are upper legs, backside of knees, lower arms including hands, neck, a few spots on the face and a bad spot on top of his head. Compared to two months ago, his neck and face are better. He still scratches heavily whenever we undress him in the morning and evening and sometimes during the day, but right now the severity of this scratching attacks is less. He can be easier distracted and does not have this very intense I-need-to-rip-off-my-skin-and-don’t-come-close-or-I-scream attitude (“knock on wood” – this is a very big relieve for me because I have a very hard time dealing with these intense scratching attacks….). During the night we usually have to cream his neck and occasionally his wrists or knees.

Creams:

  • we cream J. with Dexeryl in the morning and evening from head to toe.
  • we use Lavera’s Baby Neutral Face Cream when and where it is needed throughout the day. One tube is always kept at the daycare in case he needs some itch-relieve there.
  • we also use the creams Halicar Salbe N and Madaus Echinacin Salbe in between. They don’t do anything special, but are a bit more fat that Lavera’s cream.
  • when the skin is very dry we use additionally evening primrose oil.
  • we are trying out the vitamin B12 containing cream Mavena B12. I cream twice a day J.s  hands/arms and the spot on top of his head with it.

Food/supplements:

  • we give him lactic acid bacteria once a day. We are using SymbioLact pure, which contains bacteria lactobacillus acidophilus and bifidobacterium lactis.
  • evening primrose oil or safflower oil 1-2 spoons daily
  • vitamin D 500 IUs daily
  • all healthy foods are allowed. We buy almost exclusively organic and as local as possible. We try to avoid all processed foods (but we do buy bread, pasta, cheese, etc.), all whites (white flower, white rice, white sugar) and sweets.

Bath: right now J. takes a quick showers almost daily in the evening. J. is not a big fan of shower or bath,  and it takes some effort to convince him. We use soap very sparsely and only where needed. We wash his hair no more than once a week. We use Lavera’s Baby Neutral Shower Gel.

Other:

  • inflammations with puss filled pustules we wash thoroughly with water and/or soap and treat with povidone-iodine solution.
  • we are changing all cloths and pajama almost daily. J. is wearing an anti-scratch overall at night, which improved our nights tremendously.
  • we file his nails daily to make sure that there are no sharp edges and corners.

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Disclaimer: This ain’t no payed advertisement. None of the companies producing any of the products mentioned above have any idea who I am and I receive no compensation for mentioning or linking to any of the products. I am simply sharing my experience.

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The perfect cream?

Why is it so hard to find a good cream? I have a small basket filled with an assortment of creams that I carry around the house in the hope that one of them will relieve an acute itch. But none of those creams are really good. The creams don’t moisturize enough or they are irritating or they contain things I rather don’t want to have in there or they don’t do anything at all.

A few weeks ago we stared to use a mixture of eucerin and evening primrose oil. It initially felt good and the skin was less dry, but after going through the second pot of cream I had the impression that J.’s skin became more red, swollen and itchy, and we decided to stop using this cream. Instead, we came crawling back to Lavera’s Baby Neutral Face Cream, which relieves the acute itch very nicely, is not irritating at all, is completely absorbed into the skin, but it doesn’t provide sustained moister. Two nights ago I creamed J. with it and some evening primrose oil, but the next morning J.’s skin was very dry and flaky.  We basically cream and cream and cream, which is frustrating and expensive. This cream is good as a quick-itch-relieve, but no solution as a main moisturizer.

Last night I creamed J. from head to toe with Dexeryl, a glycerin containing cream which was recommended to us by the doctor in the hospital. This morning J.’s skin was relatively smooth and not very dry and it looked very promising. But Dexeryl contains, among others things I can’t even pronounce properly, vaseline and paraffin, both are hydrocarbons (like mineral oil), vaseline is also called petroleum jelly, and I am not so comfortable covering J.’s body routinely with it. And we still don’t know how Dexeryl will feel after a couple of weeks.

So, we don’t have a good solution for what to use as a good basic cream,  a good moisturizer which we can use without worries twice a day. Could there be a good cream – without any buts? I would like to have a cream that does not contain anything I can’t pronounce. Instead, I would like that the cream contains glycerin and water as moisturizer, bee-wax to make a nice protective layer, some good oil (evening primrose oil, coconut oil, almond oil, etc.), maybe some emulsifier if needed, and eventually a few drops of tea tree oil as preservative and to fight infections. Shouldn’t it be possible to mix something like this? I decided to do some experiments and I just bought some glycerin…….

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Disclaimer: This ain’t no payed advertisement. None of the companies producing any of the products mentioned above have any idea who I am and I receive no compensation for mentioning or linking to any of the products. I am simply sharing my experience.

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Vitamin B12 cream

I came across a very interesting story: Twenty years ago Karsten Klingelhöller, then a medical student in Germany, developed a cream containing mainly vitamin B12 and avocado oil to help his girlfriend with psoriasis. This cream turned out to be very effective not only in the treatment of psoriasis but also for eczema. Since then Mr.  Klingelhöller tried unsuccessfully to bring this cream onto the market, even though there has been a small clinical study demonstrating its effectiveness [1,2].  In 2009 the German television station WDR produced a documentary about the story of this cream with the title “Heilung unerwünscht” (“Healing not wanted”). This documentary claims that the reason, why this cream is not available to buy, is that many of the large pharmaceutical companies produce much more expensive products (e.g. cortisone containing creams, elidel, etc) which give them bigger bucks than a cheap cream of similar effectiveness but without the side effects.

The cream did come onto the marked shortly after this documentary aired and can now be bought under the name Mavena B12 (its first name was Regividerm) (It is not clear if the documentary was a smart PR move, or if the production finally started because of the documentary. Klaus Martens, the journalist who made this documentary and wrote a book about this case, lost his job at the television station shortly after. update: I just found out that Klaus Martens did no loose his job. He was only temporarily suspended). However, the cream is not approved as a medicine, but instead is sold as a medical product (this means there have not been done all clinical trails necessary to prove its safety and effectiveness, but more has been done than for cosmetic products).

The recipe of the cream is widely published online, e.g. on Esowatch, reflecting the original idea of mixing vitamin B12 with avocado oil, water and an emulsifier. The reasons why this cream might indeed be effective is that vitamin B12 binds and neutralizes nitrogen monoxide, which plays a role in acute inflammations.  However, this also means that vitamin B12 does not treat the cause of the inflammation but rather might prevent whatever aggravates the inflammation and itchiness. So this cream is certainly not a cure but might help with the itchiness.

There are two main criticisms about this cream: First, the documentary seems very much like a smart PR move to market the cream. The film presents the story in the light of David against Goliath without critically questioning the cream itself. Some of the doctors and scientists interviewed for this film retracted some of the things they said after the film aired. The second critique, which I think is the more serious one, addresses the clinical studies [1,2]. Not only is the number of subjects very small, but both studies mention the support of Regeneratio Pharma AG, Wuppertal, Germany in the acknowledgements. Regeneratio Pharma AG is the company that owns the patent to the cream, and one might wonder how truly independent this studies are.

So, is this again an empty promises? Do we again stand before a product that is supposed to miraculously help against eczema? Is there again someone just making money, or not so much money, on the expense of the very large number of desperate eczema sufferers? I am desperate. I just called my pharmacy and ordered the cream. 100g of hope for 28.95 Euros.

References:

[1] Stücker M, Memmel U, Hoffmann M, Hartung J, Altmeyer P: Vitamin B12 Cream Containing Avocado Oil in the Therapy of Plaque Psoriasis. Dermatology 2001;203:141-147

[2] M. Stücker et al.: Topical vitamin B-a new therapeutic approach in atopic dermatitis-evaluation of efficacy and tolerability in a randomized placebo-controlled multicentre clinical trial, The British journal of dermatology, 2004 May; Volume 150, Issue 5, S.977-983.

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