It has been a long time….

… since I last posted. Almost two years. Why did I stop writing? I was so deeply frustrated after we had spend time and money to travel to this Island, where everyone told us that the sun and water and clean air will do wonders. I had gone there with so much hope, almost expecting some miracle to happen, which, of course didn’t. Although we did have a nice time, it was  too cold and too windy to spend much time at the beach with our boy. During our stay we did not see any improvements. Then people told us, it usually takes a few weeks for the effect to show. Well, nothing changed, and I was left disappointed and frustrated.

Now, almost two years later, J.’s skin is quite ok. With a lot of moisturizing and every second or third day small touch-ups with cortisone at knees, arms and neck. Only his right index finger is in very bad shape and we don’t seem to be able to control the eczema there. I have almost the suspicion that there could be some kind of a combination of eczema and adverse reaction to cortisone, since the use of cortisone does not help much. I am still at loss what to do about it. So, we keep fighting against eczema.  Also, I am happy to report that during tha last two years we welcomed a second little boy into our family who, Thank God, so far does not show any signs of allergy or atopy.

I do want to continue writing here and share things I read about and learn.

Posted in cortisone, therapy | 1 Comment

Sun, salt and the immune system

We are about to leave for vacation to the small island Amrum which is in the North See just off the coast of Germany’s most northern tip. This island is known for its clean and immune-stimulating air and for its very large sandy beach. I will spend with J. four weeks on the island and even if it might still be too cold for J. (not for me! :)) to swim we will surely enjoy playing on the beach in the sun and salty air. This will hopefully give his skin a big break and a good push into the right direction.

My husband and I have been away for a conference last week for several days and, of course, as soon as we had turned our back to J. he got sick. Although he was very well taken care of by my mom, it was hard not to be at his side. He had fever for a couple of days. Interestingly, we could again observe the effect fever has on his skin! When we came back home J.’s skin was all smooth and soft although my mom had not used any cortisone in our absence! She reported that during and after the fever his skin peeled off in large amounts, exposing new soft skin.

When J. is getting sick, does there happen a shift in his immune system, from the pathologic auto-immune fight to the more healthy fight against invaders?  I wished I would understand the different pathways of the immune system better! Maybe there are other ways than fever to push the immune system into the right direction? Maybe our vacation on the island could give J.’s immune system a small kick into the right direction as well? At least such that the next winter will be more easy?

I hope I will have reasonably good internet on the island so that I can report from there. If not, I will be back in a month.

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Visit at the children’s hospital

We had our check-up appointment last week with the allergologist at the children’s hospital.  This was good timing because we just had started to reduce the use of the cortisone cream on J.’s eczema to every other day. Unfortunately the eczema came back right away at several spots. So, the doctor recommended to go back to using the cortisone every day, let the skin heal and try to reduce then again. Instead of a rigid schedule we are now doing it “by sight”: On spots which are good we reduce the use of cortisone, on spots that are bad we keep using it.

At this visit I voiced my frustration about the single track approach to use cortisone and explicitly asked him about supplementation, special gymnastics, allergy evaluations, etc. The doctor explained that we will now try to control the eczema with cortisone and if it turns out that this is not enough and we need “too much” cortisone on a regular basis, then we will think about searching for a cause and additional treatment. In other words, I had the impression he was just saying that why should we bother now with many tests and treatments if we can “fix” the problem now quickly and easily with cortisone, and if we can keep the eczema at bay that way until he “grows out of it”. So, we went home with a new prescription for cortisone.

Yes, J. is better. Yes, it is wonderful to see him happily play by himself without channeling all his energy into his scratching attacks  and I am tremendously grateful for this. However, in terms of treating the cause of his eczema we are back to square one. And it is up to us to figure things out. It is up to us to pick the supplements, initiate tests and design a treatment plan for J. No doctor seems to be willing or capable to help us with this.

Posted in cortisone, supplements, therapy | 5 Comments

Alternative (or) medicine?

I am in a bit of a crisis right now concerning alternative medicine. Until recently we were deeply convinced that we do not want to treat J.’s eczema with cortisone. And we believed (and I still want to believe) that there exists a treatment somewhere that will help us in the fight against J.’s eczema. We tried many approaches and saw many natural medicine practitioners. The last doctor we saw was a nice woman who holds a medical degree from Worcester, MA, and then did some additional education on  natural medicine. She tried to convince us to use bio-resonance (I don’t want to go into details here, but as I understood, it is basically that the patient has to hold two electrodes with his hands and the electrodes are connected to a “bad” substance. Then just by holding the electrodes, the “resonance” of the substance will synchronize with the patient’s body and that is where healing takes place.). And that was the moment where I lost faith.

Although I am scientifically trained, I am willing to acknowledge that there are things we cannot explain (yet), and so far I really wanted to believe in alternative approaches. But so far, I have been very disappointed with everything we tried. My main two issues with alternative medicine are:

  1. I do accept that there are very good doctors (and human beings) that are able to help people in an unconventional way. Maybe even in a way that cannot be explained. But I do not accept to package all those approaches into pseudo-scientific explanations. Bits and pieces of medical or scientific knowledge are being put together into a seemingly plausible explanation, or, even worse, are used to justify the use of (at least to me) very obscure machines. I honestly prefer the argument of intuition and common sense over pseudo-scientific explanations.
  2. My second issue is the claim of reliability. As much as I am looking for any kind of study, I cannot find any indication that the alternative methods work. There are no statistics about the successful treatment of patients. I only hear about single examples where “it worked”. And doctors tell us “it works”, but how do they know without any statistics? The studies that do exists usually show the same success as placebo.

I believe that a good doctor or natural medicine practitioner can make very good suggestions based on experience and intuition. And I believe that certain treatments (like massage, acupuncture, etc) can be very helpful. But I am not willing to accept that I need to pay (a considerable amount) of money for some pseudo-scientific diagnostic measures and treatments.  And it makes me angry to think that a large fraction of the market of alternative medicine exploits the desperation and hope of sick people. Yes, some people find help, with a probability close to placebo.

On the other hand, our western school medicine treats eczema exclusively with cortisone. Is this the answer? Certainly not. Here happens exactly the opposite of what we see in alternative medicine: nothing, which is not clearly proven, is acceptable as treatment. But in a disease as diverse and individual as allergies and eczema, is this the right approach? What might work for one might not work for someone else and how can you, based on this diversity, do a fair comparison?

Ironically, the one treatment we were fighting to avoid for so long, the cortisone containing cream, has been a blessing to us in recent weeks (although, I can’t say anything about the longer term consequences yet. We are just starting to taper off the cortisone). I have never seen J. so happy and energetic. He does not take off his clothes and scratches himself until he bleeds at least twice a day. Instead he uses this energy to jump around and being a lovely little confrontational toddler. I can leave him playing by himself without having  to check on him every few minutes because he might scratch. I can’t stop caressing his smooth and soft skin. However, I know that we pay a very high price for all that.

I dream, that we will find a doctor who is willing to guide us through this jungle of possible treatments. Who knows the limits and advantages of both, school medicine and alternative medicine. Who understands critical arguments. Who with his experience can advise us what might or might not help, even if there is no proof for anything. I simply don’t want to accept that cortisone is our only hope, but I am also sick of all that swindle.

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Mercury poisening?

One day after we visited the allergologist at the children hospital we went to a health and life coach. It was a recommendation through friends of friends and after some thought be decided to shell out the 180 Euros it would cost and give it a try, although I didn’t like their website, or anything else I could find out about the coach. Anyhow, we went.

The coach was a nice pleasant person taking his time to ask all the relevant question about when and how the eczema started etc. His conclusion of the examination was that J. has a mercury poisoning. He suggested that the mercury in the amalgam fillings in my teeth could have been transmitted to J. during pregnancy and this together with an early vaccination (which could have contained mercury as preservative) could have pushed the immune system enough to trigger J.’s eczema. Two observation might support his claims: (1) when J. was born he did not have any lactobacillus in his intestines and he had liquid green pooh (sorry for the graphical detail); (2) A homeopathic doctor we saw palpated his abdomen (one of the few doctors who ever did this) and diagnosed an enlarged liver. As I understand, both points could be an indication of a poisoning.  Apparently, children under the age of three are not able to rid themselves off contamination and accumulate heavy metals etc. in their cells. Therefore the coach recommended to help J. and do a de-poisoning with sweet-water algae (spirulina).  These were his nutritional recommendations:

  • Use spirulina daily to extract mercury and other heavy metals from the cells and eliminate them from the body.
  • Absolutely no cow’s milk products. Cow’s milk protein is the most difficult protein to break down. Sheep and goat milk is ok. Our body is much better adapted to drink goat and sheep milk because humans have done this for many thousand more years than drinking cow’s milk (especially the modern highly developed cow’s milk).
  • No cilantro and ramsons. They both extract heavy metals from the cells but they don’t help to eliminate them from the body as spirulina does. This means the poison gets released from the cells but does not leave the organism. So it seems it is better to leave the job to spirulina. At least for now.
  • No asparagus. Apparently asparagus collects the heavy metals from the ground and it would add additional poisoning.
  • No sea-food. Not even sea salt. Fish from rivers yes, but nothing which comes out of the sea or ocean. As I understand this is also because of the contamination of the ocean waters.

Now comes the part I am not so happy about. He made the diagnosis using applied kinesiology. I don’t want to question applied kinesiology per se, but this example was less than convincing. According to his explanation, the main idea is that a muscle feels if something is not right and then looses its strength. So, the examiner asks the patient to withstand some pressure with e.g. his arm, but the patient will fail if there is a disturbance in the body.

Practically it looked like this: I had to lay down on an examination table and touch J., because I was the mediator for J. and touching him would allow his signals to be transmitted to my body so my body’s reactions would indicate a disturbance in J. (I do not at all understand how this can work, but anyhow….). The next step was that I had to press against the pressure the coach applied onto my right arm. When he would touch my or J.’s head or disturb the energy field by moving the hand along the body against the natural energy flow, then my arm was not able to withstand the pressure and just collapse. Now the coach gave boxes to J. filled with little glass vials containing many different substances (foods, plants, animal hairs, etc). If the box would contain a substance than would cause a problem to J. then my arm would collapse at the pressure.  I could not withstand mercury. Then the coach found the substance that negated the bad effect of mercury, which was spirulina. When J. held the vial containing mercury together with the vial containing spirulina then my arm could withstand again the pressure.

Here is my critic. I don’t believe the coach’s applied kinesiology. I believe he had the diagnosis ready after talking to us and in my opinion he used the test as a fancy way to “prove” to us his diagnosis. First, I think he pushed my arm differently when my arm could not withstand the pressure. Second, the test was not double-blind, he knew which vial J. was holding. Unfortunately, we were too polite to ask some more critical questions. I am not saying that applied kinesiology never works, but in this case I think it was a cheap way to sell us a hypothesis. I am getting a bit upset if people have a possible good intuition and then package it into a pseudo-scientific framework for a better sell. His diagnosis about the mercury (or any other) poisoning is absolutely plausible. And the recommendation to avoid cow’s milk  alone will cure eczema with a high probability in many children. But why did he have to add all this voodoo?

Posted in alternative medicine, diet, supplements, therapy, vaccination | 1 Comment

The visit at the children’s hospital

Last week we went to the allergologist at the children’s hospital. This was mainly a variation on the theme which we experienced already at the skin clinic. The approach is not at all diagnostic but focuses exclusively on symptom treatment which is basically controlling the eczema with steroid containing creams. This difference now at the children hospital was that the doctor suggested to use a stronger cortisone cream than what we got from the skin clinic but use it only for a few weeks. He suggested to cream J. from head to toe once a day with the cream for one week and then slowly taper off the use over the course of another 2-3 weeks. The idea is to clear up the skin quickly and efficiently and then continue to use  cortisone only to control flare-ups.

I don’t like the idea to cover J. with cortisone cream from head to toe. And as I said before I would rather not use it. However, it is so nice to see J.’s smooth skin. And I so badly want to give him a break from the itch… (yes, cortisone is a blessing and a curse).

One thing the doctor said I found particularly interesting: he said that eczema are the only skin condition where cortisone is in fact effective in the treatment against bacterial infections. As I understand, this is because the bacterial infection happens mostly because the local immune defense is disturbed and by restoring the skin condition the skin can more effectively ward off infections. And true, we are right now pretty good in terms of infections.

I know I am repeating myself, but I so much wished we would have a better option……

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A poem about eczema

This sad poem was published on NSGCCE:

Just stop scratching. By Ruth Holroyd

The itch is consuming
It takes over my brain
My skin I am tearing
The relief is the pain

Thickened and swollen
Red and sore
Constant skin crawling
I can’t take any more

My eyes are all puffy
My skin is inflamed
All red and angry
I feel so ashamed

I scratch and I scratch
I scratch all day long
The irritation is relentless
And I know that it’s wrong

My nails I cut short
So I use other things
Tweezers, combs, my brush
Clothing and rings

It prickles and tickles
All day and all night
I try all solutions
But no help is in sight

Elimination diets, sun bed treatments
Chinese remedies, herbal potions
Steroids, creams, ointments,
old wives tails and random notions

“Stop scratching” they say
“If only you would try”
“Oh thank you so much”
I feel like I could cry…

It just isn’t that simple
When your skin is so dry
Lumps keep rising, oozing,
Livid, heated. Oh so weary.

I dream of soft skin
Velvet smooth and silky
Of waking in comfort
A shiny new perfect me

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