Update post #1Hey, seizure moms

[Whereneverever]

Update- the doctor called and was very nice. He said it sounds like medication side effects, to add a mega dose of b6 for a week, and if that doesn't help we are going to wean her off and start trileptal.

 

 

Question on how this strikes you. My dd has had epilepsy since infancy. Tc and partial complex sx with generalization and two episodes of status epilepticus. Ct scans and MRI clear, she's had persistently abnormal eegs even while medicated.

 

Medication was upped about three months ago after a break through tc sx. She's been way, way, way over the top weepy ever since. She's recently started repeating herself- like having the same mini conversation multiple times in a row, getting the same answers from the other person, without appearing to remember that she just had the talk. She's also chewing her fingers absent mindedly.

 

I called her neuro and talked to the nurse practitioner. She said that unless we are seeing a seizure not to worry. The with the repeating herself and finger chewing since she's responsive she isn't seizing?

 

That doesn't sound right to me, at all.

 

I don't have good options for a second opinion, as it is I have to drive to the next state for a ped neuro.

 

Should I push for another EEG? Wwyd?

[Tap]

I don't know siezures but I do know medications...this sounds like medication side effects to me.  Call the pharmacist and ask him/her to look up if any of those are possible side effects from her meds.  

[unsinkable]

My DD walked around talking to herself angrily after a deppakote ( sp ) increase. it might be too much medication for her.

 

Can you get a blood level?

[Whereneverever]

She gets regular serum testing and her levels are high but within norms. She's on mono therapy and I don't understand why we keep sky rocketing dosing on one med vs doing a moderate dose on two. Her doc doesn't explain things very well. :/

[Whereneverever]

I don't know siezures but I do know medications...this sounds like medication side effects to me. Call the pharmacist and ask him/her to look up if any of those are possible side effects from her meds.

I totally think she's having medication side effects. She's on a dose adults can take and she's a 40 lb tiny child. Grrrr.

[Ottakee]

Kids can metabolize some meds much quicker than adults and need more. Even though the blood levels might be within OK limits it still might be too high for HER.

 

Really sounds like adding another medication might be more helpful than pushing the one to high levels.

 

Kids can also change quickly and suddenly a dose can be too high. We had that when we switched from name brand to generic Lamictal. A day or 2 later dd acted very drunk, fell and hit her head, couldn't walk, etc. Even though it was the same dose she metabolized it differently and was toxic.

 

I would seriously consider the peds neurologist out of state. Even if it is a 2 day trip, it could be very well worth the time. We didnt' start with a peds neurologist until my dd was 7 or 8 and I wish we could have started with him years earlier.

[sheryl]

It's summer...try another eeg (sleep deprived vs. ambulatory).   I agree with pp that it could be the side effect of not only the med, but the dose.  Meds react differently at different doses.  Could they go back to the dose she had before and "consider" another med to "pair" with it?

[sheryl]

It's summer...try another eeg (sleep deprived vs. ambulatory).   I agree with pp that it could be the side effect of not only the med, but the dose.  Meds react differently at different doses.  Could they go back to the dose she had before and "consider" another med to "pair" with it?

[LostSurprise]

That's almost definitely a side effect of the medication. Many seizure medications have effect on the mood, memory, or behavior. Would you mind telling us which medication? Its okay if you don't. Google side effects and look through the common and uncommon ones. There's no real need for an EEG unless you want to check and see if its worthwhile to live with the side effects. 

 

Everyone reacts differently to medication. A neuro. should know this. What works for one person does not work well for another. Advocate for a different medication if you feel the side effects are disruptive to your life. Realize that all medications have side effects. Is this just a minor thing and you weren't expecting it or is it affecting your daughter's calm and ability to interact with the world?

 

My son has a medication resistant form of epilepsy and if our neuro was not willing to make changes and try to find what worked we would have to go elsewhere. Some doctors are inherently more conservative in approach and that is not a good thing in some situations. This might be one of those situations. 

 

Be totally straightforward with your doctor. Do not let yourself be dissuaded from finding something better for your daughter. Often when we stand up the doctor realizes how serious the side effects are. If they don't, they are not the physician for your child. 

[Ottakee]

I agree with the above.

 

For example my 16dd who weighs 135# takes 62.5mg of Lamictal twice a day while 17dd who weighs only 95# takes 175mg of Lamictal twice a day. So smaller kid needs almost 3 times as much as bigger kid for same effect

[Whereneverever]

Kids can metabolize some meds much quicker than adults and need more. Even though the blood levels might be within OK limits it still might be too high for HER.Really sounds like adding another medication might be more helpful than pushing the one to high levels.Kids can also change quickly and suddenly a dose can be too high. We had that when we switched from name brand to generic Lamictal. A day or 2 later dd acted very drunk, fell and hit her head, couldn't walk, etc. Even though it was the same dose she metabolized it differently and was toxic.I would seriously consider the peds neurologist out of state. Even if it is a 2 day trip, it could be very well worth the time. We didnt' start with a peds neurologist until my dd was 7 or 8 and I wish we could have started with him years earlier.

 

 

We are seeing a ped neuro- we have to currently drive to the next state for it, is what I meant. I'm in Wyoming and we don't have a lot of specialists, so we have to drive to Colorado, and then all the way down to Denver to the Children's Hospital. The next closest clinic for a second opinion is Salt Lake City. :/

 

I really think the dosage is too high for her.

 

 

It's summer...try another eeg (sleep deprived vs. ambulatory).   I agree with pp that it could be the side effect of not only the med, but the dose.  Meds react differently at different doses.  Could they go back to the dose she had before and "consider" another med to "pair" with it?

  

 

She hasn't had an EEG in two years. Her doc keeps saying it wouldn't change the treatment plan, so he doesn't want to order one? I really want one, though.

 

That's what I'd like to see happen medication wise. I'd like to scale back to her previous dose and add something.

 

That's almost definitely a side effect of the medication. Many seizure medications have effect on the mood, memory, or behavior. Would you mind telling us which medication? Its okay if you don't. Google side effects and look through the common and uncommon ones. There's no real need for an EEG unless you want to check and see if its worthwhile to live with the side effects. 

 

Everyone reacts differently to medication. A neuro. should know this. What works for one person does not work well for another. Advocate for a different medication if you feel the side effects are disruptive to your life. Realize that all medications have side effects. Is this just a minor thing and you weren't expecting it or is it affecting your daughter's calm and ability to interact with the world?

 

My son has a medication resistant form of epilepsy and if our neuro was not willing to make changes and try to find what worked we would have to go elsewhere. Some doctors are inherently more conservative in approach and that is not a good thing in some situations. This might be one of those situations. 

 

Be totally straightforward with your doctor. Do not let yourself be dissuaded from finding something better for your daughter. Often when we stand up the doctor realizes how serious the side effects are. If they don't, they are not the physician for your child.

 

She's on Keppra. I know it's very well tolerated and has the lowest side effect profile of the AEDs. I do. She's been on it since she was a baby. It's only this newest dosage that really made her behavior intolerable.

 

She's the sweetest little girl and she is just not herself. We've waiting to see if it would get better after she adjusted and it hasn't.

 

Thanks, moms. It really helps to hear I'm not just being unreasonable.

[Whereneverever]

Ok, so I called and talked to one of the nurses. She listened to everything I was saying, including that I'm worried dd is having partial seizures, and said that if I see a tc to call, and otherwise another nurse will call Monday to check on me. They'll tell the doc and relay information then, but she didn't seem to think it was a big deal.

 

Wwyd, Hive?

[Jean in Newcastle]

Drive to a new doctor.  

[Whereneverever]

Drive to a new doctor.

I will if I have to, it's just the next nearest children's hospital is Salt Lake City and that's 500 miles away, and their neurology department is even smaller then Denver's. :(

[Jean in Newcastle]

I'm really surprised that a big place like Denver would only have one choice of a doctor.  Unless I'm really misunderstanding you?  Our Children's hospital here has not only a number of pediatric neurologists at the main branch but some closer to me in my small city.  I was able to pick and choose.  

 

(To be open - I haven't given seizure advice because I'm not a seizure mom, but we do go to a ped. neurologist as well as other specialists because dd has a rare tumor in her eye.)  It's just that this doctor doesn't seem to be really responsive to you.  We initially had that problem with our doctor and my husband went and camped down at the doctor's office until they would listen to us.  They tried to tell us that it was no big deal but we just wouldn't take that as an answer.  It is a big deal to us and our daughter and we wanted to make sure that we were getting accurate information that we could give an accurate response to the situation instead of either overreacting or underreacting.  In our case, it wasn't the doctor himself but the doctor's office staff so once we got things straightened out with him, we decided to stay.  But if it had been the doctor who was telling us that it was no big deal then we would have looked for a new doctor.  

[Whereneverever]

I'm really surprised that a big place like Denver would only have one choice of a doctor. Unless I'm really misunderstanding you? Our Children's hospital here has not only a number of pediatric neurologists at the main branch but some closer to me in my small city. I was able to pick and choose.

 

(To be open - I haven't given seizure advice because I'm not a seizure mom, but we do go to a ped. neurologist as well as other specialists because dd has a rare tumor in her eye.) It's just that this doctor doesn't seem to be really responsive to you. We initially had that problem with our doctor and my husband went and camped down at the doctor's office until they would listen to us. They tried to tell us that it was no big deal but we just wouldn't take that as an answer. It is a big deal to us and our daughter and we wanted to make sure that we were getting accurate information that we could give an accurate response to the situation instead of either overreacting or underreacting. In our case, it wasn't the doctor himself but the doctor's office staff so once we got things straightened out with him, we decided to stay. But if it had been the doctor who was telling us that it was no big deal then we would have looked for a new doctor.

Denver has a group of ped neuros that all work together. Your child gets assigned to one depending on who has openings and the type of neurological issue. They all have things they specialize in. The one she's seen is the one with the most experience in the types of seizures she's had. I could see if one of the other neuros who does epilepsy would see her, but I'm worried it is going to create some hard feelings.

 

I'm not sure if that is a reasonable concern or not.

[Jean in Newcastle]

Just saw your update.  It sounds like the doctor himself is really listening!  I'd address all concerns to him and not the NP from now on since it doesn't sound like she was.  

[Whereneverever]

Just saw your update. It sounds like the doctor himself is really listening! I'd address all concerns to him and not the NP from now on since it doesn't sound like she was.

Yes, I feel a lot better about it after he called!

[LostSurprise]

Is this the brand name Keppra or is it a generic version like Levetiracetam? Some of the generics are known to increase seizures. I know among LGS moms (my son has LGS), Keppra is known for mood swings and anxiety, sometimes rages too. 

 

In your situation I recommend that you request a second opinion inside the group. Does it matter if it rocks the boat? The worst thing that can happen is that the original neuro gets huffy about it or (if its an unhealthy group) you end up having to go to Salt Lake City anyway. Most neuro practices are not so tight that other doctors will take offense at a second opinion, and a good doctor will never feel bad that someone wants to talk to someone else too. You are not locked in to this one neuro. 

 

Call the doctor. Tell the nurse that your daughter is experiencing severe anxiety and mood changes since the increase of the Keppra at ____ date. You've been taking notes and the incidents are not decreasing (note if they are getting worse and list occurrences and dates if necessary). Tell her that you want another appointment now with either your current neuro or another in the practice to talk about drug changes. If you get no response (or appointment) immediately make an appointment with Salt Lake City. DO NOT TAKE NO FOR AN ANSWER. THIS IS YOUR BABY AND THIS IS IMPORTANT. 

 

I'm so sorry you have to deal with this, that we all have to deal with this. There almost always comes a time when we're forced to become advocates for our children with medical needs. No doctor can know our children as well as we do.  

 

 

[LostSurprise]

Yay for the update!

[Ottakee]

I agree with sticking with the NAME BRAND seizure meds if at all possible. The issue usually comes in that the generics have just slight variations between each other and pharmacies can order brand A one month and then brand C the next month, then brand B---so each month the meds are varying slightly. With many meds that isn't a problem, with seizure meds it can be a HUGE deal. The other ingredients in each pill can affect the absorption, etc.

[Whereneverever]

Yes, we always do name brand drugs for that reason. It's often the only name brand items in my home. :)

[Peach]

My son is on Keppra too and he had real problems with the variance in the generics. That was when I discovered that generics are not exact  copies but can vary considerably in the amount of the active drug in them. Bad news for those with seizures. I can relate though, I am in Montana. We had exactly two neuros that dealt with epislepsy. The first was two hours away (he's since moved away) and the second is three hours. The first one we say and were not at all impressed with his handling of our case and neither was our son's pediatrician. His doc here referred us to the other and things have been much better. 

 

ETA: I saw your update! Yes Keppra can cause mood issues, which we noticed immediately. We started our son on a high-potency B Complex every morning and it made a world of difference. Good luck!

[Whereneverever]

My son is on Keppra too and he had real problems with the variance in the generics. That was when I discovered that generics are not exact copies but can vary considerably in the amount of the active drug in them. Bad news for those with seizures. I can relate though, I am in Montana. We had exactly two neuros that dealt with epislepsy. The first was two hours away (he's since moved away) and the second is three hours. The first one we say and were not at all impressed with his handling of our case and neither was our son's pediatrician. His doc here referred us to the other and things have been much better.

 

ETA: I saw your update! Yes Keppra can cause mood issues, which we noticed immediately. We started our son on a high-potency B Complex every morning and it made a world of difference. Good luck!

How long did it take to notice a difference? I'm not seeing one yet.

[Peach]

It helped gradually, but after a couple of weeks, his mood had settled back down to the mostly sunny, easy-going kid we were used to. He still has his moments, but they are pretty rare.