Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi Laurie- So good to hear from you - I actually was going to type a message to you today b/c I've been thinking of Logan - wondering how he is doing these days. It's been a couple of wks. since we've touched base. At any rate, we live in Steuben county - close to Elmira. I've actually never heard of Ulster county - where is it? We go to Columbia Presbyterian in NYC and our neuro. is Dr. Gail Soloman. We initiated the diet at Blythedale Children's Hosp. there in NYC as well. Dr. Soloman also sees patients thru Blythedale and we could get in faster there than at Columbia Pres. The reason we were THINKING of switching to Strong Hosp. is that it is only 1.5 hours away. NYC is 4.5 hours but we typically fly in and out for the day. My dietician quit at Blythedale and we are in the process of getting a new one. If she isn't like the best ever - I'm thinking of switching only b/c it would be a lot more convenient for us. So, Logan and are almost exactly the same height/weight. I'm thinking it is interesting that 's calories are so much higher (980). My husband and I have been talking about the possible need to reduce calories now that he is med free but of course, we don't have a dietican until May 5. UGH...!! I guess I didn't realize that Logan was med free - DUH! How long has this been? Have you, too, been noticing progress w/his development? How is his seizure control these days? is doing overall GREAT! Since he's been med free, he had one seizure when he had a stomache flu so I chalked that up to feeling bad but then he had one yesterday morning and I thought he was over his bug so I'm not sure where that came from (he also fell down a short flight of stairs the night before - I know bad mom for not watching!) so he may have had a head ache from that. That's why I was wondering about reducing calories. But, we have definitely seen overall improvement and just to have those myoclonic jerks gone is just wonderful! Words can't express how thankful I am to " apparently " have them gone - just have to watch my words, tho, it hasn't even been two wks. yet - he's had good wks. before only to have those darn things return w/a vengeance. So, just more curious - what are Logan's other stats- what ratio - how much protein,carbs,fat? As you probably read, is 3:1ratio, 4.8g protein, 23.7g fat, and 3.2g.carbs. (per meal). Have you tweaked the calories/ratio any at all to get better control? Now you have me really thinking of making changes to his calories even before we meet w/the dietician. Hmmmm.... (mom to ) -- In ketogenic , " peteymedic1 " <peteymedic@h...> wrote: > , > Hi. I just read your posting to another mom and that your neuro is in > NYC. Logan's is, was too. If I may ask where did you initiate the > diet? If you were to go to another dietitian, why would it be Strong? > isn't that far? It is 6 hours from my house. I live in Ulster county, > NY. I think you may be close. We also weaned meds that we believed > were making Logan worse and it is true. He is already better without > the meds. Logan is 34 1/2 inches, 30 lbs, 27 months old and 830 > calorie with a protein slant. > Laurie mom to Logan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi Laurie- So good to hear from you - I actually was going to type a message to you today b/c I've been thinking of Logan - wondering how he is doing these days. It's been a couple of wks. since we've touched base. At any rate, we live in Steuben county - close to Elmira. I've actually never heard of Ulster county - where is it? We go to Columbia Presbyterian in NYC and our neuro. is Dr. Gail Soloman. We initiated the diet at Blythedale Children's Hosp. there in NYC as well. Dr. Soloman also sees patients thru Blythedale and we could get in faster there than at Columbia Pres. The reason we were THINKING of switching to Strong Hosp. is that it is only 1.5 hours away. NYC is 4.5 hours but we typically fly in and out for the day. My dietician quit at Blythedale and we are in the process of getting a new one. If she isn't like the best ever - I'm thinking of switching only b/c it would be a lot more convenient for us. So, Logan and are almost exactly the same height/weight. I'm thinking it is interesting that 's calories are so much higher (980). My husband and I have been talking about the possible need to reduce calories now that he is med free but of course, we don't have a dietican until May 5. UGH...!! I guess I didn't realize that Logan was med free - DUH! How long has this been? Have you, too, been noticing progress w/his development? How is his seizure control these days? is doing overall GREAT! Since he's been med free, he had one seizure when he had a stomache flu so I chalked that up to feeling bad but then he had one yesterday morning and I thought he was over his bug so I'm not sure where that came from (he also fell down a short flight of stairs the night before - I know bad mom for not watching!) so he may have had a head ache from that. That's why I was wondering about reducing calories. But, we have definitely seen overall improvement and just to have those myoclonic jerks gone is just wonderful! Words can't express how thankful I am to " apparently " have them gone - just have to watch my words, tho, it hasn't even been two wks. yet - he's had good wks. before only to have those darn things return w/a vengeance. So, just more curious - what are Logan's other stats- what ratio - how much protein,carbs,fat? As you probably read, is 3:1ratio, 4.8g protein, 23.7g fat, and 3.2g.carbs. (per meal). Have you tweaked the calories/ratio any at all to get better control? Now you have me really thinking of making changes to his calories even before we meet w/the dietician. Hmmmm.... (mom to ) -- In ketogenic , " peteymedic1 " <peteymedic@h...> wrote: > , > Hi. I just read your posting to another mom and that your neuro is in > NYC. Logan's is, was too. If I may ask where did you initiate the > diet? If you were to go to another dietitian, why would it be Strong? > isn't that far? It is 6 hours from my house. I live in Ulster county, > NY. I think you may be close. We also weaned meds that we believed > were making Logan worse and it is true. He is already better without > the meds. Logan is 34 1/2 inches, 30 lbs, 27 months old and 830 > calorie with a protein slant. > Laurie mom to Logan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi Laurie- So good to hear from you - I actually was going to type a message to you today b/c I've been thinking of Logan - wondering how he is doing these days. It's been a couple of wks. since we've touched base. At any rate, we live in Steuben county - close to Elmira. I've actually never heard of Ulster county - where is it? We go to Columbia Presbyterian in NYC and our neuro. is Dr. Gail Soloman. We initiated the diet at Blythedale Children's Hosp. there in NYC as well. Dr. Soloman also sees patients thru Blythedale and we could get in faster there than at Columbia Pres. The reason we were THINKING of switching to Strong Hosp. is that it is only 1.5 hours away. NYC is 4.5 hours but we typically fly in and out for the day. My dietician quit at Blythedale and we are in the process of getting a new one. If she isn't like the best ever - I'm thinking of switching only b/c it would be a lot more convenient for us. So, Logan and are almost exactly the same height/weight. I'm thinking it is interesting that 's calories are so much higher (980). My husband and I have been talking about the possible need to reduce calories now that he is med free but of course, we don't have a dietican until May 5. UGH...!! I guess I didn't realize that Logan was med free - DUH! How long has this been? Have you, too, been noticing progress w/his development? How is his seizure control these days? is doing overall GREAT! Since he's been med free, he had one seizure when he had a stomache flu so I chalked that up to feeling bad but then he had one yesterday morning and I thought he was over his bug so I'm not sure where that came from (he also fell down a short flight of stairs the night before - I know bad mom for not watching!) so he may have had a head ache from that. That's why I was wondering about reducing calories. But, we have definitely seen overall improvement and just to have those myoclonic jerks gone is just wonderful! Words can't express how thankful I am to " apparently " have them gone - just have to watch my words, tho, it hasn't even been two wks. yet - he's had good wks. before only to have those darn things return w/a vengeance. So, just more curious - what are Logan's other stats- what ratio - how much protein,carbs,fat? As you probably read, is 3:1ratio, 4.8g protein, 23.7g fat, and 3.2g.carbs. (per meal). Have you tweaked the calories/ratio any at all to get better control? Now you have me really thinking of making changes to his calories even before we meet w/the dietician. Hmmmm.... (mom to ) -- In ketogenic , " peteymedic1 " <peteymedic@h...> wrote: > , > Hi. I just read your posting to another mom and that your neuro is in > NYC. Logan's is, was too. If I may ask where did you initiate the > diet? If you were to go to another dietitian, why would it be Strong? > isn't that far? It is 6 hours from my house. I live in Ulster county, > NY. I think you may be close. We also weaned meds that we believed > were making Logan worse and it is true. He is already better without > the meds. Logan is 34 1/2 inches, 30 lbs, 27 months old and 830 > calorie with a protein slant. > Laurie mom to Logan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 , Hi...Don't make any changes because you are reading what we are doing. We have been on our own for a long time. I mean no dietitian. We started with another but not so good either. Logan had a very big set back with the seizures in Dec-Feb. He wasn't able to move very much and phenobarb really slowed his metabolism. So that is why he was on reduced calories. He was even lower at one point. When he became more active, we slowly added calories. (50 per day.) He is on 4.2 : 1, 770 calories broken down to 6 small meals. Maybe he would be ok on 3:1. Does stay in ketosis ok? Logan seems to go down just before a meal is due. He has made progress and went 6 days without seizures but had a few for a few days. He made incredible progress when he was seizure free. He has been off meds exactly 4 weeks. It takes a while to get out of the system and some may store in muscle and fat. Anyway he needs a good and caring dietitian. That is why I asked about Strong. We would travel anywhere. By the way ulster county in just south of Albany and 1 1/2 hours north of NYC. We started at NYU Medical center. Laurie > > , > > Hi. I just read your posting to another mom and that your neuro is in > > NYC. Logan's is, was too. If I may ask where did you initiate the > > diet? If you were to go to another dietitian, why would it be Strong? > > isn't that far? It is 6 hours from my house. I live in Ulster county, > > NY. I think you may be close. We also weaned meds that we believed > > were making Logan worse and it is true. He is already better without > > the meds. Logan is 34 1/2 inches, 30 lbs, 27 months old and 830 > > calorie with a protein slant. > > Laurie mom to Logan Quote Link to comment Share on other sites More sharing options...
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