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.

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5 Responses to Visit at the children’s hospital

  1. Spanish Key says:

    Hey Caroline. I finally posted the second half of my interview with Yosipovitch. You might find it interesting.

  2. Marcie Mom says:

    Hi, I recently read that there is minimal side effects on steroid use and it gives me comfort that treatment with steroid is ok. You can read about it on the links below:

    Personally, my baby’s eczema improved after a one-time oral steroid course and I only have to use steroid cream alternate day. I find it less stressful than searching for alternative treatments which may not be safe as sometimes, less research has been conducted on it or it does not have to be regulated. Do take care.

    • Caroline says:

      I certainly agree with you – the use of steroid cream has increased our quality of life tremendously! And, yes, the over all stress is much less. However, I do feel that this is not the final answer and I still hope that we might find the “magic tool” that will cure J.’s eczema. I know that this is probably a lost course. But I feel I need to do something….

  3. Claude says:

    My daughter has had a lot of trouble with eczema, and I have to say that when I got ahold of some Cerave and used it twice a day copiously, esp after baths, it did really really make a difference. She has been able to maintain without steroids now for months and months. I know you’ve probably been recommended tons of cremes, but other than steroids, this is the only one that significantly improved things for my daughter–the ceramides really did make a difference. Definitely worth trying–can you buy it off ebay perhaps? I ended up going international shipping through, but the shipping cost recently went way up. But I would recommend trying it. I wanted to try Epiceram but my Dr hadn’t heard of it so we went the Cerave route. I’m confident epiceram would also have worked for her. Best of luck–not a fun problem to watch you child suffer.

    • Caroline says:

      Thanks, Claude! Yes, I agree with you, the CeraVe cream is really good. My sister in law brought us two big jars of cream from the US and we are using it ever since. However, in our case it is not enough and we still use the steroid cream, but CeraVe certainly improved J.’s condition. I also heard about Epiceram and we consider getting it through our pediatrician and an international pharmacy, but so far we haven’t done it. Interestingly, even at the skin clinic, the doctors here in Germany are very skeptical towards the use and benefits of ceramides in creams. All doctors I talked to mainly shrug it off as useless and made the glycerin in the cream responsible for the beneficial effects…. But, we have good experiences with CeraVe.

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