drop siezures

Sandy - posted on 01/29/2013

Troy and Jodie ... one thing about medicines can be that one counteracts the other. Phenobarb will make them very droopy and drowsy. Keppra can have temper and behavior issues. Never heard of Onfi as of yet. Depakene wasn't one of Joeys drugs either but he had been on Depakote which I believe is close if not the same. The VNS was a life saver for Joey. He was in Kindergarten when he would just drop. His head and a metal door frame was the one that got the VNS implanted sooner rather than later. Give the Lecithin a whirl too. You don't know what helps if you don't try it. Good luck.
Sandy Lora

Troy And Jodie - posted on 01/29/2013

Thank you for your post. I will check into the VNS. Jezzy is on Phenobarbital, Keppra, Onfi and depakene.

Sandy - posted on 01/28/2013

Troy and Jodie ... Please get a Neurologist/Neurosurgeon who knows about the VNS. Vagal Nerve Stimulation. It is a device that is implanted in the chest and a wire is run up to the neck and wraps around the vagal nerve. The device cycles. My sons is on 30 seconds and off 5 minutes, and has been working since Sept. 2004. It sends signals to the brain to interrupt the seizure activity. Joey stopped having drop seizures after the VNS was implanted. I highly recommend that you do this immediately!!! What seizure meds is she taking?? Trileptal has been my sons main drug for 13 years. We mixed in other drugs too. I think his top was 5 different seizure drugs at one time. When he was you, trileptal and keppra worked pretty good. Keppra can have side affects of bad behavior issues. You need to do trial and error to see what is the best mix for her. I would also give her Lecithin which is over the counter supplement. It's for brain and nerve function. Stopped my sons horrible seizures that had his arms, legs, body and eyes all moving completely after being on it for 3 weeks. He did start having seizures again when he hit puberty but they were not bad like the ones before the Lecithin. I give Joey 1 1200 mg. capsule daily. You could open the capsule and give her the fluid or see if they have another form of it. My son swallows the capsules thankfully. I swear by the info I have given you on both the VNS and Lecithin. I've been a 'Dr. Mom' since July 20, 1999 when he almost died from his first of thousands of seizures. Good luck. Please reply what meds shes on and maybe I can give you some insight from my experiences.
Sandy Lora

Troy And Jodie - posted on 01/28/2013

MY daughter is 18 months old and has Grand Mal seizures along with drop seizures. With medication we have the grand mal under control unless her fever raises dramatically. But now that she is on 4 different medications her drop seizures have increased. She is dropping like 30-40 times a day. We are new at this and are very frustrated and upset. We were told to get a helmet. We have a soft one. But they said that this new medicatioon would help the drop seizures. Well it hasn't. I was told that sometimes a combination of medications can cause more drop seizures. Just wondering if anybody else has had problems with multiple meds and drop seizures. I don't know if these will stop, or is Jezzy's health will continue to go downhill. I'm frustrated and can't stand seeing my baby falling all over. I just want her to have a normal life. If somebody with some expereince with these drop seizures could shed some light I would appreciate it. Thank You.

Sandy - posted on 03/29/2009

Have you heard about VNS (Vagus Nerve Stimulator)??? Joey has his implanted when he started having drop seizures which were an addition to his absence and petit mal seizures. The VNS has helped and even helps the other types of seizures. The device is implanted in their chest with a wire running up to the vagus nerve in the neck. Joey's device is set to cycle continuously at 5 minutes off, then 30 seconds on. He has a magnet that we/he swipes over the chest where the device is and it 'kicks' it on immediately and helps slow or stop the seizures. I believe with all my heart that this VNS has kept him in school and a bit more controlled, seizure wise.
Sandy

Mandy - posted on 03/29/2009

Quoting Rachael:

Hi Alexis my son has complex partial seizures, absence seizures, drop attacks and grand mal seizures. Like Carolyn's son, my son will give a warning most of the time he will say my brain is melting. He started to have upto 30 drop attacks a day so he does have a helmet nd it has saved loads of hospital trips. We put pictures of his favourite characters on it! xx

hello ladies,

My daughter mary-alice is 16 yrs old and has the same seizures as Alexis plus myoclonic jerks ,she has a washing machine tummy and a burning smell for grand mals,a fuzzy head for petite mals and complex partal seizures but no warnings for the drop attacks or myoclonia.

We've lived like this for 13 yrs since her 1st grand mal and 14 yrs since her myoclonia was diagnosed... it's hard watching my child deal with this on a daily basis ( she has up to 100 seizures a day of varying types and degrees ) and i feel helpless at times but I have had one to one training from my local neurology hospital here in the uk and cope better than i did when she was younger... experience does that to a person i suppose.

she has 2 helmets of different colours and we have decorated them with stickers of her choice to make her feel better about having to wear them.

Kellie - posted on 03/16/2009

Hi Alexis and Margaret. It pisses me off how dumb some Neurologists can be...it seems they have NO BRAINS!!! To tell your child they're clumsy??? My doctor told us our son was "lazy"...I've been to and from hell with the worst unreliable and unskilled Neurologists in the past, in fact I remember ONE who I will not name until this day because it's badluck. Don't be discouraged from clueless doctors who are too lazy to find the true source of the problem and where seizures are originating. My son is 14 years old and had half of his brain removed a year ago on 2/27 and it took us 12.5 years to get him seizure free. If it weren't for Cedars Sinai Medical Center and our Neurosurgeon, my son wouldn't be seizure free. Prior to the operation my sons life expectancy would not last to age 20, the drop seizures and it's intense frequency would have eventually kill him.

Alexis - posted on 03/15/2009

Hi Margret,

you must have been frustrated when the doctor kept telling you curtis was clumsy.... it is great that he has settled for you, i do find jacob a totally different child when he is on the correct doses of medication.... i also dread when medication levels have to change. jacob is growing all the time, im sure he is going through a growth spurt at the moment lol, anyway we all thackle that when the time comes....

Margret - posted on 03/14/2009

Hi, my name is Margret. My son Curtis was 3 yrs. old when he started having drop seizures. For the first 6 mos. the doctor pretty much told me that he was clumsy. He ran tests still but couldn't figure out the problem. Finally he sent us to the neurologist and he told me what was happening. It wasn't til the past year that he became drop seizure free. He is now 8. It is amazing that it can go from something to nothing with medication. He is growing so fast that everyday I dread that his medicine level may have to change and they will start again. Seizure free-he is a totally different child.

Rachael - posted on 03/11/2009

Hi Kellie

Alex is 7 and he has epilepsy, autism, adhd and SCB. He has been on lamotragine and has just been recently started on a combo of lamotragine and epilim. His dr said that if this didnt work then there were more to try. We had to be carefull what he was given cos he is also on methylphenidate, risperidone and diazepam for his anxiety and challenging behaviour. The seizures are startin to calm down a bit. He tends to have more when je is extremely stressed, especially if he has been restrained at school.



Rachael xx

Kellie - posted on 03/11/2009

Quoting Rachael:

Hi Alexis my son has complex partial seizures, absence seizures, drop attacks and grand mal seizures. Like Carolyn's son, my son will give a warning most of the time he will say my brain is melting. He started to have upto 30 drop attacks a day so he does have a helmet nd it has saved loads of hospital trips. We put pictures of his favourite characters on it! xx

Hi Rachael.

My name is Kellie. My 14 year old son Ali'i had left functional hemispherectomy (removal of 75%the left hemisphere of the brain and disconnected) one year ago on 2/27/08 due to intractable epilepsy. My son suffered many drop attacks daily that it significantly impacted his quality of life.  It is so frustrating for all of us to watch our kids suffer like this. Have the Doctors discussed a future treatment plan if medication fails. FYI- the doctors told us our son should've had the surgery by the time he was 8 years old because once a child exceeds more than 7-10 medications on the market in a series of cocktails, then it's time to move on to surgical interventions,at least that is what they told us. Our son had to wear his helmet fromt he time he got up until the time he went to bed.

What is your child's dx and what meds is he on?

I look forward to your reply.

Kellie

Rachael - posted on 03/11/2009

Hi Alexis my son has complex partial seizures, absence seizures, drop attacks and grand mal seizures. Like Carolyn's son, my son will give a warning most of the time he will say my brain is melting. He started to have upto 30 drop attacks a day so he does have a helmet nd it has saved loads of hospital trips. We put pictures of his favourite characters on it! xx

Kellie - posted on 03/09/2009

Hi Carolyn. What is your childs diagnosis? Do you have good doctors where you live? I live in Valencia,CA.



kells

Kellie - posted on 03/09/2009

Hi Alexis. I am new to this group, where do you live, city and state? I wish you lived closer to me, I have my own support group where I live, I get a bunch of Moms together and we meet for starbucks. What are you doing for yourself?



kells

Alexis - posted on 03/09/2009

jacob is still working out that his head feels funny, its hard to pick a word to describe to a 3yo what is normal and not...... since his first siezure i have refered to his head as being fuzzy, so this he can relate to but the funny feeling beforehand we havenet mastered yet....

i did get a call from the daycare centre telling me he was holding his head and saying his head felt light.... i went to him and after a lot of calls to and from the doctor and no siezures thankfully we put it down to either heat stroke or a headache..... as his dad took him to the beach the day before and let him get a bit burnt.....

i am working on it but its a hard one....

Carolyn - posted on 02/14/2009

Hi Alexis, My name is Carolyn and I also have a 3.5 yrs son who has had alot drop siezures whilst on meds. But when he is off them he has 5min plus grand mal siezures. So i dont know which is better to live with. It is scaring but i dont stop him doing anything and i try not to worry about it. I started saying to my son after he had a drop siezure, you had a dizzy head you will be alright. Now he comes up to me and tells me, mummy i have a dizzy head. This is great cause i keep a closer eye on him and 9 out of 10 times he will have a drop siezure shortly after he comes to tell me he has a dizzy head. Only from what i have been told by Adults who have siezure that they are aware one is about to happen. So its just trying to find away that they can pass this info on at such a young age. Background info my son started having siezures from 9 months, put on Eplim after his 1st birthday when he had a 7min grand mal siezure. Has been off meds for 1year now but was still having drop siezure every now and then. Had his first grand mal siezure about 4 weeks ago which was horriable i thought he had out grown them so just waiting to see if he is going to be put back on meds. And i know all about the ex as well i seperated 12months ago and i have two other little ones. I have now moved closer to my parents for support

Hope this info helps

Alexis - posted on 02/13/2009

hi Kellie,

wow thats great news for your son. it must also be a relief for yourself and your family...

i have so many people asking me if he will grow out of the condition and i tell them the same thing... who knows... it is still very active in his head... and even if he is siezure free for a period of time he may start having them again when he hits pubity....

i suppose my only concern is that he had the drop siezures.... it happened so fast and with no warning at all.... i dont want to wrap him in cotton wool but at the same token i know he is only 3 and i dont want him to hurt himself either.... the doctor mentioned head wear, to me that is extreme. he only had the 2 siezures, but then who is to say he wont have more.... you just dont know.... i dont want to make him feel different to other kids. i want him to play and do what 3 year olds do. but unfortunatly i am finding i am having to constantly watch him and keep him from activities that if he does have a siezure could be devisting....

how did you manage to let your son be a child.... do you stop them from doing certain things or just let them and watch them like a hawke.....

i find that a lot of people just dont understand what you go through when you have a child that has siezures... even my own mother dosnt really understand how it affects everything that i do or dont do.... i am living with it and i am trying to give my son a normal childhood. but i am worried that he may climb on something and have a siezure... the outcome of something like that happening is frightening to think off.... i try not to think about it but it is in my mind.. moreso now than in the past.....

Kellie - posted on 02/13/2009

Hi Alexis. My name is Kellie, my son Ali'i is 13 years old. He had hemispherectomy surgery almost one year ago on the 27th of this month. Ali'i suffered drop seizures for two horrifying years. Your son is very young and hopefully the Neurologist will try a cocktail of medication before suggesting the invasive. On March 12, 2009 Ali'i will celebrate his One year of SEIZURE FREEDOM...he's suffered with seizures for 13 years and it's time he lived on in an unrestricted environment. This whole Epilepsy and Seizure disorder is a horrifying yet phenomenol science that NO Doctor can explain or give certainty of one's future.



please fb me if you have any questions or concerns.



Kellie