Mouth Sores and High Fever with Ethosuximide

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Hello everybody, my daughter is 7 and she started taking Ethoduximide 3 months ago for her absence seizures.

When she hit the 3ml twice a day she developed mouth sores, a sore throat, and high fever. Her blood work was good, so the neuro had us continue. She had the same thing happening soon after I increased the dose to 5 ml and now at 6 ml twice a day. I am very worried, because of the serious side effects of blood dyscrasya and drug induce lupus, but her blood work again was ok, and the neuro want us to continue. She also says that it's not the medicine making her sick, which to us is actually so obvious because it happened each time right after the dose increase. She got sick 3 times in 1 month and a half. She is usually an healthy kid.

I kept taking her to the pediatric clinic and the drs were siding with the neuro, until finally, this last time, one admitted that there is a connection with Ethosuximide. But she also said that she understand why the neuro want us to stick to it, the drug seems to work and it's the best for her type. Valproic acid and Lamotrigine have more side effects.

Did anyone have the same side effects? I can't find anything like this anywhere.

Thank you for reading.

Comments

I understand your delima.

Submitted by Anonymous on Tue, 2014-11-25 - 17:32

I understand your delima. When neurologists put a patient on a medication they already have seen or have patients on it. The doctors know the level needed to do the jobs it is intended to do. It takes 2-3 weeks for the body to get used to th medication and levels are builting up in her system. When there is an increase again it takes th body time to adjust to the increase. As she grown she does need to be checkes because in many kids their dosage is also set with their weight. With me I was diagnosed at 13I had have what became seizures for a few years earlier. Absence and focal seizures look like the person is day dreaming and Ihad teachers writting me up for day dreaming me. Adjustments need to be made while she is starting the medication. After taking it for 2-3 weeks adjustments to the dosage is generally done. The next adjustment can be made in 1-3 mnths. With me because I have a good relationship with Doc Ican call in and get those if needed with a phone call and no need for an appointment. Amy Jo put it right yo ucan look up the theraputic levels and the maximum dosages. I had nen=ver looked at those and was wondering if my keppra. He laughed telling me w can add anothe rmedication but I am taking the MAX of keppra. Oh and the company making it also makes a medicine they wanted to test to see if it worked with keppra. Welll I was one of the test dummies and It does work. have been living and dealing with epilepsy for 50+ years. I know about falling asleep a half a block down the road eitherr on the way to work or home. I have made it a point to help people understand medications. I work in drugg studies for new medicatios. By doing that Medications are better and help control the seizures better. I haven't changed the type of epilepsy I was diagnoosed with.. I know th medications I was taking. I know the tired feeling. I know what it feeling like to have been one of the first in the class room and because of epilepsy I went down a few knoches. I have tried to help people being diagnosed today learn and deal with what they have, Unless they di that them may as well toss the towel in the ring. It can be a fight and it does take parents to stand tall and assist but not to the point they are doing nothing but giving directions. Mom's and Dad's are great but you will not have peers looking at you and questioning your actions. You will not have friends say EEEWWW I don't want to be arround him any more. I say that because I have heard it. You can stand on the sideline and cheer which does help. But most of the steps to take will be hers. I am not saying I am perfect. I am anything but perfect. I am saying I learned by my mistakes. I would not be here today if it weren't for my Mothers prayers. I went into status epilepticus and was brought out but before Moom got there I went right back in. All I know is I came too on a bed in the hospital 3 days later. I learned from the head of the hospital that they had done everything they could and basically given up. He followed that with "Split a hair a thousand times and thats how close you were to seeing Gods eyes. We gave up but the lady at the foot of your bed never did. Parents do have a roll and it is to steer and guid your sons and adaughters th right direction. There is no difference in the girls next door and your child. Your child has epilepsy which is more common then Parkenson, ALZ and strokes combined. If you look on a corner count 25 people. One of them will have a seizure disorder at some point in their lives I hope this helps Joe

I understand your delima. When neurologists put a patient on a medication they already have seen or have patients on it. The doctors know the level needed to do the jobs it is intended to do. It takes 2-3 weeks for the body to get used to th medication and levels are builting up in her system. When there is an increase again it takes th body time to adjust to the increase. As she grown she does need to be checkes because in many kids their dosage is also set with their weight. With me I was diagnosed at 13I had have what became seizures for a few years earlier. Absence and focal seizures look like the person is day dreaming and Ihad teachers writting me up for day dreaming me.  Adjustments need to be made while she is starting the medication. After taking it for 2-3 weeks adjustments to the dosage is generally done. The next adjustment can be made in 1-3 mnths. With me because I have a good relationship with Doc Ican call in and get those if needed with a phone call and no need for an appointment. Amy Jo put it right yo ucan look up the theraputic levels and the maximum dosages. I had nen=ver looked at those and was wondering if my keppra. He laughed telling me w can add anothe rmedication but I am taking the MAX of keppra. Oh and the company making it also makes a medicine they wanted to test to see if it worked with keppra. Welll I was one of the test dummies and It does work. have been living and dealing with epilepsy for 50+ years. I know about falling asleep a half a block down the road eitherr on the way to work or home. I have made it a point to help people understand medications. I work in drugg studies for new medicatios. By doing that Medications are better and help control the seizures better. I haven't changed the type of epilepsy I was diagnoosed with.. I know th medications I was taking.  I know the tired feeling. I know what it feeling like to have been one of the first in the class room and because of epilepsy I went down a few knoches. I have tried to help people being diagnosed today learn and deal with what they have, Unless they di that them may as well toss the towel in the ring. It can be a fight and it does take parents to stand tall and assist but not to the point they are doing nothing but giving directions. Mom's and Dad's are great but you will not have peers looking at you and questioning your actions. You will not have friends say EEEWWW I don't want to be arround him any more. I say that because I have heard it. You can stand on the sideline and cheer which does help. But most of the steps to take will be hers. I am not saying I am perfect. I am anything but perfect. I am saying I learned by my mistakes. I would not be here today if it weren't for my Mothers prayers. I went into status epilepticus and was brought out but before Moom got there I went right back in. All I know is I came too on a bed in the hospital 3 days later.  I learned from the head of the hospital that they had done everything they could and basically given up. He followed that with "Split a hair a thousand times and thats how close you were to seeing Gods eyes. We gave up but the lady at the foot of your bed never did. Parents do have a roll and it is to steer and guid your sons and adaughters th right direction. There is no difference in the girls next door and your child. Your child has epilepsy which is more common then Parkenson, ALZ and strokes combined. If you look on a corner count 25 people. One of them will have a seizure disorder at some point in their lives I hope this helps Joe

I understand your delima. When neurologists put a patient on a medication they already have seen or have patients on it. The doctors know the level needed to do the jobs it is intended to do. It takes 2-3 weeks for the body to get used to th medication and levels are builting up in her system. When there is an increase again it takes th body time to adjust to the increase. As she grown she does need to be checkes because in many kids their dosage is also set with their weight. With me I was diagnosed at 13I had have what became seizures for a few years earlier. Absence and focal seizures look like the person is day dreaming and Ihad teachers writting me up for day dreaming me. Adjustments need to be made while she is starting the medication. After taking it for 2-3 weeks adjustments to the dosage is generally done. The next adjustment can be made in 1-3 mnths. With me because I have a good relationship with Doc Ican call in and get those if needed with a phone call and no need for an appointment. Amy Jo put it right yo ucan look up the theraputic levels and the maximum dosages. I had nen=ver looked at those and was wondering if my keppra. He laughed telling me w can add anothe rmedication but I am taking the MAX of keppra. Oh and the company making it also makes a medicine they wanted to test to see if it worked with keppra. Welll I was one of the test dummies and It does work. have been living and dealing with epilepsy for 50+ years. I know about falling asleep a half a block down the road eitherr on the way to work or home. I have made it a point to help people understand medications. I work in drugg studies for new medicatios. By doing that Medications are better and help control the seizures better. I haven't changed the type of epilepsy I was diagnoosed with.. I know th medications I was taking. I know the tired feeling. I know what it feeling like to have been one of the first in the class room and because of epilepsy I went down a few knoches. I have tried to help people being diagnosed today learn and deal with what they have, Unless they di that them may as well toss the towel in the ring. It can be a fight and it does take parents to stand tall and assist but not to the point they are doing nothing but giving directions. Mom's and Dad's are great but you will not have peers looking at you and questioning your actions. You will not have friends say EEEWWW I don't want to be arround him any more. I say that because I have heard it. You can stand on the sideline and cheer which does help. But most of the steps to take will be hers. I am not saying I am perfect. I am anything but perfect. I am saying I learned by my mistakes. I would not be here today if it weren't for my Mothers prayers. I went into status epilepticus and was brought out but before Moom got there I went right back in. All I know is I came too on a bed in the hospital 3 days later. I learned from the head of the hospital that they had done everything they could and basically given up. He followed that with "Split a hair a thousand times and thats how close you were to seeing Gods eyes. We gave up but the lady at the foot of your bed never did. Parents do have a roll and it is to steer and guid your sons and adaughters th right direction. There is no difference in the girls next door and your child. Your child has epilepsy which is more common then Parkenson, ALZ and strokes combined. If you look on a corner count 25 people. One of them will have a seizure disorder at some point in their lives I hope this helps Joe

If I recall correctly,

Submitted by rightsactivist on Sun, 2014-11-30 - 21:09

If I recall correctly, ethosuximide is a mere-sibling to methosuximide (aka "Celontin"). Am I correct, there? IF SO,...Methosuximide has a unique thing about it; which is where the blood-level means merely nothing; zilch. I don't know how - or why - this is, but it basically means nothing, whether it's high or low, compared to its alleged "normal" levels. I don't recall whether the individual patient then has such considerable fluctuations in each monthly, semi-annual, or annual blood checks; but I simply remember that the numbers were merely meaningless. However,... since I'm talking about Meth~, while you're talking about Eth~, I am not certain whether or not this same concept pertains. Good luck.