Guest guest Posted June 26, 2000 Report Share Posted June 26, 2000 Joanne - do all kids with BPP, have the 50 percent chance to living to 10 ??? They didn't say anything to me about that... Crys's 2nd Neuro was the same way. She was basically astounded by everything that Crys was doing. I know that Crys's MRI is pitiful, but she's doing alot... I would take the BPP diagnosis as a step up. Keep working with Benji & keep us updated on his progress. You know that you, Benji & your family are always in our prayers. With lotsa luv to all, hugs & kisses to your little man, & Crystal Aquielle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2000 Report Share Posted June 26, 2000 << Joanne - do all kids with BPP, have the 50 percent chance to living to 10 ??? >> I don't think I would make that assumption. has spactic quad cp so maybe that has something to do with it. I think that lack of mobility is a big factor. I didn't question the statistic because I'm not focusing on it. Hope things by you improve soon. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2000 Report Share Posted June 27, 2000 Joanne - I called my neuro & asked him today, so I'm waiting for an answer. It's good that you're not focusing on that. Your little Benji is such a cutie. Are you going to Lenny & 's get together ??? I'm hoping that we can pull it off. I'd love to meet you. It's great that little is doing so well.... It's interesting to see where she's at, since Crys & her are 2 weeks apart. You & your family are always in my thoughts & prayers. Miss Crys sends Benji great big hugs & kisses... Lotsa luv, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2000 Report Share Posted June 27, 2000 I'll definately be at the Staten Island get together! I can't wait to meet everyone. Talk to you soon. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2000 Report Share Posted June 27, 2000 -----Original Message----- >Prognosis wise he doesn't think he'll walk, talk, use his >hands...nothing I haven't already heard. 5 - 10% chance of reoccurrence if >we have more kids. 50% chance he'll live to 10 years... It is interesting to see here that a doctor has taken a stab at life expectancy. Has anyone else had an estimate for their child's life expectancy? Our doctors wont even begin to answer this question. Part of me would like an answer but a bigger part of me doesn't. I can understand why they dont want to go there, but in some ways it would be good to know roughly what to expect. Whatever happens we will always treasure each day she has with us. >We discussed meds because of course he is having seizures again and the >vigabatrin isn't working. He suggested that we stop vigabatrin, try topomax, >and if that doesn't work go to depekote. I guess we'll take his advise. Joanne, has the ketogenic diet been considered? It night be worth a try if none of the meds work well enough. Hannah started it last week and I cant see any huge changes yet, but we need to be patient. Topamax worked the best of all the meds Hannah has tried, and it worked even better with lamotrigine. Unfortunately even this did not control her for longer than a few months so we are trying the diet. I hope a solution is found soon for 's seizures. Best wishes in Melbourne, Australia (mum to Hannah, 3yo; polymicrogyria, uncontrolled complex partial epilepsy, spastic quad.cp, cortical vision impairment, global dev. delays, bard button and a brilliant smile) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2000 Report Share Posted June 28, 2000 Joanne - way cool !!!! This is going to be GREAT !!!! I hope that the topamax works out for Benji. I'm looking forward to meeting you all... Lotsa luv to all, Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2000 Report Share Posted June 28, 2000 , We haven't talked seriously about " the diet " because our neuro made us feel that it was last resort. Funny, Dobyns didn't even mention it. The life expectancy thing didn't surprise me because I think it has more to do with how Dobyns is assuming will need a g-tube and will have problems with aspiration in the future. His stats for g-tube kids are that 50% will survive in a 10 year time span. That's where I think he's coming from. Joanne Quote Link to comment Share on other sites More sharing options...
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