Hello all, First timer here. First a little history, My 14 year old daughter has what I believe are simple partial seizures, of the sensory, particularly visual type. (internet doctor here (She has had a normal MRI but abnormal EEG. We are to have our first visit to a pediatric neurologist in two days.) Over the past 6 weeks she has had 0-8 episodes/day of completely unpredictable seizures consisting of 20-45 seconds of hallucinations, visual flashes of vivid dream-like "pictures/videos", deja vu, nausea, rapid breathing, and heaviness in her arms and legs, etc.

What advice might you all have regarding treatments, conservative, dietary or behavioral, and pharmacological. I have looked at a number of the threads here but I would like your perspectives on medications, side effects, risks, benefits, and stories of success after diet modifications etc. I suspect the neurologist will recommend medication and I would like to have some background advice or the right questions to ask before putting my daughter on meds. Thanks

Hello and welcome to NeuroTalk. Happy to see you have come to be with us.

There are great number of fellow members here to assist as possible. So sorry to hear of your little girl going through this. Each and everyone has seizures in a different way. I have had epilepsy since I was 10, and believe me that has been a long time ago. Then again in todays world as in the past there is a great improvement. There is a long list of drugs for epilepsy, but some do and some don't have reactions to the medicine, except if when my levels got to high. I current on Keppra and Limital and have not problems with them, but then again there are some inhere that do. I did have some deja vu, like if I heard some it brought on a petit-mal seizure. I would lay down and sleep a small amount of time after one. One thing I would do is start giving her some Vitamin B12, that has help me. Keep a tablet and write down went she has one, listing her motions, amount of time it lasted.

Please keep us posted on her conditsion. Let us know if you have any other questions. Oh, yea please give her a hug for me. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

Hi peterpan,

Welcome to the forum! What you are discribing sounds a lot like a possible complex partial seizure. I have had them for over 30 yrs. along with absence (petit mal) and simple partial seizures. I've seen many neurologists over the yrs. but I have gotten the best help from an Epileptologist (Dr. speacializing in epilepsy) and going to an Epilepsy Center which are usually at University Hospitals.
Your daughter is going through the hardest time when it comes to epilepsy because she's going through puberty and when that happens the hormones are changing which can often cause seizures. I have kept track of all my seizures by writing down when I have any seizures, what time the seizure happened, and a discription of the seizure. I also write down if I'm sick with a cold or virus, when there's a low pressure in the weather, and when I start and stop my monthly cycle. By doing this you can often see a pattern in a persons seizures what time of day/night the seizures are more likely to happen and what days of the month. I often had seizures 7-10
days before my monthly cycle and then again after it was over this was all do to hormones changing.
You should talk to the neuro. about putting your daughter on the ketogenic diet the diet is similar to the atkins diet but much more strict. Cut her back on carbs. and starch foods, keep her away from anything with nutra sweet in it, and have her start eating foods high in fat. This will help build ketones in a persons body and the ketones stop the seizures. If you are interested you can get the book titled " The Epilepsy Diet Treatment" By Dr. John Freeman. This diet has been out since 1927 and I had 2 cousins on the diet during World War II and they never had a single seizure again until they went off the diet.
Often a neurologist will push the seizure meds like crazy. My advice to you is to have the Dr. order a DNA test on your daughter and that will show what seizure meds are the best for her seizures with the least side effects. I know one thing that helps is taking vitamin B12 once a day this help calm the nervous system and it reduces my seizures. I've found taking Diamox, mysoline, and vimpat the best help for me. Diamox will make a person lose weight, mysoline breaks down into phenobarbital and will make a person tired until they are used to the drug, and vimpat is used but it can make a person dizzy and cause liver damaage to some people. The 2 drugs I would stay away from are keppra and neurontin both of these drugs are on report with the FDA Keppra can increase a persons seizures and cause insomnia and neurontin caused an increase of seizures for me and I found out that the company making the drug has over $210 million in lawsuits. Of course these 2 drugs can help others but it sure messed me up good. I've found the fewer seizure meds I take the better off I am because often the meds will interact with each other causing more problems. I've also learned over the yrs. the best person to get info. on any meds is your pharmacist. They know more about the meds than most Drs. do. Just make sure that your daughter gets plenty of rest and isn't under stress because lack of sleep and stress are the 2 main things that can trigger seizures. Also if your daughter has a cell phone don't let her use it anymore because it has been reported that it can cause seizures for many people. I wish your daughter and you the best of luck and May God Bless You Both!

Sue

Sue, and others, Thanks yo for the warm welcome into the Neuro Talk family.

Sue:I really appreciate all your information and first-hand advice. It would take me 30 years to learn what you have shared. I know it may or may not apply to Hannah's exact case but you have brought up some great questions. That last sentence about not using a cell phone will be a tough one for a teenager. We see the pediatric neurologist tomorrow so I will let you know. Thanks.

Hi Peterpan,

Here's wisihng you and your daughter the best of luck with the neuro tomorrow. I wanted to explain how a cell phone can affect a person who has seizures. The cell phone frequency is in the same frequency as a microwave or it can be higher and each time a person uses a cell phone it is destroying (frying) the brain cells from the inside out just like a microwave cooks food from the inside to the outside. Also it has been proven that a cell phone will shrink a persons hippocampus ( short term memory and learning) and in some cases cause alzheimers.
Take note if your daughter is having any seizures when shes around bright flashing lights or certain colors this is known as being photosensitive where looking at or seeing strobe lights will trigger seizures. Also there's audio and visual seizures where certain sound and pictures can trigger seizures for a person. I wish you and your daughter only the best and May God Bless You!

Sue

Just had our first consult with the pediatric Neurologist. As expected she agreed with my "internet" diagnosis of partial seizure, but she went one step further to call it complex partial seizure. As expected she recommended Keppra, 750mg/day starting with lower dose and working up to 750mg. I asked about any risks etc, but she explained that not taking any medication and just doing conservative things has more risks due to "kindling: or the risk of the seizure type getting worse. She feels that of all the medications, Keppra has the least side effects. I went home and researched Keppra. After learning that the common side effects list includes suicidal tendency, loss of coordination, headaches, mood disorder and depression, etc. I now plan to talk with my friend a pharmacist. That list of side effects is kind of scary. Should I get an epileptologist's opinion before we start my daughter on Keppra or am I overly concerned.????

We saw the neurologist today. She prescribed Keppra, 750mg/day. Diagnosied her as Complex Partial Seizure and says Keppra has the least side effects of all anti-seizure meds. The potential side effects list with suicidal thoughts, depression, headaches, motor coordination loss, etc is kind of scary. should I talk with a epileptologist before we start the meds? the doc says because of the risk of the seizures getting worse or changing forms (a.k.a.: "kindling") we should do the medication. Conservative measures may help but we should do the medication now . What do you all think??

Hi peterpan,

I was on keppra for my complex partial and absence sz. and it only made things worse because in some cases it can increase sz. for a person and I know that it caused insomnia terribly for me to the point where I would be awake most of the night and then I was exhausted during the day and that caused more sz. for me. If I were in your place I would request that a DNA test be done on your daughter to find out what sz. med would work the best for her with the least side effects. A lot of Drs. don't like doing this because they are making money from the company who makes the drug and they often push the newer drug. I know that keppra has been put on report with the FDA drug watch because many people have had an increase of sz. while on the drug. I even filled out a report on the drug because it messed me up terribly. Many sz. meds can cause a person to have suicidal thoughts because it's a depressant and also the area of a persons brain that's triggering
the sz. may also have an affect as to why the person feels this way. It's happened to me I thought about it but I fought the feeling and never did anything like that.

I'm sorry to say but complex partial sz. are one of the hardest types of sz. to control because the sz. is happening in more than one area of the brain. I just started the drug vimpat this past August and since I've been on that drug I haven't had a single complex partial sz. it's been working great for me. The bad part is that the drug can cause dizziness for a few seconds, blury vision, and it can effect the liver so you have to have a lot of blood tests done to watch the liver.

I know that if I were in your place I would have your daughter see an Epileptologist since they know much more about epilepsy and how to treat it. Especially at your daughters age where her hormones are changing so much now since she's going through puberty. Whatever you do try vitamin B12 you can buy it over the counter and it won't hurt her at all. The B12 calms the nervous system down. Here's wishing you and your daughter the best of luck and May God Bless You!

Sue

Thanks Sue, I appreciate your advice and caring. I will talk with the pharmacist and see about getting an epiletologist appt. Happy Thanksgiving Peterpan

Well we are day 13 into starting the Keppra prescription "ramp-up" (starting at 250mg/day/4 days, then 250 in am and pm for 4 days, then 500 in eve, and 250 in morning, then 500 am and pm, then 750mg in am and pm.)

Anyway, we followed the neurologist's advice, started Keppra. No seizures until day Day 5, (first day of 250mg in am and in evening), and my daughter had her usual mild partial seizure, but, the post siezure feelings lasted 4 hours rather than 4 or 5 minutes!? She felt like she was "out of it", had difficulty explaining herself, same visual pictures etc, but had some new symptoms of being very cold, shivering, and very very tired. Of course I assumed it was the medication changing her siezure, but the neurologist, of course said it was too early to tell?????? and recommended we stick with the medication protocol.

Day 6, another seizure, but this time she "nearly fell over 3X's" and felt like her legs and one arm had twitched or nearly gave out. Again felt cold and shivery but this post-siezure symptom only lasted 30 minutes of so. The scary part of this one is it was the first time she seemed to have more of a motor "twitching" sensation. I wonder if this is due to the natural progression, just an abberent seizure, or is it related to this new Keppra medication????

We are still skeptical but trusting the pediatric neurologist knows best. I am going to order some blood tests to check her potassium, calcium, hormones, blood sugar etc. (no blood test has ever been done?) What do you all think?? Have any of you seen a progression or change from sensory to motor as a direct result of the use of Keppra? Thanks for your input.