The best news Ever!!!

Alison - posted on 11/22/2010 ( 11 moms have responded )

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Just got back from my daughter's Paediatrician and I feel like screaming from the roof tops - they reckon she has outgrown her Epilepsy. We were told when she was little it may be a chance but as we had just watched her being resuscitated it seemed a pipe dream!! But 6 years down the line, 3 of them seizure free they have said that they reckon she has. I will always be nervous she has another but hearing someone say those words and actually having the faith now that it is true has just made today the best day ever!!

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Lisa - posted on 12/01/2010

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Congrats on the great news! I'm new here and curious about your daughter having to be resuscitated. My daughter has come very close to total heart failure during a seizure (I think she flat lined once at home but can't be sure) and I've been having trouble finding others with the same symptoms. But congrats again!

Lisa - posted on 12/01/2010

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I can completely relate to your frustration with you doctors not listening to you or trying to go any further than they need to. After two years of running the circuit of doctors I finally was able to get my daughter in to see an epilepsy specialist at Children's Hospital Boston. He was more interested in listening to our story than he was in her chart. He spoke directly to my daughter and really was able to draw out more information than I was. He has completely thrown out her diagnosis and and getting other doctors involved. I don't know where you live but I would try and find an epilepsy center or specialist. I know easier said than done. We live in the country and had to go to Boston to find the right doctor but it was well worth it. Good luck and don't give up - the answers are out there!

Rebecca - posted on 11/30/2010

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Congrats!!!!! I am very happy to hear that your daughter is on the mend. NOW!!! If someone could plz direct me to a neurologist that actually listens to the parent when she is telling them that there is something more going on then just seizures that would be awesome!!! Sorry....just that I can't seem to find a Dr who will take me seriously and listen to what I am telling them. I know that she has seizures, but I'm not sure if they are really undercontrol. Each year, or should I say each day, that passes I can tell she is struggling more and more every day life and school. So far they have decided that she is MR and that there isn't anything that can be done for her. But no one will even look further to determine if that is the case, or if she is still having seizures, or possibly braindamage that just might be correctable.. I think it is because she is a medicaid patient and noone wants to deal with it. Can you tell how frustrated and angry I am. My child needs help and I can't find it for her!!! I feel like a rotten parent here, I can't fix my baby and I can't find anyone who can...Any ideas?

Miranda - posted on 11/30/2010

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I think I speak for alot of other mothers on this site when I tell you how great it is to hear positve news.....it seems like I tend to gravitate towards the negative posts and I get more and more frustated and sad thinking that my child has to deal with this and I forget to be thankful for all that we have and appreciate that there is always a positve side to things.

Torey - posted on 11/22/2010

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YES!! That is such good news!! It gives me hope for my daughter. Thank you for posting.

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