Hello again.

My cousin and I are very pleased with all the support and comments we received. And I’d like to know if anyone could help us. Our princess has eye problems, she can’t see almost anything, but we don’t know yet how much she can see. I’d love to know if anybody has any kind of problem like this. I see many children here, but none comments about this. It’s a doubt that concern us a lot.

She’s also starting to have seizures. We had 2 moments since the birth and we don’t know if it’s going to increase. I saw a medicine name (Keppra), but I still have to find if it’s the same name here in Brasil, and if my cousin could afford or get for free. After all, all we wanna is make her life the best she can have.

Have everybody a nice weekend.

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7 Responses to Doubts

  1. Heather says:

    My son also had vision problems for awhile. He was not making any eye contact, and I thought he might be blind. We took him to an ophthalmologist when he was four months old. The doctor said his eyes were structurally healthy and reassured us that he would see eventually, but that his vision would be delayed in coming in. The doctor was right. By age six months, he was starting to focus on a few things, and now at age one year, he makes full eye contact and looks at new things with focus.

    You might decide to see an eye doctor, but I want to give you hope that your princess will see just fine. It just might take a few more weeks or months, but it will come.

  2. Legato says:

    Our son is now 9 months old, has WHS and an eyecondition separate from the syndrom that has rendered him blind. I hope that the admin can forward my e-mail to you and your cousin. Up to this date, I have not encountered anyone with WHS and decreased vision.

  3. Monda says:

    Hi Legato!
    My daughter has WHS and a separate eye condition as well. Her condition is called Peter’s Anomaly and she only has a small amount of vision in her right eye due to glaucoma and a cataract. She does not have any vision in her left eye.

  4. Michael says:


    My daughter has WHS and suffers from vision problems. She has a colomboma of the left eye which does not affect her vision (so the doctors would have us believe). However, she does have some damage to the optic nerves of both eyes which limits the amount she can see. We have recentle had the eyesight elecrto wave test done and the doctors believe that the information she see’s is reaching her brain. One eye is sending more information than the other. We know that she can see something but we are still not sure how much. Only time will tell. Our daughter also has seizures which are controlled with medication. Our daughter is one year old now.

  5. Carol-Anne says:


    My son Harry has WHS and he has problems with his vision. When he was first born we didn’t think he could see anything at all. He is now 8 months and his vision is getting better. He see’s things but cannot trace them. He loves bright lights etc. He is smiling loads now and i was told that if he couldn’t see anything he wouldn’t be able to do that.We saw an eye specialist who said his eyes are structurally ok. They think it is developmental and as his brain develops so will his eyes. They did say that seizures can slow things down (he had his first at 5 months old) but as soon as that is under control we should see a big improvement. I hope this helps! Good luck and stay strong xxx

  6. Letty says:

    SEIZURE wise, my (now 15 month old) son’s first one was 1/27/11….just out of the blue. I watched him from the moment he FELT it coming on to the time it ended….it scared me to death!!! I lost it for about 5 seconds-but it was long enough for my 8 year old son to see ME loose it. I just heard him right beside me just as scared as I was and I was forced to get my composure for him. Otherwise, I would have lost it completely!!! His last one was about 1.5 months ago. He had several after the one in January, but his last one was a few minutes shy of an hour…it was stopped at the hospital for about 10 minutes and then he had another one. His breathing became erratic and they had to intubate him. He was put into PICU and about 2:30ish am he woke up trying to pull the tubes out himself. They upped his dosage and THANK GOD he hasn’t had any other episodes since then. Vision wise, I used to work for an ophthalmologist. VISION wise, there are so many technical advances and visual aides available. The sooner your niece is evaluated the better. It could be that she just has “refractive error”-which means that she needs glasses. My son has strabismus-his left eye turns out and will eventually have to have muscle surgery, but very little refractive error. Sometimes the nerve endings don’t develop completely, and the “eye never learns to see” so that’s where the refractive error comes into play. Simply slapping on a pair of glasses to correct that “refractive error” can help the “eye learn to see.” As far as meds., sometimes the pharmaceutical companies have what’s called an “Indigent Program” and depending on the total household income, a person may qualify for free meds. There should be a 1-800-number somewhere on her med. bottle or even google the pharmaceutical company to see what’s available….even a discount card. I know every bit counts. I sure hope this helps.

  7. shirley bidnick says:

    I hope Alexia is alright and is getting the help she needs. Please give us an up date about her soon.

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