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Memory Loss in 14 year old daughter with Epilepsy
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MuffinsMama1998 posted:
My daughter is 14 and has had epilepsy since she was 3 years old. It has been pretty well controlled by medication. Yesterday we took her to the Urgent Care for a tonsil infection, and the nurse put the blood pressure cuff on her...well it hurt her and it kept redoing itself. The nurse snapped at her and told her to sit still...then BOOM. She fell out with the worst seizure she has ever had. It lasted a few minutes, she messed on herself. She has complete memory loss now. She does not recognize her brother, friends, her cats...she really does not remember me or her daddy. She told me this morning her head was hurting so so bad. She went and laid down after I gave her her medication. Is memory loss common? Will it come back? What do we do about school? Any help on this is greatly appreciated. Thank you so much.
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dancer86442 responded:
Hello Mom,

Bad seizures are the Pitts. Her 'episode' sounds like numerous others' that are described, everyday. The Aftermath, to me, is always worse than the seizure: Soreness, Confusion, memory loss, the headache & tired feeling. She should regain her memory once she has slept some more. Everyone's recovery time Varies. So, there is no way I can say How Long she will need to/want to sleep or return to 'normal' I just Know she Will.

I'm not a DR. But, seizures Can be triggered by illnesses/fevers.

As for school: This is the weekend. Hopefully, she will be OK by Monday. I filed a New Link under Resources for Parents to give to Teachers. Please share the link or make copies of the Info for her teachers. As for school: efa.org has Lots of Info for you under Living & Coping. Search for your State EFA, too. If interested, Search for an Epilepsy Group near you.

What medication is she on? How long has she been on her present dose? Pretty well controlled? Do you keep a Daily Journal? Do you know what her 'triggers' are?
Are you aware of 'catamenial seizures' (hormone related) ? More info in Resources.

If you have more questions, please ask me. If your daughter has questions, I'll be glad to answer her. BTW: There isn't a Group for teens here on WebMD. But I Think the EFA.org site has one. Or try Facebook. Support, at her age, any age when it comes to Epilepsy is Vital! And Caretakers deserve Much, much more.

I do hope you will visit again & keep us posted on how your daughter & you are doing. HUGS!

Love Candi
 
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saxofone1 responded:
Hi,

How are the young lady(muffin?) and you doing?

I did a quick search on google. I entered support groups for teens with epilepsy. One of the sites is www.epilepsy.com/info/teens/_support .

I had seizures that have left me in a state of confusion/temporary amnesia. It did pass.

What area of the brain is your daughter's ep located? If her ep is located in the same area as the memory(generally the hippocampus or lobe) this might explain her memory loss.

Like Candi said, the aftermath of a seizure is tough. Once a seizure is over, it's over. But we must recoup from it. For some it's a nap as for others it will take some time.

I do hope the young lady is feeling better soon. I do recall how tough ep was in regards to attending school. I hope she is receiving support from the school and her classmates. That can be such a relief.

Best wishes,
angie
 
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bunnysmom1996 responded:
Hi there Mom
How is your daughter doing.
My daughter is 16 and last year she too suffered a horrible seizure that caused memory loss for over 10 weeks.
She too did not know family she knew I was mom but had no memory of her childhood.
Please e-mail me if you want someone to chat with.
doubledots66@hotmail.com
 
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dancer86442 replied to bunnysmom1996's response:
Hi bunnys mom, Glad to see you are Still w/ us. I do Hope Muffins Mom contacts you or at least gives us an update of how her daughter is doing. How is Your Daughter doing? HUGS!

Love Candi
 
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MuffinsMama1998 replied to bunnysmom1996's response:
Hello All!
First off, let me say THANK YOU from the bottom of my heart for the kind words and replies at all.
Muffin, yes we do call her that!! hehe is doing much much better. She does have pretty bad Short Term Memory loss, but her long term memory has been pretty much regained.
It lasted almost a week, and let me tell you, it really was hell. All around, her classmates and most of her teachers have been pretty incredible and supportive. Her neuro upped her meds and wants to see how that pans out before he tries something different. She is responding well to the new dosage.
With epilepsy being so understated as a disease and the medical community really not knowing what causes it, how to treat it without the person being a guinea pig, it gets extremely frustrating. People still look at her like she has lice or something. But for the most part, her friends and our family has been pretty incredible like I mentioned.

bunnysmom...how is your sweet girl doing? My girl did not know I was MOM or dad was dad....but she felt SAFE with us...her best friend called after it first happened, I told her, she wont know you hunnie, she said, mama please let me talk to her, well, it went as I thought, she did not know her and also told her best friend, I was that nice lady taking care of her. It felt like someone had kicked me in the stomach. She is my only child, I do have stepkids though who are wonderful, but she is it for me. I had uterine cancer and had a full hyster and no more for me. She truly is my life....and the thought of her NOT knowing me was devastating. Thankfully things are getting back to normal.

I cannot thank you all enough for posting. I appreciate each and every one of you for responding, taking the time from your busy days to care for a stranger.

Please take care...
Lisa
 
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dancer86442 replied to MuffinsMama1998's response:
Hi Lisa,

Thank You for your kind words. I appreciate You taking time to update us! I do hope the increase in dose continues to work for your daughter. Be sure you give the new dose 4-6 weeks to reach Therapeutic Levels. And keep up w/ her Daily Journal!

It's Great to hear your daughter has the support of Friends as well as Family. I know all to well, I sure Appreciated those who stood by me on my Journey.

Mom, Not to be nit-picky, But, Epilepsy is a Disorder, Not a Disease! OK?? Yes, we Are guinea pigs. As a Site reported today "No one pill is a Cure All for any Type of Epilepsy". But, that's true about a lot of medications & disorders &/or diseases. All we can do is Try to remain Positive & Stay Strong!

You are Not a Stranger! You are a Member of Our Family. From the Day you Posted! I will always be here for you. This IS my Job! Or at least that's the way I see It! I do hope you continue to talk w/ us. And Continue to Keep Learning all you can. One Day at a Time. HUGS!

Love Candi
 
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Haylen_WebMD_Staff replied to dancer86442's response:
This discussion is an example of why this community is so awesome. Thank you to everyone who chimes in with support and information.

Muffin's mamma: Here is a link to the resource our wonderful Candi mentioned: Teacher's Fact Sheet

Thanks Candi!

Haylen
 
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dancer86442 replied to Haylen_WebMD_Staff's response:
Thank You Haylen. I didn't realize WebMD had this Fact sheet, also. The only place I had ever seen it was on epilepsyschoolhouse.com. Have you posted this to our Resources?

I have noted WebMD posts Lots on Facebook. How about convincing them to Share this & other EP related material, too?

Love Candi
 
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MuffinsMama1998 replied to dancer86442's response:
Hello Everyone!

I do hope this finds you and your beautiful families well and happy in the New Year.

Well, my muffin has been taken out of school and is homeschooling again. Her seizures are UP again and have been pretty severe. She has more Time Loss. She has admitted to me that she FORGETS us often...she also loses herself when she is talking...meaning, she forgets what she is talking about in the middle of a sentence. I am so worried for my child I cannot express this enough. The school she was in, though very supportive, could not work with us and had to un-enroll her. Which, was a good thing I believe. The school she was attending had almost 3000 kids and it was frightening for her. She would often get lost and forget things, and it scared her so badly, and didnt want to worry me! Bless her heart. I feel so helpless. I do. I dont have many friends here in the city we live in, and I stay home to take care of her and her dad...he is disabled and partially paralyzed. I have no family besides them...so I feel lost alot. I want to thank you all again for being so wonderful and supportive. I do want to apologize for not updating sooner, things have been rather hectic around here.

I do hope everyone is doing well though. Thank you again so very much.

Take care and I hope to talk soon.
xoxo
Lisa
 
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dancer86442 replied to MuffinsMama1998's response:
Hello Lisa,

Good to hear from you again.

OK, you have some options: It is obvious her medication isn't working. So, maybe it would be best to seek Another DR Opinion! Another Med. &/Or you could try some Dietary changes. Like get rid of All Gluten Products. Start reading Package labels & avoid anything w/ Artificial sweeteners & artificial colors. No Sodas! Period!

More Suggestions that may help: Add vitamin D 1000IU Daily.It has been Proven that Ladies w/ Epilepsy Do have a Vitamin D deficiency. Also, add B-6 & magnesium to her vitamin regimen. She needs to take these vitamins at least an hr B4 or after her medication.

Have the DRs cheked her Hormone Levels? Or cheked to see if she mite have food allergies? What about blood tests to determine Medication Levels in her system?

I do hope you are still keeping a Daily Journal for her. Be sure you take it w/ you to her next DR appt.

Time & Patience, Mom. You have a Lot going on & I do hope you are finding/making time for Yourself. Caretaker Burnout is not a Good thing & there are ways to avoid it.

Please, keep us posted. Not to worry about How Long. I am always here anytime you need to talk. HUGS!

Love Canid
 
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MuffinsMama1998 replied to dancer86442's response:
Hello!!!

The thing is here where we live in Las Vegas, there is only 1 pediatric neuro....and honestly, I dont care for him, neither does Taryn to be honest. So our hands are somewhat tied there...
I agree, her meds are NOT working. She is so scared to get new meds. She reads up on her disease and sees the side effects of meds and it scares her. She seriously cannot handle any bloodwork, she FREAKS out. I mean, we had to hold her down last time, there were 4 of us, and she had a massive seizure. They had checked her med levels not long ago and lowered her dosage and that is really when her seizures took on a life of their own.

Thank you so much for the wonderful advice. I do not let her drink soda of any kind...with us living in the desert, it depletes the system so quickly. So she drinks tons of water, green tea with honey and that is it really. I had started giving her Vit C 1000mg and Iron 65 mg here not too long ago. It really seemed to help her a bit. I will go and get some vit D. She has another appt next month....I wish there was someone else we can take her to.

Thanks again for your kind words about caretaker burnout....things are not going well with my husband these days. He says some pretty cruel things to me about being a bad mom and having a lazy child....he doesnt seem to realize words hurt so so badly and she hears him when he says this.

I am keeping the daily journal for her and myself as a matter of fact. Thanks for the advice there too!! It has helped trememndously.

Thank you again, its so nice to know there is someone out there to talk to.

Will try and update you all again soon. I do pray you and your families are happy and healthy and your kids are doing wonderful.

Lots of Love
Lisa
 
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dancer86442 replied to MuffinsMama1998's response:
I apologize. That should have been D3. D3 absorbs better in the system. A good 'natural' way to get Vit D is 15-20 minutes of sun. How about an Epileptolgist??? I Thought Vegas had one connected w/ an EMU??? If not, just a Regular Neuro would be better than what you are getting.

Yes, reading about the side effects can be scary. But, if it's the Rite med, it would mean those side effects will be Nil or at least able to Cope with. Unfortunately, there is no other way but to Keep Trying. If she doesn't like the med side effects, you have the Rite to demand she be taken off them & Start New. As for Blood test, tell her to Not Look & take a deep breath. A 'reward' if she does Good?

I am glad she is doing her homework about everything. I hope she joins a teen group on-line. There are Facebook Groups, too.

Oh & I live in the desert , too. About 1 & 1/2 hrs from you. Over by Laughlin, NV. Plus, Angie is in Vegas, so, maybe she could recommend a Neuro to you. Took me 10 yrs to find one here in BHC that I Like. She has been my Best Dr in over 15 yrs or more.

Keep Learning, Mom. Know we will be here for both of you. HUGS

Love Candi
 
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MuffinsMama1998 replied to dancer86442's response:
Thank you Candi!!!
Gosh I so love that I found you all here!! I cant tell you enough what a relief it is!

I will take everything you say and write it down...so we are good!!!

Thanks again,..sorry its late and I am so tired!

Talk soon
Love n Huggles
Lisa
 
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dancer86442 replied to MuffinsMama1998's response:
BTW: There is a Live Support Group in Vegas, too. Angie can tell you more about that. I can't tell you how Happy your Words made Me! Hope you have a Good Day. Love Candi


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