Guest guest Posted December 15, 2007 Report Share Posted December 15, 2007 Can you talk her into doing a hair test?? Seizures can be related to certain metals. > > A friend of mine has a daughter (almost 5 years old) that is on 2 types > of seizure meds (topamax and keppra). The doctor is gonna throw in a > third one med if the 100mg of topamax doesn't work. She has absence > seizures. Before she started the meds she was having around 90-100 > seizures a day (even in her sleep). The meds have helped some, she's > not having as many now but the ones she does have are longer. > > She's now having problems with body odor. Does that mean she's not > tolerating the drugs? My friend is a wreck right now with all the meds > and nothing is helping her daughter and the thought of another med! > > Thanks > > Amy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 > > A friend of mine has a daughter (almost 5 years old) that is on 2 > types > > of seizure meds (topamax and keppra). The doctor is gonna throw in a > > third one med if the 100mg of topamax doesn't work. She has absence > > seizures. Before she started the meds she was having around 90-100 > > seizures a day (even in her sleep). The meds have helped some, she's > > not having as many now but the ones she does have are longer. > > EIther this isn't the whole story or the doctor is incompetent. They're just handing out whatever the drug rep gave them last, no rhyme nor reason to it. Topamax is at least indicated for absense seiures, Keppra is not. Generally it is not appropriate to tank the kid up on meds and keep adding them, they try one, if it doesn't cut it, try another, only if they fail several one at a time do you go to combinations. The old ethosuximide (trade name Zarontin) is the most effective one for absence seizures. If that is all she is having then ethosuximide is where most competent neurologists would start. Absense is where she just freezes for a few seconds to maybe a minute, no movements, no flopping, no falling down, no vocalization. Unless it lasts more than about 10 seconds the girl won't be aware it is happening. She'll be pretty addle brained until it is controlled. All antiseizure medications have a lot of side effects and problems, and there is very little OTC or diet you can do instead. This is why the doc's try to maintain people on one drug if at all possible. A big problem is the parents (and in adults, patients) have a lot of fear and that leads to very bad decisionmaking and overreliance on the doctor if he puts on a good act. If they have an EEG (should be easy to get a seizure recorded from your description) they should have a very clear idea of what is happening. Absence is very distinctive on the EEG and very easy to differentiate from any other kind of seizure. The doctors should have told them something along the lines of it is a " generalized absence epilepsy, " or used phrases that involved simple vs. complex, generalized vs. focal or partial, and absence vs. tonic, atonic, tonic-clonic. If the doctor didn't tell the mother this she needs to get a copy of the neurologist's interpretive report for the EEG from her daughter's chart and find out - those characterizations tell you which drugs are expected to work or not to work. The doctor is supposed to make a good diagnostic discrimination of what kind of seizure it is in order to pick the right drug. Since she continues to have seizures one should wonder if he DID pick the right drug. Neurology is generally an area where the quality of care is abysmal. The parents really need to take a lot of responsibility or their daughter's life is going to be ruined. Seizures beget seizures - this has been known for 2500 years. She needs to be medicated adequately to ensure her brain has a chance to recover and become less prone to seizures. BTW, one very important factor is compliance with the medication. It has to be given each time, every time, exactly as directed. The parents need to take the responsibility to ensure this really happens. Tasking the girl or another child to do it is not going to work. This is often a problem. Otherwise yes every time 've heard of someone who has seizures getting a hair test they do turn out to be toxic. However they do need to be on adequate medication to control seizures before they can chelate. Andy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 Her daughter had a 24 hour EEG done in October. Well, it ended up being a 4 day EEG. They started her at a high dose of Keppra and then lowered it. A week later she was still having them and thats when they through in the Topamax. Now they upped the dose on the Topamax. She goes back to the neuro in January and thats probably when they'll start the new med. I'm confused of why it's gonna take 3 drugs to stop the seizures. They do give the seizure meds at the same time. One is 3 times a day and the other is twice a day. They set an alarm so they can make sure she takes it at the right time. They have to take her to Vanderbilt because its the only ped. neurology we have. So its not possible to get a second opinion. All the neuros work together, go to meetings together. So they won't go against what another has said to do. I'll tell them about doing a hair test. Thanks Amy > > > > A friend of mine has a daughter (almost 5 years old) that is on 2 > > types > > > of seizure meds (topamax and keppra). The doctor is gonna throw in a > > > third one med if the 100mg of topamax doesn't work. She has absence > > > seizures. Before she started the meds she was having around 90- 100 > > > seizures a day (even in her sleep). The meds have helped some, she's > > > not having as many now but the ones she does have are longer. > > > > > EIther this isn't the whole story or the doctor is incompetent. > > They're just handing out whatever the drug rep gave them last, no rhyme nor reason to it. > > Topamax is at least indicated for absense seiures, Keppra is not. > > Generally it is not appropriate to tank the kid up on meds and keep adding them, they try > one, if it doesn't cut it, try another, only if they fail several one at a time do you go to > combinations. > > The old ethosuximide (trade name Zarontin) is the most effective one for absence > seizures. If that is all she is having then ethosuximide is where most competent > neurologists would start. > > Absense is where she just freezes for a few seconds to maybe a minute, no movements, > no flopping, no falling down, no vocalization. Unless it lasts more than about 10 seconds > the girl won't be aware it is happening. She'll be pretty addle brained until it is controlled. > > All antiseizure medications have a lot of side effects and problems, and there is very little > OTC or diet you can do instead. This is why the doc's try to maintain people on one drug > if at all possible. > > A big problem is the parents (and in adults, patients) have a lot of fear and that leads to > very bad decisionmaking and overreliance on the doctor if he puts on a good act. > > If they have an EEG (should be easy to get a seizure recorded from your description) they > should have a very clear idea of what is happening. Absence is very distinctive on the EEG > and very easy to differentiate from any other kind of seizure. The doctors should have > told them something along the lines of it is a " generalized absence epilepsy, " or used > phrases that involved simple vs. complex, generalized vs. focal or partial, and absence vs. > tonic, atonic, tonic-clonic. If the doctor didn't tell the mother this she needs to get a copy > of the neurologist's interpretive report for the EEG from her daughter's chart and find out - > those characterizations tell you which drugs are expected to work or not to work. The > doctor is supposed to make a good diagnostic discrimination of what kind of seizure it is > in order to pick the right drug. Since she continues to have seizures one should wonder if > he DID pick the right drug. > > Neurology is generally an area where the quality of care is abysmal. The parents really > need to take a lot of responsibility or their daughter's life is going to be ruined. Seizures > beget seizures - this has been known for 2500 years. She needs to be medicated > adequately to ensure her brain has a chance to recover and become less prone to seizures. > > BTW, one very important factor is compliance with the medication. It has to be given each > time, every time, exactly as directed. The parents need to take the responsibility to ensure > this really happens. Tasking the girl or another child to do it is not going to work. This is > often a problem. > > Otherwise yes every time 've heard of someone who has seizures getting a hair test they > do turn out to be toxic. However they do need to be on adequate medication to control > seizures before they can chelate. > > Andy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2007 Report Share Posted December 16, 2007 By law they are entitled to a second independent opinion and should demand it of their insurance company. They need to get the neurologist's interpretive report on the EEG. A lot of pediatricians and family practitioners do treat epilepsy because it is common and long lasting, maybe they can find someone not scared of their shadow who will help figure out if this is going out of control (which it sounds like it is) or if she is a one in a thousand case. The normal thing to do would be if it is just absence to try either depakote or zarontin and if it didn't work, try the other, withdrawing the first. If it is absence with other stuff then depakote would be a first choice. Lamictal probably would be OK in either situation but since that is 'probably,' it would be tried third by someone being conservative.The neuros should have a better reason for not doing it this way than " those are old drugs, the new drugs are better. " The new drugs are new and as with all new drugs the problems aren't widely known yet. Really it all hinges on what the EEG showed, and the fact they kept taking it does suggest it was interesting and informative. Andy > > Her daughter had a 24 hour EEG done in October. Well, it ended up > being a 4 day EEG. They started her at a high dose of Keppra and then > lowered it. A week later she was still having them and thats when > they through in the Topamax. Now they upped the dose on the Topamax. > She goes back to the neuro in January and thats probably when they'll > start the new med. > > I'm confused of why it's gonna take 3 drugs to stop the seizures. > > They do give the seizure meds at the same time. One is 3 times a day > and the other is twice a day. They set an alarm so they can make sure > she takes it at the right time. > > They have to take her to Vanderbilt because its the only ped. > neurology we have. So its not possible to get a second opinion. All > the neuros work together, go to meetings together. So they won't go > against what another has said to do. > > I'll tell them about doing a hair test. > > Thanks > > Amy Quote Link to comment Share on other sites More sharing options...
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