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Pediatric Ophthalmologist



Last week went to Tootie's eye doctor. We'd met with him this past June and were confident in starting Tootie on Vigabatrin.


Vigabatrin is an antiepileptic drug that was just approved by the FDA this year. Since Vigabatrin can permanently damage the vision of anyone who takes it, anyone on this medication must see an Ophthalmologist every 6 months.


At our initial meeting in June, the loss of peripheral vision was discussed; however, this time the doctor shared we would need to decide if blindness outweighed the need to stop the seizures.


Tootie's Ophthalmologist also shared the use of Vigabatrin is receiving a lot of controversy. Apparently, anyone who takes this drug is now going to be required to have 4 ERG's (Electroretinography) a year.


In this procedure, a tiny electrode is placed right on the eye to sense and record how the eye changes as a light flashes.The ERG's require one to be anesthetized so, that means anesthesia 4 times a year, a risk in itself.


I know the daily seizures are doing damage and recently learned about sudden unexpected death in epilepsy (SUDEP); however, if Tootie loses her vision, in my opinion; all she has accomplished would be lost.


Please pray for my daughter and son-in-law as they make a very difficult decision, thank you.


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I am sorry Elondie, it seems like a very difficult decision. My thoughts and prayers are with you so that the right decision is made



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Oh dear, this is a hard one. I'll pray for them and also the researchers as they look for a drug that is better in every way to this one.



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Thank y'all so much for your replies, I can't tell you how much they mean to me.


Tootie's doctor is a Christian. In fact, they have a sign in their office that states as Christian Physicians they pray and at your request, they will pray with you. So, I asked her doctor to pray with us and he did.


I believe in my heart, the Lord will lead us in the right direction. There was an initial mix-up at the Neurologist's office so, our paperwork was delayed; thus the reason for this follow-up. Had there not been a mix-up, Tootie would already be on this drug.


Perhaps He is already guiding us.

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