I found both sites on Google. First just using the chromosome type, then chromosome type 21 and Epilepsy. Please Google or use your fav Search Engine if you need More Info on this Topic.
As to the new med...All meds come w/ Side Effects. But, not every person experiences these side effects. A good Nutritious diet can Help metabolize meds & make them work more efficiently w/ fewer to no side effects. Keep in mind...What works for One, may not work for another. Our Drs have no way of knowing IF a med will work or what Side Effects will appear. Suggestion..Visit Helpful Hints on the Right & read about Daily Journals. A Great Tool for you, your daughter & Drs.
I think it is a Good thing she has a Normal MRI> That means no tumors, cysts, lesions or other malformations of the brain. Positive EEG is Good, in a sense, too. Proving she does have Epilepsy. Believe it or not, not all seizures are Epilepsy associated.
Please consider filing for Disability. If you wait until she is 18, she will have to File, if she wants, but, it may be tougher to be approved.
I hope I have answered your questions. As to where to turn to from here....Mom, Stay Calm & take it All One Day at a Time. Continue to treat your Daughter as normal as possible. Educate her as well as yourself. As a caretaker, you are her Best Advocate. And Education is Power. But, so is Support. Please read my profile by cliking on my id or pic for an Idea about More Support! Although I hope you will continue to up date us here on WebMD, too. Plus, here is a Link for your Daughter. Also, visit efa.org & find your State Epilepsy Foundation & inquire about the nearest Live Support Groups in your area, if any.
BTW: Lots of people w/ Epilepsy have been to counselors. The Rite Counselor can Help a Whole Lot. Seek 2nd Opinions, especially if you don't Like the doc you see!
I would also suggest you ask your Neuro about a change in medications. Quality of Life is Just as Important as Seizure Control! And it sounds to me like you aren't getting Either from Keppra! You may experience a few more seizures while adjusting to a new med. But, you won't know till you try it, if it will work for You! Give it 2-6 weeks, if you do change meds.
Also, you mite want to talk to others in other support groups. I do Hope you will continue to keep me posted on your progress. But, this is such a Small Group. So, Please clik on my ID or pic to read my Journey & join me on Facebook, too. Hugs
Thank You for joining us. You are Not Alone. Others' Have experienced the same or similar. There are a Lot of Aspects to Epilepsy & even more when you add in Medications/treatments. But, each of us is 'unique' as to how we react to Epilepsy &/or the Medications/treatments, provided. But, I have found that Epilepsy Definitely makes us & those who love/care/support us, Stronger. And Knowledge is Our Power!
Are you keeping a Daily Journal? Please read Journal info in Helpful Hints. To be sure you are including all necessary info.
I am not a Dr, but, from what I have read from research articles'....Drs are supposed to start you out on a Low dose & increase slowly. Like every week or 2. May I ask...Has your GP been monitoring your Keppra Levels &/Or vitamin/supplement levels? Low levels of some supplements can increase your symptoms/side effects. Good Nutrition is Essential to Epilepsy & Meds/treatments. Lack or Low levels of Vitamins/supplements can affect the way you are feeling, too. For instance, vitamin D3. Men & Women w/ Epilepsy have shown to have little to Nil in their systems/brains. Which can cause Depression. So, we supplement w/ D3. As to How much?? The amount varies depending on the person. Foods & 15 minutes a day in the sun can increase d Levels. Or you can supplement w/ D3, up to 5000IU, safely. Inform your Drs, if you do. Increase by 1000 weekly & If you feel you need more than 5000IU your Doc can prescribe it. Plus, added benefit...Helps absorb Calcium & make stronger bones. Our meds can Rob us of certain vitamins/supplements, too. Which mite account for your symptoms, too.
Again, I am not a Doc, but, Yes, what your husband described is a Nocturnal Seizure. But, there are various seizure symptoms/types, that can occur during these. Again, it is an Individual experience. You can learn more by cliking on the Epilepsy Health Center, Highlighted in Blue at the Top of this page.
Honestly, you should discuss any changes in meds w/ your Dr/Neuro. Lowering your meds may help you lose weight, but, may bring seizure activity back. I'm not sure if this is a solution for you, but, what the doc did for my Daughter while on Keppra....He added Topamax for weight loss. She is no longer on Keppra. She is now on Lyrica w/ Topamax to control weight.
As for your other side effects. Here are some articles you mite find informative.
I think we all deal w/ memory loss. Between Epilepsy & our meds it is a very common issue. But there are exercises & supplements that can help w/ that, too. Lots of info on Google or other Search Engines.
I just googled 'seizures and anger'. Lots of Info. And Yes, there may be a co-relation. Anger Epilepsy Or it can be another Disorder that is co-morbid w/ Epilepsy. Bi-Polar is one.
But, first, consider the medication! A Tip that Mite help & has helped others' w/ medication induced mood swings...Add B6 (recommended by others' w/ medication mood swings) & B1 (suggested by one of the links I saw on Google) to his Vitamin regimen. I would start w/ the pill foods Rich in these vitamins.
It is common to have an increase of seizures, after starting a new dose or med, too. But, if he has been taking the new dose 2-6 weeks & still experiencing seizures, he will need to see his doc. ASAP! Please, make time to go w/ him! See the doc w/ him! What you have witnessed may Help the Doc, so insist on being included.
What you can do in the meantime....Please read our Journal Info in Helpful Tips. You & your BF are your own Best Advocates & a Journal is a very Useful tool for him & Docs.
As a caretaker, all you can do is be there to support him. If you Love him, then Time & Patience is on your side. And it will take a Lot of Both for Both of You! But, there is Always Hope! Hope that he will find a med or treatment that will Help. I & My Daughter were on the med/doc merrygoround for 10 yrs. But, that varies for everyone, too. So, hang in there. Encourage your BF to join a support group, too. It helps to Know you ain't Alone! Plus, you & Him need to learn as much or more than his doc. There are Epilepsy Foundations in each State & you may have a Live Support Group near you. If not then have him join us &/or both of you can join other on-line Support groups. I've been here for over 25 yrs, plus, keep tabs on about 8 or 9 other groups. Clik on my ID or pic to read my profile/Journey. I actually had an edited version published in our daily hometown newspaper.
P.S. I do Hope you will keep me posted on your BF's progress & feel free to ask questions or vent anytime. I try to check this board every day. HUGS!View Thread
International Awareness Day: Second Monday of Feb. March 26: Purple Day, November: Epilepsy Awareness Month. Wear Purple to show Support. Advocate
First, I wanna ensure you that you are not alone. Next, it is common to have seizures when first starting meds. for Epilepsy/seizure disorders. This is becuz, it takes your system at least 2-6 weeks to reach therapeutic levels of the med. Your Dr is doing good, starting you at a low dose. Of course once you are on the higher dose it will again take 2-6 2 weeks to adjust. Time & Patience. Love & Support. Most Important....Education.
I met an awesome lady long ago. A Medical Journalist who gave up her career & focused on writing articles about all aspects of Epilepsy/seizure disorders, after her experience. She, too, had a stroke, followed by seizures. Difference...She was in a coma for 2 weeks.
Suggestion: Start a Daily Journal. Note the article in our Helpful Tips. start eating nutritiously. As this will help your meds to metabolize properly & may help diminish or even eliminate some side effects.
Paramedics? How long were your seizures? Or did you hurt yourself? Panic Attacks? Learn to do Pursed Lip Breathing. More info on your search engine. And it is recommended for people w/ Epilepsy/anxiety &/or panic attacks.
Visit her Home Page & save as fav/bookmark & take time to browse some of Phylis' articles. There is no need to join.
Another suggestion: There are books on Amazon.com about Seizures for people of all ages. Take note of Titles/Authors & visit your Local Library. Ask for the Research Librarian & give them your list. If your library doesn't have the books, another library mite. Or even a used bookstore.
Safety proof your house. Never bathe w/out proper supervision. Showers Only! Shower Chairs are recommended.
Babysitting has always been easy for me. But, I always had the kids at my house. Kids can be taught to respond to seizures. And they are more resilient/stronger than we realize or give them credit for. My Daughter was my caretaker from the age of 5 till she was 9. I had a son 10 yrs after my Diagnosis. I learned to sit on the floor.
Giving up driving is always tough. For everyone. Or most everyone anyway. But, where there is a will, there is a way. BTW: You have to be Seizure Free for 6 mths. And there is no guarantee as to whether your meds will work. I & others' have been there, done that. You are just taking your First Steps on a Long Journey. But, we are here to walk along side you. Hopefully, ease some fears. Or at least answer your questions & always Listen if/when you need to vent.
You can read about my Journey/family history by cliking on my Pic or ID.
Use the WebMD drug tab. Learn more about your medication. Expand & clik on blue highlighted words for more info. But, keep in mind, side effects are what we watch for & everyone's system is different. so side effects for individuals vary. Talk w/ your Pharmacist about over the counter meds that are safe to take. And Always check for drug interactions on any further prescribed meds. Docs don't always know Everything about the meds they prescribe.
First, I am not a Dr. But, I have talked to lots of parents over the yrs & done my homework. Mainly becuz I never understood my own seizures. Although to this day, I will never know why I had seizures as a babe/toddler. My daughter & family were involved in a genetic study, several yrs ago. My Daughter found out hers were hereditary. But, enough about me.
OK, you have seen lots of Drs. Have you taken her to an epileptologist yet? Here is a list recommended by others' w/ Epilepsy.
I would like to suggest you save this page & read thru some of her other articles. Phylis is a great Medical Researcher turned Epilepsy Advocate. No need to join to read any of her articles. Join, Only if you want to comment or ask her questions.
Normal MRI's are Good in my Opinion. That means there are no abnormalities such as tumors, cysts or lesions. EEG'? Well, all mine have been Normal, too. Some say it is because the spot the seizures start is buried to deep in the brain to show. About 10 yrs ago, I had a Portable EEG done. I was sent home for 72 hrs wired to a machine. that I carried like a purse. It came back w/ seizure activity. But, not what I had expected. I was having seizures in my sleep w/ no apparent physical signs. I have not been treated for this. It took me 10 yrs to find a med/dose that worked for me.
I do have another suggestion. Talk to a Chiropractor, who Specializes in Epilepsy. you can learn more on Google. Search for stateoftheart.com
As for no medicine working....Please Don't give up Hope. There are so many new meds & treatments. Unfortunately, all meds & treatments are 'trial & error'. Keep a detailed journal of all meds/doses she tries. And her reaction to each. If there is no improvement w/in 2-6 weeks, then it is time to be weaned off those meds & try again. Just keep in mind, you are not Alone. And there is a Lot to Learn & a it may be a Long Journey. You never know. After all, my babe/toddler seizures went into remission for over 25 yrs. Epilepsy does not discriminate as to who, when, what or where. Plus, over 65% of us have no clue Why!
How are you today? I apologize for not responding sooner. Life kinda interfered w/ my Daily comp time.
I have a few questions. How long have you been on the Keppra? I am assuming you are still on the Onfi, too. Are you keeping a Detailed Daily Journal? To be sure you are including ALL necessary info, please, read journal info in Helpful Tips. Have you ever been seen by an Epileptologist ( Seizure Specialist) ?
You can clik on my pic to read my Journey. I was never allergic to any meds. They just didn't work for me. It took me 10 yrs to find a med that would. Now my Daughter is on the Epilepsy Journey, also. And they thought they did have the rite med for her.
A lot of people w/ Epilepsy have the same Issue. Meds that won't work. How to cope? One Day at a Time. I think everyone has their own way of coping. Staying Positive may seem impossible, but, you can do it. W/ the Help of Supportive People. Whether on-line or in person.
The lesions you mentioned may be due to the seizures you have had since a toddler. (I had my 3 as a toddler. But, they went into remission) But, they are known to trigger seizures, too. Depending on where they are located it may be possible to have them surgically removed.
So, have any of your Drs suggested 'alternatives' ie: Surgery, Diet, Exercises (yoga, meditation, breathing exercises), neurofeedback, acupuncture? I would consult w/ a Chiropractic Specialist, too. If you would like some Info about any of this, please, let me know. Hugs!