Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 I am so sorry that Stella is having such a tough time. I do think that 3 months is too soon to give up, especially with meds on board. If Stella is vomiting that much and refusing to eat, I would request that you have a renal blood test done to check her bicarb levels. She may be experiencing metabolic acidosis, which happens often on keto. If her bicarbs are seriously low, it can be dangerous. It also causes seizures to go through the roof, which may be a clue that it could be what is going on with you. There are easy treatments to get bicarbs up to a safe level, although sometimes it will require a lower ratio. Sorry to sound like the expert on this, but I practically am, as Langan has been hospitalized three times with bicarbs that bottomed out. Her seizures went through the roof, she started vomiting more and screaming when we tried to feed her. Unfortunately for us, we are one of those rare cases of acidosis that is having a hard time being controlled on keto, the docs think because for us it is a pre-existing condition, so we are slowly weaning down. Since addressing the acidosis, though, we have our happy daughter back, the vomiting has decreased significantly and now instead of screaming at meal time she is smiling and grabbing her spoon. And the seizures were noticeably better as well. So you may want to look into this. Just my two cents.... , mom to Langan, 2 yrs old and keto kid since 11/03; med free since 4/2/04, weaning off keto due to metabolic acidosis problems. = ( > > sorry guys, this is going to be a long one, i need to gripe. > > Yesterday was a tough day for Stella had to work so hubby was with her, she refused to eat, which she has been doing for quite some time now, but when she did eat she would throw it up. Her seizures were still continuing, and she was unresponsive for most of the day, her sister was the only one who could manage to get any food in her. She would eat one or two bites then up it would come. So, when I got home I called the dietician and we agreed that maybe w/ the MCTon board she might be too ketotic, since I don't have my blood keytone machine yet, i was unable to check, so she suggested i give her some OJ, then lower her ratio to a 3.75-1 still using the 8g of mct per meal. she did eat dinner, and continued to gag, but nothing came up thank goodness. > I am so frustrated with our team here in seattle, the dietician is supportative though has no more suggestions, she is just too inexperienced. The Nurse practicioner whom we contact to get info from has not responded to my calls, he was supposed to set up her VNS apt, and no response. I did email her epi last night, so i am eagerly awaiting a response from someone soon. > So a couple questions. Now that the diazepam is gone, how long did it take those of you out there to notice a change with the diet. I am scared her body needs the benzo to help control the seizures, but then looking back they didnt' do anything at all. I did ask her epi to give me a schedule to wean her off all meds, and just try the diet by itself. We are pros now with the diastat, so if need be we can give her that. What to do. > I know most of you have noticed improvement in a short period of time, but is 3 months too soon to tell? > There is definitly something neurologicaly going on though because her hands are curling and always lifted up rather than by her side. Her drops yesterday were face forward rather than backwards, so yet again her seizures have shifted. AAAHHH-- Well i 'd best get some work done, i'm on location shooting today for Microsoft, so i'm using their computer. > Stansfield > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 I am so sorry that Stella is having such a tough time. I do think that 3 months is too soon to give up, especially with meds on board. If Stella is vomiting that much and refusing to eat, I would request that you have a renal blood test done to check her bicarb levels. She may be experiencing metabolic acidosis, which happens often on keto. If her bicarbs are seriously low, it can be dangerous. It also causes seizures to go through the roof, which may be a clue that it could be what is going on with you. There are easy treatments to get bicarbs up to a safe level, although sometimes it will require a lower ratio. Sorry to sound like the expert on this, but I practically am, as Langan has been hospitalized three times with bicarbs that bottomed out. Her seizures went through the roof, she started vomiting more and screaming when we tried to feed her. Unfortunately for us, we are one of those rare cases of acidosis that is having a hard time being controlled on keto, the docs think because for us it is a pre-existing condition, so we are slowly weaning down. Since addressing the acidosis, though, we have our happy daughter back, the vomiting has decreased significantly and now instead of screaming at meal time she is smiling and grabbing her spoon. And the seizures were noticeably better as well. So you may want to look into this. Just my two cents.... , mom to Langan, 2 yrs old and keto kid since 11/03; med free since 4/2/04, weaning off keto due to metabolic acidosis problems. = ( > > sorry guys, this is going to be a long one, i need to gripe. > > Yesterday was a tough day for Stella had to work so hubby was with her, she refused to eat, which she has been doing for quite some time now, but when she did eat she would throw it up. Her seizures were still continuing, and she was unresponsive for most of the day, her sister was the only one who could manage to get any food in her. She would eat one or two bites then up it would come. So, when I got home I called the dietician and we agreed that maybe w/ the MCTon board she might be too ketotic, since I don't have my blood keytone machine yet, i was unable to check, so she suggested i give her some OJ, then lower her ratio to a 3.75-1 still using the 8g of mct per meal. she did eat dinner, and continued to gag, but nothing came up thank goodness. > I am so frustrated with our team here in seattle, the dietician is supportative though has no more suggestions, she is just too inexperienced. The Nurse practicioner whom we contact to get info from has not responded to my calls, he was supposed to set up her VNS apt, and no response. I did email her epi last night, so i am eagerly awaiting a response from someone soon. > So a couple questions. Now that the diazepam is gone, how long did it take those of you out there to notice a change with the diet. I am scared her body needs the benzo to help control the seizures, but then looking back they didnt' do anything at all. I did ask her epi to give me a schedule to wean her off all meds, and just try the diet by itself. We are pros now with the diastat, so if need be we can give her that. What to do. > I know most of you have noticed improvement in a short period of time, but is 3 months too soon to tell? > There is definitly something neurologicaly going on though because her hands are curling and always lifted up rather than by her side. Her drops yesterday were face forward rather than backwards, so yet again her seizures have shifted. AAAHHH-- Well i 'd best get some work done, i'm on location shooting today for Microsoft, so i'm using their computer. > Stansfield > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 I am so sorry that Stella is having such a tough time. I do think that 3 months is too soon to give up, especially with meds on board. If Stella is vomiting that much and refusing to eat, I would request that you have a renal blood test done to check her bicarb levels. She may be experiencing metabolic acidosis, which happens often on keto. If her bicarbs are seriously low, it can be dangerous. It also causes seizures to go through the roof, which may be a clue that it could be what is going on with you. There are easy treatments to get bicarbs up to a safe level, although sometimes it will require a lower ratio. Sorry to sound like the expert on this, but I practically am, as Langan has been hospitalized three times with bicarbs that bottomed out. Her seizures went through the roof, she started vomiting more and screaming when we tried to feed her. Unfortunately for us, we are one of those rare cases of acidosis that is having a hard time being controlled on keto, the docs think because for us it is a pre-existing condition, so we are slowly weaning down. Since addressing the acidosis, though, we have our happy daughter back, the vomiting has decreased significantly and now instead of screaming at meal time she is smiling and grabbing her spoon. And the seizures were noticeably better as well. So you may want to look into this. Just my two cents.... , mom to Langan, 2 yrs old and keto kid since 11/03; med free since 4/2/04, weaning off keto due to metabolic acidosis problems. = ( > > sorry guys, this is going to be a long one, i need to gripe. > > Yesterday was a tough day for Stella had to work so hubby was with her, she refused to eat, which she has been doing for quite some time now, but when she did eat she would throw it up. Her seizures were still continuing, and she was unresponsive for most of the day, her sister was the only one who could manage to get any food in her. She would eat one or two bites then up it would come. So, when I got home I called the dietician and we agreed that maybe w/ the MCTon board she might be too ketotic, since I don't have my blood keytone machine yet, i was unable to check, so she suggested i give her some OJ, then lower her ratio to a 3.75-1 still using the 8g of mct per meal. she did eat dinner, and continued to gag, but nothing came up thank goodness. > I am so frustrated with our team here in seattle, the dietician is supportative though has no more suggestions, she is just too inexperienced. The Nurse practicioner whom we contact to get info from has not responded to my calls, he was supposed to set up her VNS apt, and no response. I did email her epi last night, so i am eagerly awaiting a response from someone soon. > So a couple questions. Now that the diazepam is gone, how long did it take those of you out there to notice a change with the diet. I am scared her body needs the benzo to help control the seizures, but then looking back they didnt' do anything at all. I did ask her epi to give me a schedule to wean her off all meds, and just try the diet by itself. We are pros now with the diastat, so if need be we can give her that. What to do. > I know most of you have noticed improvement in a short period of time, but is 3 months too soon to tell? > There is definitly something neurologicaly going on though because her hands are curling and always lifted up rather than by her side. Her drops yesterday were face forward rather than backwards, so yet again her seizures have shifted. AAAHHH-- Well i 'd best get some work done, i'm on location shooting today for Microsoft, so i'm using their computer. > Stansfield > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2004 Report Share Posted August 6, 2004 langansmom wrote: > If Stella is vomiting that much and refusing to eat, I would request > that you have a renal blood test done to check her bicarb levels. Renal blood test?? Whats that? Blood gasses I understand but....... So glad to see Langan is still doing well , 's mom > > She may be experiencing metabolic acidosis, which happens often on > keto. If her bicarbs are seriously low, it can be dangerous. It > also causes seizures to go through the roof, which may be a clue that > it could be what is going on with you. There are easy treatments to > get bicarbs up to a safe level, although sometimes it will require a > lower ratio. Sorry to sound like the expert on this, but I > practically am, as Langan has been hospitalized three times with > bicarbs that bottomed out. Her seizures went through the roof, she > started vomiting more and screaming when we tried to feed her. > Unfortunately for us, we are one of those rare cases of acidosis that > is having a hard time being controlled on keto, the docs think > because for us it is a pre-existing condition, so we are slowly > weaning down. Since addressing the acidosis, though, we have our > happy daughter back, the vomiting has decreased significantly and now > instead of screaming at meal time she is smiling and grabbing her > spoon. And the seizures were noticeably better as well. So you may > want to look into this. Just my two cents.... > > , mom to Langan, 2 yrs old and keto kid since 11/03; med free > since 4/2/04, weaning off keto due to metabolic acidosis problems. > = ( > > > > > > sorry guys, this is going to be a long one, i need to gripe. > > > > Yesterday was a tough day for Stella had to work so hubby was with > her, she refused to eat, which she has been doing for quite some time > now, but when she did eat she would throw it up. Her seizures were > still continuing, and she was unresponsive for most of the day, her > sister was the only one who could manage to get any food in her. She > would eat one or two bites then up it would come. So, when I got > home I called the dietician and we agreed that maybe w/ the MCTon > board she might be too ketotic, since I don't have my blood keytone > machine yet, i was unable to check, so she suggested i give her some > OJ, then lower her ratio to a 3.75-1 still using the 8g of mct per > meal. she did eat dinner, and continued to gag, but nothing came up > thank goodness. > > I am so frustrated with our team here in seattle, the dietician is > supportative though has no more suggestions, she is just too > inexperienced. The Nurse practicioner whom we contact to get info > from has not responded to my calls, he was supposed to set up her VNS > apt, and no response. I did email her epi last night, so i am > eagerly awaiting a response from someone soon. > > So a couple questions. Now that the diazepam is gone, how long did > it take those of you out there to notice a change with the diet. I > am scared her body needs the benzo to help control the seizures, but > then looking back they didnt' do anything at all. I did ask her epi > to give me a schedule to wean her off all meds, and just try the diet > by itself. We are pros now with the diastat, so if need be we can > give her that. What to do. > > I know most of you have noticed improvement in a short period of > time, but is 3 months too soon to tell? > > There is definitly something neurologicaly going on though because > her hands are curling and always lifted up rather than by her side. > Her drops yesterday were face forward rather than backwards, so yet > again her seizures have shifted. AAAHHH-- Well i 'd best get some > work done, i'm on location shooting today for Microsoft, so i'm using > their computer. > > Stansfield > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2004 Report Share Posted August 8, 2004 Just a thought......but if the problem, or part of it, is that Stella is too acidic, then the diamox will only be making that worse. You might want to discuss with dr dropping some of the diamox to see if that helps , 's mom amanda stansfield wrote: > Talked to the nurse friday re: stella's rough times, she is scheduled > for a > muscle/skin biopsy to rule out any problems and especially to rule out > > mitochondrial disease.,Her lamictal was increased much to my dismay, > and > she's going in for a 24 hour eeg to see what exactly is going on. I > always > want the eeg when I know she's having lots of seizures, knowing our > luck > with all this weaning/finetuning with the diet, she'll have no > seizures when > she goes in, which don't get me wrong is wonderful, however I sure > wish the > docs could see her like this. She's also due for another MRI, which > will > happen shortly before her VNS is put in. I guess her plateletts are > somewhat low, so that is of concern before going under general > anthesia. So > all is all, no good news, but atleast they have some sort of a plan > for her. > I did e-mail her epi, he's away at a conference so he'll get it > Monday, so > I'm hoping to get some answers then. > We've dropped her ratio to a 3.75-1, still using the MCT oil but not > at > every meal. I've seen a slight decrease in her seizures, but only > slight, > as I still count over 50 drops/myoclonics/and those pesky complex > partial > twitches, starring spells. > Her interest in food, is still awful, she flat out refuses to eat, > breakfast > is the worst. > So far only 3 drops this am, so I'm hoping she'll have a better day, > my back > is sure aching after carrying her around all day yesterday, 40lbs is a > lot > after a while. > > -- > Stansfield-mom to Stella age 5 1/2, started the keto diet May > 10th, > 2004 still awaiting her miracle. On lamictal and diamox, just > finished > weaning diazepam. Also, big sis Anisa, who is healthy and about to > turn 10. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Hi , I know what you mean about the EEG and no sz at the time. We had that in April when Rohan was in hospital for a video EEG and he didn't get a single generalized sz! I haven't been following all the mail so I don't know what Stella's ketones are like. Is she within range? I just asked because a few kids do better on low ketones. I'm so sorry but I don't know what's been happening with Stella because after we returned from holiday, I deleted whole chunks of posts as my inbox was too full and as a result I wasn't receiving any mail from the list. Rohan too is waiting for the VNS but the surgeon wasn't all that positive about results. Anyway we've got to try. Hope Stella is feeling better and they find out what's going on. Saro..........Rohan's mum. amanda stansfield wrote: >Talked to the nurse friday re: stella's rough times, she is scheduled for a >muscle/skin biopsy to rule out any problems and especially to rule out >mitochondrial disease.,Her lamictal was increased much to my dismay, and >she's going in for a 24 hour eeg to see what exactly is going on. I always >want the eeg when I know she's having lots of seizures, knowing our luck >with all this weaning/finetuning with the diet, she'll have no seizures when >she goes in, which don't get me wrong is wonderful, however I sure wish the >docs could see her like this. She's also due for another MRI, which will >happen shortly before her VNS is put in. I guess her plateletts are >somewhat low, so that is of concern before going under general anthesia. So >all is all, no good news, but atleast they have some sort of a plan for her. >I did e-mail her epi, he's away at a conference so he'll get it Monday, so >I'm hoping to get some answers then. >We've dropped her ratio to a 3.75-1, still using the MCT oil but not at >every meal. I've seen a slight decrease in her seizures, but only slight, >as I still count over 50 drops/myoclonics/and those pesky complex partial >twitches, starring spells. >Her interest in food, is still awful, she flat out refuses to eat, breakfast >is the worst. >So far only 3 drops this am, so I'm hoping she'll have a better day, my back >is sure aching after carrying her around all day yesterday, 40lbs is a lot >after a while. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Saro, Her keytones have always registered low when she gets her BHB tests, however her urine sticks are black/purple immediately, the docs don't care too much about that though. Yeah, we are prepared for the VNS not being her miracle but like you said, we've got to keep trying things. Funny enough, w/o the MCT oil, she's only have a couple dozen drops compared to over a 100. And her ratio is lower now, so maybe she's on the right road. I do hope so. I'm waiting to hear how her blood tests went that she had done friday, the lab only runs the BHB on mondays so i'll know her keytone levels soon. Fortunately, we don't have to wait too long for the VNS, I think Stella is top priority at the hospital, so by the end of the month is my guess, the neuro surgeon is on vacation who does it. -- -mom to Stella, 5years old, started keto diet May 10th 2004 still waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa is almost 10 and a happy healthy girl. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 , Thanks for letting me know about Stella's condition. We only had a couple of BHB tests done at the hospital the rest of the time just relied on urine ketones. For Rohan they had to be low. On higher levels he complained of feeling unwell and had more sz. I'm glad that MCT oil is helping and also that Stella doesn't have to wait too long for the VNS. It really works well for some people and hopefully she is one of them. I'm hoping against hope for the VNS to work for Rohan too. Saro.....Rohan's mum and Stansfield-lyons wrote: >Saro, >Her keytones have always registered low when she gets her BHB tests, however >her urine sticks are black/purple immediately, the docs don't care too much >about that though. >Yeah, we are prepared for the VNS not being her miracle but like you said, >we've got to keep trying things. >Funny enough, w/o the MCT oil, she's only have a couple dozen drops compared >to over a 100. And her ratio is lower now, so maybe she's on the right >road. I do hope so. > >I'm waiting to hear how her blood tests went that she had done friday, the >lab only runs the BHB on mondays so i'll know her keytone levels soon. >Fortunately, we don't have to wait too long for the VNS, I think Stella is >top priority at the hospital, so by the end of the month is my guess, the >neuro surgeon is on vacation who does it. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Refusing to eat and vomiting can be caused by many things; constipation, reflux, too high ketones (watch for dehydration) These are all common on the diet and can wreak havoc. Sometimes MCT can cause diarhea, but you will have to judge it. We also noticed changes in the types of seizures with the diet. Sometimes all hell broke lose. It was worst when weaning medications. Changes can take 1 or 2 weeks to show the effects, good or bad. Don't be too hard on your keto team. Most of them are inexperienced and the diet isn't as easy as trying pills. The diet is an experiment too. You have to be patient. Remember to keep good records, weigh and measure your child accurately once a week, read Dr. Freeman's book every day, twice a day and keep positive. Bill astansfield@... wrote: > sorry guys, this is going to be a long one, i need to gripe. > > Yesterday was a tough day for Stella had to work so hubby was with > her, she refused to eat, which she has been doing for quite some time > now, but when she did eat she would throw it up. Her seizures were > still continuing, and she was unresponsive for most of the day, her > sister was the only one who could manage to get any food in her. She > would eat one or two bites then up it would come. So, when I got > home I called the dietician and we agreed that maybe w/ the MCTon > board she might be too ketotic, since I don't have my blood keytone > machine yet, i was unable to check, so she suggested i give her some > OJ, then lower her ratio to a 3.75-1 still using the 8g of mct per > meal. she did eat dinner, and continued to gag, but nothing came up > thank goodness. I am so frustrated with our team here in seattle, the > dietician is supportative though has no more suggestions, she is just > too inexperienced. The Nurse practicioner whom we contact to get > info from has not responded to my calls, he was supposed to set up > her VNS apt, and no response. I did email her epi last night, so i > am eagerly awaiting a response from someone soon. So a couple > questions. Now that the diazepam is gone, how long did it take those > of you out there to notice a change with the diet. I am scared her > body needs the benzo to help control the seizures, but then looking > back they didnt' do anything at all. I did ask her epi to give me a > schedule to wean her off all meds, and just try the diet by itself. > We are pros now with the diastat, so if need be we can give her that. > What to do. I know most of you have noticed improvement in a short > period of time, but is 3 months too soon to tell? There is definitly > something neurologicaly going on though because her hands are curling > and always lifted up rather than by her side. Her drops yesterday > were face forward rather than backwards, so yet again her seizures > have shifted. AAAHHH-- Well i 'd best get some work done, i'm on > location shooting today for Microsoft, so i'm using their computer. > Stansfield > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.