8 year old various medicines - losing help

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Hi all, need advice from your experience. Son diagnosed with partial complex seizures at the age of 4 on 2013. The 1st two years child neurologist put him on trileptal(oxcarbazepine) and it was under control for 2 years. The medicine was stopped after 2 years on 2015 however the seizures relapsed immediately. Doctors advised to continue on trileptal however the 2015, 2016 it was never under control and had repeated seizures mainly during sleep time atleast 5-6 times in a month. Then doctors tried lamotrigine and it was giving him severe tremors for the full body and we tried sodium valproate in both these medications it was not under control. Levipil was tried and it increased the seizures even more... Right now our family is going through immense stress due to this uncontrolled seizures and the poor little child is suffering due to side effects. Every change in medicine takes 2-7 weeks and that time is totally stressful and full anxiety for us.. Currently the doctor wants to go back again on trileptal and sodium valproate combination and we are worried like hell... Can some body shared what worked very well for your 7-8 year old so that we can get some idea on how to take this further along with the child neurologist.

Comments

so all our kids are

Submitted by Amy Jo on Wed, 2017-08-09 - 13:13

so all our kids are completely different - trileptal helped our child but not completely even at very high doses (cps were infrequent but occurred on or off meds), lamotrigine currently controls the generalized seizures that started later (but we started it to help with partials), and our child had a bad reaction to keppra although it works great for many others. we know now (years after initial diagnosis) that the epilepsy is genetic but even similar genetics can be expressed differently and seizure control can vary. how much do you know about the cause of the epilepsy?how many doctors are you working with? is your child seen at a major pediatric hospital? are any of them pediatric epileptologists? an epileptologist is usually recommended if seizures are or become difficult to control. seeing an epileptologist is statistically correlated with better seizure control and a well ranked pediatric hospital just has better resources.how possible is going on a ketogenic diet, has your child's doc mentioned other approaches like diet?

Amy Jo thanks for the reply.

Submitted by SV on Thu, 2017-08-10 - 05:39

Amy Jo thanks for the reply. I have been following your replies in other threads and was hoping you would answer me.We are working with epileptologist with major pediatric hospital only. The reason for the seizures are not known. Only EEG shows epileptic spikes however the MRI that we did couple of times shows no abornormality. No family history of epilepsy as well. Doctors have not recommended any diet suggestions particularly ketogenic diet. We are interested to try that if possible. What makes our sons case little complicated is the side effects of the medicines he takes. All the medicines like triloptal, lamictal, sodium valproate gives him hand tremors and facial twiching and that makes his life miserable at this young age. We could not stand to see him suffer. If we increase the medicines then its the side effects otherwise when we lower the medicines then he starts to get cps.On the other hand I want to ask about the coginitive development ? I am worried it might affect him not develop mentaly well with good cognition. So far he is little oriented and irritated but we are concerned about the mental development... right now we feel/worry that he might be immature for his age.. Do you have any advices here ?

Well, it sounds like you don

Submitted by Amy Jo on Thu, 2017-08-10 - 19:04

Well, it sounds like you don't think going back to the other drug combo sounds promising. Sometimes docs have some reasons for their approaches and I would mention your concern and ask for more info. I would also suggest you work out a systematic plan with the doc, e.g. if you do retry the combo put some guidelines in place on when to stop that course and then have some flexible follow up plans for after that. Which all begs some more questions...How much do you ask the doc about other medication options, maybe trying some of the less common drugs, vns, or diet? Understand where you think the downsides of side effects outweigh the seizures that would be controlled so you can communicate that to the doc.Diet approach could be trying MAD before keto. With diet one might be able to get control on same/lower dose of meds - really depends and doesn't work for everyone.There's no clear cut answers, you will still have to try more things (with enough of a try to really know). I don't know if a second opinion with another epileptologist is called for but often at some point, a second look at what's going on and the approaches is helpful.OK - some statements follow... cognitive issues can be from epilepsy, other underlying conditions or medications. Cognitive issues from epilepsy might resolve if seizures are controlled but not always. Sometimes cognitive issues for epilepsies that one grows out of can go away, but not always. SO... what to do? First you need some evaluation of his current state. In the US they would do a neuropsych evaluation. There might be suggestions from an evaluation which could help the person cope/adjust. We've also seen a developmental pediatrician (started long before epilepsy) who works in neurodevelopmental dept and often he isn't able to fix cognitive issues - it just helps to understand where one is. He can recommend therapies that might help specific situations and he's excellent with a huge range of kids. With our child he was pretty surprised at how much a surgery could impact a child and was surprised how well some other things we did worked - now he sings praises about the neurosurgeon although at the time he was surprised I didn't take his advice (on surgery no less) over the surgeon's advice (seriously!). A lot of what we did to help our child was work with their issues on our own. There was no therapy where we lived at the time when our child could hear but never heard anything notable - her hearing worked but something wasn't wired normally. I had to teach her to pay attention to what was going on around her by leveraging off her interests (she was 2-3yo then). When she wouldn't jump, we got extra special shoes (that we could not find when we moved back to the states) because her balance issues were holding her back. There are still issues just not obvious to anyone who doesn't know what they are looking at. I gotta say that family providing an enriching environment tailored to a child's needs is a goodt way to support the child going forward. That isn't going to fix a functional issue, just provides some extra options.

Well, it sounds like you don't think going back to the other drug combo sounds promising. Sometimes docs have some reasons for their approaches and I would mention your concern and ask for more info. I would also suggest you work out a systematic plan with the doc, e.g.  if you do retry the combo put some guidelines in place on when to stop that course and then have some flexible follow up plans for after that. Which all begs some more questions...How much do you ask the doc about other medication options, maybe trying some of the less common drugs, vns, or diet? Understand where you think the downsides of side effects outweigh the seizures that would be controlled so you can communicate that to the doc.Diet approach could be trying MAD before keto. With diet one might be able to get control on same/lower dose of meds - really depends and doesn't work for everyone.There's no clear cut answers, you will still have to try more things (with enough of a try to really know). I don't know if a second opinion with another epileptologist is called for but often at some point, a second look at what's going on and the approaches is helpful.OK - some statements follow... cognitive issues can be from epilepsy, other underlying conditions or medications. Cognitive issues from epilepsy might resolve if seizures are controlled but not always. Sometimes cognitive issues for epilepsies that one grows out of can go away, but not always. SO... what to do? First you need some evaluation of his current state. In the US they would do a neuropsych evaluation.  There might be suggestions from an evaluation which could help the person cope/adjust.  We've also seen a developmental pediatrician (started long before epilepsy) who works in neurodevelopmental dept and often he isn't able to fix cognitive issues - it just helps to understand where one is. He can recommend therapies that might help specific situations and he's excellent with a huge range of kids. With our child he was pretty surprised at how much a surgery could impact a child and was surprised how well some other things we did worked - now he sings praises about the neurosurgeon although at the time he was surprised I didn't take his advice (on surgery no less) over the surgeon's advice (seriously!). A lot of what we did to help our child was work with their issues on our own. There was no therapy where we lived at the time when our child could hear but never heard anything notable - her hearing worked but something wasn't wired normally. I had to teach her to pay attention to what was going on around her by leveraging off her interests (she was 2-3yo then). When she wouldn't jump, we got extra special shoes (that we could not find when we moved back to the states) because her balance issues were holding her back. There are still issues just not obvious to anyone who doesn't know what they are looking at. I gotta say that family providing an enriching environment tailored to a child's needs is a goodt way to support the child going forward. That isn't going to fix a functional issue, just provides some extra options.

Well, it sounds like you don't think going back to the other drug combo sounds promising. Sometimes docs have some reasons for their approaches and I would mention your concern and ask for more info. I would also suggest you work out a systematic plan with the doc, e.g. if you do retry the combo put some guidelines in place on when to stop that course and then have some flexible follow up plans for after that. Which all begs some more questions...How much do you ask the doc about other medication options, maybe trying some of the less common drugs, vns, or diet? Understand where you think the downsides of side effects outweigh the seizures that would be controlled so you can communicate that to the doc.Diet approach could be trying MAD before keto. With diet one might be able to get control on same/lower dose of meds - really depends and doesn't work for everyone.There's no clear cut answers, you will still have to try more things (with enough of a try to really know). I don't know if a second opinion with another epileptologist is called for but often at some point, a second look at what's going on and the approaches is helpful.OK - some statements follow... cognitive issues can be from epilepsy, other underlying conditions or medications. Cognitive issues from epilepsy might resolve if seizures are controlled but not always. Sometimes cognitive issues for epilepsies that one grows out of can go away, but not always. SO... what to do? First you need some evaluation of his current state. In the US they would do a neuropsych evaluation. There might be suggestions from an evaluation which could help the person cope/adjust. We've also seen a developmental pediatrician (started long before epilepsy) who works in neurodevelopmental dept and often he isn't able to fix cognitive issues - it just helps to understand where one is. He can recommend therapies that might help specific situations and he's excellent with a huge range of kids. With our child he was pretty surprised at how much a surgery could impact a child and was surprised how well some other things we did worked - now he sings praises about the neurosurgeon although at the time he was surprised I didn't take his advice (on surgery no less) over the surgeon's advice (seriously!). A lot of what we did to help our child was work with their issues on our own. There was no therapy where we lived at the time when our child could hear but never heard anything notable - her hearing worked but something wasn't wired normally. I had to teach her to pay attention to what was going on around her by leveraging off her interests (she was 2-3yo then). When she wouldn't jump, we got extra special shoes (that we could not find when we moved back to the states) because her balance issues were holding her back. There are still issues just not obvious to anyone who doesn't know what they are looking at. I gotta say that family providing an enriching environment tailored to a child's needs is a goodt way to support the child going forward. That isn't going to fix a functional issue, just provides some extra options.