C/P: If you have a child taking Levetiracetam/Keppra....

[LMV]

Did they lose weight while taking it?  

 

*Yes, I did post this on the special needs board but since I got no responses I decided to open up to a wider audience.  I have also added a poll in case the added level of anonymity is helpful. *

[unsinkable]

My DD wasn't on it long enough. Within days of starting it, her seizures increased so much, the doc took her off it.

 

I hope you get some answers.

 

:grouphug:

[unsinkable]

And the general board and the high school board have people who "hang out" over there and don't come to this board.

 

Maybe try there, too?

 

or an epilepsy board, if epilepsy is what the keppra is for.

[Ali in OR]

Hmmm...interesting question. My 17 yo dd was on it several years, maybe preschool age to age 9. She takes other antiseizures--was weaned off Keppra when we added Depakote. Never really identified adverse issues while she was on Keppra, but she did have many years where it was hard to get her to eat. That goes back to when she was a baby, so it predated Keppra. I always thought the Topamax may have played a role in that since that is a stated side effect. She is definitely short-stature, probably low growth hormone but we don't treat it since she's a wheelchair kid and we have to carry her. She has eaten well at least the last 5 years, has been off Keppra maybe 8 years. All that to say, I guess I can't rule out that Keppra may have affected her appetite. She is still on Topamax and eats well now, so I may have been wrong on that one.

[LMV]

And the general board and the high school board have people who "hang out" over there and don't come to this board.

 

Maybe try there, too?

 

or an epilepsy board, if epilepsy is what the keppra is for.

 

She has been on the Keppra for about six weeks now.  Originally the thought was that she had a febrile seizure which presented with status.  I know it can happen that way but it is a whole lot more scary when it is your kid and you're standing there, right after working your own long and hard ED shift, watching one of your colleagues load fosphenytoin (and then Keppra because it didn't seem to be stopping with the fosphenytoin).  The seizure did stop after they loaded Keppra.  They extubated in the ED after the CT and the LP were done and she was awake. Partly because we were in the middle of one of those disastrous April storms when this happened her pediatrician admitted her locally rather than being transferred to the children's hospital.  The LP was negative. The blood cultures grew Strep. pneumoniae so antibiotics were continued and her pediatrician ordered an MRI which was normal and an EEG which was read by the pediatric neurologist and was not.  She went home on Keppra and with IV antibiotics.  

 

She has lost five pounds in comparison with a weight from a February visit.  Given her age and weight that is significant.  We have no idea if it is the Keppra and initially we (and to an extent her pediatrician) just figured she lost some ground when she was sick and she would get back on track.  But that isn't happening and we can't ignore this.  Her pediatrician repeated all the endocrine/metabolism screening labs and they look good.  So maybe it is the Keppra.  Or maybe we're seeing the beginning of early depression coming back but everything else we're seeing goes against that. She has a child psychiatry follow up appointment next week so we will get their opinion on all of this but I really don't think that is the answer.   Her pediatrician had talked to the neurologist about what he might want to switch her to instead but he feels that the Keppra is really the best option and doesn't want to mess with it unless we're sure that it is the problem. 

 

I know there are some case reports and series about weight loss with Keppra but looking at those it seems like there wasn't a clear causal link established to the Keppra so I really was just looking for some more anecdotal perspectives to guide my own gut I suppose. 

[Ali in OR]

I'm sorry you have to go through the whole seizure thing. In our 17 years of experience, there are always way more questions than answers. We always used to think we'd get it figured out at the next appointment and then we would leave with still more questions!

 

I would think if the issue is Keppra, the reason she would lose weight would be because it was suppressing her appetite. If it is a successful treatment for the seizures, I would be inclined to keep it and work on the appetite issues--eat highly caloric foods, etc. The path of trying to find the right meds can be frustratingly difficult and the consequences can be scary (unstoppable seizures, ER trips). I wouldn't want to go down that path if I didn't have to. Dd is on three antiseizures and still has seizures every couple of weeks. But it's a pretty stable pattern and we're more willing to live with it than to keep experimenting for something possibly better (but in our experience often worse).

[LostSurprise]

From what I've heard weight loss is a side effect, not one of the more common ones. Just because it isn't common, doesn't mean that it isn't what's happening now. Different people experience different things on medications, and with the mood/epilepsy drugs appetite suppression is a common side effect. It's definitely something our neuro has talked about when discussing this medication for our son because he has food issues. 

 

For a small child that's a lot of weight in 6 weeks. Definitely something to watch. 

 

 

[unsinkable]

LMV, that is tough.

 

I think Ali raises a good point, tho' about the struggle to find a med that works and balancing the side effects with seizure control. It's a tough call.

 

So this is her first med, right? And you haven't seen her seize except for the first incident when she was in status? Status is scary as hell, and coincidentally, that is how DD's seizures began. We found her in status one night.

 

If you're really worried, and this is the first med, I might ask for a change.

 

My DD is on four meds and it took soooo long to get her to an OK place. She actually had a big increase in frequency and that is why we added a fourth.

 

I'm sorry I'm not more helpful.

[LMV]

Thanks everyone for all of your experiences and insight!

 

She had the first seizure while I was working an ED shift and DH was home with all of the kids. She was fine that morning we had breakfast together as a family before I left. DH felt she had seemed ok throughout the day. She was actually playing in one of the playrooms with her older sister and our four year old.  DH was downstairs working on dinner when he heard screaming.  What he described sounded like a generalized seizure but from what her sister said about right before it might have actually had a focal start.

 

Yes, other than the Fosphenytoin they loaded in the ED, the Keppra is really her first and only medication.  The pediatric neurologist really thought that it was a febrile seizure but because she presented in status, and there was a question of an initial focal component, he agreed with her pediatrician's decision to order the MRI and EEG.  Once he saw the EEG he then decided that it was likely more an issue where the fever lowered the seizure threshold in the face of underlying epilepsy.  This is our foster daughter so there are some gaps in the family history (her maternal grandfather is still alive and involved in the girls' lives so we pretty much know the history of her maternal side of the family and we know some things about her father's side of the family as it came up in conversation with his son in law or if his daughter mentioned it) but we're hoping this is juvenile epilepsy which she may outgrow.  

 

I'm not sure I disagree with the neurologist that Keppra is likely to be the safest.  Most of the other anticonvulsants have some not insignificant risks and concerns as I'm sure, sadly, all of you know.  Obviously they have some pretty big benefits as well and seizures themselves are anything but safe so I guess sometimes you have to choose from the best of a bad set of options.  In that context, I suppose perhaps we and she are actually pretty lucky because the Keppra does seem to be working for her and I'm wary to mess with that.  

 

We've been working on trying to get more food into but she really seems to be full and not hungry.  She lost a lot of weight before she came to us but we've always thought that was a true food scarcity situation and then she was so depressed.  We managed to get the weight back on and then she started growing normally even when she was still in the midst of the whole depression fog.  She did have more interest in food after that finally lifted but she also had more interest in life in general and I think the two were related.  Life wise now she is actually doing well. She loves going to the farm and taking care of the sheep. Her reading ability has increased exponentially and she has developed a real love of books, being read to, or even reading to our youngest. She is planning her sixth birthday party (coming up later this month) and inviting friends.  

 

[kristen18]

It probably doesn't have anything to do with the appetite issue, but just wanted to let you know that our neurologist has us supplement with B6 because the drug depletes it. Some people have seen this help with mood/behavioral side effects.

[Whereneverever]

Keppra caused massive growth issues here- I had a 30 lb nearly seven year old. It's a popular first choice but you'll need to weigh out (no pun intended) if the growth issues are worth it.

[creekland]

My guy was using it (started seizures at age 16, so perhaps not a good comparison).  His appetite decreased and he might have lost a couple of pounds likely due to lack of appetite, but it did stop his seizures.  It also made him very tired. 

 

When he turned 18 he stopped taking it telling us he was 18 now and didn't have to do anything he didn't want to do.  It all worked well for a couple of months, but then the seizures returned.  His appetite never returned.  He still eats VERY little - esp for a teenage boy.  However, his BMI is at 50% for his height (he's short for his age), so he's doing ok I suppose.

 

I'll have to ask him what he's doing regarding Keppra now.  I'm honestly not sure, but I don't think he's had a seizure in the last month, so he may be just taking a smaller dose.  (He doesn't always tell us when he has seizures.  The last time I learned about it when his peers asked how he was doing after one.  Seizure?  What seizure?)

[LMV]

It probably doesn't have anything to do with the appetite issue, but just wanted to let you know that our neurologist has us supplement with B6 because the drug depletes it. Some people have seen this help with mood/behavioral side effects.

 

She is taking some additional supplemental pyridoxine.  The pediatric neurologist she is seeing says he prefers to use it with almost all anticonvulsants in almost all kids.  I'm generally one of those show me that my kid is actually deficient or show me some peer reviewed studies of benefit before we get into supplements.  In this case I don't think the strength of evidence is quite there but the risks are low since it is water soluble and will therefore not accumulate so we're going with it.  

[LMV]

Keppra caused massive growth issues here- I had a 30 lb nearly seven year old. It's a popular first choice but you'll need to weigh out (no pun intended) if the growth issues are worth it.

 

Thanks! I guess at the moment we're going with the Keppra, ensuring that we aren't missing some other explanation for the weight loss, and trying to ride this out.  She presented in status and my anecdotal (but I have other EM colleagues, and even some pediatrician and neurology colleagues who share similar anecdotal clinical views) clinical experience is that often status epilepticus events are escalatory so we're wary to change to something else and possibly risk a breakthrough seizure. 

[LMV]

My guy was using it (started seizures at age 16, so perhaps not a good comparison).  His appetite decreased and he might have lost a couple of pounds likely due to lack of appetite, but it did stop his seizures.  It also made him very tired. 

 

When he turned 18 he stopped taking it telling us he was 18 now and didn't have to do anything he didn't want to do.  It all worked well for a couple of months, but then the seizures returned.  His appetite never returned.  He still eats VERY little - esp for a teenage boy.  However, his BMI is at 50% for his height (he's short for his age), so he's doing ok I suppose.

 

I'll have to ask him what he's doing regarding Keppra now.  I'm honestly not sure, but I don't think he's had a seizure in the last month, so he may be just taking a smaller dose.  (He doesn't always tell us when he has seizures.  The last time I learned about it when his peers asked how he was doing after one.  Seizure?  What seizure?)

 

I'm really sorry your son is struggling with this.  I think the Keppra does make our darling child tired as well but she has always been a kid who needed a lot of sleep and she seems to do well as long as she gets to bed early and takes a nap after kindergarten or other activities.  Right now I guess we're just going to have to stick with the Keppra because it is working.

 

I hesitate to ask this and I'm really asking from a place of concern not judgment but is your son currently driving?  If his seizures are not controlled driving could be a fatal mistake for him or someone else.  

[creekland]

I hesitate to ask this and I'm really asking from a place of concern not judgment but is your son currently driving?  If his seizures are not controlled driving could be a fatal mistake for him or someone else.  

 

Yes, but his seizures are not typical seizures as he has a different form of epilepsy (JME).  He is driving with his doctor's knowledge - and hubby made sure his doctor knew what is going on with the meds and his decisions - so he isn't hiding that from her.

 

He can always tell when they are coming on and he never completely loses control as with most epilepsy types.

[Ottakee]

Disclaimer---_I am not a doctor...........and I don't even get to play one on the internet.

 

I chose it didn't affect weight which I don't think it does here.  My 18dd takes 1000mg of Keppra XR twice a day.  She is TINY at 4'10" and maybe 100 pounds.  But she has only been on Keppra for 3-4 years and was seeing an endo for size issues long before that----starting about 12 years ago.

 

If you need a different med, it might be worth asking about Lamictal.  It sounds scary but titrated up slowly and not used with Depakote the risks are far less.  I mention that as Lamictal also helps depression as well as seizures and you mention that depression was an issue this child is struggling with.

 

Many of the seizure meds are the top meds for mood disorders.  Not that mood disorders cause seizures or seizures cause mood disorders but rather that there is some connection in that the meds tend to hit both. 

 

We do the Lamictal as we needed a med to treat a mood disorder as well as seizures.

 

Does this child have any other signs of mitochondrial issues?  Just asking as I know you have seizures now, depression, history of low weight.  If there are other things going on it might be worth testing for.

[LMV]

Yes, but his seizures are not typical seizures as he has a different form of epilepsy (JME).  He is driving with his doctor's knowledge - and hubby made sure his doctor knew what is going on with the meds and his decisions - so he isn't hiding that from her.

 

He can always tell when they are coming on and he never completely loses control as with most epilepsy types.

 

If this is the case and you trust his neurologist or PCP then it erases most of my concerns.  I really wasn't trying to give you a hard time, I've just seen some of the fallout from other scenarios where this was not the case. 

[creekland]

If this is the case and you trust his neurologist or PCP then it erases most of my concerns.  I really wasn't trying to give you a hard time, I've just seen some of the fallout from other scenarios where this was not the case. 

 

No problem - I completely understand.  He was officially (and unofficially) not allowed to drive during the time period when they were figuring it all out - and for a few months afterward.  He's had an "off-med" EEG recently.  His neurologist assures us he's fine.  He's still not allowed to swim or scuba dive alone, but then again, even 100% healthy he's not allowed to do those (alone) for safety reasons.

 

[LMV]

Disclaimer---_I am not a doctor...........and I don't even get to play one on the internet.

 

I chose it didn't affect weight which I don't think it does here.  My 18dd takes 1000mg of Keppra XR twice a day.  She is TINY at 4'10" and maybe 100 pounds.  But she has only been on Keppra for 3-4 years and was seeing an endo for size issues long before that----starting about 12 years ago.

 

If you need a different med, it might be worth asking about Lamictal.  It sounds scary but titrated up slowly and not used with Depakote the risks are far less.  I mention that as Lamictal also helps depression as well as seizures and you mention that depression was an issue this child is struggling with.

 

Many of the seizure meds are the top meds for mood disorders.  Not that mood disorders cause seizures or seizures cause mood disorders but rather that there is some connection in that the meds tend to hit both. 

 

We do the Lamictal as we needed a med to treat a mood disorder as well as seizures.

 

Does this child have any other signs of mitochondrial issues?  Just asking as I know you have seizures now, depression, history of low weight.  If there are other things going on it might be worth testing for.

 

I'm praying there isn't an underlying bad disease that we're missing but I think if there is one it is more likely to be some kind of immunodeficiency syndrome than a mitochondrial disorderr (although I guess there is some overlap there as well).  Her pediatrician had done urine organic acids, along with CMP, CK, Phos, Mg, pyruvate, lactate, carnitine, zinc, and NH3 in the past.  It wasn't all normal but what was abnormal was likely due to the malnutrition and improved with better nutrition (and in some cases some additional supplements but these were stopped after she was better and she wasn't taking anything beyond a pediatric multivitamin and fluoxetine after September).  When she had the seizure her pediatrician repeated most of this plus Biotinidase and also sent CSF for lactate and pyruvate since they had done an LP in the ED to exclude meningitis.  At the time everything was repeated it all looked good.  She has not had either a muscle biopsy or skin biopsy but I don't think either would be helpful at this point.  

[Ottakee]

I'm praying there isn't an underlying bad disease that we're missing but I think if there is one it is more likely to be some kind of immunodeficiency syndrome than a mitochondrial disorderr (although I guess there is some overlap there as well).

 

My girls both have immune deficiencies as part of the mito issues.  One has IgA and IgG and the other one only IgG.

 

We did the muscle biopsy for one dd for the mito but just the blood tests for the other dd which was so much nicer.

 

The problem which mito (at least in our case) is we have the name, know what at least part of their issue is, but there really isn't treatment for it at this point.  We treat the symptoms (seizures, thyroid, mood issues, etc) and do supplements but nothing to really treat the mito itself.