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  • rce

    Can anyone help me I have a daughter who is 2 years old and suffers from is it embd and rce! I don't really know a lot bout the disease so just need some help when to contact the consultant how long to leave it when my daughters eyes are red and sore and she complains of very bad light sensitivity! she wears bandage contacts that were amazing for a couple of months then just before xmas she started getting erosions under them and this week has been teribley bad we have been in darkness most of the week! its so hard for all of us esp as she cant tell me how she is feeling except for it being to bright! she is on lacri lube at night and through it, hylo forte hourly, salt drops sodium chloride two times a day, and finely fml once a day! and any other tips that anyone has thanks! ( sorry bout spelling)

  • #2
    Sammygirl ((hugs)) Can you get her seen today or tomorrow before the weekend? Or phone your Eye Clinic and ask what they want to do. I do understand this is also about working out what's normal for you, I feel just the same, but the doc should be guiding you.

    Are you still with SH? And have you been to GOS or Moorfields recently? Or is she also being seen in a regional paediatric Eye Clinic?

    If you can't get to your paediatric ophthalmologist, if the need arises, you can get her seen in Moorfields A&E Richard Desmond Eye Centre (children's eyes) weekdays, or Moorfields Eye Hospital A&E at weekends (I think you live South East England?) We normally train + taxi if it's not easy to find a driver, parking is impossible.

    The managing eye consultant/s must build a relationship with you so that you can access them for ongoing management advice when things change without waiting for the next appointment, and they get any problems reported by you straight away so they can change the treatment or do checks. I would not hesitate to ring if anything changes at all, esp with history of infection because managing the eye surface is the doctor's responsibility.

    Has someone done an OCT scan or ultrasound scan of the anterior segment (front of the eye), or are they just diagnosing from observation?

    Will she wear wraparound sunglasses? Assuming they've removed the lenses? or have they put them back? If there's a red eye with a bandage lens in, they should be asking to see her same day surely.

    However, this is about good management. I would contact the Consultant any time you need advice. That's your job done, ma'am. Either phone the Eye Clinic front desk or phone the Secretary. Chat personal message (PM) with Pinklady because she's dealing with the same situation, seeing the same docs.

    Another thing very useful we've found for the Ophthalmologists is to keep a Diary of symptoms and treatment - saves time when you give the history, especially if you see other ophthalmologists, optometrist or GP as well. One of your List of Questions to them would be this one you are asking now - when should I worry? when should I bring her in for a check? x
    Last edited by littlemermaid; 08-Feb-2013, 14:23.
    Paediatric ocular rosacea ~ primum non nocere


    • #3
      Sammygirl, I would ring or go to hospital as littlemermaid says, she knows your local system well.

      When my son was younger his photosensativity was a pretty good guide to how big the erosion was, now it's more pain that lets me know when we need to see the Dr. I always find it hard to figure out when to go to A&E but you're better to go and come home with no change in treatment than have the eye damaged from an infection , we have never been made to feel we're over reacting and the thing is we can't see what's going on in their eyes and they can't describe it. Talk to the Dr when this is sorted they should give you a list of things to get concerned about and a plan of what to do.

      Good luck and take care


      • #4
        Hi, Sammygirl. I'm really sorry to hear bout your little one! I was 40 when my ebmd, which I did not know I had, got so bad that it resulted in rce's for about nine months. It took that long to get them under control, and I now manage my ebmd with Muro 128 5% drops four times each day. One thing that might help your little one may be Tranquileyes goggles. They keep the lids closed and eyes moist. If your daughter's eyes are slightly open when she sleeps, it may be something that the goggles would help. You may want to strategize with her doctor regarding where on the cornea the erosions are occurring and deduce if it is from a previous injury, like a fingernail scratch, or if it is happening along the line where the lids meet when the eyes are closed.

        Best wishes to you and your daughter,