Med advice

[Phils mum]

Hi, We need to change meds for my son (autistic non verbal 24yr old). He is on, keppra, tegretol & vimpat. Keppra is only med that has kept seizures at bay with the help of tegretol, we tried a yr ago to change to vimpat but seizures returned. Vimpat took the edge off the keppra rage, hence we have ended up on all 3 meds. His bloods show his levels to be high on tegretol so we can't up that. He began having partial seizures & odd episodes - we believe the vimpat is doing this, when I dropped the vimpat these went away but keppra rage kicked back in big time.
Saw neuro yesterday & having EGG next week but I really need to get him off keppra, does anybody have any advice on what would be a good alternative/med to try.
Sorry for long winded post, at my wits end, feel backed into a corner with meds he's on and don't know what to do for the best. So hard when it's a guessing game, he can't tell us how he's feeling.
Thanks,wonderful people & source of info on this forum

 

[masterjen]

One of the unfortunate things about anti-seizure medications is that there is no "best" alternative for one medication compared to another. Add to this the fact that it is not really known what the chemical mechanism is that allows Keppra (as well as some other medications) to have anti-seizure properties for some people. So unfortunately it's not likely your son's neurologist would be able to say, for example, that "medication xyz works in a way similar to Keppra but shouldn't cause rage issues, so let's try that one". The whole thing of finding the right medication is one big frustrating shot in the dark!

 

[acshuman]

Finding The Medication That Works Can Seem To Take Forever!

Phil's mum,
I have lived with E for 51 years now. I have seen many people be in too much of a hurry to find the best AED to treat their E or for someone close to them. With the vast number of ways that E can so itself in people's cases being the fastest to find a AED is NOT the best wat to find the best medication! Each and every AED can treat each case of E in a different way. This is why finding this AED can seem like someone is being used like a lab rat. The truth is that this is the best way for the doctors to do their job. Being impatient with how a person's doctor is checking out different AEDs by having his patient take them to observe the results can only lead to the different parties feeling negatively about what the other is doing and this is NOT going to help solve the patient's problem!
The patient and their loved ones need to work WITH the doctor not hinder the doctor's attempts. A person may hear about how someone else is getting great results from a certain AED, but that AED may just be one that will not work in thier own case! :twocents:

acshuman

 

[Zoe]

Hi, We need to change meds for my son (autistic non verbal 24yr old). He is on, keppra, tegretol & vimpat. Keppra is only med that has kept seizures at bay with the help of tegretol, we tried a yr ago to change to vimpat but seizures returned. Vimpat took the edge off the keppra rage, hence we have ended up on all 3 meds. His bloods show his levels to be high on tegretol so we can't up that. He began having partial seizures & odd episodes - we believe the vimpat is doing this, when I dropped the vimpat these went away but keppra rage kicked back in big time.
Saw neuro yesterday & having EGG next week but I really need to get him off keppra, does anybody have any advice on what would be a good alternative/med to try.
Sorry for long winded post, at my wits end, feel backed into a corner with meds he's on and don't know what to do for the best. So hard when it's a guessing game, he can't tell us how he's feeling.
Thanks,wonderful people & source of info on this forum

A couple of thoughts. You may want to start with talking to your pharmacist about the side effects of the anticonvulsant and how they are affecting your son. High homocysteine and anticonvulsant use are often found together.
The vitamins B12, B6, and folic acid are comonly used to help metabolize and break down homocysteine.

Below are links to some articles on this and a link to a discussion about this on CWE in 2008. I think it has links to articles as well.

if your doctor has not checked your son for some of the deficiencies, like b6 which may affect homocysteine levels, you may want to ask to have this done. Your pharmacist may have information on hand about how to deal with the drug side effects or have resources for you to check out.

One thing I have done is to get the name of the manufacturer of a drug I was having problems with (from the pharmacist) and asking her or him what can be done to deal with the side effects. The big drug companies I've contacted have medical officers who have a lot of in depth information about the meds that might help you.

Also, a Google search, "keppra autism" turned up a lot of links you may want to check out, including one by a parent whose child is about your son's age.
Another Google search "homocysteine autism" turned up some links you may find helpful too.
I hope these links turn up some good information and support for you and your son.

PDF]B-vitamin deficiency in patients treated with antiepileptic drugs.
by S Mintzer - ?2012 - ?Cited by 10 - ?Related articles
Jul 1, 2012 - The B vitamins folate, cyanocobalamin (B12), and pyridoxine (B6) ..... phenytoin (PHT), n=21 for carbamazepine (CBZ), n=9 for levetiracetam (LEV), n=13 for ... on serum levels of homocysteine, vitamin B12, folic acid and.
http://jdc.jefferson.edu/cgi/viewcontent.cgi?article=1047&context=neurologyfp

This research report is pretty technical but it discusses how some of the b vitamins can be used to
lower homocysteine levels which are often high in people with seizure disorders.

[PDF]Antiepileptic drugs, hyperhomocysteinemia and B-vitamins ...
by V Belcastro - ?2012 - ?Cited by 24 - ?Related articles
KEYWORDS. Homocysteine;. Folic acid;. B-vitamins;. Antiepileptic drugs;. Epilepsy. Summary ..... Conversely, lamotrigine and levetiracetam are devoid of this effect (Gidal ..... Of note is that the benefits of vitamins B12 and B6 alone on tHcy are ...
http://www.comobrain.it/wp-content/uploads/2013/04/Belcastro_Epi-Res-2012.pdf

Nutritional Depletion as a Side Effect of Anticonvulsant ...
Nutritional Depletion as a Side Effect of Anticonvulsant ...
www.coping-with-epilepsy.com › ... › Peer Support › The Library
Jan 6, 2008 - 20 posts - ?4 authors
Valporic acid in Epilim and Valpro can cause depletion of folic acid, carnitine, copper, selenium and zinc. ... Elevated homocysteine levels is now recognised as a serious independent ..... I am on Vitamin B complex for Keppra.
http://www.coping-with-epilepsy.com...-side-effect-anticonvulsant-medications-2199/

Jan 6, 2008 - 20 posts - ?4 authors
Valporic acid in Epilim and Valpro can cause depletion of folic acid, carnitine, copper, selenium and zinc. ... Elevated homocysteine levels is now recognised as a serious independent ..... I am on Vitamin B complex for Keppra.

 

[Suman]

Hi Phils mum,

Has your neurologist ever recommend Lamictal/Lamotrigine? Apparently it is well tolerated with minimal side effects. (It did not work for our son though!!)

-Take care

 

[Pingu]

Hi Phils mum,

Has your neurologist ever recommend Lamictal/Lamotrigine? Apparently it is well tolerated with minimal side effects. (It did not work for our son though!!)

-Take care

Didn't work for me either, I am being weaned off it onto Zonegran

 

[Phils mum]

Thanks

Thanks for all your advice and replies. We are working through things with the Drs, I was just wanting to get an insight as to what others have found useful in a similar situation. I know from reading others posts that keppra has been a problem for many and just wondered how they got on weaning off it.
Trying to learn what my son is feeling from being on these meds, you guys are my best source as he can't tell me & I only have to go on what I see.
Thanks for all the great suggestions, for sharing your wealth of knowledge and kindness, I much appreciate it.:hugs:

 

[Cint]

As masterjen and acshuman said, we are all different and what works for one may NOT work for another. I'm living proof of that. I've tried more than 10 drugs after a failed brain surgery. So right now, what works for me is Keppra along with the VNS. But along with the Keppra is side effects, like with all meds. So I do take an anti-depressant along with it. If you're wanting your son to wean off Keppra, talk with his neurologist..... go slow as going too fast could worsen the seizures.
BTW, is your son seeing a neuropsychiatrist to help with these problems? Sometimes this could help.

 

[Zoe]

Thanks for all your advice and replies. We are working through things with the Drs, I was just wanting to get an insight as to what others have found useful in a similar situation. I know from reading others posts that keppra has been a problem for many and just wondered how they got on weaning off it.
Trying to learn what my son is feeling from being on these meds, you guys are my best source as he can't tell me & I only have to go on what I see.
Thanks for all the great suggestions, for sharing your wealth of knowledge and kindness, I much appreciate it.:hugs:

Below are two links from a Google search on Keppra withdrawal. Of course, your son's situation is special and hopefully your doctor will have some ideas on the safest way to withdraw from keppra.


Keppra - FDA prescribing information, side effects and uses - Drugs.com

Rating: 6.7/10 - ?159 reviews
Withdrawal Seizures. Antiepileptic drugs, including Keppra, should be withdrawn gradually to minimize the potential of increased seizure frequency.
https://www.drugs.com/pro/keppra.html



Keppra Withdrawal Side Effects - Doctor answers on HealthTap
https://www.healthtap.com/topics/keppra-withdrawal-side-effects
Doctors give trusted answers on uses, effects, side-effects, and cautions: Dr. Jaren on keppra withdrawal side effects: Keppra is a remarkably safe medication.
https://www.healthtap.com/topics/keppra-withdrawal-side-effects

 

[Porkette]

I've been on all of the meds your son is taking and Keppra increased my seizures, along with vimpat until my Dr. lowered the dosage and I've found that has helped a lot in reducing my seizure. I took Tegretol yrs. ago and it worked okay but when a person is taking tegretol they have to stay away from grapefruit and grapefruit juice because the enzymes in the fruit can mess up the drug. As Zoe mentioned folic acid and vitamin B12 have really helped me a lot along with cutting back on the carb and starch foods.
You may want to ask your sons Dr. to do a DNA test on him by doing this test they can see his body chemistry along with the amount of enzymes in his liver and match all of that up to the best seizure med for him with the least side effect. My Dr. did this on me after trying over 10 different seizure meds and he found out I was drug resistant to all seizure meds out on the market right now so he put me on the medical marijuana (cbd oil) and I am amazed how good it is working for me. I wish you and your son only the best of luck and May God Bless the Both of You!

Sue

 

[masterjen]

Just a few notes with regards to the above post:

1. Only folic acid derivatives can cross the blood brain barrier of the person consuming them http://www.ncbi.nlm.nih.gov/pubmed/10213373

2. Too much vitamin B12 can cause harm http://www.mayoclinic.org/drugs-supplements/vitamin-b12/safety/hrb-20060243 In particular, note the page on "interactions". So before taking a supplement, have B12 levels measured as was mention by Zoe.

3. "You may want to ask your sons Dr. to do a DNA test on him by doing this test they can see his body chemistry along with the amount of enzymes in his liver". DNA testing cannot provide information on enzyme levels in the liver; only blood testing (or liver biopsy) can do that.

DNA testing also cannot give information on the body's metabolism. DNA testing, in the form of whole exome sequencing, (which is the most thorough form of DNA testing when trying to detect whether a disease could be present) can only give information on whether there are abnormal DNA present. The presence of abnormal DNA does not even imply the disease is present; it could simply mean the person may be predisposed to a disease potentially developing or that they are carriers of a disease that might be passed on to their offspring depending on the genes of the offspring's other parent.

If a person is showing symptoms of "something" and DNA testing shows an abnormality in one or more genes, DNA testing goes a long ways to helping identify what the disease is, and what treatment may be helpful.

4. DNA testing to find the right seizure med. is only in it's infancy, and while it is not yet useful for identifying specifically which medication would be helpful, it has shown to be of some use in identifying people who might be more predisposed to developing certain side of effects of a couple of the medications.

5. And finally CBD oil can be dangerous to those with some genetic syndromes. For instance, if Phils mom's son has a particular genetic syndrome causing the epilepsy + autism, then an unregulated substance like CBD oil might be detrimental to his health in general. While only Phils mom and her son's doctors would know this, I think it is only fair that those writing about nontraditional methods of seizure control also say "what I do is considered safe for me in my situation and approved by my doctor; please don't try this without consulting your doctor first".

 

[valeriedl]

2. Too much vitamin B12 can cause harm http://www.mayoclinic.org/drugs-supplements/vitamin-b12/safety/hrb-20060243 In particular, note the page on "interactions". So before taking a supplement, have B12 levels measured as was mention by Zoe.

I started taking a vitamin B to help with my keprage and it caused me to have more seizures. When I stopped taking it the number of seizures I have went back to normal. I would defiantly talk to your dr before taking it to make sure it's ok.

 

[Cint]

I would defiantly talk to your dr before taking it to make sure it's ok.

Always talk to your dr. (son's dr.) before taking anything to make sure it is ok. There could be some sort of interaction(s).

 

[Phils mum]

Update

Hi everyone, just a quick update - had the EEG & that has shown lots of seizure activity & was an abnormal reading. Neuro wants one of the meds dropped (I can choose which) and then add in Dilantin. I'm nervous after researching side effects of Dilantin, don't want to cause any other problems for him or us! Anyone on this med & how you have found it?
Thanks

 

[Porkette]

Hi Phils mum,

Thanks for the update and I'm sorry to hear that your son is having seizure activity. I took Dilantin many yrs. ago when I was a kid and it made me very tired and all I wanted
to do is sleep most of the time. I've found speaking to my pharmacist the best help because the pharmacist will often know more about meds than some Drs. do and how
they will interact with each other. I wish you and your son only the best and May God Bless the Both of You!

Sue

 

[masterjen]

Hi everyone, just a quick update - had the EEG & that has shown lots of seizure activity & was an abnormal reading. Neuro wants one of the meds dropped (I can choose which) and then add in Dilantin. I'm nervous after researching side effects of Dilantin, don't want to cause any other problems for him or us! Anyone on this med & how you have found it?
Thanks

Very important to be aware that everyone responds differently to seizure medications. Some my have been plagued by side effects and/or poor seizure control whereas others may have few side effects and excellent seizure control. I know that you may be just as concerned with the long-term side effects as the short-term, but this is the case with virtually all seizure medications and is largely dose-dependent. As difficult as it is, try not to base your decision on whether to have your son try Dilantin based on what you read on forums. Rely instead on your son's neurologist's reason for wanting to try Dilantin, and what you learn from your own research of medical/science websites. Good luck!!