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Roland Epilepsy and Attention deficit (ADD / ADHD) - suggested medication
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stath_mi posted:
I am a happy father of 2 boys. My older son (now 8.5 yrs) had his first seizure 18 month ago and a second one 1 month ago. Despite the low frequency, due to long duration (~1hr! in both cases) the doctor suggested to start medication and suggested depakine (valproid acid) mentioning it could potentially help with the attention deficit problem (ADD / ADHD).
To be sure, I checked with another doctor and to my surprise she said that depakine could deteriorate the attention deficit issue, based on recent research and publications, therefore she suggested keppra (levetiracetam).
Can anyone help so as to take a decision on the medication?
Thanks a lot in advance!
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dancer86442 responded:
Hello stath,


Welcome to our Community. First, we are not Drs. But, I am well educated about seizure disorders. Now, due to the Length of his seizures I would say yes to Any anti-seizure medication. I am sure the Drs explained to you that any seizure activity Should only last 2-3 minutes. So, my question is: Were his seizures 2-3 minutes followed by More seizure activity lasting up to less than 1 hr.? What we call back to back. Or were both episodes 1 single on-going seizure? Just Curious.


I am glad you sought a second Opinion. That was very Wise of you. Most ppl don't think to do That. I would Trust the second Drs Opinion. But, for the best up to date Info about any med, please, consult w/ your Pharmacist.


Also, keep in mind, what works for one may not work for another. Plus, side effects depend on a persons system, so All meds/doses are pretty much 'trial & error' for each of us. But, that is true even about Over-the-counter products.


Suggestions: To diminish/eliminate side effects, be sure your son maintains a Nutritional Diet. Plus, a Good Multi-vitamin. It will take 2-6 weeks for his system to adjust to Any Anti-seizure med. But, seeing as how his seizures were so far apart, it may take Longer to know if the med is working for him. Unfortunately, he may experience more seizure activity as he adjusts to the med, too. I Hope I am not confusing you too much. Be sure he takes his medication Same time everyday & his vitamins/supplements at least 1/2 hr b4 or after his med. This insures that Both are processed properly by his system. IF you go w/ the Keppra, I would, also, like to recommend he takes Vitamin. B6. Why? Keppra is Known to cause mood swings. B6 is known to Control these Mood swings/anger Issues. Not everyone experiences the Issue, but, it is one of the most reported side effects for Keppra. To the point that a Lot of ppl call this med or rather the reaction to it, Kepprarage So, B6 is Just a Precautionary measure you can take. Next, please, start a Daily Journal. More Info about Journals is in our Helpful Tips. If you have a Cell phone, a lot of them have an app, so that you can keep track of his seizure activity on that. As for School, visit ww.epilepsyclassroom.com for a pdf file that can be downloaded & printed up for his teachers. Thus, they are Informed & can Help keep track of anything 'odd'.


Next step: Educate yourself & your children! There are books on Amazon.com for All ages! Note autors/titles & take them to your local library & ask for the Research Librarian. It is their Job to Help you find the books. If Not available in your library, they can 'borrow' from other libraries or locate a Used Bookstore that Does carry them.


Any more Questions? Please feel free to ask. Just need someone to talk to? We will be here. Keep in mind, despite your son's Epilepsy Status, he is Still a 'normal' young man & needs to be treated as such. Yes, he will have Some limitations, but, it's mainly Common Sense. No More Baths! Showers Only. Supervised Swimming. Athletics, well, exercise is good for us. Another precautionary measure. Remove bathroom door & replace w/ shower curtain or folding door. Place a Baby monitor w/ sound/video, in his room & the bathroom. (you can keep an eye out for one at yard sales or check craigslist or E-bay to help cut costs.) Or use 'spy' cams w/ sound/video. Visit our Epilepsy Health Center for more tips on how to safeguard your home.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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stath_mi replied to dancer86442's response:
Thanks Candi, i really appreciate your advice. Fyi, both of the seizures were just 1 on-going situation with complete loss of consiousness, head turned to the right side, eyes wide open and pupils dillated. Especially the second time he did could not recover by himself so they gave him in the hospital after 1 hour stendon intravenously and he immediately fell asleep. He woke up after 3 hours with terrible headache coming from the back of his head and extremely exhausted. After less than half an hour he fell asleep again and slept for10-11 hours. He then was back to normal like nothing had hapenned.

As for the medication, I guess you have not heard of some connection of valproid acid with attention deficit disorder. If somebody knows something pls share with me so as to immediately start the treatment.

Thanks!
 
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dancer86442 replied to stath_mi's response:
Hi Stath, I apologize. I Meant "except for the valprioc acid" . Although some of our meds are multi-purpose (used for other disorders) some Can aggravate other disorders.


What your son is experiencing is what is known as Status Seizures. I do Hope your Dr will prescribe what is known as a 'rescue med' as well, as Daily med. Yes, Sleep is a Common side effect of anti-seizure meds. It is Also a Common Side effect after an Episode. I recall sleeping 10-12 hrs, eating, then, falling asleep again. Each of us have a 'recovery period' & we all Vary. My 'recovery period' would last for 3-6 days. But, yes, we do return to 'normal'. As if nothing Happened. But, we don't Recall what happened, when we lose consciousness. Whether it's 2 minutes or More.


Headaches/Migraines are a side effect of seizures, for Some. They are now considered co-morbid w/ Epilepsy.


So, go w/ the Keppra. With our meds, you won't know what works, unless you try it. Want to learn more about meds? Ask your Search Engine. Meds used for Epilepsy & ADD/ADHD. It's possible an Epilepsy drug can be used for Both.


Did you find the site for teachers Info? I apologize, again. I misspelled the URL. The site can be found in our Resources, though. BTW: Use our Search This Community Tool at the Rite of your screen. I do believe we have similar issues in our archives. 'ADD/ADHD & Epilepsy' Journeys.


Please, keep us posted on his progress. We are Here to Listen. You are your Son's Own Best Advocate. But, being a Caregiver is Rough. You Deserve our Support. We may be Small in number of members. But, we are Strong w/ what we know. There are other Support Groups out there. But, I am Happy that you joined Us. Thank You so much for responding. My Prayers are w/ You & Yours. Hugs. Happy Friendship Day. Here is to a New Friend. Hugs!


Love Candi.
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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dancer86442 replied to dancer86442's response:
The Good News is that most children outgrow this type of seizure. I asked for more Info on a FaceBook Group. The consensus is the same. Medication Will be Trial & error. But, Diet, (Ketogenic Diet) exercise, and Proper Sleep patterns may work for your son, too. But, even Diets are Trial & Error. If you decide to go w/ the diet after doing some homework about it, Please, consult a Nutritionist.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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stath_mi replied to dancer86442's response:
Thanks Candi, I really appreciate your help and support.

Indeed, the Dr prescribed diazepam. Unfortunately, we did not have it with us when the 2nd seizure occured. The Dr said that if we had it with us used it and seen it was working he may not have suggested to start with daily meds. Tough...

I tried to find something on the internet regarding not using valproid acid for kids with add/adhd, but couldn't. I would like to share it with my Dr and ask him to start with Keppra and not with Depakine. If you have or find something please share with me.

Once again thanks a lot.
 
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stath_mi replied to stath_mi's response:
In the meantime, I kept on searching and found 2 sources mentioning that valproic acid may be connected with attention impairment. The second one also mentions that keppra (Levetiracetam) may impact positively cognitive development. I will share with you the links below, so as to use them also in the future with other members.

Cheers.
 
 
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dancer86442 replied to stath_mi's response:
Another member of the Group has similar Issues. She said you can email Melinda at tonaqua@yahoo.com & she will share w/ you some helpful tips that she has learned work for her & her kids. Thanks for the Link. I know the side effects of All our meds can be 'scary'. But, again, not everyone experiences those side effects. To me: Side effects are what we Watch for, not what will necessarily Happen. If any side effects last more than 2-6 weeks & affect 'Quality of Living' you Insist on trying something Else. Which is why I call it 'trial & error'. Did you use the WebMD drug Supplement Tool? When you clik on side effects you will note a question under the box about side effects, too. Clik on question. This lists the most Common side effects experienced by others' that is not in the print-out that they & Pharmacies use.


I understand what your Dr is doing. What I call 'preventive measures. Hoping the Keppra will keep him from seizing or at least seize for the required 2-3 minutes. But, I do Hope you will keep the Diazepam as a back up. And take it w/ you wherever you go. Seizures just don't discriminate as to when or where they will occur. It could be today, tomorrow or even 18 mths again.


BTW: Keppra is most known for Mood swings. These mood swings can be quite severe. It earned it's knickname Keppra Rage. But, there is a solution if you note this side effect & if you go w/ Keppra, I would use this as a 'preventive measure'. Vitamin B6. My meds have the same Issue. But, even though it is the oldest med available (Phenobarbital) Researchers didn't find out till 15 yrs After I started taking it.
I lost my Job, due to a mood swing, several days b4 the Info came out. Oh well. I've always considered my Real Job is here w/ WebMD & other Groups, anyway. I don't get paid, but, the rewards are Awesome. In my Eyes.


Keep on doing your Homework. There are a Lot of aspects to Epilepsy. The education is a Never ending Forever learning experience. But Worth the time & trouble.


BTW: Melinda mentioned 2 other sites you mite want to try for more info. CHADD.COM & Parent2Parent.com Can't hurt, may Help! But, I expect You to keep us updated, too. Hugs again. Have a Great Day.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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dancer86442 replied to dancer86442's response:
If you email Melinda Please put WebMD in the topic box so it doesn't get deleted.
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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stath_mi replied to dancer86442's response:
Thanks Candi, I have already emailed Melinda and I am expecting news and advice from her.

If you could bare with me I have 2 more questions:
1. My wife is a nurse and works really close and trusts more the 1st doctor who prescribed Depakine. He talked to him about potential impact to attention deficit. He insisted to start with depakine, since it has proved to be more effective with Roland epilepsy over the years while Keppra not, mentioning that the side effects of depakine to attention deficit are not that important nor are they proven yet. I am really confused now!!!

2. We took diazepam with us during vacation period, where it was exposed to temperatures much higher than 25o C (even up to 35 in some cases). It is stated in the pack that it needs to be stored in places with no more than 25o C, so I was wondering if now it is useless and I have to replace it.

Thanks and please excuse me for taking so much of your time.
 
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dancer86442 replied to stath_mi's response:
Stath,


Please do not apologize for 'taking my time.' If I Minded, I would no longer be here on WebMD. As you can see, I am here almost Daily, if not multiple times a day.


OK, 1. What I know about our meds & what I think this Dr is trying to say is that the side effect of attention deficit is possibly a Rare Side Effect. So, not as Important as it's effectiveness .And as I said B4, you won't know How it will affect your child till you try it! Did you find the List I suggested you see on our Drug Info page?


I think your concerns are valid. I Would consult w/ a Pharmacist. This Dr may or may not have done his Homework. But, I do know that Drs only take a 6 mth course in Pharmacology as Interns & when they become Drs, most rely on what Drug Reps tell them. But, I do believe Valproic Acid has been around Much Longer than Keppra, so of course, it would be proven to be more effective. Maybe your Wife should have discussed the Ketogenic Diet w/ him, also. Cuz, it has been around even Longer. Like B4 meds were ever discovered. Proven effective then & Now. As I am sure Melinda will tell you. My thoughts: Why place him on medication? When there is a Good Possibility he will outgrow this Epilepsy Syndrome. And You could still keep a rescue med, if needed. Yes, get a replacement for the Rescue med. Do Not Flush the old one down the drain or toilet. Let your Pharmacy dispose of it properly.


Lots of Love & Hugs. I Like the fact that you are here asking questions. You are your son's Own Best Advocate. Keep in mind, you have the rite to say No to any meds/treatments. Also, If possible: Seek a Third Dr Opinion. Compare their answers.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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dancer86442 replied to dancer86442's response:
I checked for my self. Here is what I found. Over Excitement Rare Less Severe if noted


Problem Behavior Rare Severe if noted


Mental Impairment Infrequent But Severe if noted.


So, the Dr is basing his Opinion on these findings of what others' have experienced.


BTW: Melinda agrees w/ me about Diet Changes to control all his Issues. As you will soon learn. Hugs Again.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.
 
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stath_mi replied to dancer86442's response:
Dear Candi,


We finally decided to follow the Depakine solution, following the first doctor's advice mainly because we want to avoid our son to get to a 3rd status. We consider Depakine as one of the most effective drug for BRE and therefore prioritizing our objectives we decided to start. The daily amount prescribed is relatively small (1 sachet of 250mg per day).
Of course we will keep close track of his progress at school and in case we see attention deficit deteriorating we will discuss with the doctor to maybe change the medication.
I will keep you informed of the progress.
Needless to say, I much appreciate your support thus far, and I would like to kindly ask you to drop me a message (stath_mi@yahoo.gr ) in case something comes to your attention.


Thanks a lot!


PS: Melinda did not reply to my message (I guess she was pretty busy) but even having decided to start with Depakine I would love to exchange some info and ideas with her, since she is dealing with a similar case. Pls ask her to reply to me whenever she finds some time.
 
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dancer86442 replied to stath_mi's response:
Hi Stath,


Wise decision. Controlling seizures, ASAP, for now, is the main objective. I'm not saying the Depakine will work. But, Time will tell. Same w/ Side effects. Patience is the name of the game now. Were you able to download the pdf file for teachers? Resources: epilepsyclassroom.com


I took note of your addy. Will send you any relevant Info, I mite find. BTW: There are Lots of Groups if you are interested in getting more Info/Support/Opinions/Tips, yourself. Let me know if you do. But, I will contact Melinda & let her know about your email. She may be busy. I know Life Interferes in all forms. Hugs to you & yours.


P.S. Keep up w/ that Journal! Plus, nutritious meals to help process meds properly & diminish/eliminate Most side effects. Any Vitamins?? Multi-vitamins are Usually recommended for all our AED's (Anti-epilepsy drugs) Take 1/2 hr or more B4 meds. This gives it time to process properly b4 adding meds.


Love Candi
Prepare Now! November is Epilepsy Awareness Month. Find or Create an event to educate Others'.


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