Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Am going to the Dr. tomorrow. Jack had drops/twitches/spike wave stupor. She's down to 50 mg in the AM and 50 mg in the PM. THings are better today. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 My son went toxic in hospital after his first dose of dilantin. It was a loading dose and not even the max dose for his body weight. We got the levels lowered by the time he came home but with more seizure activity the med was again increased and again he went toxic - was sitting at about 47 by the time it was caught - he was so dopey he looked like a little 4 yr old drunk - staggering and slurring and always tired. I didnt make the connection I just kept thinking it was due to the increase in seizure activity. Since then we have worked toward bringing down the levels and they are now sitting at 7 (we are working on a wean since I pushed hard enough with the neuro she said it was ok to start weaning it) and he is doing much much much better and we have only decreased the dose once so far. I think the diet is working better now too that we have decrease the dilantin as his seizures are now down to about 3/day (drops and myoclonics) whereas before we were charting 50+ a day. I plan on continuing the decrease agian jan 7 - but you wouldnt believe this is the same boy that was sitting at a toxic level of 47. He is totally different - so full of life and getting into everything (just like the old days ) The higher the levels climbed the more seizures he had - it was as if the drug was making the seizures come instead of taking them away. He was also very pale and looked sick all the time. Jenn don_gal wrote: Hello-- I could use some help. started the diet 12-10-01, did so *awesome* at the hospital and great our first week home. This week things are deteriorating and I am trying to keep my chin up. The first two weeks of the diet saw some fantastic changes. The biggest was seizure control for the very first time since she began having seizures(!!!), and there were such positive effects on motor, vocal, and bladder control as well. What a gift! The only concern was that she was still more lethargic than we'd like to see, and that added a complication of not being able to tell if might have been having extremely subtle quiet seizure activity. This third week is not going great. The quiet episodes are most definitely seizure-like, although usually lighter than pre-diet. However, the motor-involved fellows are also sneaking back in. :0( 's weight is down a total of 5.5 lbs since we started, though yesterday she started taking 50 Kcal more than we'd been giving her. She looks absolutely ill, with no color to her except the deep purple rings around her eyes. She's soooo scrawny and acts very weak. The motor control we had seen is rapidly leaving again (which might be due to inadequate calories?). But what has me most concerned is her personality change. Her spunk is GONE and she isn't communicating or able to pay attention. We've been at this point before when she was on meds that disagreed with her (ie: Ativan, Dilantin) or on amounts that were toxic. So we are extremely suspicious that she may be toxic on her current levels of Keppra (already sky-high blood levels...) and/or Lamictal. How soon after initiating the diet might a child start showing signs of toxicity? What signs do you look for? The neuro told us Keppra toxicity causes aggression and Lamictal shows up as nausea or vomiting. But are there other signs we need to be watchful for that you all have seen? She showed nystagmus (eyes not working in tandem) on Dilantin, which showed up again yesterday. Also, her eyes have been bloodshot every since starting the diet. 's hand use is basically non-existent due to her syndrome, but immediately upon starting the diet she was able to activate her switches intentionally. Now she is back to uncontrolled flailing where she hits herself in the face...the bridge of her nose took a really good shot this morning. This kind of involuntary flailing was also something we saw only on Dilantin. It breaks my heart to see this way. The neurology nurse's suggestion was to increase her medications, but my husband and I feel this is the wrong direction and have chosen not to increase. We'll have labs drawn later this week, but even at that it takes 10 days to get the Keppra levels back (just another reason we really want her OFF of it!!!). Our dietician is supportive of the possiblity of medication toxicity, yet her position does not permit her to make recommendations regarding drugs. Our neuro is in Brazil for the next week, and the nurse is, well, recommending that we increase Lamictal. So, I ask you all for your insights. Are we missing something obvious related to the diet? Are there subtle toxicity signs you have seen with either Lamictal or Keppra that you might suggest we be watchful for (because maybe we've seen them and just not made the connection)? Your help is most greatly appreciated, Rose-Marie, wife to Don, mom to , (5 3/4 yrs) and Becky (3 3/4 yrs) North Bend, WA, USA "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 December 30, 2001 Report Share Posted December 30, 2001 She is either too ketotic or toxic on the meds, I would say. If the stick is turning black right away or is consistently black, I would try lowering ratio. Otherwise I would try weaning the drugs.One thing to be aware of with drug levels, I know with depakote and the diet you can't go by drug levels sometimes. Drug level can show us as very low, below theraputic level, and yet the child is toxic, Drs don't realize it, want to increase drugs, but the answer comes when drugs are weaned and child gets better. I don't know if lamictal and keppra could work this way too, where you can't trust the drug level you get. But I would seriously consider cutting back on the drugs. All the best , jessica's mom don_gal wrote: Hello-- I could use some help. started the diet 12-10-01, did so *awesome* at the hospital and great our first week home. This week things are deteriorating and I am trying to keep my chin up. The first two weeks of the diet saw some fantastic changes. The biggest was seizure control for the very first time since she began having seizures(!!!), and there were such positive effects on motor, vocal, and bladder control as well. What a gift! The only concern was that she was still more lethargic than we'd like to see, and that added a complication of not being able to tell if might have been having extremely subtle quiet seizure activity. This third week is not going great. The quiet episodes are most definitely seizure-like, although usually lighter than pre-diet. However, the motor-involved fellows are also sneaking back in. :0( 's weight is down a total of 5.5 lbs since we started, though yesterday she started taking 50 Kcal more than we'd been giving her. She looks absolutely ill, with no color to her except the deep purple rings around her eyes. She's soooo scrawny and acts very weak. The motor control we had seen is rapidly leaving again (which might be due to inadequate calories?). But what has me most concerned is her personality change. Her spunk is GONE and she isn't communicating or able to pay attention. We've been at this point before when she was on meds that disagreed with her (ie: Ativan, Dilantin) or on amounts that were toxic. So we are extremely suspicious that she may be toxic on her current levels of Keppra (already sky-high blood levels...) and/or Lamictal. How soon after initiating the diet might a child start showing signs of toxicity? What signs do you look for? The neuro told us Keppra toxicity causes aggression and Lamictal shows up as nausea or vomiting. But are there other signs we need to be watchful for that you all have seen? She showed nystagmus (eyes not working in tandem) on Dilantin, which showed up again yesterday. Also, her eyes have been bloodshot every since starting the diet. 's hand use is basically non-existent due to her syndrome, but immediately upon starting the diet she was able to activate her switches intentionally. Now she is back to uncontrolled flailing where she hits herself in the face...the bridge of her nose took a really good shot this morning. This kind of involuntary flailing was also something we saw only on Dilantin. It breaks my heart to see this way. The neurology nurse's suggestion was to increase her medications, but my husband and I feel this is the wrong direction and have chosen not to increase. We'll have labs drawn later this week, but even at that it takes 10 days to get the Keppra levels back (just another reason we really want her OFF of it!!!). Our dietician is supportive of the possiblity of medication toxicity, yet her position does not permit her to make recommendations regarding drugs. Our neuro is in Brazil for the next week, and the nurse is, well, recommending that we increase Lamictal. So, I ask you all for your insights. Are we missing something obvious related to the diet? Are there subtle toxicity signs you have seen with either Lamictal or Keppra that you might suggest we be watchful for (because maybe we've seen them and just not made the connection)? Your help is most greatly appreciated, Rose-Marie, wife to Don, mom to , (5 3/4 yrs) and Becky (3 3/4 yrs) North Bend, WA, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi Rose-Marie You didn't say what 's ketone levels are. When my daughter commenced the diet, her big problem was ketone levels that were way too high. This can cause many of the symptoms that you describe such as lethargy, increase in seizure activity, feeling unwell. I found that giving 20 ml of lemonade on an as needed basis would temporarily break down excess ketones and her symptoms improved. Only do this if her ketones are excessive though, for example if they are at the highest level and the stick changes colour instantly. What ratio is she on? If continues to be way too ketotic you may need to reduce her ratio. started on a 4:1 ratio, which I gradually reduced to 2.8:1 which seems to suit her. I can't advise on the meds issue really except that I know many have problems with seizures whilst meds are used. A month ago I commenced a slow wean of Lamictal (12.5mg per week) and this week we have had more seizures. I don't know whether this is because of the med wean or lack of sleep and excitement over Christmas . . . or something else! What I do know is that when problem solving, only try changing 1 thing at a time. I would be very cautious of increasing drugs. Many on this list have had drs wanting to increase meds, but it was a reduction that was needed. On the diet the kids metabolise the meds differently and levels usually go higher (my understanding). My advice would be to start with the easiest first and check ketone levels, and if necessary treat excess ketosis. If that doesn't help, look into the meds issue. Hang in there, it will be worth it! You will find the solution. Jill At 03:18 AM 12/31/01, you wrote: >Hello-- > >I could use some help. started the diet 12-10-01, did so *awesome* >at the hospital and great our first week home. This week things are >deteriorating and I am trying to keep my chin up. > >The first two weeks of the diet saw some fantastic changes. The biggest was >seizure control for the very first time since she began having >seizures(!!!), and there were such positive effects on motor, vocal, and >bladder control as well. What a gift! The only concern was that she was >still more lethargic than we'd like to see, and that added a complication of >not being able to tell if might have been having extremely subtle >quiet seizure activity. > >This third week is not going great. The quiet episodes are most definitely >seizure-like, although usually lighter than pre-diet. However, the >motor-involved fellows are also sneaking back in. :0( 's weight is >down a total of 5.5 lbs since we started, though yesterday she started >taking 50 Kcal more than we'd been giving her. She looks absolutely ill, >with no color to her except the deep purple rings around her eyes. She's >soooo scrawny and acts very weak. The motor control we had seen is rapidly >leaving again (which might be due to inadequate calories?). But what has me >most concerned is her personality change. Her spunk is GONE and she isn't >communicating or able to pay attention. We've been at this point before >when she was on meds that disagreed with her (ie: Ativan, Dilantin) or on >amounts that were toxic. So we are extremely suspicious that she may be >toxic on her current levels of Keppra (already sky-high blood levels...) >and/or Lamictal. > >How soon after initiating the diet might a child start showing signs of >toxicity? What signs do you look for? The neuro told us Keppra toxicity >causes aggression and Lamictal shows up as nausea or vomiting. But are >there other signs we need to be watchful for that you all have seen? She >showed nystagmus (eyes not working in tandem) on Dilantin, which showed up >again yesterday. Also, her eyes have been bloodshot every since starting >the diet. 's hand use is basically non-existent due to her syndrome, >but immediately upon starting the diet she was able to activate her switches >intentionally. Now she is back to uncontrolled flailing where she hits >herself in the face...the bridge of her nose took a really good shot this >morning. This kind of involuntary flailing was also something we saw only >on Dilantin. > >It breaks my heart to see this way. The neurology nurse's suggestion >was to increase her medications, but my husband and I feel this is the wrong >direction and have chosen not to increase. We'll have labs drawn later this >week, but even at that it takes 10 days to get the Keppra levels back (just >another reason we really want her OFF of it!!!). > >Our dietician is supportive of the possiblity of medication toxicity, yet >her position does not permit her to make recommendations regarding drugs. >Our neuro is in Brazil for the next week, and the nurse is, well, >recommending that we increase Lamictal. > >So, I ask you all for your insights. Are we missing something obvious >related to the diet? Are there subtle toxicity signs you have seen with >either Lamictal or Keppra that you might suggest we be watchful for (because >maybe we've seen them and just not made the connection)? > >Your help is most greatly appreciated, >Rose-Marie, >wife to Don, >mom to , (5 3/4 yrs) >and Becky (3 3/4 yrs) >North Bend, WA, USA > > > > > " 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 December 30, 2001 Report Share Posted December 30, 2001 on 12/30/2001 1:18 PM, don_gal at don_gal@... wrote: Have her lamictal level drawn! When was started on the diet she was on lamictal and became TOXIC in her 3rd or 4th week. Very lethargic , mood swings etc she did have mild nausea,no vomiting. They were unable to calculate her lamictal level because it was too high. They had to recalibrate the machine and try again and it was still too high to be read. The neuro told them not to try and get a specific level because it was obviosly too high. We cut her lamictal in half and 3 days later halfed it again. Slower wean over 2 monthes untill she was off. also had alot of problems with vomiting the first 3 weeks. Such a change and she also lost alot of weight initially. Robbie mom to jessica ketokid since 11/96 > > I could use some help. started the diet 12-10-01, did so *awesome* > at the hospital and great our first week home. This week things are > deteriorating and I am trying to keep my chin up. > > The first two weeks of the diet saw some fantastic changes. The biggest was > seizure control for the very first time since she began having > seizures(!!!), and there were such positive effects on motor, vocal, and > bladder control as well. What a gift! The only concern was that she was > still more lethargic than we'd like to see, and that added a complication of > not being able to tell if might have been having extremely subtle > quiet seizure activity. > > This third week is not going great. The quiet episodes are most definitely > seizure-like, although usually lighter than pre-diet. However, the > motor-involved fellows are also sneaking back in. :0( 's weight is > down a total of 5.5 lbs since we started, though yesterday she started > taking 50 Kcal more than we'd been giving her. She looks absolutely ill, > with no color to her except the deep purple rings around her eyes. She's > soooo scrawny and acts very weak. The motor control we had seen is rapidly > leaving again (which might be due to inadequate calories?). But what has me > most concerned is her personality change. Her spunk is GONE and she isn't > communicating or able to pay attention. We've been at this point before > when she was on meds that disagreed with her (ie: Ativan, Dilantin) or on > amounts that were toxic. So we are extremely suspicious that she may be > toxic on her current levels of Keppra (already sky-high blood levels...) > and/or Lamictal. > > How soon after initiating the diet might a child start showing signs of > toxicity? What signs do you look for? The neuro told us Keppra toxicity > causes aggression and Lamictal shows up as nausea or vomiting. But are > there other signs we need to be watchful for that you all have seen? She > showed nystagmus (eyes not working in tandem) on Dilantin, which showed up > again yesterday. Also, her eyes have been bloodshot every since starting > the diet. 's hand use is basically non-existent due to her syndrome, > but immediately upon starting the diet she was able to activate her switches > intentionally. Now she is back to uncontrolled flailing where she hits > herself in the face...the bridge of her nose took a really good shot this > morning. This kind of involuntary flailing was also something we saw only > on Dilantin. > > It breaks my heart to see this way. The neurology nurse's suggestion > was to increase her medications, but my husband and I feel this is the wrong > direction and have chosen not to increase. We'll have labs drawn later this > week, but even at that it takes 10 days to get the Keppra levels back (just > another reason we really want her OFF of it!!!). > > Our dietician is supportive of the possiblity of medication toxicity, yet > her position does not permit her to make recommendations regarding drugs. > Our neuro is in Brazil for the next week, and the nurse is, well, > recommending that we increase Lamictal. > > So, I ask you all for your insights. Are we missing something obvious > related to the diet? Are there subtle toxicity signs you have seen with > either Lamictal or Keppra that you might suggest we be watchful for (because > maybe we've seen them and just not made the connection)? > > Your help is most greatly appreciated, > Rose-Marie, > wife to Don, > mom to , (5 3/4 yrs) > and Becky (3 3/4 yrs) > North Bend, WA, USA > > > > > " 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 December 30, 2001 Report Share Posted December 30, 2001 Rose-Marie, I feel I'm not very qualified to say, though, because I have not dealt with it myself on the Keto diet.......but, my gut instinct is telling me it's med toxicity here. This diet is amazing but also very powerful. I'm glad to hear you are increasing calories if you've seen that much weight loss in such a short time. Interesting that you are seeing stuff you only saw on Dilantin..... it makes me think of something a doctor once told me about how some of these drugs can hang out in the body for a long time. If the body detects something that it recognizes as toxic, it will protect the individual by trying to store it away in the body fat, away from the brain. Then, if the metabolism changes later on, and that fat is utilized, the body is forced to metabolize the stored drugs/toxins. I wonder if had any fat stores and the weight loss you've recently seen have brought out some old stored Dilantin?? I know it sounds kinda "out there"......but I wonder. My goodness, I am right with you on NOT increasing the Lamictal! If anything, it seems to me that she may need just the opposite. Hopefully this will settle out. It was like you saw such promise at the beginning...... you have to hang on to the hope that it's still there...... but it's like a veil lifted and now you have to find a way to lift it again. I wish I knew..... I really do. I know one thing, though..... TRUST YOUR INSTINCTS! I'll keep in my prayers and hope that calorie increase will make her feel better within a day or two. I think it may take a few days to make a difference. I wish your doctor would come back from Brazil early!! I really think you need to start talking med weaning...... if the Keppra level takes so long to get back, they should order you a draw pronto..... so even tho you won't know for a while, I think you're going to need the doc to look at that...... I hate those blood draws, though. Keep us posted..... Patti Medication toxicity? We've been at this point beforewhen she was on meds that disagreed with her (ie: Ativan, Dilantin) or onamounts that were toxic. So we are extremely suspicious that she may betoxic on her current levels of Keppra (already sky-high blood levels...)and/or Lamictal.How soon after initiating the diet might a child start showing signs oftoxicity? What signs do you look for? The neuro told us Keppra toxicitycauses aggression and Lamictal shows up as nausea or vomiting. But arethere other signs we need to be watchful for that you all have seen? Sheshowed nystagmus (eyes not working in tandem) on Dilantin, which showed upagain yesterday. Also, her eyes have been bloodshot every since startingthe diet. 's hand use is basically non-existent due to her syndrome,but immediately upon starting the diet she was able to activate her switchesintentionally. Now she is back to uncontrolled flailing where she hitsherself in the face...the bridge of her nose took a really good shot thismorning. This kind of involuntary flailing was also something we saw onlyon Dilantin. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2001 Report Share Posted December 31, 2001 Rose-Marie, Do NOT increase the lamictal. went toxic 13 days into the diet, crept up subtly, before we knew it we were in hospital in status. Our neuro wanted to up the meds, we followed our gut and dropped the lamictal by nearly a third, 6 days later he came out of it, and was the best we had seen him for over a year. He was also very pale in his second week, very ketotic, had dark rings round his eyes, which were definitely bloodshot. If you scan some previous posts, you will see that a few of us suspect bloodshot eyes as possibly being a sign of med toxicity. I have always likened this feature to seeing someone after smoking a lot of marijuana, red eyes always a giveaway!!! Too many drugs!!! We are stuggling big time with the meds issue, came home from hospital yesterday after being in status from the chicken pox, really peeved to say that he is on more drugs now than we went in. I held my ground re upping the lamictal, but compromised with the epilim (depakote), raised this, and added nitrazepam. Ugghhh!!! However, we dropped the other benzo he was on, diazepam, so I guess we start all over again now. We also upped his calories, his weight has stayed stable now for three months. Best of luck, Hill, mother to , 5, in NZ Medication toxicity? > Hello-- > > I could use some help. started the diet 12-10-01, did so *awesome* > at the hospital and great our first week home. This week things are > deteriorating and I am trying to keep my chin up. > > The first two weeks of the diet saw some fantastic changes. The biggest was > seizure control for the very first time since she began having > seizures(!!!), and there were such positive effects on motor, vocal, and > bladder control as well. What a gift! The only concern was that she was > still more lethargic than we'd like to see, and that added a complication of > not being able to tell if might have been having extremely subtle > quiet seizure activity. > > This third week is not going great. The quiet episodes are most definitely > seizure-like, although usually lighter than pre-diet. However, the > motor-involved fellows are also sneaking back in. :0( 's weight is > down a total of 5.5 lbs since we started, though yesterday she started > taking 50 Kcal more than we'd been giving her. She looks absolutely ill, > with no color to her except the deep purple rings around her eyes. She's > soooo scrawny and acts very weak. The motor control we had seen is rapidly > leaving again (which might be due to inadequate calories?). But what has me > most concerned is her personality change. Her spunk is GONE and she isn't > communicating or able to pay attention. We've been at this point before > when she was on meds that disagreed with her (ie: Ativan, Dilantin) or on > amounts that were toxic. So we are extremely suspicious that she may be > toxic on her current levels of Keppra (already sky-high blood levels...) > and/or Lamictal. > > How soon after initiating the diet might a child start showing signs of > toxicity? What signs do you look for? The neuro told us Keppra toxicity > causes aggression and Lamictal shows up as nausea or vomiting. But are > there other signs we need to be watchful for that you all have seen? She > showed nystagmus (eyes not working in tandem) on Dilantin, which showed up > again yesterday. Also, her eyes have been bloodshot every since starting > the diet. 's hand use is basically non-existent due to her syndrome, > but immediately upon starting the diet she was able to activate her switches > intentionally. Now she is back to uncontrolled flailing where she hits > herself in the face...the bridge of her nose took a really good shot this > morning. This kind of involuntary flailing was also something we saw only > on Dilantin. > > It breaks my heart to see this way. The neurology nurse's suggestion > was to increase her medications, but my husband and I feel this is the wrong > direction and have chosen not to increase. We'll have labs drawn later this > week, but even at that it takes 10 days to get the Keppra levels back (just > another reason we really want her OFF of it!!!). > > Our dietician is supportive of the possiblity of medication toxicity, yet > her position does not permit her to make recommendations regarding drugs. > Our neuro is in Brazil for the next week, and the nurse is, well, > recommending that we increase Lamictal. > > So, I ask you all for your insights. Are we missing something obvious > related to the diet? Are there subtle toxicity signs you have seen with > either Lamictal or Keppra that you might suggest we be watchful for (because > maybe we've seen them and just not made the connection)? > > Your help is most greatly appreciated, > Rose-Marie, > wife to Don, > mom to , (5 3/4 yrs) > and Becky (3 3/4 yrs) > North Bend, WA, USA > > > > > " 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 December 31, 2001 Report Share Posted December 31, 2001 So glad is home! Hope you have a Happy New Year! Jenn richard & susan hill wrote: Rose-Marie, Do NOT increase the lamictal. went toxic 13 days into the diet, crept up subtly, before we knew it we were in hospital in status. Our neuro wanted to up the meds, we followed our gut and dropped the lamictal by nearly a third, 6 days later he came out of it, and was the best we had seen him for over a year. He was also very pale in his second week, very ketotic, had dark rings round his eyes, which were definitely bloodshot. If you scan some previous posts, you will see that a few of us suspect bloodshot eyes as possibly being a sign of med toxicity. I have always likened this feature to seeing someone after smoking a lot of marijuana, red eyes always a giveaway!!! Too many drugs!!! We are stuggling big time with the meds issue, came home from hospital yesterday after being in status from the chicken pox, really peeved to say that he is on more drugs now than we went in. I held my ground re upping the lamictal, but compromised with the epilim (depakote), raised this, and added nitrazepam. Ugghhh!!! However, we dropped the other benzo he was on, diazepam, so I guess we start all over again now. We also upped his calories, his weight has stayed stable now for three months. Best of luck, Hill, mother to , 5, in NZ Medication toxicity? > Hello-- > > I could use some help. started the diet 12-10-01, did so *awesome* > at the hospital and great our first week home. This week things are > deteriorating and I am trying to keep my chin up. > > The first two weeks of the diet saw some fantastic changes. The biggest was > seizure control for the very first time since she began having > seizures(!!!), and there were such positive effects on motor, vocal, and > bladder control as well. What a gift! The only concern was that she was > still more lethargic than we'd like to see, and that added a complication of > not being able to tell if might have been having extremely subtle > quiet seizure activity. > > This third week is not going great. The quiet episodes are most definitely > seizure-like, although usually lighter than pre-diet. However, the > motor-involved fellows are also sneaking back in. :0( 's weight is > down a total of 5.5 lbs since we started, though yesterday she started > taking 50 Kcal more than we'd been giving her. She looks absolutely ill, > with no color to her except the deep purple rings around her eyes. She's > soooo scrawny and acts very weak. The motor control we had seen is rapidly > leaving again (which might be due to inadequate calories?). But what has me > most concerned is her personality change. Her spunk is GONE and she isn't > communicating or able to pay attention. We've been at this point before > when she was on meds that disagreed with her (ie: Ativan, Dilantin) or on > amounts that were toxic. So we are extremely suspicious that she may be > toxic on her current levels of Keppra (already sky-high blood levels...) > and/or Lamictal. > > How soon after initiating the diet might a child start showing signs of > toxicity? What signs do you look for? The neuro told us Keppra toxicity > causes aggression and Lamictal shows up as nausea or vomiting. But are > there other signs we need to be watchful for that you all have seen? She > showed nystagmus (eyes not working in tandem) on Dilantin, which showed up > again yesterday. Also, her eyes have been bloodshot every since starting > the diet. 's hand use is basically non-existent due to her syndrome, > but immediately upon starting the diet she was able to activate her switches > intentionally. Now she is back to uncontrolled flailing where she hits > herself in the face...the bridge of her nose took a really good shot this > morning. This kind of involuntary flailing was also something we saw only > on Dilantin. > > It breaks my heart to see this way. The neurology nurse's suggestion > was to increase her medications, but my husband and I feel this is the wrong > direction and have chosen not to increase. We'll have labs drawn later this > week, but even at that it takes 10 days to get the Keppra levels back (just > another reason we really want her OFF of it!!!). > > Our dietician is supportive of the possiblity of medication toxicity, yet > her position does not permit her to make recommendations regarding drugs. > Our neuro is in Brazil for the next week, and the nurse is, well, > recommending that we increase Lamictal. > > So, I ask you all for your insights. Are we missing something obvious > related to the diet? Are there subtle toxicity signs you have seen with > either Lamictal or Keppra that you might suggest we be watchful for (because > maybe we've seen them and just not made the connection)? > > Your help is most greatly appreciated, > Rose-Marie, > wife to Don, > mom to , (5 3/4 yrs) > and Becky (3 3/4 yrs) > North Bend, WA, USA > > > > > "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 January 1, 2002 Report Share Posted January 1, 2002 For what it is worth, Jackie probably had Lamictal toxicity. The Dr. skipped one dose of Lamictal completely, and then dropped her dosage to half, which is 50 mg in am and 50mg in pm. She had 7 drops yesterday and was a bit out it, and so far @ 7:04pm she's had two. She came close but is more her self. She is six years old, we started the diet on 12/10, and it has been a H of a nasty ride. If she continue's to do better tomorrow, ie: no drops she'll return to school either Thursday or Friday. Good luck Mother of Jackie, age 6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 You guys are so terrific! I really appreciate your suggestions. Your advice comes at a time when the medical staff takes off for their holidays, which I certainly don't begrudge them, but I sure wish our kids' medical issues would " take off for the holidays " too. How would we be able to tell if is too ketotic? Her sticks turn deepest purple (or darker) by around 30 seconds, though sometimes it is deep purple by 10 seconds. When I have asked the medical team if too much ketosis could be a problem, I'm told that she would be vomiting if it were present. She hasn't really been nauseated, but the lethargy and seizures are present. Only one morning have her ketones been in the moderate range; otherwise they have all been large. She is on a 4:1 ratio. I'm taking her for blood work tomorrow; would her bhb levels be too high if she's too ketotic? I find it so fascinating that any number of you have found Lamictal to be such a culprit...interesting! I did talk to the neurology nurse yesterday and he suggested we start cutting back on Keppra this morning, since she already takes 4000mgs...much too much for a little one her size (and especially now that she weighs 15% less than before). We are eager to get her off these meds if possible. Thanks again for all your help--and a very HAPPY, HEALTHY year ahead. God bless us, every one. Rose-Marie, wife to Don, mom to , (5.10 yrs) and Becky (3.11 yrs) North Bend, WA, USA don_gal@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 Hi Rose-Marie, You're supposed to read the stick at 15 seconds and ignore anything after that time. I don't think she would necessarily have to be vomiting if she were too ketotic. I know that Katera just gets terribly irritable and red in the face when she's too ketotic..... and we tread a very fine line with her getting dehydrated at that point. She starts refusing to drink...... which makes matters worse, then refusing to eat and gets "gaggy".... so I suppose vomiting would be the next step but she is CLEARLY too ketotic way before that point.... and these symptoms have always been relieved by a slight ratio drop. I go .2 at a time. Katera was started on a 3.5:1 ratio because our clinic believes 4:1 is too high for almost ALL their kids.... and they know they can alway ease UP on the ratio if need be but they feel too many families end up quitting the diet due to the problems at the higher ratios. You really want to avoid getting to that dehydration point. And YES, some kids seize more when they're really ketotic although we didn't have that problem. I think if I were in your shoes, I would press hard for a reduction to 3.8:1 for a week, just to see how she feels and what the seizure activity is like. That's a very small drop but might be enough to make a big difference for her. Also, sometimes it can be the acidity that is the problem with deep ketosis..... you can try adding a couple of ounces of plain club soda to her liquids, this often helps. Good to hear you're going to get to start reducing the Keppra! Patti Re: Medication toxicity? You guys are so terrific! I really appreciate your suggestions. Youradvice comes at a time when the medical staff takes off for their holidays,which I certainly don't begrudge them, but I sure wish our kids' medicalissues would "take off for the holidays" too.How would we be able to tell if is too ketotic? Her sticks turndeepest purple (or darker) by around 30 seconds, though sometimes it is deeppurple by 10 seconds. When I have asked the medical team if too muchketosis could be a problem, I'm told that she would be vomiting if it werepresent. She hasn't really been nauseated, but the lethargy and seizuresare present. Only one morning have her ketones been in the moderate range;otherwise they have all been large. She is on a 4:1 ratio. I'm taking herfor blood work tomorrow; would her bhb levels be too high if she's tooketotic?I find it so fascinating that any number of you have found Lamictal to besuch a culprit...interesting! I did talk to the neurology nurse yesterdayand he suggested we start cutting back on Keppra this morning, since shealready takes 4000mgs...much too much for a little one her size (andespecially now that she weighs 15% less than before). We are eager to gether off these meds if possible.Thanks again for all your help--and a very HAPPY, HEALTHY year ahead. Godbless us, every one.Rose-Marie,wife to Don,mom to , (5.10 yrs)and Becky (3.11 yrs)North Bend, WA, USAdon_gal@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 Rose-Marie, Hannah has been too ketotic on occasions and the signs for her have been flushed cheeks, nausea (gagging) and perhaps lethargy. Some say that red ears are a sign too, but I've not seen that in Hannah. At its worst she is vomiting too, and the urinary ketones read high on the multistix. Not vomiting does not necessarily mean not too ketotic, so it is important to look at all the possible symptoms. (Hannah's mum, Australia) ----- Original Message ----- From: don_gal How would we be able to tell if is too ketotic? Her sticks turndeepest purple (or darker) by around 30 seconds, though sometimes it is deeppurple by 10 seconds. When I have asked the medical team if too muchketosis could be a problem, I'm told that she would be vomiting if it werepresent.................. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2002 Report Share Posted January 1, 2002 The sticks I use you need to read at 45seconds. I think different sticks are read at different times - check the time on the bottle. Jenn Patti wrote: Hi Rose-Marie, You're supposed to read the stick at 15 seconds and ignore anything after that time. I don't think she would necessarily have to be vomiting if she were too ketotic. I know that Katera just gets terribly irritable and red in the face when she's too ketotic..... and we tread a very fine line with her getting dehydrated at that point. She starts refusing to drink...... which makes matters worse, then refusing to eat and gets "gaggy".... so I suppose vomiting would be the next step but she is CLEARLY too ketotic way before that point.... and these symptoms have always been relieved by a slight ratio drop. I go .2 at a time. Katera was started on a 3.5:1 ratio because our clinic believes 4:1 is too high for almost ALL their kids.... and they know they can alway ease UP on the ratio if need be but they feel too many families end up quitting the diet due to the problems at the higher ratios. You really want to avoid getting to that dehydration point. And YES, some kids seize more when they're really ketotic although we didn't have that problem. I think if I were in your shoes, I would press hard for a reduction to 3.8:1 for a week, just to see how she feels and what the seizure activity is like. That's a very small drop but might be enough to make a big difference for her. Also, sometimes it can be the acidity that is the problem with deep ketosis..... you can try adding a couple of ounces of plain club soda to her liquids, this often helps. Good to hear you're going to get to start reducing the Keppra! Patti Re: Medication toxicity? You guys are so terrific! I really appreciate your suggestions. Your advice comes at a time when the medical staff takes off for their holidays, which I certainly don't begrudge them, but I sure wish our kids' medical issues would "take off for the holidays" too. How would we be able to tell if is too ketotic? Her sticks turn deepest purple (or darker) by around 30 seconds, though sometimes it is deep purple by 10 seconds. When I have asked the medical team if too much ketosis could be a problem, I'm told that she would be vomiting if it were present. She hasn't really been nauseated, but the lethargy and seizures are present. Only one morning have her ketones been in the moderate range; otherwise they have all been large. She is on a 4:1 ratio. I'm taking her for blood work tomorrow; would her bhb levels be too high if she's too ketotic? I find it so fascinating that any number of you have found Lamictal to be such a culprit...interesting! I did talk to the neurology nurse yesterday and he suggested we start cutting back on Keppra this morning, since she already takes 4000mgs...much too much for a little one her size (and especially now that she weighs 15% less than before). We are eager to get her off these meds if possible. Thanks again for all your help--and a very HAPPY, HEALTHY year ahead. God bless us, every one. Rose-Marie, wife to Don, mom to , (5.10 yrs) and Becky (3.11 yrs) North Bend, WA, USA don_gal@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 You are going to have ups and downs. We saw changes daily and even hourly. One of my books on seizure management says that there are no such things as toxic levels of meds, only toxic patients. Med levels are a guide only. Each patient reacts differently to these drugs. You may be seeing the effects of some of the side affects of the diet; constipation, reflux. You may have too much liquid, too little; too low calories, too high calories. Look at each of these things closely. We are over a year on the diet and are making changes still to " get it right " . Medication toxicity? > Hello-- > > I could use some help. started the diet 12-10-01, did so *awesome* > at the hospital and great our first week home. This week things are > deteriorating and I am trying to keep my chin up. > > The first two weeks of the diet saw some fantastic changes. The biggest was > seizure control for the very first time since she began having > seizures(!!!), and there were such positive effects on motor, vocal, and > bladder control as well. What a gift! The only concern was that she was > still more lethargic than we'd like to see, and that added a complication of > not being able to tell if might have been having extremely subtle > quiet seizure activity. > > This third week is not going great. The quiet episodes are most definitely > seizure-like, although usually lighter than pre-diet. However, the > motor-involved fellows are also sneaking back in. :0( 's weight is > down a total of 5.5 lbs since we started, though yesterday she started > taking 50 Kcal more than we'd been giving her. She looks absolutely ill, > with no color to her except the deep purple rings around her eyes. She's > soooo scrawny and acts very weak. The motor control we had seen is rapidly > leaving again (which might be due to inadequate calories?). But what has me > most concerned is her personality change. Her spunk is GONE and she isn't > communicating or able to pay attention. We've been at this point before > when she was on meds that disagreed with her (ie: Ativan, Dilantin) or on > amounts that were toxic. So we are extremely suspicious that she may be > toxic on her current levels of Keppra (already sky-high blood levels...) > and/or Lamictal. > > How soon after initiating the diet might a child start showing signs of > toxicity? What signs do you look for? The neuro told us Keppra toxicity > causes aggression and Lamictal shows up as nausea or vomiting. But are > there other signs we need to be watchful for that you all have seen? She > showed nystagmus (eyes not working in tandem) on Dilantin, which showed up > again yesterday. Also, her eyes have been bloodshot every since starting > the diet. 's hand use is basically non-existent due to her syndrome, > but immediately upon starting the diet she was able to activate her switches > intentionally. Now she is back to uncontrolled flailing where she hits > herself in the face...the bridge of her nose took a really good shot this > morning. This kind of involuntary flailing was also something we saw only > on Dilantin. > > It breaks my heart to see this way. The neurology nurse's suggestion > was to increase her medications, but my husband and I feel this is the wrong > direction and have chosen not to increase. We'll have labs drawn later this > week, but even at that it takes 10 days to get the Keppra levels back (just > another reason we really want her OFF of it!!!). > > Our dietician is supportive of the possiblity of medication toxicity, yet > her position does not permit her to make recommendations regarding drugs. > Our neuro is in Brazil for the next week, and the nurse is, well, > recommending that we increase Lamictal. > > So, I ask you all for your insights. Are we missing something obvious > related to the diet? Are there subtle toxicity signs you have seen with > either Lamictal or Keppra that you might suggest we be watchful for (because > maybe we've seen them and just not made the connection)? > > Your help is most greatly appreciated, > Rose-Marie, > wife to Don, > mom to , (5 3/4 yrs) > and Becky (3 3/4 yrs) > North Bend, WA, USA > > > > > " 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 January 8, 2002 Report Share Posted January 8, 2002 Yes, there are different brands. And they must be used according to the directions. I read this in a magazine on diabetes. Some sticks must be read at a particular time, e.g. 15 seconds. Others can be read after a certain time, e.g. 30 seconds and don't change after that. Bill Re: Medication toxicity? > > You guys are so terrific! I really appreciate your > > suggestions. Your > > advice comes at a time when the medical staff takes off for > > their holidays, > > which I certainly don't begrudge them, but I sure wish our > > kids' medical > > issues would " take off for the holidays " too. > > > > How would we be able to tell if is too ketotic? Her > > sticks turn > > deepest purple (or darker) by around 30 seconds, though > > sometimes it is deep > > purple by 10 seconds. Quote Link to comment Share on other sites More sharing options...
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