Hello Everyone ,
This is my first post here .
I have a five year old girl with epilepsy .J was diagnosed in October last year after having several absence seizures .
We were told at first J had petit mal ,until an EEG showed differently .
We haven't been given a diagnosis yet ,but are hoping to find out on Monday 9th Sept when she has an MRI ,we will also get results of another EEG done back in May .
J's medication isn't working and she's having some unpleasant side effects . J's on 10ml of Epilum and 5ml of Zarontin twice a day .
We have been told there is a chance of her having a tonic clonic seizure .
I am also hoping that we can find a medication that will control seizures ,without horrible side effects .
Other then that J is a happy little girl with a great sense of humour .
If anyone has had a similar experience and wants to talk or has any advice ,I would really appreciate hearing from you .
Thankyou , J's mum .
[This message has been edited by J'S MUM (edited 09-10-2002).]
I hope you get the corretc diagnosis and correct treatment plan for your daughter. If she had her EEG done in way back in May, why have they waited soooo very long to give you the results? The results of that EEG may change the present treatment plan which means that she would have been on meds that are not working for approximately 4 months longer than necessary. I do so hope you get the correct treatment for the correct diagnosis. That's way too long a wait for test results. Tattoo
Thanks for your reply,
It has been a long wait for results ,but only 2 days left.
I will be angry if the results meant she could have been on other meds ,that would have worked .
But that's typical of our hospital system out here , so I won't be surprised .
The EEG was done by a paediatric nuerologist at a childrens hospital , we were referred there after our GP did an EEG in Oct.
I contacted him to let him know what was happening and we decreased one med and increased another . No real change , if anything it's worse .
I didn't think to ask him about J's EEG results .
This is the problem when you don't know much you just do as they say and have to wait months between appointments.
I let you know what happens and what they do about meds .
J's mum .
I am quite sad ,we don't have a diagnosis for J .
And we were told that the results of EEG show that she is , A Typical of childhood epilepsy , and is showing some spikes from the right frontal lobe .
J didn't have an MRI done .
We have been told to keep her on Epilum and wean her off Zarontin . In the meantime she has started taking Clobozam until she is off Zarontin and on a full dose of Lamictal .Then we will wean her back off Clobozam .
I am very anxious about all these meds .
I am concerned about the rash side effect of Lamictal ,I was told it can be quite dangerous .
But I am hoping the Epilum and Lamictal will control her seizures .
I don't know what to tell the school . They want to Know her diagnosis before November .
I have a daughter, age 5 that has now grown out of (I hope) petit mal seizures. It has always been my take on things that my job is to do the best possible for my children's health. When my daughter had her first seizures, I diagnosed them. I sent my husband to the hospital with her (carrying his celphone) to get her care. Doctors do not listen to women/mothers. He got her competent care.
My job has been to keep the medical system moving at a respectable pace. I AM THE BAD COP. My husband is the reasonable one. I can get tests performed in days. Results back in a week. He and I alternate dealing with the proffessionals and it works well. I read medical texts on neurology. I go into office visits with lists of questions carefully thought out. They treat you much more seriously if they know you are better informed.
J'smum, I really wish you had Compehensive Epilepsy Centers there. Since they did see spikes and know where, since they have been given a description of her seizures from you I'm sure, it seems they could have come up with a diagnosis. They still needed the MRI to rule out any structural abnormality. I do not know whjy you would be told that what the EEG shows is Atypical. There are more than 20 tyoes of seizures so why whould they expect just one. That tells me their scope of knowledge may be very limited, because epilepsy can be as different as people are. This is not a cookie cutter illness by any stretch of the imagination, so I have a feeling that a very many cases that walk through their doors would be considered atypical. For them, yes, but probably not at a comprehensive Epilpesy Center. I'd be interested in knowing what they actually consider to be typical. Did you discuss with them what they meant by Atypical or ask the details? Like the poster above, someone in the household has to be the keeper of all info and very basically, your daughter's 'epilepsy encyclopedia'. You do need to know that many times an EEG does not detect the spikes, so that means that there may be others that were not detected. It depends on the location of the area that is producing the spikes, if that area is close enough to the surface for the EEG's scalp electrodes to detect them, and if the areas themselves even had epileptogenic activity at the time of the test. My first EEG and probably others as well were negative/normal, but I still have epilepsy. The EEG just didn't detect it. I was diagnosed baed on the description of my seizures. That first doc was correct. Please know that too much meds can cause seizures too. I have taken Lamictal and the equivalent of your Epilim. When they start the Lamictal, it is to be introduced veeeeeeeery slowly. Going so slow to start is done to hopefully prevent the development of the rash. What do your daugter's seizures look like? If you have a Video camera, it is good to have a tape of her seizures to show the docs. It is very good info to have. Like the poster above, the idea of a good cop/bad cop is a great way to look at it. You do have to ARMED! Do you ever visit other sites? There are others that have more visitors so you will get more responses, more ideas, more education, more ammuntion. There is a story going on now re a child, 5 yo as well, at braintalk.org. You do need to be very armed with ammo/information and as the above poster said, Blow them away with it. You know your child best and since epilepsy is so specific to the individual, you are the best one to help the docs fine tune her care based on what you yourself detect. Ask them why they are not ruling out a structural problem by doing an MRI. If there is anything structural, it may be able to be corrected. Arm yourself with knowledge. Tattoo
Thankyou everyone for your replies and information ,
myself and my husband have both been present at Jacinta's appointments .
I must admit I am quite and don't like to rock the boat .
After reading your post I will stand up and say more , we aren't getting anywhere at the moment .
I keep a dairy of J's meds and doses and anything significant that will help doctors .
I am also trying to learn as much as I can and will continue to follow up on a diagnosis for Jacinta .
Tattoo's reply was very helpful .
I have the feeling that they are only looking for petit mal , maybe because my discription of J's seizures are similar to Petit Mal seizures .
She has had a couple of seizures in front of the doctor ,and he has said they are like absence seizures .
My husband said that A typical means negative of what their looking for and typical would be positive .
So if this is the case he needs to do other tests.
There could be some structural damage ,that an MRI might show .My early pregnancy with J was very bad perhaps something could have gone wrong during her forming .
This has all been mentioned to the doctor .
The doctor seems to be very good ,I should be more foward though and ask more questions and demand other tests .
I will make some enquires and see what he can do .
We are starting Lamactil in about 2 weeks when she comes off Zarontin , it will be very slow , it will take about 3 months to get her onto 5ml twice daily .
Hopefully it will work .
I don't know if there is a Comprehensive Epilepsy Centre in Aust .I will have a look around .
At the moment I am a member of the Epilepsy Association ,they have a website and telephone service .
This is the first chat site I have found on epilepsy and you have all been very helpful , it will be great to chat to other mum's as well as people with great knowledge of epilepsy .
Thankyou for your prayers and God bless you all .
J'S mum .
[This message has been edited by J'S MUM (edited 09-25-2002).]
Atypical means Not typical or Not usual. In other words, Not what they would expect. Typical means just what the word means. Usual or what they would expect to find. Also, Absence Seizures, pronounced ab-Sants', is the new name for Petit Mal. Same seizure but different name. What was called Grand Mal is now called Tonic Clonic. Same seizures. Tattoo
Thanks again ,
I am still unsure of what the other spikes in EEG where.
Wether it is grande mal or not . We were told back in May , there is a chance of her having a grande mal seizure and were asked if we knew what to do.
I will ask them to be more specific about EEG .
J's mum .
[This message has been edited by J'S MUM (edited 09-12-2002).]