Epilepsy

[Moonrakers]

It looks as though my 3 1/2 year old daughter is epileptic, she hasn't been diagnosed yet (Scans have as yet revealed nothing), but it is looking almost certain that epilepsy is the problem.

Despite having seizures about once a week, it does not appear to be causing her any real harm but I was wondering if anybody on here has any experience with epilepsy in young children that they could pass on.

Thanks in advance.

[Pushit]

It looks as though my 3 1/2 year old daughter is epileptic, she hasn't been diagnosed yet (Scans have as yet revealed nothing), but it is looking almost certain that epilepsy is the problem.

Despite having seizures about once a week, it does not appear to be causing her any real harm but I was wondering if anybody on here has any experience with epilepsy in young children that they could pass on.

Thanks in advance.

Condolences, kids don't deserve somthing like this.

There is lots of info if you Google search "pediatric epilepsy"

Sorry couldn't be of more help.

[bina]

as u are probably aware, epilepsy is in itself not a disease but a symptom, although a symptom of what sometimes cant be figured out...

we have one girl on the kibbutz with epilepsy, now controlled. it means that due to her meds, certain activities are off limits, but for the most part, (she is still pre teen) she does everything. i'm not sure if she will take driving lessons, and oviously sports that involve getting bashed in the head are out of bounds. she goes to summer camp, hiking, etc, but there is always an adult supervising when the activity involves a possible danger (snappelling repelling cliffs, other extreme outdoor sports, swimming, ) also a good social worker/child psychologist to help deal with things; plans for teachers if your child has an attack in class, emergency protocol, and as your child gets older, how to help your child since epilepsy is so misunderstood and people still have primitive reactions to it.... get yourself a good neurologist, arm yourself with books and get on a forum...

epilepsy can be debilitating but can also be controlled for the most part; certain activities are restricted, certain forms affect people in not so good ways, and sometimes the meds are problematic... we had a friend whose three month old baby was epileptic but uncontrolled and with multiple other problems, some from the meds, some from the initial episodes that were almost non stop. sometimes the attacks space themselves out. sometimes they increase. sometimes there is a physical reason (head injury, tumor, surgery), sometimes cause unknown.

my experience personally is actually with dogs with epilepsy (there is such a thing); treatment is often similar, so are the reactions of the animals, and therefore, reaction of the public. triggers like fireworks, excitement, fear etc have to be taken in to consideration.

i had one employee with epilepsy (medicated and controlled more or less). the meds made him a bit sleepy/slow sometimes, but other then that, no probs., i'm glad he never lied about it (having an episode while catching a nasty horse could be a problem if unprepared) but many people had deep misgivings about it.

be prepared to spend lots of time explaining to an uneducated and often stupid public, including family members, who havent a clue, about what your daughter has, what that means, what to do in an emergency, blablabla....

hope this helps somewhat...

bina

israel

since i had two kids visiting a neurologist for their first 12 years, i saw many different brain function problems and met lots of doctors (my kids have cognitive things, but when u wait in the waiting room u tend to chitchat with other parents), and what is needed is a very good rapport with a very good doctor, and to keep up on the latest meds and testing...

edit: just came back from the issaan forum here on thai visa, there is a thread about black magic, it may annoy you, but it will give u an idea of how, at least up country, uneducated folks see epilepsy. there is also a guy there with a wife with epilepsy maybe u would want to contact him for some thai language info... etc....

Edited June 27, 2008 by bina

[Moonrakers]

Thanks for the replies.

Unfortunately we have already experienced some of the ignorance that has been mentioned, with somebody actually suggesting that we are bad parents for 'allowing' these attacks to occur. I guess that there is little or nothing that we can do about this stupidity although I'd prefer this sort of ignorance to be aimed at my wife and I, rather than it being directed towards our daughter.

We are somewhat fortunate that the school principal has an epileptic son, and so not only are they empathic but they also know what to do in the case of a seizure (Which has happened twice at the school now).

I have spent much time on google, and can take some comfort from knowing that when children this young have epilepsy then they are likely to grow out of it at a young age.

We had some interesting and good advice re: hospitals. We where being fustrated by the lack of progress from the private hospitals, who seemed not to find diagnosis a priority. Upon mentioning this we where recommended to go to the state run children's hospital, and despite having to join the queues ect. they have given us a pledge that they will get to the bottom of it which is very re-assuring.

I will also have a look on the Issaan forum as suggested.

Thanks again.

[spacekiss]

I remember seeing an interesting programme on a kid who was treated with large doses of vitamin b - as opposed to pharma drugs. Seems the parents had looked at the subject in depth but can't tell you any more than that......

[dingdongrb]

So sorry to hear about your daughter's epilepsy condition globalj. It is sad to hear this about anyone let alone a child at such a young age. I am sure you are at least probably relieved to know what has been bothering her rather than not having any idea. As it is mentioned epilepsy can be treated although many times the cause for it cannot be identified. Also as mentioned already different medications work for different cases as well as some medications having adverse affects even though it may deter or reduce the seizures.

I recently (past couple of years) became more aware of epilepsy because my sister who is now 53 was diagnosed with epilepsy only then, a few years ago. There have been many tests done on her and it has yet been determined what is causing this problem. One doctor seems to think that it's stress related. I can see this as my sister has had a stressful life. Most recently these past few years since our Mother passed away. She has been on many different kinds of medication and this most recent one appears to be working the best for her. Before she was having 3 to 5 seizures a week where some could last as long as 5 minutes. Now she can go weeks without a seizure and when they occur they are very short. Before when she was using a different med she had infrequent seizures but was always feeling drowsy and slept most of her day away.

Yes, I can agree that the seizure it's self may not be as damaging as the secondary affects. At least from what I have seen and heard in the case of my sister. The seizure seems to only create tight and sore muscles while with the secondary affects she has broken dishes and jabbed a knife in her thigh which all required stitches. She has also gashed her head open while falling against a counter top. Currently she is using only plastic (paper) dishes as well as utensils.

As far as the 'black magic' that was mentioned, my wife is from Issan and she claims that her grandfather, when he was alive, was able to make a tea from some plant (???) and if a person who had seizures would drink it they would not have seizures anymore. She claimed that this had healed a few folks in the past from the local village. Even though I had met her grandfather many times, who I dearly admired, he has since past away only about 6 months after my sister was first diagnosed. I don't believe in 'black magic' but my little bit of knowledge about Far East remedies tells me that there are some truth to these remedies that have been passed down over the generations. If he was alive today I definitely would pay to have my sister fly over here to try some of this 'special' tea. If nothing else I would be able to spend some quality time with her as well as allowing her to see a country I'm sure she'll never visit.

Bina has said that is it a good thing to have a good rapport with a very good doctor. I couldn't agree more. And I also have this thought in life about doctors, even though we think of them as highly educated and having special skills, remember that some are better than others. If one does not work well for your daughter I highly suggest changing and finding another, even if he is a nice guy (or gal). But I'm sure I do not need to be telling you this.

Good luck and my blessings to your little girl.

[FBN]

It is important to prevent these attackes from occurring so a proper diagnosis and then appropriate treatment is needed before this abnormal "electrical pathway" becomes established. Treatment then needs to be continued until the brain is "mature"; usually at about 17-18 yo.

Important, at this age, to treat any onset of fever very effectively as this may be the most common trigger..

[Moonrakers]

Thanks again for the replies folks.

The medication really seems to be doing the trick now (Touches wood). We are looking forward to be able to let our daughter play in the water when we go to the beach at Christmas (Very closely supervised of course).

The results of the MRI came through last week and it was all clear, which was a huge relief of course. The doctor did say that there was a tiny scar which is close to healing, this was possibly caused by an attack or a number of other possibilities.

Certainly much of learning to deal with it is learning to recognise the triggers and as FBN suggests above, the slightest sign of a fever is dealt with as soon as possible as it is by far the most common trigger in my daughters case.