Medical Forum / Diseases and Disorders / Epilepsy / June 2005
Looking for Support - Daughter with seizures
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theburnetts@yahoo.com - 25 May 2005 03:13 GMT My 9 year old daughter had her first Grand mal seizure about 4 weeks ago. We met with an excellent pediatric neurologist who had an EEG done, examined her and then prescribed Depakote. She diagnosed Petit mal seizures and was able to induce one during the office visit. After about a week of Depakote (gradually increasing dose) she had another Grand mal seizure. She told us to up the dosage of Depakote. The next day she had another Grand mal seizure. She then told us to stop the Depakote because in a very small percentage of patients Depakote can actually bring on seizures. So we stopped. Then the next day she had a Petit mal seizure while we were in a restaurant. Then we had a full day of no seizures. We met with the Dr. again and had another EEG done. She said the EEG looked fairly normal but she was able to induce a small absence seizure in the office. She decided to start her on Zonegran. Now today she had two more Petit mal seizures here at home. The Dr. told us to move up to 100 mg of Zonegran.
This is our first experience with this and as parents we are a bit scared. I have witnessed two of these seizures first hand. Just looking for any sort of reassurance from other parents or patients out there. Is it normal for the Dr. to kind of "search" for the correct medication and dosage? It seems like she is just trying different things to see what works. I have read some stuff on the web that suggests that these seizures can be hard to diagnose and this the normal routine for doctors to figure out how to treat them. I just worry about my little girl.
Any feedback would be helpful. Thanks, Corey
Patsy and Darryl - 25 May 2005 06:02 GMT Hi Corey, In my own experience (over 30 years with epilepsy) it has been normal for the doctors to fish around a bit with different medications. The reason being that we all react differently to them. What completely stops one person's seizures may aggravate the seizures of another person who has the same type of seizure. They are able to tell from the type of seizure, which meds are most likely to help, but it's still a little bit hit-and-miss. So the more information you're able to give them regarding exactly what happens during one of her seizures, the better idea they'll have about where in the brain the seizures originate and how to treat them. Keeping a diary of how often she has them and exactly what occurs will help. That way you can simply give that to the doc, rather than trying to describe things from memory. When I first developed epilepsy at age eight and was having grand mal seizures several times each day, they put me on Dilantin which quickly got them under some semblance of control. Perhaps you could ask them if it would help her. Hope things go well for you and your little girl.
Kind regards Darryl.
> My 9 year old daughter had her first Grand mal seizure about 4 weeks > ago. We met with an excellent pediatric neurologist who had an EEG [quoted text clipped - 24 lines] > Any feedback would be helpful. Thanks, > Corey 777 - 25 May 2005 06:18 GMT I'm not a doctor. I had lots of petit mal seizures when I was a kid. I outgrew them when I was in college. I didn't outgrow all my epilepsy. I don't drive a car, I only average one grand mal seizure a year. The medication makes me feel like crap, so I don't take it..
How many grand mal seizures did she have before she got any medication? I wouldn't give medication to control *only* petit mal seizures. Maybe they look weird to you, but your daughter doesn't even know she's having them.
Like I said, I'm not a doctor. I'd stop all the medication (ask the doc how to do it safely) and see how long she goes without having another seizure.
Your doctor can't "induce" a petit mal seizure unless he does something like flash a strobe light in her face. Maybe you meant to say the doctor saw one. I bet she's having them every day.
Testing different medications to find out what works is what doctors do, but you shouldn't feel a need to put her on medications unless she is having a lot of grand mal seizures.
If you're near NY, I'd recommend Montifore Hospital
> My 9 year old daughter had her first Grand mal seizure about 4 weeks > ago. We met with an excellent pediatric neurologist who had an EEG [quoted text clipped - 24 lines] > Any feedback would be helpful. Thanks, > Corey G.Ross - 25 May 2005 07:23 GMT > x-no-archive: yes > > I'm not a doctor. I had lots of petit mal seizures when I was a kid. I > outgrew them when I was in college. I didn't outgrow all my epilepsy. I > don't drive a car, I only average one grand mal seizure a year. The > medication makes me feel like crap, so I don't take it. ************************************************** Some people react more negatively to pills than others. Your diagnosis (from a distance) isn't necessarily what she's having. Because you had to stop using whatever was prescribed won't mean that she may not get control with a Doctor supervising her case.
> How many grand mal seizures did she have before she got any medication? I > wouldn't give medication to control *only* petit mal seizures. Maybe they > look weird to you, but your daughter doesn't even know she's having them. *** A Doctor should determine above. Based on EEG and other tests they are better able to determine if a Petit Mal might progress to something stronger or not. You can't be sure that 'only a petit mal' won't become something stronger without her medical history.
> Like I said, I'm not a doctor. I'd stop all the medication (ask the doc > how > to do it safely) and see how long she goes without having another seizure. **** If the EEG etc. still shows epileptiform activity, the Dr. should be the one to determine when it's best to change or discontinue medications someone is using. Some of the pills can produce worse seizures if stopped too quickly or just to 'see what will happen'.
> Your doctor ***can't "induce" a petit mal seizure unless he does > something > like flash a strobe light in her face. Maybe you meant to say the doctor > saw > one. I bet she's having them every day. ***** Yes they can, depending on the type. You listed one of the tests that is included in looking for triggers of possibly seizure types. Some of those are the same things they do while we're wired to an EEG during that test too. /
> Testing different medications to find out what works is what doctors do, > but [quoted text clipped - 18 lines] >> Zonegran. Now today she had two more Petit mal seizures here at home. >> The Dr. told us to move up to 100 mg of Zonegran. *** I haven't used either of above medications, but it would not be unusual for the first one (Depakote) to still be in her bloodstream for a number of days after telling her to 'stop taking it'. The Petit mal one day after stopping could be a reaction to abruptly stopping? or result of having no AED levels left in her bloodstream (if it were flushed out that quickly). Someone else 'here' can comment on experiences with those two medications. Usually a target dose would be set based on body weight and expected metabolism, then that level would be followed for 2-3 weeks before bloodtests or followup. Since the Dr. changed the first pill so abruptly, I'll assume they had a reason to. Hopefully the second pill will work for her and they'll leave her at a target level long enough for her body to reach a stable level while they look to see if that pill will control her seizures. It's not uncommon to have to try 2 or 3 pills depending on the reactions or seizure type they are treating. I was just surprised at the 'abrupt' change, since I was left (for *my type) on Dilantin for 6-8 weeks before they decided *that wasn't working, then next 6 months on Tegretol, before it was adjusted down and a second pill added. It took me almost 2 years to reach my 'final level'. I'd expect that could be harder for someone so young, who's still growing and metabolizing at a different rate than an adult, *then they will likely need to change or adjust doses later when Puberty sets in. ... /
>> This is our first experience with this and as parents we are a bit >> scared. I have witnessed two of these seizures first hand. Just [quoted text clipped - 7 lines] >> Any feedback would be helpful. Thanks, >> Corey *** What they're doing is not likely as apparently 'random' as it might look to you. The Brain is a fairly complex little machine, and while one of us might work Fine with e.g. Tegretol (mine), that is specific to my type of Temporal Lobe seizures, and likely totally inappropriate to another type, and certainly is rarely given to children or younger people because it can affect bone development. Usually the Dr. will start at a 'low dose', then slowly increase to the target dose (or less), since some of the pills will produce a reaction if the 'ideal dose' is exceeded, and if the patient then reduces the dose they may no longer get the control they *had while they were slowly increasing levels. As I mentioned above too, some of the pills are more sensitive to the rate our bodies purge chemicals in the bloodstream, and flush out any pills we are taking. Younger people might need a lower dose, sometimes more frequently, since they may purge the blood levels more quickly. Others here will give you input over next 2-3 days, or you can ask more questions. Many of the 'regulars' only read the group each 2-3 days, so comments on the pills you're using may not all come in during the first 12 hours. Do youhave a Local Chapter of an Epilepsy Association near you? If you do, it might be worth joining them also, as some of them have specialists on call who help with Families and Children newly diagnosed, and you could get input from them, specific to some of your questions. The Toronto Canada chapter near me, also has a Children's Specialist who puts on courses and seminars specific to the sorts of questions you likely have, as someone newly encountering this. Note too, that depending on the type and severity of the seizure condition, that some people can outgrow these. Just because someone *else here has had xyz for 20 years or has used yyy type of pills for 8 years, doesn't mean that your daughter will. Each of our cases may have some similarities, but we are each different too in how we react or outgrow this condition. G./
Chris Lesurf - 25 May 2005 07:04 GMT I've also had epilepsy for more than 30yrs and it's just a case of adjusting to one's own sort of seizures and getting a pot luck balance between anti-convulsant and side effects.
I spent the first 5yrs taking 90mgm phenobarbitone and was very sleepy. I've also taken carbamazepine which worked fairly well; phenytoin which makes one's gums grow and is therefore uncomfortable; Keppra which caused fluid retention and a lot of pain round joints and I was booked for a carpal tunnel operation as the doctors seemed to have no idea what was going on. I was a guinea pig for lamotrigine (sold as Lamictal) and have been on it ever since. Apart from producing a lot of little lymph bumps which have stayed (and turned into harmless little moles or wart-like bumps if the skin is disturbed).
I am still having complex partial siezures but they cause less bother than other people's attitudes. Once you've adjusted to your daighters' )and I expect the grand mal ones will be almost completely controlled with the right dose of the right medication), my advice would be to educate all those she contacts frequently. I say that because a friend of mine had epilepsy long before I did and I used to worry about having to look afteer her and not knowing what to do. First Aid wrt grand mals is the same as anyone else collapsing but the seizure should be left to finish by removing objects around and cushioning the head.
If she's lucky she'll have an aura beforehand (mine are like exam nerves but obvious to me what they are) and if I tell my husband soon enough he's often able to calm me down and prevent an actual seizure.
I also regard it as important to educate as many people as possible so they will worry less and not make your daughter suffe from prejudice because other people's fear due to ignorance.
I find 2 or 3 things tend to trigger mine eg getting over-excited/bored or not keeping my blood-sugar level up (ie I avoid long periods without food).
Best of luck !
Chris L.
> My 9 year old daughter had her first Grand mal seizure about 4 weeks > ago. We met with an excellent pediatric neurologist who had an EEG [quoted text clipped - 11 lines] > Zonegran. Now today she had two more Petit mal seizures here at home. > The Dr. told us to move up to 100 mg of Zonegran.
> This is our first experience with this and as parents we are a bit > scared. I have witnessed two of these seizures first hand. Just [quoted text clipped - 5 lines] > normal routine for doctors to figure out how to treat them. I just > worry about my little girl.
> Any feedback would be helpful. Thanks, > Corey Mary Fisher - 25 May 2005 10:35 GMT > I've also had epilepsy for more than 30yrs and it's just a case of > adjusting to one's own sort of seizures and getting a pot luck balance [quoted text clipped - 35 lines] > > Chris L. What an excellent post, thanks, Chris.
Mary
Jim Garland - 25 May 2005 15:05 GMT Hi Corey It is a scary thing to see someone you love have a seizure and especially when that someone is your daughter.. I have epiliepsy and can assure you that it takes the doctors awhile to decide which medication is going to work best for the individual patient and also how much dosage is required. I have had lots of doctors and the one I felt most in tune with told me that when it comes to epilepsy it is mostly up to the patient feedback to help the doctor decide what is the best treatment but when you are young like your daughter no doubt she is scared and not able to really describe how she is feeling or if she is a bit" off " one day etc....so that is when you need to keep a log of how she is doing and really take note of mood swings,changes in emotions,attitudes etc.... I wish you and your daughter all the best and come to this group often as it is nice to be able to express what you deal with and have people understand. cheers Jim
> My 9 year old daughter had her first Grand mal seizure about 4 weeks > ago. We met with an excellent pediatric neurologist who had an EEG [quoted text clipped - 24 lines] > Any feedback would be helpful. Thanks, > Corey Dave ©¿©¬ - 25 May 2005 16:25 GMT Howdy Corey!
It IS normal for doctors to "fish around"
In many cases they find a drug or a combination of drugs that fully controls the seizures. In some cases (mine for instance) they can never fully control the seizures. They call that "intractable epilepsy."
 Signature Dave ©¿©¬
http://www.howdydave.com
> My 9 year old daughter had her first Grand mal seizure about 4 weeks > ago. We met with an excellent pediatric neurologist who had an EEG [quoted text clipped - 24 lines] > Any feedback would be helpful. Thanks, > Corey Dave ©¿©¬ - 25 May 2005 16:26 GMT Howdy!
Then again...
In some cases the epilepsy just "goes away" when a child reaches puberty!
 Signature Dave ©¿©¬
http://www.howdydave.com
> Howdy Corey! > [quoted text clipped - 32 lines] > > Any feedback would be helpful. Thanks, > > Corey Julie - 25 May 2005 21:46 GMT Hi Corey, welcome to our group. Be aware of things in your daughter's environment that might be triggers: flashing lights; cold and flu (not a good plan to add over the counter meds); MSG is a trigger for me. I know that she is only 9 years old, but has she started menstruating? That was a trigger for me when I was young, and there is info. I can add about hormones and seizures.
Take care, Julie, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org
> My 9 year old daughter had her first Grand mal seizure about 4 weeks > ago. We met with an excellent pediatric neurologist who had an EEG [quoted text clipped - 24 lines] > Any feedback would be helpful. Thanks, > Corey Chris Lesurf - 05 Jun 2005 08:05 GMT I was told that epilepsy is likely to start or stop at puberty, pregnancy or menopause and mine, in fact, started when I started taking contraceptive pills, which is, in effect, imitation pregnancy.
Damage had been done to my brain 4 yrs earlier and was obvious when I had an Emiscan several years later, but the epilepsy didn't start until I went on The Pill.
I lived in hope that it would go away when I reached the menopause but had no such luck. However, with my current a-cs and having been prescribed an anti-depressant when my emotional instability was eventually diagnosed as bipolar disorder (manic depression) I am now far more level headed with fewer fits than when my epilepsy started.
My advice is to make sure that one's brain energy is not allowed to rise too quickly but is used as much as possible. Getting bored can be as much a trigger as getting over-excited. Also, beware that doctors don't assume that everything else differing from the norm is due to the epilepsy. After a sudden change in drugs (with no warning from my GP) it took my husband several days before the symptoms of a small stroke were paid any attention. However, it was not acknowledged as a stroke until I had another emiscan and another small scar was seen.
The best attitude is to ignore it as much as possible and educate others to take it in their stride. There will only be prejudice (negative or of the positive head-patting pitying type - just as isolating) as long as there is fear due to ignorance. Being given information as to recognising a fit a knowing how to deal with it can help others relax.
My fits are complex partial ones and after the actual fit I either go to bed or go home and, with no memory of it afterwards, if someone tries to stop me I fight. I must be aware of what's going on at the time because, although I bump into things and find I've gone the wrong way, I've never been knocked over or had any bad accidents in the 33yrs I've had it.
I'm also lucky that, when I have one of my rare major fits, I don't lose control of my bladder or my bowels.
Keep as positive as possible and encourage your daughter to be as involved as anyone else in everyday life. She may well develop as more reasoned attitude to other people's variations from the norm and be able to use it to their benefit.
I still record all my fits (including the pre-fit auras I get that don't actually develop into fits) so that I can give an accurate report to doctors. Details of possible side effects are also worth are also worth discussing with doctors and don't forget that they may have more theoretical knowledge of epilepsy in general but you and your daughter are the ones with the actual facts about hers.
I also once read an article about the possibility of there being an 'epileptic personality' which included talking too much, so I'd better stop !
Cheers,
Chris L.
> Hi Corey, welcome to our group. Be aware of things in your daughter's > environment that might be triggers: flashing lights; cold and flu (not a > good plan to add over the counter meds); MSG is a trigger for me. I know > that she is only 9 years old, but has she started menstruating? That was a > trigger for me when I was young, and there is info. I can add about > hormones and seizures.
> Take care, > Julie, Volunteer Webmaster > Epilepsy Foundation of Idaho > http://www.epilepsyidaho.org
> > Any feedback would be helpful. Thanks, > > Corey gorf - 26 May 2005 01:50 GMT > My 9 year old daughter had her first Grand mal seizure about 4 weeks > ago. We met with an excellent pediatric neurologist who had an EEG > done, examined her and then prescribed Depakote. <snip>
> We met with the Dr. again and had another EEG > done. She said the EEG looked fairly normal but she was able to induce > a small absence seizure in the office. Epilepsy as I understand it is just an abnormally low threshold for seizures. Everyone can have them, it's just that factors like alcohol, lack of sleep, drugs, stress, flashing lights (photosensitive), etc. can increase the chances that people will have a seizure.
You say that your daughter's second EEG was "fairly normal" and you didn't mention anything about the first other than the doctor's final diagnosis. Have you considered a second opinion? Maybe the seizures are being brought on by something in your daughter's environment and she's not actually suffering from epilepsy.
Best of luck!
-- gorf
Patsy and Darryl - 26 May 2005 04:16 GMT >> My 9 year old daughter had her first Grand mal seizure about 4 weeks >> ago. We met with an excellent pediatric neurologist who had an EEG [quoted text clipped - 21 lines] > -- > gorf Personally I don't put a lot of faith in EEG results. I've had epilepsy for over 30 years and the only time anything showed on an EEG (and I've had dozens of them) was when they did video EEG monitoring, which involved taking away all my meds to induce seizures....and boy did it induce seizures. I was in status for seven hours believe it or not - so not surprisingly the EEG was able to pick up something during that time.
Darryl.
theburnetts@yahoo.com - 07 Jun 2005 18:22 GMT Thanks so much for everyone's messages. Things have calmed down a bit. We've now gone 7 days since her last Grand mal seizure! Woo hoo. :) We have settled into a combination of Zonegran and Zarontin that seems to be controlling the seizures. From time to time she does still seem a little "off" or strange. Her memory can be a little mixed up some time and she seems to need a lot more sleep than before. But overall our family is returning to normal. My wife and I are breathing a bit easier and I don't find myself watching her every 5 minutes to see if she is going to have another seizure. But at the same time, I guess there is no guarantee that she couldn't have another seizure tomorrow. Thanks again for everyone's information and encouragement.
Corey
Julie - 07 Jun 2005 18:58 GMT Hi Corey, nice to hear things are looking up. I think our children do respond in a possitive way to our attitude and it helps to have the "glass half full" look at life.
She may start to adjust to her meds and the need for sleep and memory may get better, or it may be a side effect that she will have to cope with.
Take care, Julie
> Thanks so much for everyone's messages. Things have calmed down a bit. > We've now gone 7 days since her last Grand mal seizure! Woo hoo. :) [quoted text clipped - 9 lines] > > Corey Mary Fisher - 07 Jun 2005 20:14 GMT > Thanks so much for everyone's messages. Things have calmed down a bit. > We've now gone 7 days since her last Grand mal seizure! Woo hoo. :) [quoted text clipped - 7 lines] > there is no guarantee that she couldn't have another seizure tomorrow. > Thanks again for everyone's information and encouragement. I think that it would be good just to accept when an incident occurs and not be waiting for it. I know it can be stressful but some time or another you're going to have to accept that you haven't seen the last one and, hey, what does it REALLY matter?
Mary
> Corey theburnetts@yahoo.com - 07 Jun 2005 20:44 GMT Well, I see your point. But as a father I want my little girl to be safe. While I know that I can't do anything to prevent a seizure or anything to stop a seizure, I can do something to make sure that she is safe when she is having a seizure. So from a parent's perspective I have been a little on edge when she is doing things like taking a shower or playing basketball or swinging on the swing set. These things seem to be so random and it seems like she could just collapse at any time. So I'm just trying to make sure that she doesn't fall over and split her head open on the sidewalk!!
You're right that we haven't seen the last one. And yes I have accepted that they are a part of our family life. But that doesn't mean I don't want my little girl to be safe.
Corey
Mary Fisher - 07 Jun 2005 21:18 GMT > Well, I see your point. But as a father I want my little girl to be > safe. While I know that I can't do anything to prevent a seizure or [quoted text clipped - 5 lines] > at any time. So I'm just trying to make sure that she doesn't fall > over and split her head open on the sidewalk!! I can understand that. I had five children in seven years, it wasn't easy keeping an eye on all of them all the time.
ALL children are likely to fall, trip, run into something and the like whether or not they have fits. As a parent you must learn not to be waiting for these things to happen - but of course you must be prepared in case they do.There's a difference.
> You're right that we haven't seen the last one. And yes I have > accepted that they are a part of our family life. But that doesn't > mean I don't want my little girl to be safe. We all want our children to be safe. We all want our friends, parents, spouses to be safe. To be on edge all the time is not a good attitude for you or the child. Enjoy the good times.
I might sound hard but I'm not. I know what it's like to have a blind child who can walk into danger. I know what it's like to have a deaf child who can't hear traffic or warnings. Epilepsy isn't the only condition which affects the care of children - my point is that ALL children are precious and need caring for. They don't need worrying about.
Hugs,
Mary
Chris Lesurf - 08 Jun 2005 07:55 GMT I've had epilepsy for 34yrs and been married for 22 but my husband still treats me like a little girl some of the time !
I felt better when he started having the courage to go to work while I was in the bath but when I spent a night away from home last week he said he felt concerned about my welfare several times every hour.
My advice would be try to stop your concern showing very much because your daighter might be lead to feeling that her condition is more troublesome than it has to be. And I would certainly encourage not showing and certainly encouraging others not to show molly-coddling head-patting sort of pity. What she needs is encouragement and reassurance that she is worth as much and able to achieve similar attainments as others.
Try to persuade others to regard her as someone who has an unenviable condition not a person who is wholly disabled, and never let anyone call her 'an epileptic'. She's a lot more than a type of fit !
Chris L.
> Well, I see your point. But as a father I want my little girl to be > safe. While I know that I can't do anything to prevent a seizure or [quoted text clipped - 5 lines] > at any time. So I'm just trying to make sure that she doesn't fall > over and split her head open on the sidewalk!!
> You're right that we haven't seen the last one. And yes I have > accepted that they are a part of our family life. But that doesn't > mean I don't want my little girl to be safe.
> Corey Mary Fisher - 08 Jun 2005 11:51 GMT > I've had epilepsy for 34yrs and been married for 22 but my husband still > treats me like a little girl some of the time ! [quoted text clipped - 15 lines] > > Chris L. Well said, Chris, I wish I could have been as gentle :-)
Mary
theburnetts@yahoo.com - 10 Jun 2005 20:12 GMT Believe me, I do understand the impact of other people's actions and attitudes to her feelings about herself. I agree about treating her just as I would treat our other two children. However there are some practical issues also. Yesterday she had her first Grand mal seizure since last Tuesday. So she had gone nine days without a seizure. But it looks like the medicine that she is on right now is not completely controlling the seizures. As parents we are not sure about certain activities for her. She is scheduled to go to a day camp for a week at the end of July. She is signed up for horse back riding, swimming and other physical activities. Should we send her or not? If she were to have a seizure while swimming she could drown. If she were to have a seizure during horseback riding she could fall and really injure herself. Now I also know that my other daughter who does not have seizures could also injure herself at this camp. I definitely do not want to severely limit my older daughter's activities for the rest of her life - but at the same time I don't want to be stupid and put her into dangerous situations given her new condition. It sounds from some previous posts that I should just accept her new condition and really view her seizures as "no big deal" and just let her do anything else a normal 9 year old would do. So far we have not been able to identify any type of trigger activities or any type of aura. So from our perspective they can happen at any time. The doctor has recommended that we really make sure that she gets enough sleep and rest and that she doesn't overly exert herself. As you can see I am struggling with how to handle this a bit. I want to be a smart parent and take care of my daughter but I also don't want to give her a complex and make her feel that she is worth less. I hope this post makes sense.
Thanks, Corey
G.Ross - 10 Jun 2005 22:23 GMT > Believe me, I do understand the impact of other people's actions and > attitudes to her feelings about herself. I agree about treating her [quoted text clipped - 20 lines] > that we really make sure that she gets enough sleep and rest and that > she doesn't overly exert herself. As you can see I am struggling with ***************************
> how to handle this a bit. I want to be a smart parent and take care of > my daughter but I also don't want to give her a complex and make her > feel that she is worth less. I hope this post makes sense. > Thanks, > Corey That sounds perfectly correct to me. Several of the seizure types can be aggravated by lack of sleep (as you are attending to above). Are there people (adults) going on the trip who would know what to do, or do they set up a 'buddy system' (like some camps do), so that some of your safety concerns could be addressed? You could also pass on to them the comment from your Doctor (**s above) that she not 'over-exert herself', and they might be able to guide her away from too many high exertion activities in too short a time period, while letting her still enjoy her experiences. There are several people 'around here' who have grown up with Epilepsy. Realize though too, that *they grew up in the 1960s and 70s in some cases, and attitudes, first aid, and 'inclusiveness' have improved since they were young. Some of the trips now might include an on-staff medical person or nurse who might be present. And as she's probably aware about your concerns, and why you are speaking to the organizers before she goes, I'm sure she wouldn't knowingly take part in any activities if she wasn't feeling well or was worried there might be a risk. In those instances, she could ask the Councillor to either let her sit out an activity, *or reschedule her turn to a time when she's feeling better. That way she might get maximum benefit from taking part in most of the activities, but know that she's going to help *you sleep nights and be happy for her that she is taking control of her own condition too.
Have you looked at Julie Walton's Idaho website yet? The web address is at end of most of her posts. They have sections now set up for information for Families, Safety and Seizures, information that might be useful to you specifically with respect to children and seizures. If you decide to go ahead with the Camp and possibly the Water Sports and Swimming, the Idaho site has 2 pages you could print and send to the Camp Leader with her -- within the site they're listed under First Aid for Seizures and First Aid in Water (slightly different than the basic one). On each page there's a 'printable version' button you can click onto that produces a black on white page that is printer ready, and that you can print off to send along.
(If there's a Pre-Camp parent's orientation, you could go on your own and explain to them about your worries, and take along copies of pages above too. *Note that a year or 2 ago, there was someone who posted that one of their school? camps had refused to allow her son to go on one of the trips, since they were concerned about their possible liability (the school's), *and the safety that they might not be able to guarantee for the child. I don't recall if they posted whether they had got around that, or just didn't send him to that camp. )
I also don't know if you saw an older post (about 3? weeks ago) where I posted to someone about Children's Medic Alert Bracelets that were available in North America now. I don't know if that would add a lot to above preparedness, since so long as the Camp Councillors knew about her condition and had other documentation, they'd likely be the ones watching her most closely, and they'd know about her condition. ********* I see now too, re-reading your note above, that this is a *day camp? Most of what I wrote above I was trying to envision what I'd do with a 1-2 week long camp, where she'd be away for that long before you saw her. Since she's going to be home each night, there's less risk that some of the other 'campers' are going to keep her awake all night 'goofing around' after lights out. So you could assess, as the week progresses, how she's making out and see that she's getting enough rest between each day's activities. That might work better and let you be a little more comfortable, since you have 'timepoints' where you can see how she's doing as the camp progresses, and how it's working out. That could work you know. Of course you're nearer to her and the type of seizures she has. I was just reflecting how I'd look at it, if it were my Daughter back in school. (*I'm the one who had the seizures, not my own daughter, btw. ) G./
Mary Fisher - 10 Jun 2005 22:54 GMT > Believe me, I do understand the impact of other people's actions and > attitudes to her feelings about herself. I agree about treating her [quoted text clipped - 23 lines] > my daughter but I also don't want to give her a complex and make her > feel that she is worth less. I hope this post makes sense. It does. And Gaross's reply is very good sense too.
Does your daughter want to go to camp? If so, you must let her. to deprive her would be worse than anything, I think. The staff there will include people who are responsible for the welfare of all the participants and will be able to make sure that your little girl is as safe as she would be at home with you.
Mary
> Thanks, > Corey Chris Lesurf - 11 Jun 2005 07:52 GMT My suggestion would be to make sure the organisers keep a special eye on her and know what to do when she has a seizure - as much to stop anyone else getting in a panic. Education about epilepsy while young may make the others better equipped to help others in the future.
Chris L.
> Believe me, I do understand the impact of other people's actions and > attitudes to her feelings about herself. I agree about treating her [quoted text clipped - 6 lines] > the end of July. She is signed up for horse back riding, swimming and > other physical activities. Should we send her or not? G.Ross - 08 Jun 2005 20:52 GMT > Well, I see your point. But as a father I want my little girl to be > safe. While I know that I can't do anything to prevent a seizure or [quoted text clipped - 10 lines] > mean I don't want my little girl to be safe. > Corey I don't remember if you said if these were 'recent' or if she's had them for a while. If they're recent, while you're watching anyway, you could notice if there are any things she's doing or what's around her environment *if she has another one. Sometimes we have 'triggers' that can make us more sensitive than at other times. I had a few (as an adult) in mid-1990s, that didn't seem to have anything bringing them on. (I had been watching for what sorts of things might be triggering some of mine.) Then I happened to read one of the websites about the pills I was using. It turned out Grapefruit Juice (one of its acids) can interfere with the Tegretol I was using. I would have never thought to relate, e.g. using it in AM with my pills, to a seizure I had later that afternoon. This was when I was nearer to full control but the apparent 'randomness' of a few of them was frustrating as I had been so near to full control. Once I stopped using that juice, the last of mine went away. That only matters since I had been told in 1993 to 'hope for' 2-3 per month as a Target, based on the MRIs and EEGs I had at onset. Our bodies can change as we age and grow (like your daughter), and sometimes these can become less severe and interfere less with what we're doing. And as you get 'old', she'll always be 'your little girl'.... Mine is, even though it's me that has the seizures, and mine will be 30 soon ! G./
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