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Old 09-24-2002, 09:18 PM   #1
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Unhappy Help 10 yr. old daughter just diagnosed !

Help anyone please! My beautiful and gifted 10 yr. old daughter was just told today that the eeg she had last Thurs. showed she had seizure activity. She use to have petite mal seizures 5 yrs. ago and they just stopped , but just recently she had a grand mal and I took her to a pediatric neurologist who had the eeg done. They put her on some chewable meds which I will pick up tomorrow. I don't know what they have prescribed yet, but am very concerned about any side affects. The stories I hear are very frightening. Is there any homeopathic remedies out there at all to help control the seizures? She is so scared that the meds will hinder her school work and she has worked to keep a 4.0 gpa all thru elementary school. Please post any info you may have that will help relieve my mind. This is all so very new to us! Thank you and God Bless each and every one of you!

 
Old 09-24-2002, 10:01 PM   #2
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I have Complex Partial Epilepsy, and my seizures changed at age 11 to Simple Partials during the day whereas I had been having them only during sleep up to that point. Since hormones as well as growth do have an effect on seizures, I figure that I was nearing the beginning of Puberty. They changed again at age 14 to Complex Partials. Diagnosed at age 14, as a Freshman in high school. Has the Pediatric Neurologist given her a diagnosis yet? You mentioned Absence (new name for Petit Mal) seizures first, but then a Tonic Clonic (new name for Grand Mal)more recently. You do need to be given a correct diagnosis, and the doc should discuss this with you if he hasn't already done so. Also, he needs to thoroughly discuss the med he prscribed incliuding the side effects. There are side effects and some do affect mentation and short term memory ability. I went through high school and college on meds and still made good grades. I would suggest that you get the correct diagnosis, the correct med for her type of epilepsy and give it a try. You do not want her seizures to continue if at all possible since they can worsen over time. If you give the med a chance and it doesn't work, ask the doc about the other options. There are other options available depending on her individual case. A very many docs will no offer other options and will not refer her to an Epilepsy Specialist even though the meds he has prescribed are not stopping her seizures. If you do give the meds a try and they do not stop all of her seizures, Do find a good patient oriented Comprehensive Epilepsy Center. There she will receive more specialized care provided it is a patient oriented Center. Not all are. Ask her doc where the seizures are originating? What lobe/s? There are dietary modifications and other treatment modalities that some parents have found helpful as well as adults. It all does depend on each specific case. Some have found that acupuncture helps. Before we get too far into alternative treatments, Do give the meds a try, but get a correct diagnosis for her specific type of seizures an also get their starting point. Getting the correct answers to these questions is so very important. Many people are misdiagnosed and do receive the incorrect treatment for their true diagnosis. Remember, that the goal of epilepsy care is NO seizures and a good Quality of Life. You seek both. Do keep us posted. Tattoo

 
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Old 09-25-2002, 01:44 AM   #3
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I understand what you are going through .
My daughter was diagnosed with epilepsy nearly a year ago .
J is still not fully diagnosed and taking three meds at the moment , we are still trying to control her absence seizures .
I was told about her meds and their side effects and I was worried at first and didn't know what to do either .
I just starting J on Lamictal (the scary one) this week and we are keeping a close eye on her .
I was taking J to a paediatrition who was not very informative about anything ,when I asked questions I never got a reasonable answer , so I am now taking J to a neurologist .
We still don't have a diagnosis but we are well informed about medications and anything else we need to know , and I feel more comfortable with this doctor .
I would call your daughters neurologist and ask for more information about medications and side effects and let them know you are hesitant to start medications until you are properly informed about them .

I wish you all the best and I will say a prayer for you and your daughter .
Cheryl .

 
Old 09-25-2002, 05:49 AM   #4
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Why don't you hhave a diagnosis? The neurologist prescribed a specific medicine, but doesn't know what diagnosis he is treating? That shouldn't be. Maybe I am not sure what you mean by 'fully diagnosed'. If a general neurologist can't come up with a diagnosis but is treating with meds, what makes him think that med he prersecibed will help? Shot in the dark? I used the term Specialist n my above posts. I am not talking about a general neurologist. I mean an Epilepsy Specialist, an Epileptologist, who has done advanced training, or Fellowship, at a Comprehensive Epilepsy Center beyond his Neurology residency. The general neurologist is the starting point, and I would never allow ANY other type of doc to treat epilepsy. The only thing they have to offer is a bottle of pills even though it may not be the med needed for the diagnosis he is trying to treat. To play around with the wrong meds and have no accurate diagnosis can do Harm and waste the patient's life! Tattoo

 
Old 09-25-2002, 09:21 PM   #5
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Thanks Tattoo ,
I had no idea of the difference between a Neurologist and a Epileptologist ,I thought a Professor of Neurology would be as good as you can get , as far as a diagnosis goes .
I will call our Epilepsy association and ask about a Epileptologist .
I understand what you are saying about diagnosis and meds , and believe me I am really frustrated and I am wondering exactley the same thoughts .
Yesteday was a dreadful day she had so many seizures , it was very hot and heat is one of her triggers .

The peadiatrition that I mentioned in above posting , I left because I wasn't confident with him and his inability to answer my questions .
This is what happened ,
He filled out a form for a health care card that I was applying for and posted it back to me . He had put on the form that she had complex partial epilepsy , when I read this I freaked ,I was told by him on our visit after the EEG that she had petit mal and would outgrow this .
So I rang and asked why he had put different on the form and what was her diagnosis , he stammered and stuttered and said that the EEG was showing other seizure activity , I was confused and shocked and said "oh so she won't outgrow these seizures ". And the reply I got was " not to be so pessimistic ."
I only wanted the truth so I would know what to expect .
So I called the epilepsy association in an absolute mess and told them what happened and they recommended the Professor we are now seeing .

After reading your post you have helped me decide to ring J's neurologist and ask for a diagnosis ,and if I dont' get an answer I am going to ask them what do they think they are treating her for then .I have had enough of this .
It is only early days on Lamictal and it may work ,but I'm sick of waiting .
And after yesterdays day of seizures I am so angry .
I will let you know what happens .
Cheryl .

 
Old 09-29-2002, 09:32 PM   #6
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Thanks to all who replied to my post. Kimberly was put on Tegretol... 600 mgs a day. I was told that the side effects are few and this was the best med. to put her on. She started the med. yesterday and yesterday went fine. No problems, but today we were outside and she really got ill. The heat made her very uncomfortable and she got very pale. also this med seems to make her very sleepy. She got real sick to her stomach when out in the heat. We live in Florida and the humidity is high. We haven't gotten any more info from the neurologist yet.But I contacted her pediatrician that referred us and they are calling the neurologist to set up a conference for me. I will be asking all the questions that Tattoo told me to and I won't leave until I get direct answers. Is there a chance that this med will affect her thinking ability in school? Also Cheryl, I was told that the heat wouldn't affect her seizures but I am certain that it does. It certainly affects the way medicines react or she reacts to the meds. http://www.healthboards.com/ubb/confused.gif
Thanks for all the info folks and I am praying for each of you. Take care, God Bless and stay in touch.
Vickie

[This message has been edited by 4hisglory (edited 09-30-2002).]

 
Old 10-04-2002, 06:36 PM   #7
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Hi Vickie,
My son was diagnosed with begign rolandic epilepsy at the age of seven. His first neurologist prescribed 600 mgs. a day of chewable tegretol. This dosage seems to be the industry protocol. Although I cannot speak for anyone but my own child, I would like to share his anti-convulsive medication history. Eventually, I decided to start my son on the chewable tegretol but elected to start at 200 mgs. per day (100 mgs. in the am and in the pm). After one week at this dosage his tegretol blood level was a whopping 9.3! I changed his dosage to 150 mgs. per day; 50 mgs. am, 50 mgs. afternoon, 50 mgs. pm. Since the chewable form of tegretol is immediately released into the bloodstream, the side-effects may be more pronounced especially in the initial stages of use. I therefore decided to try the tegretol extended release tablets. Unfortunately my son could not swallow them. After having a nocturnal seizure on the 150 mgs. of chewable tegretol daily, I had an appointment with an epilepsy specialist. He put my son on 100 mgs. am and 200 mgs. pm of the time-released Carbatrol which is available in 200 mgs. gelatin capsules (I split the capsule in half for the a.m. dose which he takes in applesause). The benefits of time-released medication can not be over-stated. The gradual release into the bloodstream may very well alleviate any side affects that occur with chewable medication. I hope this helps in some way during your time of uncertainty and worry.

 
Old 11-11-2002, 09:04 PM   #8
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Thanks for your reply KP. I haven't been able to get on lately as we have just recently moved and are just now trying to settle in. Things have been going ok with Kimberly and her seizures I guess. We just talked today with her regular dr. and he has referred us to another neurologist that specializes in seizures. The other neurologist we really didn't care for as he made Kimberly feel aweful and in tears whenever we saw him.
Kimberly is suffering from migraines and had to have her gifted status at school put on hold as the meds are making her so tired and she is really having a terrible time concentrating. She was on 600 mgs of Tegretol a day and had it lowered to just 400mgs a day last week and her dr. told me tonight to take her down to 300 a day starting tonight.She had her first series of blood work done today so we will see what her levels are shortly. She has another appt. with her regular dr. in two weeks for a follow up. Did you notice your child having really bad mood swings on tegretol? My daughter has gone from this always happy, smiling and all is right with the world kid to a very emotional wreck. She is angry alot of the time and cries almost everyday and doesn't even know why she is crying. It hurts so bad to see her going through this and I want to help, but don't know what else to do. Any suggestions anyone has would be welcome and prayers certainly do help. My thoughts and prayers are with all of you. God Bless each of you and yours.
Vickie

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[This message has been edited by 4hisglory (edited 11-12-2002).]

 
Old 11-12-2002, 05:22 AM   #9
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Check posts by Mom2Joy or me. Some of these things may help whether you decide to go drug free or not. Where is there E specialists in FL? Uof F? Thanks and good luck.

 
Old 12-17-2002, 11:21 AM   #10
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4His Glory, one other thing to remember is that some side effects do lessen as she fully adjusts to meds. It takes my son 4-6 weeks minimum to adjust to a new med. Good that the doctor is allowing a lower dose to see how that does for her. It is important to find the right dose, right med, and right time of day to give it. Help her to understand she can do anything she sets her mind to even with Epilepsy. Right now her brain is overworked due to the med adjustment and seizures. Help her relax about the gifted program and grades and work on her health for a time. I have met Congressmen, Lawyers, Poets, teachers... all having epilepsy. SOme important people to note who had Epilepsy...Alexander the Great, Hannibal, Saint Paul, Albert Einstein, Thomas Edison.... the list goes on with Van Gogh, Danny Glover, Tony Coelho(co writer of the AMericans w Disabilities Act......
__________________
mom of 2 teens who have battled seiuzres.

 
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