Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Best of luck. My son started the diet at Hopkins at age 17 months, he was having about 40 myoclonics on a bad day (but lots of grand mals too). His myoclonics went away day #2 in the hospital while we were initiating. There is hope. Dr. Bergin is very nice and professional and was trained at Hopkins. We also use Children's in Boston, Duffy is our primary. We are followed by him and also by Thiele at MGH, she used to run the keto center at CH. Holler to me or the list if you need support. Barb Swoyer, Jake's mom, Boston Update on our visit First off, I want to apologize for not responding to any of your fabulous advice. For some reason, I have an awful time accessing this site. On several computers, I often get a message saying the site isn't available. Anyway, , Laurie, , Debbie, Tina, , Bill, Satnam, Cammie, and Barb: I've been in tears reading your stories of inspiration. I'm afraid to hope for ; all we've ever encountered in his short life is leading us to feel so hopeless. To even begin to think that there may be something otherwise for us is unimaginable. As I mentioned, had his Keto consult last week, and I was concerned about him being too poor an eater to start the diet. To answer some questions some of you asked: Our consult was done at Boston's Children's Hospital under the supervision of Dr. Ann Bergin. We talked about 's weight issues, and, though he's dropped from the 25th percentile to the 15thish in two months, they think he's a good candidate for the diet. BTW, his height jumped from the 75th to the 95th, which they say show he's eating enough to maintain growth. We're currently weaning the Topomax (He's currently on Topomax, Zonegran, Klonipin, Keppra, and B-6), but haven't discussed weaning from anything else. A couple of months ago, we started to wean from the Klonipin, and although the docs say it was too soon to start seeing these effects from it, I was positive his tone improved. He was holding his head better and sitting with support. After two days, though, the seizures worsened, and they had me go back up. Urgh! I hate that med, and if it wasn't too soon to start seeing his seizures get worse, how was it too soon to start seeing some positive effects? Doctors! Anyway, Dr. Bergin has scheduled us to go inpatient in March. I'm anxious to start it, but so afraid it won't work. As I mentioned, I'm afraid to be hopefull for anything, as nothing has helped my poor to date. They're starting him on the keto formula, and want to add solids, too. They want to get speech therapy to help him take solids better. I'll keep everyone posted on what happens with us. (Hoping I can access the site more often.) Thanks again so much for being so inspiring. Love to you and all your kiddos. Meredith Mom to , 13 mos today, 150+ myoclonic seizures/day of unknown origin " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2004 Report Share Posted February 12, 2004 Best of luck. My son started the diet at Hopkins at age 17 months, he was having about 40 myoclonics on a bad day (but lots of grand mals too). His myoclonics went away day #2 in the hospital while we were initiating. There is hope. Dr. Bergin is very nice and professional and was trained at Hopkins. We also use Children's in Boston, Duffy is our primary. We are followed by him and also by Thiele at MGH, she used to run the keto center at CH. Holler to me or the list if you need support. Barb Swoyer, Jake's mom, Boston Update on our visit First off, I want to apologize for not responding to any of your fabulous advice. For some reason, I have an awful time accessing this site. On several computers, I often get a message saying the site isn't available. Anyway, , Laurie, , Debbie, Tina, , Bill, Satnam, Cammie, and Barb: I've been in tears reading your stories of inspiration. I'm afraid to hope for ; all we've ever encountered in his short life is leading us to feel so hopeless. To even begin to think that there may be something otherwise for us is unimaginable. As I mentioned, had his Keto consult last week, and I was concerned about him being too poor an eater to start the diet. To answer some questions some of you asked: Our consult was done at Boston's Children's Hospital under the supervision of Dr. Ann Bergin. We talked about 's weight issues, and, though he's dropped from the 25th percentile to the 15thish in two months, they think he's a good candidate for the diet. BTW, his height jumped from the 75th to the 95th, which they say show he's eating enough to maintain growth. We're currently weaning the Topomax (He's currently on Topomax, Zonegran, Klonipin, Keppra, and B-6), but haven't discussed weaning from anything else. A couple of months ago, we started to wean from the Klonipin, and although the docs say it was too soon to start seeing these effects from it, I was positive his tone improved. He was holding his head better and sitting with support. After two days, though, the seizures worsened, and they had me go back up. Urgh! I hate that med, and if it wasn't too soon to start seeing his seizures get worse, how was it too soon to start seeing some positive effects? Doctors! Anyway, Dr. Bergin has scheduled us to go inpatient in March. I'm anxious to start it, but so afraid it won't work. As I mentioned, I'm afraid to be hopefull for anything, as nothing has helped my poor to date. They're starting him on the keto formula, and want to add solids, too. They want to get speech therapy to help him take solids better. I'll keep everyone posted on what happens with us. (Hoping I can access the site more often.) Thanks again so much for being so inspiring. Love to you and all your kiddos. Meredith Mom to , 13 mos today, 150+ myoclonic seizures/day of unknown origin " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 Hi Barbara, We saw Dr. Duffy while inpatient in October. He's a great guy. Love how he always says " we " when referring to the kids. " We're looking very spiffy today. " " Give us a chance to show improvement from the new med. " etc. :-) Drs. Volpe and Bassan in neuro are Nate's primaries. They're both good, but Dr. Volpe seems so negative all the time. I dunno. Maybe he's right, but we have to have hope. Thanks for responding. Meredith Update on our visit First off, I want to apologize for not responding to any of your fabulous advice. For some reason, I have an awful time accessing this site. On several computers, I often get a message saying the site isn't available. Anyway, , Laurie, , Debbie, Tina, , Bill, Satnam, Cammie, and Barb: I've been in tears reading your stories of inspiration. I'm afraid to hope for ; all we've ever encountered in his short life is leading us to feel so hopeless. To even begin to think that there may be something otherwise for us is unimaginable. As I mentioned, had his Keto consult last week, and I was concerned about him being too poor an eater to start the diet. To answer some questions some of you asked: Our consult was done at Boston's Children's Hospital under the supervision of Dr. Ann Bergin. We talked about 's weight issues, and, though he's dropped from the 25th percentile to the 15thish in two months, they think he's a good candidate for the diet. BTW, his height jumped from the 75th to the 95th, which they say show he's eating enough to maintain growth. We're currently weaning the Topomax (He's currently on Topomax, Zonegran, Klonipin, Keppra, and B-6), but haven't discussed weaning from anything else. A couple of months ago, we started to wean from the Klonipin, and although the docs say it was too soon to start seeing these effects from it, I was positive his tone improved. He was holding his head better and sitting with support. After two days, though, the seizures worsened, and they had me go back up. Urgh! I hate that med, and if it wasn't too soon to start seeing his seizures get worse, how was it too soon to start seeing some positive effects? Doctors! Anyway, Dr. Bergin has scheduled us to go inpatient in March. I'm anxious to start it, but so afraid it won't work. As I mentioned, I'm afraid to be hopefull for anything, as nothing has helped my poor to date. They're starting him on the keto formula, and want to add solids, too. They want to get speech therapy to help him take solids better. I'll keep everyone posted on what happens with us. (Hoping I can access the site more often.) Thanks again so much for being so inspiring. Love to you and all your kiddos. Meredith Mom to , 13 mos today, 150+ myoclonic seizures/day of unknown origin " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 Hi Meridith...I just wanted to respond to your post because we also see Dr. Ann Bergin at Childrens in Boston and we are starting the diet THIS TUESDAY (Feb 17th)! Im very anxious to get started and I am preparing and getting things all ready to go....too bad youre not going to be there next week to start because I know they book a few kids at a time and the parents get to meet and discuss what we are going through etc....it would be great to actually meet someone from this list. Well, best of luck to you and next month maybe you and I will be able to help each other out.........take care.......Tammy (Austins Mom) Quote Link to comment Share on other sites More sharing options...
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