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Starting to feel at home...
Jtlt I imagine your decision has already been made but I simply wanted to share my story. I care for my nephew who is now 3 and he was diagnosed with epileptic disorder when he was 2. He had his first and only seizure at the zoo, of course when he was alone with me and my son at the other end of the park. In order to ensure his safety and make me comfortable with ongoing care I drilled his parents with questions before and after every medical appointment in order to get as much information possible.
He also has a medication for his bum should he start a seizure and is taking oral meds twice a day. It does not prevent us from doing anything, I simply bring the emergency med and my cell phone with me at all times. Luckily in my case, as the aunt, i was able to attend the doctor meetings and the professionals clearly noted that he has to be treated like every other child and that he could not be held back in fear of a potential seizure. It was really hard for the first little bit, I watched him like a hawk... but (cross my fingers) nothing else has happened.
It would be a very different situation if the parents appeared to not have provided very important information about his seizures and if he is not being followed.
Good luck with your decision and meeting with the parents
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 Originally Posted by Naftafia
Jtlt I imagine your decision has already been made but I simply wanted to share my story. I care for my nephew who is now 3 and he was diagnosed with epileptic disorder when he was 2. He had his first and only seizure at the zoo, of course when he was alone with me and my son at the other end of the park. In order to ensure his safety and make me comfortable with ongoing care I drilled his parents with questions before and after every medical appointment in order to get as much information possible.
He also has a medication for his bum should he start a seizure and is taking oral meds twice a day. It does not prevent us from doing anything, I simply bring the emergency med and my cell phone with me at all times. Luckily in my case, as the aunt, i was able to attend the doctor meetings and the professionals clearly noted that he has to be treated like every other child and that he could not be held back in fear of a potential seizure. It was really hard for the first little bit, I watched him like a hawk... but (cross my fingers) nothing else has happened.
It would be a very different situation if the parents appeared to not have provided very important information about his seizures and if he is not being followed.
Good luck with your decision and meeting with the parents
Naftafia your a great aunt, to be able to go to the doctors appointment and be their for the little guy. I don't want to sound mean or selfish, if it was any of nieces or nephews i would do what you have done as well. It's not my responsiblity to push the parents to get their son help and find answers. But it is a hard decision to let him go, he is a great little guy. Plus i am 11 weeks pregnant and I cannot handle another febrile seizure during this pregnancy.
The parents disclosed vital information to me, and I feel that the trust is gone. If I wasn't prepared or knew what I was doing I could have lost the little guy. The parents are doing stuff now to get answers and going to sick kids hospital to figure out what is really wrong with him, the mother said that the doctors think he could have epilepsy.
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