Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 This has been Stella's worst summer yet for seizures. The only benefit has been dropping the diazepam. She has had one day of seizure freedom this week (Thursday) only to have them return yesterday. I wrote an email to her doctor saying how disappointed I was with the response from his office and lack there of, how frustrating it is when Stella is having status or clustering 50+ seizures a day and no one will return our calls. I did get an email back saying they are short staffed and one of the nurse practitioners has been gone for weeks. Why is it, the more fragile our children are the more challenging it is to speak to someone. Children's hospital here in Seattle WA is an educational hospital so that too was explained to me that their time is split between patients and students. I've been told the VNS may be of little benefit to her and that the only drug left to try is Felbatol, does anyone have any stories regarding this drug? It has a black label attached to it as it can cause aplastic anemia and liver failure. I guess this has been an emotional morning for me and needed a little guidance from you all out there. Stella has been having early am t/c's in her sleep with a few jerks intermittently. The diet is not working as we had hoped, we are going to continue for another 2 months to reach our 6 month mark and then reassess. Her labs will be done on Monday so I will get a breakdown of what is going on in that department. At her 4-1 ratio she has never had high blood ketones and yet shows symptoms of high acidosis at times. The rocky of road of this diet is challenging enough but to add the lack of support coming from the Neuro office just makes things worse. She is bruising a lot too, with the VNS surgery around the corner they need to take a look at her platelets and we need to have a hematology consult too. Sorry this was a bit of a whine... -- http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 Went and read what you wrote about at the Epilepsy site, beautiful pictures, beautiful kids. Exactly what diet changes have you tried, can you list them? Also her stats, height, weight, calories, protien, calories? Maybe something will click with someone. , 's mom and Stansfield-lyons wrote: > This has been Stella's worst summer yet for seizures. The only > benefit has > been dropping the diazepam. She has had one day of seizure freedom > this > week (Thursday) only to have them return yesterday. I wrote an email > to her > doctor saying how disappointed I was with the response from his office > and > lack there of, how frustrating it is when Stella is having status or > clustering 50+ seizures a day and no one will return our calls. I did > get > an email back saying they are short staffed and one of the nurse > practitioners has been gone for weeks. Why is it, the more fragile > our > children are the more challenging it is to speak to someone. > Children's > hospital here in Seattle WA is an educational hospital so that too was > > explained to me that their time is split between patients and > students. > I've been told the VNS may be of little benefit to her and that the > only > drug left to try is Felbatol, does anyone have any stories regarding > this > drug? It has a black label attached to it as it can cause aplastic > anemia > and liver failure. > I guess this has been an emotional morning for me and needed a little > guidance from you all out there. Stella has been having early am > t/c's in > her sleep with a few jerks intermittently. The diet is not working as > we > had hoped, we are going to continue for another 2 months to reach our > 6 > month mark and then reassess. Her labs will be done on Monday so I > will get > a breakdown of what is going on in that department. At her 4-1 ratio > she > has never had high blood ketones and yet shows symptoms of high > acidosis at > times. The rocky of road of this diet is challenging enough but to > add the > lack of support coming from the Neuro office just makes things worse. > She > is bruising a lot too, with the VNS surgery around the corner they > need to > take a look at her platelets and we need to have a hematology consult > too. > Sorry this was a bit of a whine... > > > -- > > http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143 > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2004 Report Share Posted September 4, 2004 , I'm sorry your having a tough time. I think we've all been there. No need to apologize for a little whine. We all need to do that just to stay sane. My 2 year old daughter is on Felbatol. The only side effect we've seen is lack of appetite. We drop an NG tube a lot to finish her keto formula. We noticed a drop in myoclonic and head drops. God Bless, Jim ________________________________ From: and Stansfield-lyons Sent: Sat 9/4/2004 1:35 PM To: ketogenic Subject: a little upset This has been Stella's worst summer yet for seizures. The only benefit has been dropping the diazepam. She has had one day of seizure freedom this week (Thursday) only to have them return yesterday. I wrote an email to her doctor saying how disappointed I was with the response from his office and lack there of, how frustrating it is when Stella is having status or clustering 50+ seizures a day and no one will return our calls. I did get an email back saying they are short staffed and one of the nurse practitioners has been gone for weeks. Why is it, the more fragile our children are the more challenging it is to speak to someone. Children's hospital here in Seattle WA is an educational hospital so that too was explained to me that their time is split between patients and students. I've been told the VNS may be of little benefit to her and that the only drug left to try is Felbatol, does anyone have any stories regarding this drug? It has a black label attached to it as it can cause aplastic anemia and liver failure. I guess this has been an emotional morning for me and needed a little guidance from you all out there. Stella has been having early am t/c's in her sleep with a few jerks intermittently. The diet is not working as we had hoped, we are going to continue for another 2 months to reach our 6 month mark and then reassess. Her labs will be done on Monday so I will get a breakdown of what is going on in that department. At her 4-1 ratio she has never had high blood ketones and yet shows symptoms of high acidosis at times. The rocky of road of this diet is challenging enough but to add the lack of support coming from the Neuro office just makes things worse. She is bruising a lot too, with the VNS surgery around the corner they need to take a look at her platelets and we need to have a hematology consult too. Sorry this was a bit of a whine... -- http://www.epilepsyfoundation.org/ecommunities/heroes/index.cfm?user_id=143 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Hi My daughter Casey has been on Felbatol for about four years. This drug was a God send for us because Caseys seizures lasted up to 6 1/2 hrs before this drug was started. It was a very scary time but some how it made them stay short we have not had any side effects from Felbatol you will probably have to sign a form from the FDA to start Felbatol as I did. Do not give this med if your child is over 14 or 15 because it has been shown to cause brain bleeds and liver failure in adults and older children. I hope this helps you if you have any more questions just ask also Casey jsut had a corpus calusodamy in Houston and it has seemed to help alot. THanks Carol Caseys mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Hi My daughter Casey has been on Felbatol for about four years. This drug was a God send for us because Caseys seizures lasted up to 6 1/2 hrs before this drug was started. It was a very scary time but some how it made them stay short we have not had any side effects from Felbatol you will probably have to sign a form from the FDA to start Felbatol as I did. Do not give this med if your child is over 14 or 15 because it has been shown to cause brain bleeds and liver failure in adults and older children. I hope this helps you if you have any more questions just ask also Casey jsut had a corpus calusodamy in Houston and it has seemed to help alot. THanks Carol Caseys mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2004 Report Share Posted September 5, 2004 Hi My daughter Casey has been on Felbatol for about four years. This drug was a God send for us because Caseys seizures lasted up to 6 1/2 hrs before this drug was started. It was a very scary time but some how it made them stay short we have not had any side effects from Felbatol you will probably have to sign a form from the FDA to start Felbatol as I did. Do not give this med if your child is over 14 or 15 because it has been shown to cause brain bleeds and liver failure in adults and older children. I hope this helps you if you have any more questions just ask also Casey jsut had a corpus calusodamy in Houston and it has seemed to help alot. THanks Carol Caseys mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 I think that bruising can be caused as a side effect of medications or from a lack of vitamins and minerals while on the diet. I am pretty certain that it has been reported here from time to time. If you aren't getting high blood ketones at a 4:1 ratio, you may need to increase or decrease calories to get them at the correct level. You may need to have a late night snack to counter the am seizures, not sure about that though. It will take some experimenting. Bill and Stansfield-lyons wrote: > This has been Stella's worst summer yet for seizures. The only benefit has > been dropping the diazepam. She has had one day of seizure freedom this > week (Thursday) only to have them return yesterday. I wrote an email to her > doctor saying how disappointed I was with the response from his office and > lack there of, how frustrating it is when Stella is having status or > clustering 50+ seizures a day and no one will return our calls. I did get > an email back saying they are short staffed and one of the nurse > practitioners has been gone for weeks. Why is it, the more fragile our > children are the more challenging it is to speak to someone. Children's > hospital here in Seattle WA is an educational hospital so that too was > explained to me that their time is split between patients and students. > I've been told the VNS may be of little benefit to her and that the only > drug left to try is Felbatol, does anyone have any stories regarding this > drug? It has a black label attached to it as it can cause aplastic anemia > and liver failure. > I guess this has been an emotional morning for me and needed a little > guidance from you all out there. Stella has been having early am t/c's in > her sleep with a few jerks intermittently. The diet is not working as we > had hoped, we are going to continue for another 2 months to reach our 6 > month mark and then reassess. Her labs will be done on Monday so I will get > a breakdown of what is going on in that department. At her 4-1 ratio she > has never had high blood ketones and yet shows symptoms of high acidosis at > times. The rocky of road of this diet is challenging enough but to add the > lack of support coming from the Neuro office just makes things worse. She > is bruising a lot too, with the VNS surgery around the corner they need to > take a look at her platelets and we need to have a hematology consult too. > Sorry this was a bit of a whine... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2004 Report Share Posted September 7, 2004 and , Bruising can be a lack of vitamon K. My grandson is having that a little too. Hallie Re: a little upset I think that bruising can be caused as a side effect of medications or from a lack of vitamins and minerals while on the diet. I am pretty certain that it has been reported here from time to time. If you aren't getting high blood ketones at a 4:1 ratio, you may need to increase or decrease calories to get them at the correct level. You may need to have a late night snack to counter the am seizures, not sure about that though. It will take some experimenting. Bill and Stansfield-lyons wrote: > This has been Stella's worst summer yet for seizures. The only benefit has > been dropping the diazepam. She has had one day of seizure freedom this > week (Thursday) only to have them return yesterday. I wrote an email to her > doctor saying how disappointed I was with the response from his office and > lack there of, how frustrating it is when Stella is having status or > clustering 50+ seizures a day and no one will return our calls. I did get > an email back saying they are short staffed and one of the nurse > practitioners has been gone for weeks. Why is it, the more fragile our > children are the more challenging it is to speak to someone. Children's > hospital here in Seattle WA is an educational hospital so that too was > explained to me that their time is split between patients and students. > I've been told the VNS may be of little benefit to her and that the only > drug left to try is Felbatol, does anyone have any stories regarding this > drug? It has a black label attached to it as it can cause aplastic anemia > and liver failure. > I guess this has been an emotional morning for me and needed a little > guidance from you all out there. Stella has been having early am t/c's in > her sleep with a few jerks intermittently. The diet is not working as we > had hoped, we are going to continue for another 2 months to reach our 6 > month mark and then reassess. Her labs will be done on Monday so I will get > a breakdown of what is going on in that department. At her 4-1 ratio she > has never had high blood ketones and yet shows symptoms of high acidosis at > times. The rocky of road of this diet is challenging enough but to add the > lack of support coming from the Neuro office just makes things worse. She > is bruising a lot too, with the VNS surgery around the corner they need to > take a look at her platelets and we need to have a hematology consult too. > Sorry this was a bit of a whine... Quote Link to comment Share on other sites More sharing options...
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