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.
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.