New to the Forum

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Status
Not open for further replies.
K

KimP

New
Messages
17
Reaction score
0
Points
0
Hello to everyone..

My name is Kim and I just came upon this forum yesterday as I was doing some research. Our family is very new to the world of epilepsy. Our healthy, beautiful, athletic 16 year old daughter, Stephanie suffered her first seizure on August 6, 2007. Her second seizure on September 16 (in school) officially introduced us to her new world. Her doctor determined she was experiencing complex partial seizures and was put on Keppra. This began a nightmare month and a half of tears, outbursts, depression, exhaustion and nausea. She had another seizure a couple of weeks ago and her meds changed to Trileptal (300mg 2x daily). We noticed a difference in her almost immediately! She said she felt like her old self again. We saw a huge difference and her teachers and friends saw the change as well. Unfortunately, she did have another seizure at basketball practice this past Tuesday night. The blessing was that it was the most mild seizure by far and it was the first time we did not have to call 911. Her doctor has decided not to make a change at this time concerning her medication.

To all of you who have lived with epilepsy for a while, please know that our prayers are with you. It is a world so unknown to those who never have to visit it. We are just starting this journey and know we have so much to learn. I am just starting to investigate the diet and nutrition aspect of living with this condition. If anyone has any suggestions, I would love to hear them. Thank you for listening.

God Bless,
Kim
 
Howdy Kim and welcome to the boards, Im sorry that Stephanie has to experiance this. I do know that there are alot of really good supportive people here. I hope that she dosnt have anymore seizures.

Brian
 
Thank you Brian..I am so touched by the compassion of those on the forum from the little that I have read. There is so much great information! It is so nice not to feel alone in this new world of ours.

God Bless,
Kim
 
:hello: Kim

So sorry to hear that Stephanie has had
to endure with those horrible seizures!
:(

While it does take time to find the right meds,
but we are here for you and are in it together!
You girl sounds like a real Trooper!
:tup:

I also suffer from CP's, but once in awhile they
will slip out. The medications pretty much keep
them at bay, but they won't eliminate them
totally, although there are some lucky folks
who have had success with medications and
being seizure-free completely with them along
with surgery and/or non-invasive alternative
methods of treatments.

Welcome to CWE!
 
Welcome Kim

Epilepsy may be a lifechanging disorder but it doesn't have to rule your life. The more you learn about epilepsy, the less fear you have.

It will get easier. :woot:
 
Hello Kim!...

That is SUCH a crime. I mean, 16 yrs old...she needs to be carefree and having the time of her life, right?

She still can!....but she can't obsess on the negative epilepsy crap. Keep your lives as happy and 'normal' as you can (without completely epilepsy of course...it can bite!).......you'll pull through!

Managing stress is a HUGE part of it, and at the onset stress is incredibly high because the experience is so new.

What does she do to relax normally?...keep that up.

Peace
:rock:
 
Hi Kim - my daughter had her first seizure on June 23, 2006 at the age of 14. Rebecca is also an athlete in the world of figure skating. She continues to flourish in that arena, and we are determined not to let the seizures change that.

Knowledge of how nutrition supports or challenges brain function is the route that I am on. Though Rebecca is trying her fourth med (also Trileptal), I see better results through diet and hormone therapy.

Sorry that you have to be here, but so glad you decided to join the conversation.
 
Hi Kim,

Sorry to hear that your Daughter has Epilepsy. It is a life-changing thing, but not life-ruling.

Welcome to the forum, and enjoy asking away any questions that you wish.....that's what we're all here for.

TeeTees
 
Hi Kim, welcome to the forum. :hello:

I'm sorry to hear about Stephanie's seizures. I think the social ramications are harder on a teenager.

Make yourself at home here. :)
 
Thank you for all the great words of encouragement!! Stephanie is doing a great job for the most part..not being able to drive after she has had her license for almost a year (she turns 17 next week) has been a tough one for her. She is entering her third week on Trileptal and I think we might be seeing some side effects just beginning. She is having a hard time sleeping and the headaches seem to be coming more frequent. Her mood/emotions still seem pretty stable. I hope that continues.

Robin, how is Rebecca handling the Trileptal? What changes/additions have you added to her diet?

Thanks again everyone!
Kim
 
Hi Kim,
She just increased her night dose to 150mg and the morning is still 75mg.
I am going to leave it here for quite a while. Muscle aches from the last two meds are the major issue, but when I make sure she drinks her H2O she seems to do better. Last month when we increased by 75mg I thought I was seeing more seizures. I am hoping that isn't the case, but we will be on the watch next week. Seems to take about a week for any side effects to appear.

Dietary changes..... hope you are ready for this one.

I have removed gluten, casein, corn and soy from her diet.
Sometimes I find I have purchased a product that has it in it and finish it out.
I urge her not to eat or drink anything with High Fructose Corn Syrup
Recently I have also realized that MSG and MSG related byproducts might be a huge issue with her. So I have been extremely vigilant watching and reading labels. She is being really good the past two weeks. So far so good.
I have read that they can change the endocrine system, and cross the blood brain barrier and cause cell and nerve damage, especially in the area producing hormones.

Additions: I have been giving her a handful of vitamins and minerals. I have seen a positive improvement in her outlook since adding a few recently. I am considering buying a juicer to make sure she receives a variety of vegetables each day.

I hope this helps.
 
Hi Robin,
Thanks for the great info..I am excited to get started. I sent you a private message and I hope you received it. I am still trying to navigate myself around the site. Unfortunately, Stephanie had two seizures this past week and I am a little shocked and dazed. She is doing as well as expected. Missing her first basketball game was hard on her. I am ready for a new game plan, I made an appointment with a new doctor and I am going to spend this afternoon pouring over the diet and nutrition information you sent my way. Thanks again! I'm glad that you are seeing good results with the vitamins and minerals. I have always questioned the hazards of MSG. Now I have a good excuse to rid our diets of it once and for all.

Take Care,
Kim
 
Hey Kim!! I'm 20 and also new myself to epilepsy so I'm learning as well. I know what you're going through and it's gotta be hard for you're daughter right now. sixteen is so young and living with epilepsy is a big change. I've learned that myself and it's tuff. I wish the best to you and you're family. You'll be in my prayers.
 
Hi Kim ~ I'm happy that you've found this wonderful board for help and encouragement. I've added your family to my prayer list.
 
Thanks Kris and Nancy for the prayers. I'm sending prayers your way as well!

God Bless,
Kim
 
Hello Everyone...hope Thanksgiving was good for all. Well, another frustrating week in our household. Stephanie was able to enjoy her 17th birthday free of seizures...Thank God!! Two days later..POW! She was hit with a big one! I should have known. The morning I dropped her off at school, she just didn't seem right (wasn't talking..blank stare). She wasn't at school 15 minutes before her brother called me to get right back. She was transferred to the hospital her doctor is on staff with. As usual, we didn't get to see or talk to her doctor directly...very frustrating!!! She was given another EEG and we were told that it looked better by comparison than her last. That doesn't explain however why she has had three seizures in the past three weeks. Once again, her meds were increased (Trileptal 900 mg 2x day) and they added 50 mg. of Topomax 2x day. I was just able to get the Topomax decreased a little because it was making her so sick to her stomach. The most upsetting part of the whole hospital stay was the last comment the doctor (associate of my daughter's doctor) made to my husband and I before he discharged her. He told us that if they can't get the seizures under control with the meds and because she has "unusual" seizure symptoms (headache before the seizure along with a pain in her left side followed by her being unresponsive for at least 30 minutes after a seizure), we will have to discuss other possibilities as to what her condition might be???? I asked him to please expand on that one and he responded "I do not want to get into that at this time". What was that all about? What else can it possible be? That was the last straw. He opened the can of worms and refused to give any details. It did motivate us to make an appointment with another doctor for a second opinion. We have an appointment on December 5th. In the meantime, I guess we will just hold on and continue to ride on this emotional rollercoaster.

Peace,
Kim
 
Kim, I am so sorry that you are going through this.
When Rebecca first started having seizures they took unusual directions that many could not explain.
I would ask you to really keep a good journal, calendar, or whatever is easiest for you. Be sure that it isn't the increase in meds that isn't causing this problem. Each time we have increased Rebecca's meds recently she has had an increase in seizures about a week after. It does not happen right away, but after about a week or two when the meds have a chance to build up.

Curious as to what the comment was that this EEG looked better than the last. Even that isn't a final answer. Now that I write this, and realize that the last few EEG's Rebecca had showed no sign of activity. I am wondering now that my theory is that MSG products are causing Rebecca's that would possibly not show activity.

I don't think Stephanie's symptoms are odd in the least. Headaches are quite common, as is pain. Being unresponsive is symptom Rebecca has after each seizure. She also loses memory surrounding the event as well. So darn it..... what do they know about "normal" seizure symptoms. I hate it when they think they know all the different symptoms. How crazy making that is.

You are smart to get another opinion. Has she had the stronger MRI and possibly an MRA?

Hang in there...
 
Hi Robin,
Gosh, it seems like Steph just can't catch a break right now. Tonight, I think she may have had some type of seizure. She became very irritated, seemed out-of-it for a while and developed a terrible headache. I talked her into laying down for a while to just close her eyes. She fell asleep for about 30 minutes then slowly woke up and started talking again...like the Stephanie I know and love. She was a little worn out and said she felt like she does when she has a seizure. She never showed any signs of having a full blown episode like I have seen. Could it have been a seizure? I am so confused right now.

I'm not really sure what the doctor meant about the EEG..he said it was "better" but still abnormal. He couldn't explain that to me either in a language I could understand. I felt the same way you did about his comments on her "unusual" symptoms. Especially since I have been reading in this forum. They don't seem "unusual" to me. Stephie has only had one MRI and I don't believe it was the stronger one. She hasn't had a MRA either. I'm not even sure what that is. I will be asking the next doctor for sure though.

It does seem suspicious that Steph has had a seizure exactly one week after her meds were increased...twice! I am thankfully keeping a calendar..everyday I record what medication was taken, how she felt and of course if there was any seizure activity. I hope that proves to be helpful during the next round of doctors. It is interesting that Rebecca has had normal EEG's...does make you think it is diet related. Hope all has been quiet on your end. It is all so draining but I'm hanging on!

Thanks..
 
KimP said:
... She became very irritated, seemed out-of-it for a while and developed a terrible headache. I talked her into laying down for a while to just close her eyes. She fell asleep for about 30 minutes then slowly woke up and started talking again... Could it have been a seizure?...
Click to expand...

Yes, it could have been a seizure. It could have been a migraine too. Either way, you should make a note of it in the diary so the doctors can get the full picture of what's happening.
 
Status
Not open for further replies.
Back
Top Bottom