update on Mia

From reader, Danielle:

I wanted to give an update on Mia and her progress; and to maybe vent to other parents going through similar situations.

Mia just had her 2nd surgery on Tuesday for glaucoma.  After her first surgery when she was 1 month old to have a cataract removed from her right eye, her IOP (intraocular pressure) was high.  She was taking several different glaucoma medications to help decrease her pressure, however her IOP remained high.  On Tuesday she went in for surgery to have an iridotomy (a small hole placed in the white part of her eye) and to also have a valve (similar to a shunt) placed in her eye to help control her pressure.  Her surgery last over 3 hours and there were no complications (thank god).   While she was in surgery she also had tissue that began growing over her artificial lens removed and her pupil was widened.   We currently have to place 5 different drops and ointments in her eye 15 times a day.  We had to create a chart to help us so we would know which drops /ointments we have placed in her eye throughout the day.  She is already scheduled to have an exam under anesthesia in 6 weeks to ensure the valve has opened and is draining excess fluid.  We have a long road ahead of us with many surgeries and exams under anesthesia to correct her vision.

Over the past 3 weeks she has not been able to patch or wear her glasses due to clouding from glaucoma and the re-growth of tissue over her lens, which was completely obstructing her vision.    I feel like every time we think we are making progress, we are set back by some other eye condition.   I also feel like we are unable to effectively improve her vision because we are unable to patch and have her wear her glasses.  We have already lost 3 weeks and I am unsure when she will be able to begin with patching/glasses due to her recovery from surgery.   I feel horrible that she has been through so much and she is not even 4 months old.  I believe everything she has been through; all of the surgeries, poking, prodding, different medications, many trips to the ophthalmologist, will make her a very strong willed little girl.  She is truly my hero.

Interesting fact –  The legendary singer, Ray Charles went blind at age 7 from congenital glaucoma.

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15 responses to “update on Mia

  1. Bless her heart. She looks like a trooper, though.

    The Italian singer Andrea Boccelli went blind from congenital glaucoma, as well, although I believe he was older, a teenager maybe, when he completely lost his sight.

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  2. Thanks for the update, Danielle. I can’t imagine how frustrating and worrisome this all is for you guys. Just thinking about 5 different drops and ointments, 15 times a day makes me exhausted. Mia is such a trooper, and you guys are doing a great job keeping up with it.

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  3. She is so beautiful! Thanks for posting the pics and for the update. I am so glad she has loving parents who can jump through all the hoops to give her eyes their best, and for the medical care you have access to. Early parenthood (for me anyway) can feel like it’s a round of sleepless nights, etc. and you wonder if/when it will ever get better … but eventually it does. I imagine this round of drops, ointments, medical apts etc. might feel a bit like that. It will all settle down at some point, and for now you are all just buckling down to get through it. (hugs)

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  4. She is gorgeous! I’m so sorry to hear about the delay in patching/glasses. I’m sure I would be fit to be tied too. I can’t even imagine all those drops (and we thought we had it bad!) I think you are right- she is going to be one tough cookie!!

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  5. 5 different drops, 15 times a day? My 3 year old has just been diagnosed with congenital glaucoma in one eye, and just getting 1 drop in his eye twice a day is the biggest ordeal in the world (my son hates the drops because they hurt).

    My heart goes out to you and my hat goes off to you.

    Oh, and hey, if you know of any congenital glaucoma online parent support groups, would you shoot me an email and let me know? I can’t seem to find one, and am toying with the idea of starting my own. My email address is connersmom@petersengraphics.com

    Thanks!

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  6. You are such a strong mom. I have a son with Congenital Glaucoma and we have been through the heartbreaking rollercoaster of surgery after surgery, drops after drops and like you we made a chart – GOD THANK YOU FOR MS EXCEL!!!
    It is a horrible feeling when you know the meds / drops are hurting (paining) them. I keep telling myself and him that we are doing this to save his sight.
    Is the valve mia had implanted called the Seton Valve? We are at the Trabeculectomy stage of ops after 4 unsuccessful goniotomy’s. Seton Valve is our next stop if this is unsuccessful.
    You are in our thoughts and prayers and I will try and keep up with Mia’s progress.

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  7. My daughter had a Baerveldt valve implant placed in her eye, her glaucoma specialist told me that all the valves are the same. The Ahmed, Baerveldt and Seton are all different name brands for each valve. Her valve surgery went great. She just went in 2 days ago to have an exam under anesthesia and her pressure is low and the valve is draining excess fluid. The doctor told us that the valve shifted out of place and is pushing against her cornea, however it’s not obstructing her vision. He told us that she will most likely need another surgery to readjust the valve and possibly replace her cornea. This is something that we will wait on since she is still so young and we do not want to put her through another surgery until we have to. The greatest news we received, aside from how well she is doing is that she no longer needs drops or ointments, this will be the first time in over 5 months that we do not have to put anything in her eye. She will be having another EUA (exam under anesthesia) in 6 months to ensure her pressure is still low and the valve is working properly. This was also great news considering she is 6 months old and has been under anesthesia 4 times, so 6 months from now with no drops and no surgery is fabulous.

    When was your son diagnosed? How is he doing? Does he have glaucoma in both eyes? How old is he? Before Mia was diagnosed I never even knew that these eye disorders affected babies/children. Since she was diagnosed I feel like I should go back to college for ophthalmology, I think I would have a heads up on most of the students. During Mia’s last check up her pediatrician was asking me questions. I told him that is was very strange having a doctor asking me medical questions; and it was even stranger that I was able to answer these questions.

    I know most parents on this blog have problems with their pediatrician not following up or noticing their child’s eye conditions. My daughters pediatrician was great, I wish more parents had the same experience, not that I want any child to have any health problems. Dr. Singer noticed Mia’s cataract when she was 12 days old. I could tell that he felt horrible giving me the news and he sat on the phone for over 30 minutes trying to get her an appointment with an eye doctor as soon as possible, after 30 minutes of trying, he got her an appointment 2 days later. While I was on the phone giving the receptionist my insurance information, Dr. Singer took Mia from me and he was feeding her and holding her with such compassion. I felt like he was treating my daughter like she was his own daughter, not a patient. He really helped me through a tough time, I felt so alone until I looked at him and saw the compassion he had towards my daughter. I wish more doctors would try to put themselves in their patients shoes and try to understand what they are going through.

    Please keep me updated n your sons progress.

    Danielle

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  8. Danielle, thanks for the update. I’m so happy that things are looking pretty good for Mia and that you’re drop and ointment free for the time being!! That’s got to feel great. I’m so pleased you have a great pediatrician. Ours has been a great support, and I’m extremely thankful that when I first brought my concerns about Zoe’s eyes up that she respected my concerns and referred us to an ophthalmologist even though she didn’t see any crossing at that exam.

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  9. Hi Danielle,
    Our son is 2 in February. He was diagnosed at 19months with bilateral Congenital Glaucoma.
    The news blew our world apart but certainly explains so much.
    He has had a left trabeculectomy and trabeculotomy – IOP is now down to 17 from 30 and appears it will need drop therapy to lower the pressure to 14. On 5 January he had a right trabeculectomy and trabeculotomy – IOP is now down to 5 (too low) from 39. We are having weekly/10 day EUA’s to check on IOP’s.
    We are truly fortunate to have one of the world top 4 Congenital Glaucoma specialists looking after him. Long term prognosis will be 3 monthly EUA’s and drops to stabilise IOP’s. We already have his glasses but he is unable to wear them as his eye has a shield on it day and night to protect it.
    We have noticed a significant improvement in his sight (initial prognosis was that he could only see 15cm in front of his nose to what now appears to be about 3m). His appetite has also improved.
    I am interested to learn more about corneal transplants though.. Do you have any info?? Kaelen has significant corneal scarring which lets too much light in – making him intolerant to light and we have been told this will never improve.
    I can sympathise with your drop regime. We are currently on 5 drops, 6 x daily. Such fun but I take comfort in knowing that it is helping give him the best chance we can.
    Our thoughts are with you,. Anita

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  10. Hello Anita,

    Has your son’s PO considered a valve implant? Or is this a last resort? Our daughter’s IOP was up in the high 30’s after her cataract surgery and she was placed on Cosopt drops and an oral medication (Acetazolamide) and this only dropped her IOP down to the mid to low 30’s. She had an iridotomy when she had her valve implant surgery. Her IOP is now down in low teens, thank god. When she went in for her EUA 2 months ago, her glaucoma specialist told us that her valve shifted out of place and is pressing against her cornea. He feels that since the valve is not obstructing her vision he does not want to put her through another surgery, until we have to. This really concerns me because this means we are waiting until there is damage to her cornea at which point she will need a replacement. Her PO is in disagreement and feels she should have surgery so the valve can be readjusted and we can avoid having to replace her cornea. There is a great support group for parents that have children with cataracts and glaucoma, PGCFA (Pediatric Glaucoma and Cataract Family Association). There is a site http://pgcfa.org and a support group http://health.groups.yahoo.com/group/PGCFA-Support/. Both sites have a lot of information and support. There were a few posts the other day about corneal replacement and one parent was talking about a new procedure where they use and artificial cornea (keratoprosthesis) rather than a donor. From what she is saying, the keratoprosthesis has a very high success rate, and a the body will not reject the implant. If you need any additional information, or just want to chat please send me an email dblight1@msn.com. Our thoughts are also with you.

    Danielle

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  11. Pingback: occluding lens for patching « little four eyes·

  12. Pingback: your stories - cataracts « little four eyes·

  13. I’m a grandmother of a boy with all the problems mentioned in the posts. Cataract, surgery, contacts, IOC, drops and intense struggle by his parents to patch him. He pulled off the patches around 12 months so there was little success for the next 2 years. His parents asked me to give it a try. He is very close to me and so I had great luck. No crying, no pulling it off, etc. because I took him all over on an ATV. The vision in the bad eye that also wandered seemed to click on after 30 minutes. He grinned and said “I am so happy” Mind you, he is only three. We went 50 minutes that first day. After the patch came off, I noticed immediately his eyes were tracking. Even his grandfather noticed and he is pretty oblivious. Each day I added 10 minutes and he quickly realized the patch stayed until the alarm on my phone went off.

    His doctor said 2 hours was sufficient, his other doctors said 4 – 6 hours. I patched for 4 days then my son, his father, was successful in taking over. I hope this answers your question; patching seems to help eyes track together and it lasts for 4 – 6 hours afterwards. So I guess after a year of patching everyday it should stick.

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  14. Hi Sue,
    Thanks for the comment, what a great testament to how important trust is for kids to patch. Please keep us updated on how your grandson is doing.

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  15. Pingback: Your stories: you make the best decision based on the information you are provided with « little four eyes·

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