question about Keppra

[purplepurple]

Hi everybody, I am Rennay. new here. My son is 12, has been diagonosed with Partial seizure last December and started Kappra from mid of Januay this year. Just up his meds from 500 mg to 750mg today due to his seizure the day befor yesterday.

Last Dr appointment, which was a month and half ago, I asked the doctor that if my son need do some tests like blood test or Vitamin D difficeincy test ect on in order to make sure if he has right doze level or if there is any side effect. She said no because Keppar will not cause the problem....

Sinc etoday on the phone, her nurse forward her confrimation to up the meds. I am wondering if we really need request any test in order to make sure everything is right. I do know patients who take other anti-e medications will go through regular check.

Can you share your experience and thoughts?

Many thanks,

 

[masterjen]

Some medications require that certain blood levels (such as liver enzymes) be checked periodically, and others do not. Not all medications affect levels of the various enzymes in the body, and some will affect one type of enzyme and not another. It is largely based on how a particular medication is processed by the body. Some medications are processed by the liver, and that is why some people need liver enzymes checked occasionally. Still others have previously known diseases or deficiencies, and they need to have certain blood levels checked that the average person on the same medication would not need to have checked.

Also some medications need to be at a certain therapeutic level (and not above) so this is another reason blood levels are checked. But not all drugs have normative blood level values, and establishment of "therapeutic level" is based on what works for an individual without adverse side effects.

Many anti-seizure medications, like Keppra, have been around long enough that researchers have been able to establish an average amount of a given medication that is required to provide therapeutic benefit. Some people can achieve benefit below this range, and some need to go slightly above.

If you are concerned about certain vitamin and mineral levels in your son, by all means have them checked, but it doesn't mean they will need to be continually checked. I hope your son has a pediatric epileptologist that he sees, as he/she will be familiar with the effects of anti-seizure medications on a young person.

 

[purplepurple]

Thank you for your detailed reply.

We saw the neurologist in Feb which is 3 weeks after my son starts Keppra. And at that time, she says there is no need to schedule an appt, and she will see us in a year.

Last Tuesday when my son had this break through seizure, we went to ER and the oncall doctor up his meds to 750 md/twice daily. And 2 days after, her nurse called me and confirmed the medication. But still have not scheduled anything for him. from their point of view, it is not urgent.

This morning my son had 2 seconds lips numbness again at school. I wanted to pick him up from school but he insisted he is fine.

The nurse did mention that "lips numbness" is more like aura. Any body have the experience about what is the indication about having the "aura"?

I really wish I went to medical school when I chose my career. Then I do not need experience like right now. Thanks,

 

[masterjen]

The lip numbness is a tough call. It can be an aura for some people, but it can also be a medication side effect. For me the keppra/tegretol combo I was on caused numbness/tingling in my tongue that started about 1 1/2 hours after I took the dose and then lasted for about an hour. It was a very consistent thing that lasted for about 6 weeks, and then occurred only sporadically after that. One's metabolism at a given time can change, so some side effects can be present some days and not others.

Just my opinion, but a doctor not wanting to see a newly diagnosed epilepsy patient for a year is not very good medical practice. Will you at least be given regular contact with the doctor's nurse? Is the nurse easy to get a hold of? I hope the doctor your son sees is a pediatric neurologist, or better yet a pediatric epileptologist. You owe it to yourself and your son to see someone who specializes in epilepsy in children. At the very least, I would encourage you see a pediatric epileptologist should the medication not help and/or the seizures get worse. Hope I'm not sounding too nasty; I just know from my own experience and from reading of the experiences of some others here that an epileptologist really is the best way to go.

 

[purplepurple]

Thank you, Masterjen. She is a pediatric neurologist in our Children's Hospital and sepcialize in Epilepsy and Migraine. Her nurse can repond me back in 48 hours via email or voicemail.

We are in Canada. It's very hard to see a specialist and waiting period is very long. When we get to see her, she is very patient and nice. But it is hard to get to see her.

I am wondering where I can get second opinion since we can not make an appt with another specialist by ourselves. I think myabe it is realtively easier in States.

 

[purplepurple]

I think I need ask my family doctor to order test form for my son to check all vitamin/ mineral level first. In Feb, when I talk to my son's specialis , she said its unlessary to test since Keppra does not have such side effect. But now I think I need to find out if there is any difficiency in any of them. Right?

The lip numbness is a tough call. It can be an aura for some people, but it can also be a medication side effect. For me the keppra/tegretol combo I was on caused numbness/tingling in my tongue that started about 1 1/2 hours after I took the dose and then lasted for about an hour. It was a very consistent thing that lasted for about 6 weeks, and then occurred only sporadically after that. One's metabolism at a given time can change, so some side effects can be present some days and not others.

Just my opinion, but a doctor not wanting to see a newly diagnosed epilepsy patient for a year is not very good medical practice. Will you at least be given regular contact with the doctor's nurse? Is the nurse easy to get a hold of? I hope the doctor your son sees is a pediatric neurologist, or better yet a pediatric epileptologist. You owe it to yourself and your son to see someone who specializes in epilepsy in children. At the very least, I would encourage you see a pediatric epileptologist should the medication not help and/or the seizures get worse. Hope I'm not sounding too nasty; I just know from my own experience and from reading of the experiences of some others here that an epileptologist really is the best way to go.

 

[masterjen]

I'm from Canada, too, and I can relate to it taking a long time to get in to see a specialist that's for sure. Took almost a year for me to get to see the seizure specialist after seeing a neurologist! But now that I am "in" she makes a point of seeing me every 3-4 months even though I've now been a patient of hers for over 2 years. If it were me (and it was, at one point lol) I would go back to the GP and say you are seeking a second opinion and would like a referral to another seizure specialist - even if it does mean a long wait. As a general rule, I feel that a child should be seen by a children's doctor, but it is possible that non-pediatric epileptologist could be helpful for at least the second opinion. Just a thought!
As for the blood testing for vitamin and mineral deficiencies, you know your son best, and if you have a sense something is not right definitely push to have things checked. Even your GP could arrange for a general panel of blood tests that would look for nutrient deficiencies.

 

[purplepurple]

thank you again. For the blood test thing, what I want to find out is, current level and future level cause I need have a record to compare. My son is general healthy prior to the seizure. Now his growth and development is still fine, but keep in mind, that he just started his meds in mid of Jan this year. So I will go to my family doctor and ask for those testing.

For the second doctor's opinion, would the first doctor mind if my GP referred to me with another one.....I know there is one called best doctor's program which my insurance company provides, have you ever trying to use this one?

 

[masterjen]

Hi, purplepurple
I'm not familiar with the best doctor's program - sorry. But as for asking your GP for a referral to get a second opinion, it should not be an issue. If it sounds like it is one, just say something like "It is my son's health we are talking about and not mine, he is only 12 and I want to do the absolute best thing in the world for him and be sure the right thing is being done".
You could also throw in there that it would ease your own mind to get a second opinion - doctors often will respect that, too, especially if the doctor is a parent.
As for the first specialist minding, she doesn't even need to know unless you choose to tell her at some point. You can request that your GP not inform her.
Let me know what you decide to do and how you make out!

 

[purplepurple]

i did mention to the neurologist requesting revist my son's situation and prescribiton. And her nurse responded back to me and said all the decision are reveiewed as a team per Protocol at the hospital. So they are confident about the diagonose and prescriobrion. and I just need wait to find or confrim the right meds/ doze for him.

I am going to see my family doctor this Friday and and I will ask her to order some tests for my son since he has taken the med for 4 months now.

Thank you,

 

[pinkfloyd]

Not sure if blood test gets you high mileage, given therapeutic range is wide (12-46 µg/mL).
EEG/MRI (if not already done) might work to identify to identify source, but everyone has different thoughts about the efficacy vs cost/pain.
Given his age(12), you might also want to think more long term also
(a) qty vs weight change, for which 1 yr is too long
(b) stress (school, teen) coupled with Kepprage needs high level of support from parents
(c) balancing concern vs independence or growing up "normal"

 

[purplepurple]

Thank you, pinkfloyd. He did one eeg and MRI last July after his first seizure occurred.
The health system in Canada is kind of strange. The neuroloist said she won't order another EEG or MRI for now because she does not think it is necessary.But then I was able to ask my family doctor to order it for me. My family doctor ordered the MRI next month, and I will ask her to order another EEG for my son as well. All the result will be forwarded to the neurologist as well.

 

[purplepurple]

I found this on website.As part of your epilepsy treatment, your doctor may order a complete blood count (CBC). A CBC helps the doctor establish a baseline and can identify infections, allergies, and other abnormalities that may affect the choice of appropriate anticonvulsant medication(s) and help to monitor the possible drug-induced side effects in the future. The CBC measures (among other things):
The number of red blood cells (which carry oxygen from the lungs throughout the body)
The number of white blood cells (which fight infection)
Platelets (which help the blood clot in case of a injury or bleeding)
Hemoglobin (the substance in red blood cells that carries oxygen)
Hematocrit (the percentage of blood that is made up of red blood cells)
Mean corpuscular volume (size of the red blood cells)
Epilepsy and the Chemistry Panel

Another important blood test is known as a chemistry panel. This test includes an evaluation of sodium, potassium, and blood sugar levels. Kidney and liver function tests are also often included, in what is known as a complete metabolic panel. This test will help your doctor identify conditions such as electrolyte (such as sodium) imbalances, kidney or liver damage, and diabetes, which may either be causing your seizures or may affect the choice of the appropriate anticonvulsant medications prescribed for you (including the doses needed).

Epilepsy and Other Blood Tests

Your doctor may decide to run various other blood tests, including blood levels of medications you may be taking for seizure control. These tests are most often ordered when seizures continue to occur or when drug-induced side effects are suspected.

 

[pattid12]

Hi, my son 16 is also on Keppra. He has juvinille myoclonic seizures. He has been on meds for 1 year. As far as the blook goes, my son's liver came back a little high and his neuro suggests vitamin B6 to help with his moods. Which did work.