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daughters epilepsy???
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An_255160 posted:
My daughter was diagnosed with having seizures a year ago December. She is on meds number 2 and in October they doubled the dose. She has missed a lot of school in last 3-4 months. She says she feels like she loses time (to me that means she is having a seizure?), has bad migraines, is very sleepy , and very very moody (more then she should be). Not having much luck with dr office. What should I do.???? Help
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dancer86442 responded:
Good Morning,


Our Resources & Tips can help. Read Journal Info Plus there should be a link in Resources for Teachers (epilepsyschool house??) . Her teachers Need to note any unusual activity. Depending on how long she is out of it (losing time) it Should be noticeable if teachers Know what to watch for.


No luck w/ DR? Then, Visit epilepsytalk.com & you will find a 2014 List of Dr/neuros recommended by others w/ Epilepsy. No need to join to read her articles. Hopefully you will find another DR in your area.


I don't think the new dose is working. Trial & error phase for meds/doses is 2-6 weeks. So, it is Time for a New med/dose or treatment. Have you considered the Ketogenic Diet as an 'alternative'? It can be used w/ or w/out medication. Phylis has an article on Diets, too. Or you can visit the WebMD Epilepsy Health Center for Info.


Migraines! Bummer! Yrs ago, migraines/headaches were discovered to be co-morbid (common) w/ Epilepsy. I Think Topamax is one of the meds recommended to help seizures &/or headaches/migraines.


Very Sleepy? This could be due to medication. But, it is a known side effect of seizure activity, also. All the More reason to Start a Journal Today! Very Moody is most likely due to meds, too. You can add B6 to her vitamin regimen. It should help w/ mood swings.


I hope this Helped, some. I do hope you will keep us updated on her progress. If you have more concerns/questions or just need to vent, I will be here for you.


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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saxofone1 responded:
Hi and welcome,

I understand your daughter very well. I had my first seizure in '75, shortly before I turned 14. I finished 8th grade at home and missed many days in my freshman year at high school.

As Candi says, the tiredness, moodiness, and headaches are mostly due to the meds and seizures. I was very tired after most of my seizures. One med, mysoline, did cause me severe mood swings I have also experienced headaches since my first med, Zarontin.

Also as Candi says, she is in a trial and error period of finding the right med for your daughter. It is frustrating and tiring but it is a situation that must be done.

Is there an epilepsy foundation(www.efa.com ) in your area? If so, they might have info(reading material as well as video) to help explain this to your daughter as well as to her school. The efa might also be able to lead you to a new doctor.

How old is your daughter? Any questions she has, please address us about her concerns.

Please update us whenever you can. Hugs to your daughter.

angie
 
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tmommy25 replied to dancer86442's response:
Thank you for the information. we know its trial and error with the meds right now, just frustrated I have a nephew that has been dealing with it for about 3 years now and they do more testing before they switch meds all the time. They have done no testing again whatsoever.
I finally have her doctor listening to my concerns and they will do an mri but we are transferring records to Uof I specialty clinics. I feel we will get better help there. I am going to be looking into the diet and vitamins aspect as well.
Thank you for the response.
Amber (and Faith)
 
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tmommy25 replied to saxofone1's response:
Thank you for reply. It is just frustrating right now because she has to miss so much school. She is already moody and emotional from being a teenage girl and then the meds on top of it....UGGGG...lol I am glad she is old enough (12 going on 20, lol) to kind of understand though and can tell me what is going on.
We do have a group here in the quad cities that meets every month but we have not had the chance to get to one.
Next year we are home schooling her. She can not deal with the kids at school well
I will keep updates Thanks
Amber (and Faith)
 
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saxofone1 replied to tmommy25's response:
Hi Amber and Faith,

You're very welcome for the whatever info/support I can offer.

When you say "group", do you mean the foundation or an epilepsy support group. A support group would be great to locate. I belong to one that meets monthly. We have a lot of fun discussing and sharing similiar and new situations. It can be very beneficial to the individual with ep as well as the family to be able to openly share w/o fear of judgement/rejection. Who knows, your daughter might find a mentor there.

Kids can be harsh about situations that scare them. They are quick to ridicule what is different. Their world is in such a rush that few take the time to listen and learn. Faith will find a friend who supports her wholeheartedly. You named her "Faith" for a reason.

Is is possible to ask her teachers for advanced homework or classwork so that she might be able to keep up with her schoolwork? Just a thought that popped into my head as I was typing this.

"12 going on 20", lol!!! I volunteer with kindergarteners and understand what you're saying. I have a 5-yr-old student who reviews my wardrobe every morning she sees me.

Wish you, Amber, and your family a good day.

angie
 
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dancer86442 replied to tmommy25's response:
Hello Amber,


Thank You for your replies to me & Angie. Yes, I do believe you will get better Help & Info (or at least I Hope so) from the Specialty Clinic. Something you Can do, b4 your visit: Write down All yours' & Faiths' questions. Be Prepared & Armed is my Motto.


That DR you see is Not the sharpest pencil in the box. The MRI &/or EEG should have already been done! Especially, since you have a Family History of seizure activity (nephew) As for meds: At least, Blood tests should have been done! I am relieved to hear you Will be seeing another DR. Do you know if there are any Epileptologists (seizure Specialists) at the Clinic?


You can start the B6 regimen Now. Hopefully, it will help keep the mood swings under control. The Diets, if started, should be supervised by a Dr or Nutritionist. More vitamins will be needed, if she goes on one of the diets.


Another consideration: Her age. Hormones are fluctuating & this can be a trigger for seizures, also. You should ask the Specialty Clinic if they will check her Hormone Levels.


Check Amazon.com for Books about Epilepsy. There are books for All Ages. But, B4 purchasing them, my suggestion is to write down Authors/titles & ask your Local 'Research Librarian' about the availability of the books you are interested in.


I know this may seem like a Lot, but, get Involved! At School. Insist teachers & students Learn more about Epilepsy! Your State Epilepsy Foundation, can/will assist you. Talk to a 'parental advocate' ??? Or counselor or school nurse. They can Help! I know lots of parents who have home schooled their kids. But, I do not think home schooling is the Answer. Education about Epilepsy IS! There are Epilepsy Advocates all over Facebook who Encourage Epilepsy Awareness as the solution to bullying. It is, unfortunately, a common experience amongst Kids w/ Epilepsy. But, it happens to Adults, also. People who bully are Ignorant. Ignorance breeds Fear. Thus, they are Scared & Bully those w/ Issues they don't Understand.


I apologize. I got on my Soap Box. But, after listening to others' for over 20 yrs about the Same Topic, I have Very Strong Opinions about this. And I have Read countless Success Stories about parents Advocating in the School/church systems for More education about Epilepsy, To Stop The Bullies!


I hope you & Faith have had a Good Day. HUGS! to Both of you!


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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dancer86442 replied to dancer86442's response:
A New book has been released that can help educate schools/communities. <3 'The Village' Author: Lowell Evans.
March 26 Epilepsy Awareness Day Advocate
 
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hawiian_girl11 replied to dancer86442's response:
Candi,


my neuro told me why the two are liinked. THe blood vessels have mini szs in and of themselves and go into spasms causing the MIgraine and that is how they are r connected. that is the puzzle pieice you might be looking for with that one. so people with epilepsy and MIgraines are having szs activity in more than one plcace in the blood vessles of the brain and in the brain itself.. I asked him why the 2 are linked, and that is what he told me.


I hope that made any sense to you.


nancy
 
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hawiian_girl11 responded:
Aloha,

I have trouble with time loss as well.

I sleep ALOT and when I wake up 3 hrs later I look at the clock and see it says: say something like 4 15 pm HI time (Allutian time) and I get comefused and think it is in theevening and it itakes a second look to realize it is still either in the morning late. or in the afternoon. it is very weird,

SOmetimes I can loose a day or evne two . I can think it is MOnday and it is ie really Tuesday or even wednesay. and have to keep asking Jasyn what day it is because I forget and can not remember because somewhere along the line I have lost the day or days.

I have very severe Migraines as well and will be having Botox treatmeants for them. THey develpted as an offshoot due to Meningitis/encepahalitis I have had several times.

I can be VERY nasty as well moodiness is a nice word for me. I can be hostile and those are side effects of the druge. I do not know if those are side effects of the epilepsy.

I take 3 meds currently and will be on med #4 in April when I see my neuro. I also have a VNS or Vagus Nerve Stimulator as well and that is a long story so I won't bore you with it, You can touch my user name and my profile should come up and I do not know if that is mentioned or not in my story, I do not know if I even made one but you can try, Get back to me if there is not one and I will make one.

nancy


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