Anna managed to open her eyes yesterday evening after holding it closed for three days. Her abrasion started on Monday morning. While she was playing, just closed her eyes and cried in pain. This happened for couple of times on that day. But she was doing fine. She must have rubbed her eyes again on Monday night, Tuesday morning was not able to open her eyes, but still managed to open occasionally. From Wednesday not opening at all. Thursday we took her to a new eye doctor who has experience with EB, hoping to get some advice on how to prevent corneal abrasions, even though that doc is out of network of our insurance. Her current doctor is fine in check up and giving medicines, but he won't even hear our questions or give any advice. He is always in hurry and he is not familiar with EB, so he might not know how we are suffering. This new doc gave the same medicines but one extra lubricant to put at bed time.
The reason he think is, in EB, eyes are just affected as the skin. After sleeping through night, if the eyes are dry, it can get stick to eye lid and just opening eyes in the morning can tear the cornea. It seems to be a valid reason, I have read about it for other EB patients. Afterall the protein, laminin332, the one she is lacking is the one that plays a vital role in eyes. She was having this severe constipation for two months now, that from an Ayurvedic medicine we tried to prevent Anemia. But that gave her blistering on her face as well. That also I believe because of skin getting dried up, despite the lubricants we apply several times a day. That may be the same reason her eyes got dried up. She is getting this corneal abrasion only for two months now. And then her usual rubbing might have caused the already teared area to tear some more. So I am thinking that it is not just her rubbing that caused it. Because she has been rubbing her eyes from birth. It used to give blisters to even her eye lid, but never inside her eyes.
I couldn't find the reason of her sudden blister outbreak on her face, her face otherwise was almost fine. I tried stopping oatmeal and wheat cereals, changed formula, but never doubted this medicine for anemia until recently. Usually not much after effects of using Ayurvedic medicine and she is taking other ayurvedic medicines for wound healing and breathing for more than one year without any issues. She got this problem, I guess because of her poor water intake. When we stopped the medicine last week, her constipation went away, facial blistering stopped and it is healing by God's grace. So hope that this change and putting the new lubricant on her eyes will prevent new abrasions.
Corneal abrasion is a worst thing to happen for Anna and to us also. I need to carry her rocking in sleeping position all day and (several times at night too). She won't lay down or allow me to sit either, I am totally exhausted after 5 days of carrying her, despite my MIL carrying her sometime for me to take a break. But after seeing her opened her eyes and do her usual plays just melt my heart. Mommy's sweet baby..
She is still watering from her eyes. Think it will take a couple more days to completely heal. Yesterday my husband and me were taking shifts at night to guard her from rubbing again. God, she is rubbing her eyes a lot. I hold her hands so many times.This is after giving Atarax at night for itching.
Praying to end this corneal abrasion episode. This is one of the worst thing to happen in EB.
Thanks everyone for praying for my baby!!..