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My son is 6 months old. He began having seizures

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Posted on Mon, 18 Mar 2019
Question: My son is 6 months old. He began having seizures when he was 2 months old, 10 days after his two month vaccinations. His first hospital visit they did a spinal tap and MRI which came back normal. They also performed an EEG (after giving him medication to stop the seizures) which showed mild activity. They did metabolic testing which came back normal. We also did genetic testing through Invitae which came back negative. During his episodes usually his eyes roll to the side or up, his body gets stiff, his arms go up, sometimes he has chewing motions with his mouth or twitches. He doesnt lose consciousness or stop breathing. They typically last 10-30 seconds. He takes 1.9ml of Keppra 3 times per day and 2ml of Trileptal 2 times per day. We also give him CBD oil once per day. His seizures have gone from 30 per day to 10-15 per day since being on the medication but have not shown improvement since. We are at a loss. His doctors seem unconcerned and as first time parents we are very concerned for our son. I%E2%80%99m looking for recommendations on where to go from here.
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Follow up: Dr. Dariush Saghafi (0 minute later)
My son is 6 months old. He began having seizures when he was 2 months old, 10 days after his two month vaccinations. His first hospital visit they did a spinal tap and MRI which came back normal. They also performed an EEG (after giving him medication to stop the seizures) which showed mild activity. They did metabolic testing which came back normal. We also did genetic testing through Invitae which came back negative. During his episodes usually his eyes roll to the side or up, his body gets stiff, his arms go up, sometimes he has chewing motions with his mouth or twitches. He doesnt lose consciousness or stop breathing. They typically last 10-30 seconds. He takes 1.9ml of Keppra 3 times per day and 2ml of Trileptal 2 times per day. We also give him CBD oil once per day. His seizures have gone from 30 per day to 10-15 per day since being on the medication but have not shown improvement since. We are at a loss. His doctors seem unconcerned and as first time parents we are very concerned for our son. I%E2%80%99m looking for recommendations on where to go from here.
doctor
Answered by Dr. Dariush Saghafi (9 hours later)
Brief Answer:
These seizures appear to be benign and likely shall remit with time

Detailed Answer:
Good morning. Thank you for your query and sorry that you are going through these concerns regarding your baby. I've read the characterization of your son's ictal spells and you've done a very good job not only describing what is happening during the episodes but also the type of workup that your doctors have performed.

I'm assuming from your description that your son is otherwise normal in his behaviors and bodily movements (i.e. playful, babbling, curious about things, etc.) when he is not having his spells? You've not mentioned anything about his not having reached normal milestones for his age such as not trying to sit or sitting which babies start doing around 6 months, rolling side to side, crawling movements (which may not begin until a bit later..this is normal).

You've also stated that in his workup they've done both metabolic AND genetic testing which have come back normal. This is a very good thing since most epileptic syndromes which are NOT benign are rooted in certain known genetic defects which can be tested for....also, EEG recordings in these children can show very specific electric sorts of defects that are recognized by the epileptologist. Apparently, this is not the case with your son.

There is literature on seizures that occur around the time of vaccinations, however, these seizures are generally induced by the vaccination in children with specific genetic defects (which apparently he is cleared) as well as children who show sensitivity with their seizures to increased temperatures (usually >38.5 degrees body temperature). You've not said anything about these details. Also, medication has dramatically reduced the frequency of his episodes by 50% or more and the duration of the episodes is short (<1 min) without any seemingly untoward prolonged POSTICTAL period. Also, you've not mentioned PROGRESSION of the seizures or conversion into other forms of seizures such as generalized tonic clonic where there are rhythmic HARD jerking movements of all the limbs, and you've not mentioned anything about any REGRESSION in his milestone achievements which I named a few above.

Therefore, in such a situation I will tell parents that the imaging and other laboratory studies have failed to disclose any of the well known or even subtle genetic defects that are responsible for seizure types that are not benign and look forward to controlling these seizures in the future and likely entirely resolving them as he gets older. Some parents will keep diaries of events for several weeks or several months and when they notice that the nature, frequency, and duration of the seizures is not changing significantly they will feel more comfortable that things are going to be fine.

You'll also want to be making sure that you follow all your doctor's instructions with respect to taking the medication on time and not giving him any other medications that may be prescribed by other doctors UNTIL CLEARED by the one who his controlling his seizure medications. Sometimes there are interactions even with things as simple as antibiotics which can inactivate seizure medications.

I believe that your doctor may have a plan with the medications to slowly increase or even change them in the future but right now I believe things are on the right track and you do not need to do very much more in the way of testing or changing medications. Being vigilant and keeping track of important information is a good thing so that you can discuss progress of your child. But I believe the data at hand is positive and portends a good outcome in the future.

And so, if I've provided useful or helpful information to your questions could you do me the favor of CLOSING THE QUERY along with a few POSITIVE words of feedback and maybe even a 5 STAR rating if you feel it is deserving? I would be interested in getting some updated information on how your son is progressing over the course of the next few weeks or few months if you can remember to drop me line.

You can always reach me here at: www.bit.ly/drdariushsaghafi for this or other questions. Cheers!

This query has utilized a total of 29 minutes of professional time in research, review, and synthesis for the purpose of formulating a response.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
doctor
Answered by Dr. Dariush Saghafi (0 minute later)
Brief Answer:
These seizures appear to be benign and likely shall remit with time

Detailed Answer:
Good morning. Thank you for your query and sorry that you are going through these concerns regarding your baby. I've read the characterization of your son's ictal spells and you've done a very good job not only describing what is happening during the episodes but also the type of workup that your doctors have performed.

I'm assuming from your description that your son is otherwise normal in his behaviors and bodily movements (i.e. playful, babbling, curious about things, etc.) when he is not having his spells? You've not mentioned anything about his not having reached normal milestones for his age such as not trying to sit or sitting which babies start doing around 6 months, rolling side to side, crawling movements (which may not begin until a bit later..this is normal).

You've also stated that in his workup they've done both metabolic AND genetic testing which have come back normal. This is a very good thing since most epileptic syndromes which are NOT benign are rooted in certain known genetic defects which can be tested for....also, EEG recordings in these children can show very specific electric sorts of defects that are recognized by the epileptologist. Apparently, this is not the case with your son.

There is literature on seizures that occur around the time of vaccinations, however, these seizures are generally induced by the vaccination in children with specific genetic defects (which apparently he is cleared) as well as children who show sensitivity with their seizures to increased temperatures (usually >38.5 degrees body temperature). You've not said anything about these details. Also, medication has dramatically reduced the frequency of his episodes by 50% or more and the duration of the episodes is short (<1 min) without any seemingly untoward prolonged POSTICTAL period. Also, you've not mentioned PROGRESSION of the seizures or conversion into other forms of seizures such as generalized tonic clonic where there are rhythmic HARD jerking movements of all the limbs, and you've not mentioned anything about any REGRESSION in his milestone achievements which I named a few above.

Therefore, in such a situation I will tell parents that the imaging and other laboratory studies have failed to disclose any of the well known or even subtle genetic defects that are responsible for seizure types that are not benign and look forward to controlling these seizures in the future and likely entirely resolving them as he gets older. Some parents will keep diaries of events for several weeks or several months and when they notice that the nature, frequency, and duration of the seizures is not changing significantly they will feel more comfortable that things are going to be fine.

You'll also want to be making sure that you follow all your doctor's instructions with respect to taking the medication on time and not giving him any other medications that may be prescribed by other doctors UNTIL CLEARED by the one who his controlling his seizure medications. Sometimes there are interactions even with things as simple as antibiotics which can inactivate seizure medications.

I believe that your doctor may have a plan with the medications to slowly increase or even change them in the future but right now I believe things are on the right track and you do not need to do very much more in the way of testing or changing medications. Being vigilant and keeping track of important information is a good thing so that you can discuss progress of your child. But I believe the data at hand is positive and portends a good outcome in the future.

And so, if I've provided useful or helpful information to your questions could you do me the favor of CLOSING THE QUERY along with a few POSITIVE words of feedback and maybe even a 5 STAR rating if you feel it is deserving? I would be interested in getting some updated information on how your son is progressing over the course of the next few weeks or few months if you can remember to drop me line.

You can always reach me here at: www.bit.ly/drdariushsaghafi for this or other questions. Cheers!

This query has utilized a total of 29 minutes of professional time in research, review, and synthesis for the purpose of formulating a response.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Dariush Saghafi (1 hour later)
Thank you so much for your detailed response. As far as his development goes, I do feel like he is falling behind. He doesn%E2%80%99t roll over in either direction or hold himself up with his arms during tummy time. He also still needs quite a bit of assistance when sitting. He does smile, babble, and repeat a few sounds. It%E2%80%99s hard knowing if the mentioned are caused by some sort of delay or if it%E2%80%99s a side effect of his medication. I do believe it causes him some dizziness and loss of coordination. Would you recommend trying any other medications? I know with his age we are so limited on what he can take. I just feel like after being on these two different medications for 4 months he shouldn%E2%80%99t be having seizures daily, let alone 10 per day.
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Follow up: Dr. Dariush Saghafi (0 minute later)
Thank you so much for your detailed response. As far as his development goes, I do feel like he is falling behind. He doesn%E2%80%99t roll over in either direction or hold himself up with his arms during tummy time. He also still needs quite a bit of assistance when sitting. He does smile, babble, and repeat a few sounds. It%E2%80%99s hard knowing if the mentioned are caused by some sort of delay or if it%E2%80%99s a side effect of his medication. I do believe it causes him some dizziness and loss of coordination. Would you recommend trying any other medications? I know with his age we are so limited on what he can take. I just feel like after being on these two different medications for 4 months he shouldn%E2%80%99t be having seizures daily, let alone 10 per day.
doctor
Answered by Dr. Dariush Saghafi (15 hours later)
Brief Answer:
Medication can be a DOUBLE EDGED SWORD.

Detailed Answer:
Thank you for your clarifications regarding your son's development.

I understand that you don't feel he is reaching some of the milestones, however, your observation that some of these possible delays could be due to medication effect and/or the fact he has multiple seizures daily could be at least 1 possible explanation to what's going on. By the same token, if it's the seizure activity that is the problem and if the seizure activity were FULLY CONTROLLED by way of giving higher doses of the medications he's on or by adding or changing medications then, there is the chance that your son will become less interactive, appear to be more delayed in reaching milestones and that would not be a good thing either.

There is another detail aside from DIRECT medication effects that could be potentially "slowing" your son down and that is the fact that TRILEPTAL is known to interact with CBD which tends to lower the effectiveness of the CBD. This means for the dosage of CBD being administered the overall therapeutic effect may only be a fraction of what the doctor expects it to be so you could bring this detail up to the doctor to see if he would consider either RAISING the dose of the CBD which in turn could gain more control over the seizures, or by lowering the dose of the TRILEPTAL which would cause less METABOLISM of the CBD by the liver and allow the given dose to have a BETTER OVERALL EFFECT on his seizures.

If it were my choice to make on my patient I would reduce the TRILEPTAL by a conservative percentage WHILE KEEPING STRICT TRACK of the seizures episodes both by NUMBER a day as well as CHARACTERISTICS. You may wish to even videotape at least several a day to see if anything new comes to light or REDUCES/ELIMINATES which could be an indicator of the effectiveness of the treatment regimen.

There is no significant interaction between KEPPRA and TRILEPTAL or KEPPRA and CBD.

Your doctor should direct any changes of medications but usually I try and stay with the same regimen of medications for at least 3 months at a time in order to give the body a full chance to acclimate and affect the CNS circuits fully. Remember, he is also growing at a relatively rapid rate so it is possible that dosages of his medications will need to be adjusted over time to correct for decreasing concentrations in the blood as he gains weight and size.

Of course, I also don't know whether or not your doctor has done bloodwork on your son to check serum concentrations to see if he is in the therapeutic ranges for all the medications he's been given.

Bottom line is this...I would not rush to CHANGE medications so much as I would try and tweak the ones that are already onboard as well as make sure that medication levels have been checked both at peak and trough levels so that optimal dosing of each drug can be achieved. Talk with your doctor and they will explain how to go about getting both peak and trough levels of his medications.

And there is one other option I would consider in your son if things don't pan out in the next 6-8 weeks after making any tweaks. I happen to believe very strongly in the concept of trying to use as FEW medications as possible to treat epileptic patients and really try and MAXIMIZE 1 or 2 medications before going to addons. I don't know if your doctor has already followed this path.

However, what I mean is that would recommend you have a discussion with the doctor to find out what they think about reducing or eliminating the other medications in favoring of just RAISING the dose of a SINGLE agent and to continue to escalate the dose of the medication until otherwise a significant side effect that interferes with his normal functioning occurs OR the seizures come under good control.

But I do agree that trying to get the frequency of his seizures or at least the DURATION of the ones he's having is definitely going to be in his best interest as opposed to continuing with 10+ per day which will tend to interfere with normal growth and cognitive development that in the end may or may not play catch up when he does outgrow the seizures that are felt to be benign.

Once again, if I've provided useful or helpful information to your questions would you consider CLOSING THE QUERY along with writing just a few POSITIVE words of feedback on my responses and perhaps, even a 5 STAR rating if you feel it is deserving?

Don't forget to keep me in the loop with his progress and especially I'd be interested if the doctor agrees to some sort of medication regimen change. Please write me at: www.bit.ly/drdariushsaghafi and give me a heads up soon. I'd like to see that he's improving with these seizures (PRETTY SURE your description is pointing us to a benign epileptic disorder that will only be transient).

This query has utilized a total of 61 minutes of professional time in research, review, and synthesis for the purpose of formulating a response.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
doctor
Answered by Dr. Dariush Saghafi (0 minute later)
Brief Answer:
Medication can be a DOUBLE EDGED SWORD.

Detailed Answer:
Thank you for your clarifications regarding your son's development.

I understand that you don't feel he is reaching some of the milestones, however, your observation that some of these possible delays could be due to medication effect and/or the fact he has multiple seizures daily could be at least 1 possible explanation to what's going on. By the same token, if it's the seizure activity that is the problem and if the seizure activity were FULLY CONTROLLED by way of giving higher doses of the medications he's on or by adding or changing medications then, there is the chance that your son will become less interactive, appear to be more delayed in reaching milestones and that would not be a good thing either.

There is another detail aside from DIRECT medication effects that could be potentially "slowing" your son down and that is the fact that TRILEPTAL is known to interact with CBD which tends to lower the effectiveness of the CBD. This means for the dosage of CBD being administered the overall therapeutic effect may only be a fraction of what the doctor expects it to be so you could bring this detail up to the doctor to see if he would consider either RAISING the dose of the CBD which in turn could gain more control over the seizures, or by lowering the dose of the TRILEPTAL which would cause less METABOLISM of the CBD by the liver and allow the given dose to have a BETTER OVERALL EFFECT on his seizures.

If it were my choice to make on my patient I would reduce the TRILEPTAL by a conservative percentage WHILE KEEPING STRICT TRACK of the seizures episodes both by NUMBER a day as well as CHARACTERISTICS. You may wish to even videotape at least several a day to see if anything new comes to light or REDUCES/ELIMINATES which could be an indicator of the effectiveness of the treatment regimen.

There is no significant interaction between KEPPRA and TRILEPTAL or KEPPRA and CBD.

Your doctor should direct any changes of medications but usually I try and stay with the same regimen of medications for at least 3 months at a time in order to give the body a full chance to acclimate and affect the CNS circuits fully. Remember, he is also growing at a relatively rapid rate so it is possible that dosages of his medications will need to be adjusted over time to correct for decreasing concentrations in the blood as he gains weight and size.

Of course, I also don't know whether or not your doctor has done bloodwork on your son to check serum concentrations to see if he is in the therapeutic ranges for all the medications he's been given.

Bottom line is this...I would not rush to CHANGE medications so much as I would try and tweak the ones that are already onboard as well as make sure that medication levels have been checked both at peak and trough levels so that optimal dosing of each drug can be achieved. Talk with your doctor and they will explain how to go about getting both peak and trough levels of his medications.

And there is one other option I would consider in your son if things don't pan out in the next 6-8 weeks after making any tweaks. I happen to believe very strongly in the concept of trying to use as FEW medications as possible to treat epileptic patients and really try and MAXIMIZE 1 or 2 medications before going to addons. I don't know if your doctor has already followed this path.

However, what I mean is that would recommend you have a discussion with the doctor to find out what they think about reducing or eliminating the other medications in favoring of just RAISING the dose of a SINGLE agent and to continue to escalate the dose of the medication until otherwise a significant side effect that interferes with his normal functioning occurs OR the seizures come under good control.

But I do agree that trying to get the frequency of his seizures or at least the DURATION of the ones he's having is definitely going to be in his best interest as opposed to continuing with 10+ per day which will tend to interfere with normal growth and cognitive development that in the end may or may not play catch up when he does outgrow the seizures that are felt to be benign.

Once again, if I've provided useful or helpful information to your questions would you consider CLOSING THE QUERY along with writing just a few POSITIVE words of feedback on my responses and perhaps, even a 5 STAR rating if you feel it is deserving?

Don't forget to keep me in the loop with his progress and especially I'd be interested if the doctor agrees to some sort of medication regimen change. Please write me at: www.bit.ly/drdariushsaghafi and give me a heads up soon. I'd like to see that he's improving with these seizures (PRETTY SURE your description is pointing us to a benign epileptic disorder that will only be transient).

This query has utilized a total of 61 minutes of professional time in research, review, and synthesis for the purpose of formulating a response.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Dariush Saghafi (25 minutes later)

That is very good to know! I feel like the Trileptal has been causing problems since the start. When we first began giving it to him he would scream (as if in pain) for an hour or more after his dose. He also began having a lot of reflux and constipation. He only has a dirty diaper every 7-10 days with lots of belly discomfort in between. Mother%E2%80%99s intuition tells me it is NOT a good medication for him. Every time I ask about switching it or taking him off it the Dr. says it%E2%80%99s one of our safest options. She said the alternative (can%E2%80%99t remember the name?) is an older drug with a lot of harsh side effects. Maybe I can convince her to at least decrease the Trileptal dosage and try to lean more on the CBD oil.
Every doctors appointment they do blood work which is good. Almost every time they have increased his dosage. He%E2%80%99s 6 months and weighs over 19 pounds. He sometimes gains 1/2-1 pound per week so keeping up with his growth has been hard.
Also, which specialist are you? I%E2%80%99m so sorry, I submitted the question to a few and I can%E2%80%99t seem to find your specialty listed.
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Follow up: Dr. Dariush Saghafi (0 minute later)

That is very good to know! I feel like the Trileptal has been causing problems since the start. When we first began giving it to him he would scream (as if in pain) for an hour or more after his dose. He also began having a lot of reflux and constipation. He only has a dirty diaper every 7-10 days with lots of belly discomfort in between. Mother%E2%80%99s intuition tells me it is NOT a good medication for him. Every time I ask about switching it or taking him off it the Dr. says it%E2%80%99s one of our safest options. She said the alternative (can%E2%80%99t remember the name?) is an older drug with a lot of harsh side effects. Maybe I can convince her to at least decrease the Trileptal dosage and try to lean more on the CBD oil.
Every doctors appointment they do blood work which is good. Almost every time they have increased his dosage. He%E2%80%99s 6 months and weighs over 19 pounds. He sometimes gains 1/2-1 pound per week so keeping up with his growth has been hard.
Also, which specialist are you? I%E2%80%99m so sorry, I submitted the question to a few and I can%E2%80%99t seem to find your specialty listed.
doctor
Answered by Dr. Dariush Saghafi (2 hours later)
Brief Answer:
I am a neurologist at your service-

Detailed Answer:
Thank you for your return message and additional clarifications of your son's condition. I am clearly all for the concept of reducing your child's seizure episodes to ZERO if possible. The question is whether or not that can be done with the minimum amount of medication possible so that he suffers the LEAST # of adverse effects and along with that the LEAST # of drug to drug interactions. Let's take a quick look at the major side effects of each of the drugs your son is taking.

1. Keppra- Sleepiness. Weakness. Dizziness. Infection. Nasal congestion. Decreased appetite. Irritability. Becoming aggressive.

2. Trileptal- Dizziness, drowsiness, tiredness; balance or coordination problems; nausea, vomiting; tremors or shaking; double vision; or. rash.

SERIOUS side effects of Trileptal: Swelling of your lips, face, eyes, or tongue. Trouble swallowing or breathing. A skin rash. Hives. Fever. Swollen glands. Fever that comes and goes. Sores around the mouth or eyes

3. CBD- Anxiety. Changes in appetite. Changes in mood. Diarrhea. Dizziness. Drowsiness. Dry mouth. Nausea.


As you can see a side effect that is common to all 3 medications is DROWSINESS and DIZZINESS. The combination of these drugs then, can potentially amplify these effects. Notwithstanding he continues to have multiple episodes daily (albeit dramatically less frequent than in the past). Still, I am in agreement with any effort that may allow pulling back on any one of these agents in order to add efficacy to the triple medication regimen while iminimizing side effects.

Hence, my suggestion to reduce TRILEPTAL to see if CBD can be a bit more effective in controlling seizures at the dose it is being given. If you think your son consistently responds that negatively to the medication then, I would honestly move to simply remove the drug in favor of something else. I suspect that the doctor is referring to a drug called VALPROIC ACID (VPA) or Depakote and in fact, it is an older drug but it is very effective. However, I agree that its side effects could be more difficult to tolerate, but it is a very good drug for the type of seizures your son is having.

I notice you mention that they are regularly increasing the dosage of his medications on every visit but as I said above TRILEPTAL is particularly notorious for kickstarting the HEPATIC ENZYMATIC SYSTEMS into higher than normal gear which means that the other drugs are likely being metabolized out faster from these enzymes and losing serum concentration. I predict that reducing trileptal will also stop them from raising his medications on every visit.....can't wait to see if that works out....I'd reduce the trileptal by at least 20% in total daily dose...maybe even as high as 33% decreased.

I would also talk to the doctor about considering other medications that are also in the OLDER classification of drugs but are clearly time tested, used in the infant and pediatric populations, and VERY EFFECTIVE when dose properly and titrated.

One is PHENOBARBITAL CLOBAZAM, ETHOSUXIMIDE, PRIMIDONE, and ZONEGRAN. There are more of course, however, these are older medications (less costly than newer drugs if that's a concern at all) and I'll tell you that they do for work work to control these types of seizures. Of course, they ALL have side effects but it may be the case that once he's been taking a solid course of medication or medications for a period of time that he can eventually be weaned off. Remember, we do expect these to get better.

Again, my first instinct would be to treat your son with something like KEPPRA and to simply maximize that dosage out on a twice daily regimen. I realize it's being given 3x/day but due to the drug's pharmacology it is likely best used as a TWICE daily drug.

See how any of these suggestions might sit with the doctor in charge. Also, don't forget to keep track of baby's episodes on a diary because it is very important not only to log the seizure events but also WHEN you make certain changes to the medication regimen or when it is time to titrate or step up the dosages on his medications. If you keep track of the dosing increases or decreases then, you'll be more easily able to analyze what is happening as a result of these changes.

And in case you missed my comment at the beginning of the response:

I am a neurologist at your service- Happy to make your acquaintance. I am not a PEDIATRIC NEUROLOGIST nor EPILEPTOLOGIST but I've had my fair amount of both rotations as well as a few pediatric cases in my career so I am conversant with certain "easier" topics...and for me, EPILEPSY is one of those things that I enjoy talking about and helping out with...in both adults and children.

Please don't forget to CLOSE THE QUERY if I've given you good information regarding your son and would you be so kind as to write just a few nice words of feedback on the responses along with a 5 STAR rating if you feel so moved?

Please let me know his progress. Please write me at: www.bit.ly/drdariushsaghafi and to let me know how things are going. I'd like to see that he's improving with these seizures.

This query has utilized a total of 117 minutes of professional time in research, review, and synthesis for the purpose of formulating a response.


Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
doctor
Answered by Dr. Dariush Saghafi (0 minute later)
Brief Answer:
I am a neurologist at your service-

Detailed Answer:
Thank you for your return message and additional clarifications of your son's condition. I am clearly all for the concept of reducing your child's seizure episodes to ZERO if possible. The question is whether or not that can be done with the minimum amount of medication possible so that he suffers the LEAST # of adverse effects and along with that the LEAST # of drug to drug interactions. Let's take a quick look at the major side effects of each of the drugs your son is taking.

1. Keppra- Sleepiness. Weakness. Dizziness. Infection. Nasal congestion. Decreased appetite. Irritability. Becoming aggressive.

2. Trileptal- Dizziness, drowsiness, tiredness; balance or coordination problems; nausea, vomiting; tremors or shaking; double vision; or. rash.

SERIOUS side effects of Trileptal: Swelling of your lips, face, eyes, or tongue. Trouble swallowing or breathing. A skin rash. Hives. Fever. Swollen glands. Fever that comes and goes. Sores around the mouth or eyes

3. CBD- Anxiety. Changes in appetite. Changes in mood. Diarrhea. Dizziness. Drowsiness. Dry mouth. Nausea.


As you can see a side effect that is common to all 3 medications is DROWSINESS and DIZZINESS. The combination of these drugs then, can potentially amplify these effects. Notwithstanding he continues to have multiple episodes daily (albeit dramatically less frequent than in the past). Still, I am in agreement with any effort that may allow pulling back on any one of these agents in order to add efficacy to the triple medication regimen while iminimizing side effects.

Hence, my suggestion to reduce TRILEPTAL to see if CBD can be a bit more effective in controlling seizures at the dose it is being given. If you think your son consistently responds that negatively to the medication then, I would honestly move to simply remove the drug in favor of something else. I suspect that the doctor is referring to a drug called VALPROIC ACID (VPA) or Depakote and in fact, it is an older drug but it is very effective. However, I agree that its side effects could be more difficult to tolerate, but it is a very good drug for the type of seizures your son is having.

I notice you mention that they are regularly increasing the dosage of his medications on every visit but as I said above TRILEPTAL is particularly notorious for kickstarting the HEPATIC ENZYMATIC SYSTEMS into higher than normal gear which means that the other drugs are likely being metabolized out faster from these enzymes and losing serum concentration. I predict that reducing trileptal will also stop them from raising his medications on every visit.....can't wait to see if that works out....I'd reduce the trileptal by at least 20% in total daily dose...maybe even as high as 33% decreased.

I would also talk to the doctor about considering other medications that are also in the OLDER classification of drugs but are clearly time tested, used in the infant and pediatric populations, and VERY EFFECTIVE when dose properly and titrated.

One is PHENOBARBITAL CLOBAZAM, ETHOSUXIMIDE, PRIMIDONE, and ZONEGRAN. There are more of course, however, these are older medications (less costly than newer drugs if that's a concern at all) and I'll tell you that they do for work work to control these types of seizures. Of course, they ALL have side effects but it may be the case that once he's been taking a solid course of medication or medications for a period of time that he can eventually be weaned off. Remember, we do expect these to get better.

Again, my first instinct would be to treat your son with something like KEPPRA and to simply maximize that dosage out on a twice daily regimen. I realize it's being given 3x/day but due to the drug's pharmacology it is likely best used as a TWICE daily drug.

See how any of these suggestions might sit with the doctor in charge. Also, don't forget to keep track of baby's episodes on a diary because it is very important not only to log the seizure events but also WHEN you make certain changes to the medication regimen or when it is time to titrate or step up the dosages on his medications. If you keep track of the dosing increases or decreases then, you'll be more easily able to analyze what is happening as a result of these changes.

And in case you missed my comment at the beginning of the response:

I am a neurologist at your service- Happy to make your acquaintance. I am not a PEDIATRIC NEUROLOGIST nor EPILEPTOLOGIST but I've had my fair amount of both rotations as well as a few pediatric cases in my career so I am conversant with certain "easier" topics...and for me, EPILEPSY is one of those things that I enjoy talking about and helping out with...in both adults and children.

Please don't forget to CLOSE THE QUERY if I've given you good information regarding your son and would you be so kind as to write just a few nice words of feedback on the responses along with a 5 STAR rating if you feel so moved?

Please let me know his progress. Please write me at: www.bit.ly/drdariushsaghafi and to let me know how things are going. I'd like to see that he's improving with these seizures.

This query has utilized a total of 117 minutes of professional time in research, review, and synthesis for the purpose of formulating a response.


Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Answered by
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Dr. Dariush Saghafi

Neurologist

Practicing since :1988

Answered : 2474 Questions

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My son is 6 months old. He began having seizures

My son is 6 months old. He began having seizures when he was 2 months old, 10 days after his two month vaccinations. His first hospital visit they did a spinal tap and MRI which came back normal. They also performed an EEG (after giving him medication to stop the seizures) which showed mild activity. They did metabolic testing which came back normal. We also did genetic testing through Invitae which came back negative. During his episodes usually his eyes roll to the side or up, his body gets stiff, his arms go up, sometimes he has chewing motions with his mouth or twitches. He doesnt lose consciousness or stop breathing. They typically last 10-30 seconds. He takes 1.9ml of Keppra 3 times per day and 2ml of Trileptal 2 times per day. We also give him CBD oil once per day. His seizures have gone from 30 per day to 10-15 per day since being on the medication but have not shown improvement since. We are at a loss. His doctors seem unconcerned and as first time parents we are very concerned for our son. I%E2%80%99m looking for recommendations on where to go from here.