my son who is nearly three had 2 febrile convulsions at 14 months old, we was then informed that it had turned into epilepsy at about 18 months old . Since then he has been having seizures every two weeks but in clusters,we had him refered to Great Ormond Street for diffcult to control seizures he is now on 200mg a day lamical, we do believe that this makes him very violent and agressive , he is still havein seizures on the dose of mdeication that he is on and had a 18 hoir eeg to which came back as clear. We still feel that we r so in th dark in the whole situation ! is it the medication that makes hinm violent and why is his hearing so senstivitive it s so heart breaking to see him ging through this every two weeks and now his development is delayed causing there to be language delays is so frustrating . My son also had adhd and we feel that this is getting worse please can someone help us with out questions !!!!!


very scared mum xx

Hi l understand how you feel lm demented at the moment my girl is going to start meds l dont know much but l think lm 'mourning' for my little girl lm scared what she might be changed into! I have to go to school soon to pick her up and if l dont burst out crying at the school gates it will be a miracle! Im so scared too l mean it aint a broken leg thats been treated its the brain thats been tampered with!!!! Ive had a panic attack today for the first time in years l feel so down and low lm terrified my heart goes out to you. Im sorry l cant help you in any other way as lm new to this l dont think i will ever be able to cope with this....... take care thinking of you x niecsey

Hello,

Our daughter, who is 17, is on Lamictal now for 2 years. She takes 400mg per day. We have not seen any violent type behavior. In fact, this med has had the least affect on her personality and other issues out of the 7 meds and combos she has been on over the last 16 1/2 years.

However, AEDs have a different affect on everyone. Katie has tolerated meds other people have had great difficulty with. The reason we had to switch or add was because they just weren't controlling her seizures. She has Complex Partial due to a febrile seizure at the age of 8 months that caused damage to the hippocampus and left temporal lobe. She had surgery in June 2004 after extensive testing and has been seizure free since. She will be on meds until June 2006, at which time we might try going off...we'll see.

As far as behavior is concerned, it can also be part of the seizures themselves. Depending on where they originate from and what parts of the brain get further engaged during a seizure. Have they done an EEG to see where the seizures may be coming from? Have they done an MRI? The seizures could possibly be affecting the right temporal lobe, which has to do with personality and behavior. I would suggest doing some research so you become familiar with where things are located in the brain. I'm not a doc or nurse, just a mom who has learned a lot over the years.

Keep a notebook on your son's behavior during a seizure. Believe it or not, even the way the eyes shift or one side of the body moving and not the other makes a difference. With Katie, her eyes always shifted to the right and her head turned to the right...that tipped the Epi to look closer at the left side of the brain. You never know what might be important some day. I would have never realized the journals I kept for over 15 years would prove to be SO helpful. They made copies of both journals that were used in her diagnosis, which was "Mesial Temporal Sclerosis".

You need to try to take things one day at a time...sure, it was difficult to deal with in the beginning. And I'm not saying it will be perfect every day. Dealing with school, friends, sleep overs, swimming, driving, employment, college, marriage...etc. We have been through it all...well, except for college (which we are preparing for right now) and marriage.

Keep it in today...hug him and love him and do the best you can as his parent...and remember one thing...

YOU ARE YOUR CHILD'S ADVOCATE!

The doctors work for you...if something doesn't seem right or sound right make your voice heard! No question is EVER too silly. I have challenged our docs over the years (fortunately we only had 3 neuro/Epi's over 16 years) and that IS MY JOB. I do it carefully and yes, I am wrong sometimes. But if you don't question, you can lose control of the situation and may have regrets over decisions.

All my best as you start on this journey...try to keep it in today...
Vicki

Hi, I reread your post and saw they did an 18 hour EEG. Maybe they need to do a longer one (5-7 days), or be put on stand by, so you can go in when he is clustering.

Many EEGs come out "clean". Katie had MANY EEGs over the years that didn't show activity, but that obviously wasn't the case. It just depends on if there is activity going on when that particular EEG is being done.

Katie did have sleep deprived EEGs that brought out more activity on the machine.

All my best,
Vicki

Hi my daughters were picked up on a sleep deprivation test not on any others tdkmom could you please tell me what the left temporal lobe is for? (l noticed you knew what the right one was for cheers

Hi,

Through Katie's testing we found that language comprehension, word recall and recognition, auditory and visual comprehension, and memory are on the left. There are other things on the right and left sides as well. Like smell, sight, fine & gross motorskills, balance, reasoning, analytical skills, etc.

Katie's pre-surgery tests were important because we found that because her seizures started at a young age, the brain "shifted" a couple of her functions over to the right side. Basically the right side compensated for the left side's damage.

She had bilateral memory and language skills. This allowed them to do surgery without causing any huge deficits. She does ocassionally have memory and comprehension issues, but those would have continued to deteriorate with continued seizuring as well. Without seizures, we can strengthen and reinforce these areas now.

There are people who have heightened sexual behavior because of their seizures. And those who make inappropriate/poor decisions (non-sexually).
It just depends on what part of the brain is affected. These are more indepth issues that I don't know a lot about.

The best I can offer is to document the seizures (what time, how long, what happened, any illness or anything going on at the time), behavior changes or anything you feel looks important. Keep up on meds, blood levels and doctor appointments. Quality of life is the most important thing to keep in mind. And try to provide a childhood that is as normal as possible. We never treated Katie any differently and didn't allow anyone else to either.

Take care,
Vicki

Thanks so much for ur very detailed report and very reassuring advice. its seems u r really know what u r talking about and maybe u should think of training as a doctor lol ...

It seems all so cloudy at the moment and things dont seem to get any easier my little boys behaviour only seems to be bad leading up to o cluster ( well most times) but now the behaviour seems to be learnt and not just fit behaviour . I am at my mums again today as i could not stand to be indoors with him behaving the way that he was. Bad behaviour was a tell tale sign but now he is completeley unprdeicatable i am quite young myself and think that thuis is why i find it hard to deal with.

On the med he is on now everytime thy increase it he seems to get more voilent and agressive



thank u will keep in contact

So glad to hear that i am not the only one going through this i feel like an alien has over taken my sons body like he is a different child... i am at my mums again as i find it hard to cope sometimes i love him so much and cant understand why things have to be this way.... keep strong and in touch let us know whats happeneing...


xxxxx

Hi has your little boy got autisum? Ive been talkign to alot of mothers with kids with epilepsy and lm surprised at the percentage who do!! My little girl has mood swings she seems to be fine for a few weeks then l will get weeks of torment (maybe its just the way she is ps. she dont take after mum for temper lol) Just a thught thinking of you x

They Are Saying That He Is Displaying Certain Charteristics That Could Relate To Autism, All Our Problems Started 7 Days After Brandon Had His Mmr Injection Which Was When He Had His First Febrile Convulsion, I Am Not Saying That The Mmr Was The Cause But It Has Been Linked Recently More Than Ever To Autism, Today He Had A Another Really Bad Fit Where He Was Fitting For At Least 3 Mins Seemed Like Forever Didnt Think He Was Going To Come Round From It, Have Been Trying To Get Through To The Doctors Again But Stil No Reply When Is This Ever Going To End .............

The Problem We Have With Brandon Is That He Is A Very Over Active Little Boy And Getting Him To Keep The Eeg On For 18 Hours Was Absolute Hell It Would Not Have Been On For That Long But He Slept For 12 Hours Of It.....

Have Spoken To A Few People And They R Informing Me That The Med He Is On Could Be Making His Adhd Worse But No One Will Take Any Responsbility For There Actions And Who Is Responsible For Changing His Med.......... Trying To Get Though To The Doctors Is Crazy And We Feel Lilke Sometimes They Think That We Make It Out To Be Worse Than It Actually Is ... I Wish I Was Just Want My Little Boy Back Not .................................

OMG poor you and your little one thinking back my daughter was the perfect baby slept all night immediately never cried etc etc then when she got past 2 it was a nightmare (not terrible 2;s either) this was horrendous at ages 3, 4 , 5 , 6 and had sort of stabilised as shes got older? she used to have me in a right mess and her dad it started off with a little red coat she wouldnt wear anythign but this red coat then it went on to l had to go back to where she was walking (steps on the path and walk where she wanted me too oh gawd l shudder when l think of it) maybe shes just naughty? oh l dont know......... makes you think thought the big change from been the perfect baby l never did look for help hope your feeling better today and your little one thinking of you xx

HAD SUCH A BAD DAY TODAY THE WAY HIS BEHAVIUOR HAS BEEN TODAY IT WOULD NOT SURPRISE ME IF HE IS GONNA FIT AGAIN WE HAVE HAD EVERY WEEK FOR THE LAST THREE WEEKS I CANT HANDLE IT .. XMAS LAST YEAR WE CAME HOME AS BRANDON WAS FITTING JUST REALLY HOPE ITS NOT THE SAME THIS YEAR I JUST WANT HIM TO ENJOY HIS LIFE NOT BE CRYING .. AND YOU KNOW THER THING THAT HURTS ME THE MOST IS THAT HE IS REALLY BEGINNING TO KNOW WHEN SOMETHING IS NOT RIGHT AND ITS JUST THE WAY HE LOOKS AT ME AS IF TO SAY " HELP" AND THERE IS NOTHING I CAN DO AND I FEEL LIKE A LET DOWN.. I SIT HERE THINKING THAT I SHOULD OF KEPT AN EYE ON HIM MORE WIS HIS TEMP AND THEN MAYBE IT WOULD NOT HAVE ALL STARTED( AS THIS BEGAN WITH A FEBIRLE CONVULSION)....... I HATE IT AND TIME IS PASSING AGAIN MORE AND MOREE AND WE ARE STILL NO FURTHER IT KILLS ME I WISH I COULD HAVE LOOKED INTO A CRYSTAL BALL AND SAW WHAT WAS GONNA HAPPEN AS I WOULD HAVE GOT HIM HEALTH INSURANCE FOR HIM FROM THE START AND THEN WE COULD OF GONE PRIVATE WITH IT .. INSTEAD OF WAITING NEARLY A YEAR AND HALF FOR AN APPOINTMENT ON THE UK NHS.... WELL HOPE U HAVE A GOOD XMAS TAKE CARE NIECSEY XXXXXXXXXX
:wave:

Hi hun xxx sorry l havnt been on lately my oldest was unwell had a little seizure due to a sky high temp! I couldnt believe it!!! shes fine now...... no damage. Hows things? you know we have to learn to deal with this best we can hun l'm still cut up inside and worry all the time all we can do is our best and demand the best possible medical attention! I undertsand your feeling of helplessness its horrible. Where are you? Someone will have to listen to you you need to be fit and mentally healthy to cope!!! Dont give in hang in there everyones here for you to vent etc sorry just a short one got company take care xx ps hope you had a lovely xmas too xx

[HELLO MATE NICE TO HEAR FROM U AGAIN HOPE U HAD A NICE XMAS ... BRANDON WAS FITTING ON XMAS DAY IT BROKE MY HEART YET AGAIN AND NOW THREE DAYS AFTER XMAS HE AHS BEGUN FITTING AGAIN NOT BIG JUST CLUSTER FITTING BT SOMETIME I THINK THAT THEY R THE WORSE ONES AS THEY LAST FOR LONGER.. I AM IN SOUTHEND IN ESSEX IN THE UK AND AM UNDER GOSH WITH HIM .. BUT WONT B SEEING THEM TIL NEXT MAY THE MED HAS BEEN AUTHORISED TO CNANGE BY GOSH SO I CANT UNDERSTAND WHY THE LOCAL HOPSITAL HAVE NOT PHONED ME YET... IT SO HORRIBLE I HAT MYSLEF FOR THIS

TAKE CARE HOPE THE LIL ONE IS OK

SHEL XX :bouncing:

Hi hun yea she seems to be doign great (fingers crossed) whats cluster seizures? Cant you ring gosh and get an earlier appointment? I really feel for you it is so hard and mentally exhausting and it is worse for us watching than the person actually going through it............. so thye say! By way lm up Newcastle way :) take care keep in touch x

HELLO CLUSTER SEIZURES ARE WHEE THEY CAN LAST FOR ANYTHING FROM 5 SECS TO A MIN THEY R ABSENT AND SOMETIMES U DONT EVEN REALISE THAT HE IS FITTING UNTIL HE HAS BEEN SICK EVERYWHERE BUT THEY LAST FOR 24 HOURS AND HE HAS A RECORD TOTAL OF 30 IN 24 HOURS.

WHEN HE HAS AGRAND MAL SEIZURE HE ONLY NORMALL;LY HAS THR ONE AND THEN THAT WILL BE IT FOR HIS PATTERN OF FITTING BUT MORE SO RECENTLY WHEN HE HAS HAD A GRAND MAL IT HAS TRIGGERED THE CLUSTERES OFF... GOSH WONT DO NTYING THEY SAY THAT I HAVE TO WAIT SO I AM AT A DEAD END ITS KILLING ME AND I AM FINDING IT SO HARD TO DEAL WITH HIS BEHAVIOUR AFTER AND BEFORE IT USE TO GET BETTER AFTER FITING BUT NOW IT GETS WORSE.... THE LOCAL HOSPITAL HAVE BEEN INFORMED THAT THEY WR TO CHNAGE HIS MED WELL THAT WHAT GOSH TOLD ME BUT I CANT HELP GETING REALLY IRRIATE WITH THIS ONE DOCTOR AT THE LOCAL HOSPITAL AND SHES HES THE ONE THAT I HAVE TO DEAL WITH ............................... :jester:

why not ry your gp? hes the one who can ask for things to be done and earlier!!! Tell him how low you feel after all you need to be healthy to cope!!!! Good luck sorry its short havnt much pc time this morning take care xx

my gp basically told me that if i could not handle what was going on then phone social services and get them to deal with him which was really encourageing they never seem to do anything... cant wait for the new year gonna really let off at the doctors they aint gonna know whats hit them ... :jester:

Not much support there then!!! Is there another doc in the practise you can speak too? Thats sad when your doc saying that to you do they not realise the caregiver needs to be tiptop to cope?? Thinking of you you let rip in my opinion sometimes that is when they WILL listen shy kids get nowt so they say!! Good luck sorry havnt been on earlier lm loaded with flu this is my 2nd time in 3 weeks it went and now its back think ive recaught it off my young un!! Good luck and keep posting x

hello babe hope u and ur clan are ok , brandon has been fitting again 2day ony hd four which was gd , we r suppised to take him to the hospital but whats th point it was sunday and they would not have done the eeg till monday and they would not have given him any ned change as the doctor wouldnt of been available ... i am gonns sart kicking of big style they aint gonna know whats hit them.. hope ur little one is getting better REMOVED

take care mate bye
xx



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