Month 6 TSW

This have been a very hard month for Owen.  We started to see some improvements last month and his legs looked like they were going to heal and then his skin has taken a turn for the worse and we just can’t seem to get out of this flare.  The backs of his legs started to weep and this time even the fronts did too.  This is an area that hasn’t bothered him for 6 months and now he just can’t seem to stop the itching, weeping cycle.  His hands and fingers also started to itch again and are now all scabbed.  His neck has started to flare again as well.  This has probably been the most discouraging month that we have gone through. As anyone going through TSW understands, he is just so tired of feeling tired and itchy and miserable.

He had really made some progress in previous months but this flare really knocked him out.  He has been more discouraged than I have seen him.  He is usually so positive but the past two weeks he tells us constantly that he is so tired of having itchy skin and asks when this will be over.  I don’t blame him as he is so miserable.   Its just so heartbreaking to not be able to help fix this for him.  I also feel guilty when I get frustrated with his situation.  He requires so much more care than a healthy 4 year old.  I have to dress him completely instead of just helping him as he can’t be by himself without clothes on or he will just tear his skin apart.  Sometimes I even  have to feed him when his hands are sore and we are often up with him several times a night.  On days that his legs hurt really bad I carry him to the car and up the stairs.  I feel terrible that I get annoyed because he is the one who is suffering.  The ITSAN.org parents forum is so helpful for me to see that our struggles are similar to others and that my feelings and Owen’s are normal.   This past few days I feel like we might be starting to move out of this flare. I’ll keep my fingers crossed though as any healing can be ruined in a 10 minute scratching fit.

Its always so hard to figure out what triggers these flares or if there really is a cause.  We had gone to visit some family for spring break and tried to watch his food closely but its hard when traveling.  Owen eats a clean, whole foods diet which consists of meat, vegetables and fruits.  Our family that we stayed with had a dog and I’m not sure if that set off an allergic reaction that led into this flare.  Another possible trigger is that our functional medicine dr. suggested that we try to stop taking one of our B vitamins.  His flare started a week after we stopped this vitamin.  A few months back he went into a terrible flare after we ran out of his B vitamins.  As the B vitamins are needed for removal of toxins and cell regeneration it makes sense that his body really needs them.  This is all such a guessing game and his flare could have started from either of these situations or from neither of them.

I keep trying to remind myself that this will pass and we will get through this but when you are in the middle of it, it just doesn’t feel like there is an end in sight.  When I had each of my babies, I remember thinking that those first few weeks with a newborn were so difficult and I was so tired that I just didn’t know if I could make it through.  Now I look back and think, it was only bad for the first few months.  I am hoping that this situation will be like that.  When he’s 15 we will think about how he had a hard go of it for a while when he was a little boy but it will just be a blip in his otherwise healthy life.

Owen turns 4 next month and we are hoping for some healing this next month so that he can at least enjoy some fun activities for his birthday.  He love animals and we are planning on a trip to a zoo.  We did get to a zoo in Dallas this month on vacation and Owen was beyond excited to get to see his favorite animal, the cheetah!

Here are some photos of this past month.

Red, scratched hands.  Practicing some letters.

Red, scratched hands. Practicing some letters.

2014-03-29 10.35.03

Fronts of his knees. The first time these have gotten so red and weepy

2014-03-29 10.34.55

Backs of his legs, red and weeping

Owen and his brother in front of the Cheetahs. We couldn't get one in the picture.

Owen and his brother in front of the Cheetahs. We couldn’t get one in the picture.

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4 thoughts on “Month 6 TSW

  1. Hi, I have just come across your blog and have really identified with all your problems. My son is 8 and has had eczema since birth. We have battled with various degrease of severity throughout his life and used TS daily for over 5years. We haven’t started TSW yet but are preparing to start in a few weeks. We have suffered extreme itching and the one and only remedie that has worked for us in recent months is moisturiser withdrarwal in combination with apple cider vinegar wash. It only took maybe couple of weeks to adjust to it but his itch has decreased significantly. I came to the decision to do MW as a result of him getting an MRSA infection and spending Xmas in hospital, he couldn’t tolerate anything on his skin and we we’re in a desperate situation for over 2months after to calm his skin down. I’m sure you have done a massive amount of research on the whole eczema issue and perhaps already read about MW so I apologise if I’m going on about it. I hope and wish your gorgeous son will get better soon and the itch will calm down. Wishing you both all the best and speedy healing. He is such a brave boy. Well done for getting so far. Hana x

    • Hana, I am so sorry to hear about your son as this is just such a mess to go through. I haven’t written about it in my blog but we actually haven’t used any type of moisturizer or oil on Owen’s skin for over a month now. He didn’t really have much of a withdrawal as we were using everything so sparingly anyway. None of our products were helping and I had researched that it seems to help a lot of people so we thought we might as well give him the best chance of recovery. I am so sorry to hear about your son’s staph infection, we were terrified when it happened to Owen. That was our turning point to stop steroids. Thank you so much for your comment. I appreciate any feedback as you never know when something could work for your child and I have gotten the best advice from other parents. We will give the the ACV baths a try now that his skin is starting to heal a little bit. He has been so bad the past couple of weeks we actually stopped giving baths altogether for about 3 weeks. Good luck to you and your family, this has been a really hard process but I know in my heart that its the best solution for him in the long run. A lifetime of steroid use cannot be the answer.

      • You are absolutely right and you are doing the right thing. I agree with you that TSW is the only way forward. Our kids will eventually heal and get to live a normal life. We have to stay positive. Lots of love Hana x

  2. The pictures really show how severe this TSW can be! Praying for Owen and the rest of your family for healing and peace! He really needs a break – hopefully you will get some answers soon! 🙂

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