Need some help!
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UPDATED: Tue, 09/30/2008 - 12:21pm
sme mom
I'm new to this site, and desperatly need some help!
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I really need some advise. My daughter is almost 15 (next month) and she was dx with epilespy 2 1/2 years ago. She had a grand mal in class. After many EEG's and 1 MRI, she was stable on Lamictal 200mg twice a day.
During the last week of June, she started with a confusing series of seizures. Averaging at least one a week. During this time, because we had relocated to Washington State I needed to find a new neurologist. Since the beginning of July she has seen a nuerologist whom I don't care for, her first visit with him (was the day after we had her taken to ER after a grand mal where she was not breathing very well at the postical phase.) not only did he not pay much attention to her, he gave her Keppra and said " see ya in 4 months".
Since then I have dealt mainly with his nurse practioner, she is now to the point of recommending that I wait to have her see the other nuerologist. I don't think she knows what else to do. From last wed. Sept 24th to yesterday 29th she has had 8 seizures, nothing on the week end.
I don't know what to do next, I need someone to help her! If anyone has any suggestions or can offer any help I would greatly appreicate it. :)
By sme mom at Tue, 09/30/2008 - 12:21pm | 115 views | 14 comments
Topic: New to Epilepsy.com
Recent Comments on this Discussion
My 19 year old son had his first seizure four days ago. I was there when he had it. The seizure lasted about two minutes, he does not remember anything. His eyes rolled back in his head as he went into convulsions. After the convulsions stopped I noticed quite a bit of blood in his mouth. I thought it was due to him biting his tung or the inside of his mouth or lips. After he fully came out of the seizure, ten or fifteen minutes later we got in the car and went to the emergency room at a local hospital. But neither I nor the people in the emergency room could find any sign of a cut. The ct scan at the hospital found nothing unusual. A mri and a eeg have been scheduled. If the bleeding did not come from cuts in the mouth where did it come from? Freaking out !
Hello John!
I am glad to hear the appropriate tests have been scheduled for yor Son. All you can do at this time is:
Most importantly Breathe!!! It is possible this is the first as well as the last seizure. There are so many venues of the cause of it so at this time try to calm the mind chatter. Just to be organized just in case- put together a small duffle bag for the hall closet in case there at some point in time another emergency room trip is taken. In the bag put: A note book that has written in it symptoms/info. of the initial seizure. Look at the days before the incident- is there anything different about the days leading up to the seizure? In the bag also include any notes and copies from appointments and the tests he is going to have so it is immediately available for the dr.'s of the emergency room. Put comfortable clothes in the bag for your son including socks and underware. Put some extra cash in the bag including quarters for the coffee machine, trail mix and a paper back book- Emergency Rooms have a time schedule different from the rest of the world!!! Have copies of his medical card.
My son has had a few Grand Mals and with it one time he bit his tongue just a tiny spot and it bled very easily and an amount to it as it mixed with the saliva abundance that happened during the seizure.
Thank you for your kind response. I do have some important questions question about insurance. My son is not on medical assistance nor medicare. My wife passed away a year ago and my son had to leave my employer's insurance because he is 19 and not a student. I got him a short term policy that will expire in January. This seizure was out of the blue and I'm fortunate to have him insured at the moment. January fast approaches and I have no idea who will insure him and what they will cover and for what cost. Any advice is welcome.
Hi! I am a mom new to this site. I have been reading over different areas of this site and came across your questions. My son has been having un- controlled seizures for the past 10 years. What I have found most helpful in his seizure triggers is foods: keeping it organic and have figured out things that he seems to be sensitive to, get enough rest, florescent lights to a minimum, not being around any strong smells and keeping his body care products to unscented and organic as possible. Also, while in school I had him on a shorter daily schedule so he could get his core classes completed and then home for a cooked home meal and rest. This helped minimize his stress level from not being able to control the strong colognes/perfumes, etc. of other class mates, florescent lightening in class, and allowed for a rest period before needing to do his homework. The school should be willing to work with your daughters needs through her IEP.
Best wishes,
annam
I am new to this site today.... not a clue how to navigate around.... actually suprised to see this comments box.
i understand the desperately need some help.... i am not yet in a place to give it.... but do want you to know u r NOT alone.... and i have some hope that this site CAN provide some contacts and that this in itself is of help...
Patience is so not my strong suite....i want answers now.... i want so much....but mostly peace and acceptance and that my heart stays open.... thank you for sharing as that helps my heart to stay open...
I have no answers, but ii have hope that you will get some answers and that i will too ...
this is not an easy journey to walk....
thank you to all who are walking with me today...
Hi Annam,
Thank you for your insight. Things seem to be spinning around in my head these days.
How old is your son? Has his school been accomadating to his needs, willingly? I am now being told from Erin's school that because she has been missing so many days, due to her un-controlled seizures that she will need to start dropping classes, and playing catch-up on the others. Of course the class they want her to drop is her favorite ASL (american sign language) They seem to think that these seizures are no big deal! This is so frustrating, I talked to the nurse last Tuesday. This is after she had seizures both Monday, Wednesday, Thursday, Friday of the previous week along with the day before our phone call. She wanted to know why Erin didn't raise her hand and ask the teacher to walk her to the office. I tried to explain that when she is sz'ing she is only sort-of it. Her only thought is getting safe. She didn't seem to think of this.
With these types of sz she doesn't loose conscienceness but can't see, has double vision, and her eyes are shifting left and right. She was "feeling" her way down the hall to the office. She told me later that she had memorized the route to the office from each of her classes so she could find her way. This just brakes my heart to think of her in this situation.
I wonder if you have any advise on how to deal with the school and missing days because of un-controlled seizures? Usually after any of her sz she is down for the count so to speak for many hours, and still not quite right for awhile.
If anyone knows of something, or have any advise I would be greatly appreicate it. :)
I can't believe what I did...I replied to your questions and just hit the wrong button and it deleted it all!!! Bummer!! So, I hope I repeat what I initially wrote..so here goes...
When my son was in Elementary school on the onset of sypmtoms we held our first IEP Meeting. Once in high school I requested to have a new IEP meeting. This is a meeting with the principal, teacher in the RSP class (this is a class for students who need additonal help with their studies...Ty was in this class as it allowed for the teacher and aide to see what he was capable of completeing work wise, had smaller #'s of students in the class so was able to watch for how many seizures he might be having, etc) the psychologist, myself and toward the end of the meeting, Tyler. This was in California so your state/school may call it something different. Due to the uncontrolled seizures Erin is having, by law she is able to have this set up for her. They can do psychological testing to see how she is dealing with her symptoms, the social impact it may be having on her,etc. as well as educational testing to see where she is in her studies. This meeting can alter her core class requirements while still allowing for her to graduate with a high school diploma. From my experience for my son it was important to keep in the class that he loved to do as this kept him encouraged to go for the other morning classes. He would come home just before lunch, eat and then sleep for several hours before doing homework for his core classes we were homeschoolng him on. When he was having more seizure activity and he was not able to attend days in a row I requested homeschooling where a teacher would come into our home to help him in his education where I struggled. The school district has extra money in their budget for this and it is your right to have for your child. Having a supportive nuerologist involved is important. They can also help suggest what schooling needs Erin may have such as requesting an aide to be near Erin while in her classes until her seizures come under control. Ask Erin what she is wanting (such as keeping the sign language class) in this situation as this will give her the feeling of having choices and control in her education and life which will be empowering to her. There is always summer school and if need be an additonal year of schooling if necessary. Our school system as well as physicians work for us through money supplied through taxes for the schooling and out of pocket for the Doctors. If you feel you are not getting what you want for Erin or feel they are over looking this imporatnt time in your life it is time to put on some rubber boots and jump into the mud to get some things accomplished!! A determined Mom who is persistent gets what ones' child needs and deserve in these types of challenging times! Where do you live? California has a program called Alta Regional Center that would be important to get Erin enrolled in now while she is under 18 years old as this porgram would be benificial after she turns 18 as well. They help with some of the expenses of additional programs that she may need. They will also come into the IEP meetings to make sure she is getting what she needs. If not in that state your state may have something simular but a different name.
How self impowering of Erin to figure out how to get her self safely to where she needed to go. In this whole process I am amazed at what my Son has had to endure, has been willing to keep getting up every morning to greet a new day. He has been my biggest teacher in helping me learn patience, the gift of every day, learning to speak up for what is needed even if it is someone I may feel is smarter then I, Trusting in the Angels to follow and keep my son safe, and to expand my Mothers intuition to know how I can be of help to my son and know when it is needed and not just wanting to baby him as this would always be the easiest to do to feel I am Protecting him and educating myself in complementary health care that I would have never had the open mindedness to look into and apply!! We are all better people from this experience and I have Faith that Erin will be an amazing young woman from these times of struggle. Your answers will come but just be open to the doors it may open for her to receive healing.
It's not an easy journey so I offer to you a shoulder to lean on if ever you need it!! If any other questions don't hesitate to ask!
I just began reading a great book: Epilpesy: a new approach by Adrienne Richard and Joel Reiter M.D.
here is my e-mail:
anna@godsartroom.com
Please excuse any miss spellings...my computer is not allowing the spell check. I am definately a chicken pecking type typer....it doesn't look pretty but it gets the job done!!
Blessings to you and Erin!
Annam
PS If Erin is interested I could ask my son if he would be interested in an e-mailing pen pal with Erin and they can chat about their experiences. He is now 20 years old and works great with other teens/ young adults.. He recently volunteered all his time to organize 2 local programs for the every 15 minutes drinking and driving awareness programs for this past spring.
Hi There,
I've read thru the information here, and for the most part it looks like people have covered off a lot of what I would have. The one thing that seems to be getting left out in general is addressing "what do you do next?". This is where I might be able to help you out.
Myself, I was diagnosed with seizures at age 5 - taken off meds at age 12 (thought I'd outgrown this) and put back on meds at age 16 - no idea why to this date things came back other than maybe a virus. So, all I can do is work with my doctor and mange triggers.
So, where to go from here for you. "Heads up" If your daughter is 15, she's in an age bracket where things are equally tough on her (if not harder on her) than they are on you. My # 1 trigger for seizures is always STRESS - be it positive or negative. In reading your post above where you mentioned you relocated to Washington State, my question to you is where did you move from? To be more specific, did that mean your daughter started all over again with finding friends in a new school? If so, building a new life can be a HUGE stress factor, so the increase in seizure frequency there doesn't surprise me at all. Life changes alway trigger seizures for me - positive or negative. Triggers for me - hormonal, weather changes, caffeine, aspartame, and lack of sleep. The best thing I can do is take my meds consistently and lead a really consistent life. Wake up at the same time, go to bed at the same time, meals at the same time. Consistency is key to managing things. In fact, things got all out of whack over the past 2 weeks and on Thursday I ended up with a migrane, not a seizure luckily, but a killer headache.
You indicate that you don't like the neurologist's attitude. "Here's the prescription, see you in 6 months" is basically what I get from mine in Toronto, Ontario. He talks to me for about 5-10 minutes and does his mini-tests, writes the next prescription, then says see ya! Don't know about your health care system, but here - they don't have time. My family doctor it's even worse. I see the woman once a year & she hardly knows my name. I probably know my file details better than her - frightening as that is. In the great scheme of things, there's two options. If you have any questions, go in prepared with them. Do you homework - go in knowing what you want to ask about, so that the doctor can talk to you about those specific things. If you don't ask anything they will tend to say, OK, here you go - see ya in 6mths (or 4). Unless they see the need for tests, or you have questions to be answered, they don't go out of their way to bring up issues. Most doctors here don't anyway. So, go in ready. Then, if you find you're not getting the answers you like - don't be afraid to look at a doctor and say, ummm...justify your answer, give me a different answer or give me someone better than you. When I was 22 & graduated university my former neuro (local) put me on Lamictal & I hated it. The success of that sucked. I told my former neuro I had less seizures going out to bars in university & drinking killer kool-aids (true by the way). She couldn't explain why. That's when I got my doctor in Toronto who figured out leading a consistent life was good for me - but leading a consistent healthy lifestyle would be better. I did that for him, he found some better meds & other things.
Stress counsellors have always helped me keep things under control a bit better. So has having a gym membership. One word of advice to both you and your daughter. It's tough to accept being epileptic as a part of your identity, but the sooner she can accept it & realize that it doesn't destroy your life, you just have to be a bit accommodating, it makes it easier and some of the stress triggers will go away.
Find a medical team to work with (not against), monitor what is different on the days seizures happen in some form of seizure journal and work on getting the triggers under control by gradually accepting changes within her lifestyle (i.e. maybe less aspartame, caffeine, consistent routines). Acceptance and working with a medical team can go a long way.
I also know for me personally, it went a long way growing up that my parents treated me the same as always and I was their sports kid. They looked past the seizures and always have. They never let it impact anything I ever want to do in life. Try to be the same, a support system that can look past the seizures will go along way for your daughter. Make it seem like you accept her for her, no matter what.
Good Luck!
~Erin/GG
Hi Godiva,
Thank you so much for your experience and advise. I wanted to give an update on Erin. We saw a new nuero last Wednesday. She is FANTASTIC, and both Erin and I (as well as my husband Russ) feel really happy that we found her. She immediately order a 24 hour Video Monitoring to be done at the hospital. It turned into a 48 hour monitoring session. Good news is that they have re-evaluated her form of epilespy. They have now diagnosised her with JME. They are weaning her off of the Lamictal, which was not working for her and they will start her on new meds on Wednesday.
I feel exausted, I know she does as well. When the epi told her that this is a life-long thing, it got to her a little. I know she was hoping it would go away. After the initial news that it was here for life, she said that it was okay because she has 2 friends that have cerabal palsy, and one that takes meds for anixity and one that has asthma. Her attitude is "why not me as well". I have to hand it to her, don't know if I would be so addapting.
I think what got this episode kicked off was because in June she graduated from 8th grade and all of her close friends were in 7th grade. This means that she would be going to a huge high school without her close buds. As you can imagine this thought produced some high stress in her.
Since she has gotten home she had a seizure last night, probably thinking and stressing about school today. In the last week alone she has had 9 seizures and I know she is afraid. We have been trying to reassure her that we will get the right med combination, and get control over the seizures. Any suggestions or helping her through this tough time? Please if any one has any experiences, advise to help it would be greatly appreicated. :)
Hey...I dont know if this will help you or not....
I started getting seizures in my early 20's (i'm 26 now) and at that time I was diagnosed with poycystic ovaries, which messed up my hormones big time and around my period is when I was getting the seizures at night time. Also during that time I found out that I had hypoglycemia (low blood sugar) and I will admit, I wasnt eating good at all, I was eating very little to lose weight. So, when my sugar levels would drop, I would have a seizure that night. Sometimes I would get seizures if I didnt enough sleep too. I was starting to see a pattern of when I would get seizures. My doctor put me on Lamictal and that helped me out a lot! He also put me on birth control to help me regulate my hormones arouond my period and that was a success too.
Anyways..... have you notice any patterns when your daughter gets her seizures? Like period, not eating, no sleep, etc?
I know that she is a teenager, but I have to ask "does she eat enough, has she lost weight recently?" I know that i didnt like to let people tell me that i had an eating disorder, but I was able to overcome it, thanks to my parents. My mom was the first to notice it, when i wouldnt eat much. That's just my expirience, I dont want to offend you telling you that your daughter might not be eating well. But it might be a good idea to get her tested for diabetes, especially if it runs in the family.
Have you brought her to the gyno? Does she have painful periods? After I complained for months about my painful periods, my mom brought me and they found the cysts. I know she's young, but BC might help her out, if that's the problem.
Make sure she gets enough sleep, even when she's at her friend's houses overnight. Did you inform her friend's parents that she has seizures? It's probably a good idea, so if she has one at their house they know what to do. I always told my roommies that I have had in the past becuase I didnt want them to freak out and just call 911, when all really needed to do is just wait for the person to get out of the seizure and make sure they were okay at the end.
Last month I went to the pharmacy and they recommended taking the generic for Lamictal, so I did and now i regret it. I had a couple of seizures that week and my neuro said that the generic is only 80% effective than the brand name. I dont recommend the generics, unless the doctors say its okay and maybe they might up your doesage to make it 100%.
Well...I'm writing a novel to you, I hope I might have helped out a little. I hope that you can find a better doctor for her, sounds like he doesnt care. Keep a list of things that you want to ask the doctors and bring it in with you, so you remember everything important to tell them. Lemme know if you need anymore info :)
Hi lowie82, Thank you so much for your input. Please don't worry about offening me, I don't get offended by ones trying to help.
You asked me about noticing any changes around her period time. She does have more activity around 3 days before or 3 days after. Sleep is also a big trigger. She really trys to get enough sleep because she knows that this is a trigger for her, but she is a teenager.....ha ha. She is great about letting all of her friends know about her epilespy, although it seems, and I hope I'm wrong that when seizures get more active they retreat some.
She has only recently started the generic Lamectal @ a month ago. The nuerologist has been messing around with her meds for 2 months now, with not one face to face visit. This bothers me a lot! Right now she is on Lamectal and Zonisamide, with a lot of activity.
Have you ever had any "telematry testing" ( not sure of the spelling or exactly what it is) Any experience?
Hi SME MOM.......my thoughts are with you ---- Luckily, I am the one with the seizure problem - my son never did. That must be tough watching your child go through that. I have experienced the prescription writing/see you next year doctor and it was a nightmare. If you have an Epilepsy Foundation in your area, you might contact them about suggesting a Neurologist that you will feel better with. Some Epilepsy Foundations also have really good support groups and you can get input on Neurologists from people who have epilepsy. Also, something I wanted to bring up to you is when I started on Keppra I had severe nauseau --- they gave me Phenegren for the nauseau and Phenegren caused me to have more seizures. My pharmacist said certain medications (even some over the counter meds) will cause some people to have seizures if you are prone to having seizures. Of course not everyone experiences the same side effects, but it's something you might watch out for. I have been doing some research on supplements (Magnesium and B12) for myself that help some people with their seizures, but don't know enough about them -- if anyone out there has any info on these please send to her
Hey, wow that's crazy that he has been messing around with her meds like that without an office visit. I'v never heard of the telemetry test, but I did some research for you: found it on this site: http://www.epilepsynse.org.uk/PAGES/info/leaflets/diagnosi.cfm I couldnt find a site that was in the US, but UK I did a lot of. This is what the site said, I copied and pasted it for you:
Video telemetry
Video telemetry testing happens in hospital, usually over a couple of days. During your stay you have your own room. In the room, often mounted on the wall, there is a video camera that records what you are doing. At the same time you will wear a portable EEG
so that you are able to move around your room. Being videoed whilst wearing an EEG means that if you have a seizure your doctor can compare the electrical activity of your brain with what is happening to your body.
The results can help identify what types of seizure you are having, and the most appropriate way of treating them.
I googled again and found http://209.85.173.104/search?q=cache:LMagkNr2MtcJ:www.epilepsy.com/blogentry/964924+telemetry+testing+seizures&hl=en&ct=clnk&cd=21&gl=us this is right from this website, look at the second reply RE. That person talks about it too.
I've only had the Sleep-deprived EEG and Ambulatory EEG that was horrible, read the description on that UK site lol, as a teenager I know I would have hated that one with a passion, I did in my mid twenties lol.
I also wanted to ask you if her doctor requested blood work? I was tested this month for my Lamictal blood levels....I had to get my blood drawn in the AM, without taking my meds, but i was allowed to take it the night before, this test will show the doctors if the medicine is going through your body properly. The test results will either show High Levels, Normal Levels, or Low Levels. Mine was Low, so he increased my dosage a lil and wants me to do it again once i finish increasing it.
You can also talk to her gyno and see what he/she might say about the activity before and after her period, she might need birth control. Maybe her gyno can refer you two to a new neuro, seems like he's a peice of work lol.
If you need anything else, dont hesistate to ask, I'll keep checking this site! :) have a good night
Hello, I tell you it's so great to get some feed back! My daughters seizures are so crazy right now it's hard to have her go about her life. She rides public transit to and from school, and on the way home she walks part of the way, I tell you what.... the thought of her having a seizure during this time is such a worry I can't stand it.
I have identified 3 different types of seizures that she is having. "no warning" grand mal, she also has grand mals where she has some warning, she feels "EXTREMELY" tired, and goes to bed and grand mals there, then the newest one is vision related. She doesn't loose conscienousness, but it starts with double vision, bouncing images, and very blurry vision... as time goes on the first to stop is the bouncing, then the double vison, then finally (usually after 2-3 hours) the fuzzy vision returns to normal.
Have you ever heard of the vision type seizure, or has anyone? This has been going on for about 2 months. I originally thought that maybe a side effect of the meds. But the characteristic are so much like seizure. Quick onset, long postictal time.
???? I thank you again for your experiences, I will look up the info from the website you gave.