Starting Month 20

What a rut we’re  in. There are some positives though. On Dec 7th, Faiz had cataract surgery and he can now see. His cataract was consistent with cataracts caused by trauma. It was fully matured and dense. After reading some of Dr. Fukaya’s information that was sent to me by Rosemarie Curley, I concluded that it was the excessive slapping of the face and head that Faiz was doing for a few days before the blurred vision started. He would do it for hours at a time and sometimes very hard. It was so intense that we couldn’t stop him.

  

We consulted with many doctors and found one that specializes in traumatic cataracts in children.

We went ahead and administered the steroid drops for 4 weeks. Today was the last day. We consulted with Dr Rapaport and he suggested that it shouldn’t set us back any if at all. The Dr that performed the surgery also showed us how to close the tear duct when administering the drops. 

That chapter is now behind us.

How is Faiz doing?

He started another full body flare two days before surgery. It was and still is horrific. The sad part is that he never really recovered from the previous flare that started 8 months ago. 

  • Insomnia, but getting some sleep.
  • Oozing less, but the odor is still there.
  • Still cannot sleep on a bed, has to be the floor.
  • Still not going to school.
  • Still cannot wear normal clothes, has to be worn out cotton pajamas. He gets pins and needles if he wears anything else.
  • Eyebrows grew back again, but going away again due to rubbing.
  • A new symptom -the worst- he calls “bugs”. We had a couple of trips to the ER cause of this. It was like constant bugs biting all over very intense and continuous. It would start around his stomach then spread all over. He would complain about lymph node pain before these. If anyone has had something like this and knows how to make it go away, please inform us.
  • We tried cyclosporine, he had an allergic reaction after the third dose. Major back and leg pain along with bladder pain. All doctors were stumped. The doctor said to stop the drug. All the pain and everything went away within a day. They suggested starting again with half of the previous dose. We followed their advice and the same thing happened again after the third dose. No more cyclosporine. I’m not going to imply anything but just to let you know Faiz’s blurred vision happened about a week after stopping cyclosporine.
  • Like most TSW sufferers, the itch it THE WORST! No meds really work.
  • He takes showers but cannot handle being submerged in a tub.
  • He usually gets pins and needles after a shower which don’t usually don’t go away without meds. We give him gabepentin which works most of the time. 

This pic is after surgery.  

   
We were stuck in traffic for almost two hours with him screaming in pain. He lost his voice for a day or two.

His hands are still pretty bad.

  

He keeps his arms wrapped up. (This is before surgery-his right eye is kind of like a lazy eye. Surgery has corrected this.)

  

Neck is a problem area.

  
Hope that 2016 brings lots of healing without the pain and suffering.

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    Just when you think it can’t get any worse.

    Faiz has been in this miserable flare up for almost 5 months now. He suffers from major insomnia, extreme itching accompanied by major pins and needles added to the ongoing discomfort. 

    He hasn’t been able to sleep in a bed for over a year.

    Last Saturday Faiz woke up and couldn’t really see out of his right eye. He said it was very blurry. Later that day everything seemed cloudy white. Two days later, he couldn’t tell when I was standing in front of him.

    Today we got his eyes checked, the doctor said that he had a cataract. The doctor also said that this will require surgery. The doctor continued that post surgery he will be required to use steroids to control the inflammation.

    His outlook on life has totally diminished.

    Please pray for him.

    As the flare continues

    Faiz got a bit of relief by being able to handle water again. This means spending hours in the bath. He can be out of the bath for about an hour, but that intense itch and burning returns with a vengeance. When in the bath, I have not seen him scratch and this is the only place he can sleep. 

    At the four month flare, Dr. Rapaport advised us to keep him in the bath as long as he wants. At least he doesn’t scream in pain but is confined to the tub. 

    Some pictures below of when this flare started.

       
         

    Looking forward to him pulling out of this flare soon God willing.

    One year into Topical Steroid Withdrawal

    The worst parts of TSW ( oozing, burning, intense itching, tightness, constant shedding, insomnia) was supposed to be a thing of the past. Faiz was stable with his condition up until a couple of weeks ago. He got sick with a fever and things quickly came crashing down. 

    His skin is flared like it was in the four month flare. The oozing is back with red burning skin accompanied by extreme tightness. It’s affecting his face, arms and back. He sleeps about an hour a day. Severe depression. His eyebrows are starting to fall off again.

    Maybe this is the “second flare” that most TSW sufferers refer to. I was hoping things would get easier as time went on. Seeing your child go through this horrific ordeal then have it get seemingly worse after a year makes you rethink and question if you are doing the right thing. 

    Now his extreme pain can last hours. This would be him screaming for hours. This is with pain meds and anti inflamatories. At least before we could put him in the bath, but now the water burns him. 

    We don’t know how long this is going to last. We don’t know how long we can take seeing our son suffer so much. 
      

    Starting month 10

    Now we’ve completed ten months off of topical steroids.
    Update on Faiz’s condition:

    Sleep – much better but can’t keep a steady schedule due to the painful and very frequent flares. Still can’t sleep on a bed- has to be on the floor.

    School – started online public school but is having a hard time keeping up. The flares range from a day to a week. He may get a day or two break, but it’s right back into another flare.

    Medications: we’ve considerably cut down on medication specially Advil. Benadryl as needed.

    Baths:
    At the four-month flareup, a bath was the only relief. Now, water anywhere on his body burns and burns and burns. The pain can last for up to 30 minutes of excruciating pain. There is literally nothing you can do for those 30 minutes. Ice or heat doesn’t help.

    Tightness:
    Not as bad but still there during the flareups.

    Zingers:
    This zingers stopped for couple of months. They have now come back but with less intensity.

    Oozing:
    Haven’t seen any in a while. Thank God.

    Shedding:
    Still there but not as much as before.

    Overall skin appearance:
    The nails on his hands have become extremely thick. Especially the thumbs. They are about four or five times thicker than normal nails.

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    His eyebrows are growing back.

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    He still wears latex free elastic bandages on his arms and feet. We change these frequently throughout the day. This is the one thing that keeps them from destroying his hands and feet. It also greatly reduces the itching sensation.

    His hands may have slight improvement.

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    At the completion of nine months, this is still a major struggle. It has extremely traumatized him. He hasn’t spoken or communicated with any of his friends in months. He does like to visit family as in the picture above with the sister.

    Hoping for better days to come.

    Day 169 – visible improvements , but….

    Here we are at day 169. There seems to be some cosmetic improvements to the physical appearance of his skin. However the physical discomfort is still quite the same. There is a lot of burning, oozing, and intense itching. The itching seems to be the worst and last the longest without a break. The burning and losing seem to be here and there but when they are there it is extremely intense.
    Faiz is working on homeschooling through the public school system. He is required to meet the attendance requirement of six hours a day. He is obviously not able to do this. we are going to have a chat with the teacher next week and see what we can do.
    Below are some pictures to show the cosmetic improvements of his feet and hands.

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    This massager pictured below is the one thing that he claims keep him sane. Also this helps control the itching a bit.

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    Day 152 – wrapping up helps

    We have found that if we wrap him up he seems to scratch a lot less. We found hundred percent cotton tubes, the kind that are used before a cast is put on for broken bones.

    Even with being wrapped up he finds places to scratch throughout the night.
    Here are a couple of pictures of his feet after a bath. You can see the discoloration caused by years of topical steroid usage.IMG_0588.JPG

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