My four Year old son Jayden was diagnosed today with Epilepsy.Help

[missydawn24]

After his second seizure episode in 2 months my 4 year old son Jayden was diagnosed with epilepsy today.They cannot find a reason for his seizures.They done a eeg, cat scan, and a MRI.The first seizure was on October the 3rd and required a one week stay in picu with four days of that being on a ventilator from the medication given to stop the seizure.This seizure was diagnosed as a complex febrile seizure by one neurologist and the intensivist at the hospital said it was do to a enterovirus.All his test came back normal so the neurologist said if he had another seizure within a years time he would be started on a medication.On November 30th he experienced another seizure while getting ready for school.His head was jerking and his eyes were rolled up to the left side.This seizure only lasted about 30 seconds.No fever.Just a cold sweat that was present with both.He also had just woke up right before each seizure.Upon readmission to the hospital they have started him on keppra 300 milligrams twice a day. Im scared to death.The neurologist at the hospital(not his neurologist told me it was actually a good thing they couldnt find a reason for the seizures,because ususally when they find a cause its pretty bad)What kind of answer is that?Is this medication safe?He is scheduled to see his neurologist on the 20th and I can call him anytime when needed but how am I supposed to return him to school or return to work myself?Is this a good medication to control the seizures?What side effects have any of you experienced?Please anyone with advice or similar situations please reply.

 

[epileric]

Welcome Missydawn

I was also born with seizures & for the longest time nobody knew what caused them. It wasn't until I was 39 that they discovered what was causing them.

Truth be known, what is causing the seizures really makes no difference in how they treat them. It won't make it any easier or harder to treat either. I think you'd be surprised at how many people actually have no idea what is causing their seizures & I can understand what the neuro told you, that if it is obvious what's causing the seizures then there is some obvious damage.

Personally I would suggest focusing on how your child is reacting the the medications he's on, if you see any side-effects like changes in personality, co-ordination etc. & if it's helping the seizures themselves. I can honestly say from experience that knowing the cause makes very little difference.

 

[KellyD]

Hey Missydawn24, I understand how you are feeling. My son was diagnosed at 8 months and they told me the same thing, that at a young age there is usually a reason and it's easy to find only like your son they never found a reason for Aiden's either. Aiden was started on Tegretol and then they added Lamictal and eventually Keppra. As his seizures became controlled we have taken him off the others so he is now only on the Keppra. From what we have observed there have been no side effects with the Keppra. The tegretol made him really sleepy after taking it but other than that he seems fine. The seizures and meds have not delayed his development in any way and the dr actually feels he is advanced for his age which is fantastic. Any behaviour I don't like from Aiden I have been assured is just his age (just turned 3!)
As for returning to work and school, I would just make sure everyone at school is educated and completely aware of your son's epilepsy and how to take care of him during and after a seizure. Put everything in writing (triggers if any, medication etc) and make sure all his teachers/caregivers have a copy. In Australia you can give your school an action plan so that they will do everything you would do for him, I'm sure that would be the same for you. Maybe the teachers could also educate the other kids so that if something happens at school they can alert a teacher.
Feel free to ask me any questions, it's such a scary time and I know how frightened and helpless you must feel. Aiden was having up to 3 seizures a day and it took us about 5 months to get them under control but in a couple of weeks time he will have been seizure free for 2 years. Because there is no cause for his seizures and he has responded to medication his dr is confident that once we pass that milestone we will be able to take him off meds altogether. Hopefully that will be the same for your son. This site was a saviour to me during the bad times so you are in the right place. Everyone here is very knowledgeable and friendly. Take care.

 

[mlbandura]

Hello Missydawn24,
I can relate to how you feel. My son was diagnosed earlier this year at the age of 4 with Epilepsy. He also has no know cause for his seizures. It is a very scary thing to see and to go through. I can honestly say you have found the right place to come to for comfort and answers. This website has been a god sent for me. My son Luke was just switched to Keppra a few weeks ago. He was on Trileptal at first but it was not fully controlling his seizures. We have not seen any serious side effects with the Keppra. We had an issue in the beginning but believe it was due to weening him off the Trileptal to quickly. Luke seemed to be sleepier than usual when we first started the Keppra and he did have some aggression but now its seems to all have gone away.
As KelllyD said, giving the teachers an education about his seizures is a wonderful thing. Not only for you and your son but for the teachers also. I went online and printed out what types of seizures he was having and what to do if he has one. Having a game plan is always a good thing. I also went to youtube and found some videos that showed similarities of how he acted when he had one and emailed them to his teacher. Also, another thing I did was printed out a seizure recorder for his teacher to fill out if he had one there and also for one at home. I would check out the epilepsyfoundation.org. They have great tools for working with the schools and teachers about your sons condition. I felt as though it was better to be over prepared then under. Good luck to you and your family. I will keep you guys in my prayers that you get some answers soon.

 

[Dutch mom]

Welcome Missydawn,

Your doctor is right about not finding a cause. Possible causes in childhood epilepsy often are bad news. Childhood seizures can be caused by braindamage, genetic disorders, mitochodrial disorders, tuberosis sclerosis etc. This is called 'symptomatic' epilepsy, which has a worse prognosis for seizure control and has a negartive influence on the development childeren. 'Ideopathic' epilepsy, with no known cause, has a far more better prognosis and often responds well to treatment.
On the other hand parents allways are searching for a cause for what's happening to their child, hoping the cause can be cured. Sometimes it can, f.i. by surgery, diet or medication.
It feels so double, I remember very well how we were searching for a cause when our son developed seizures at a very young age. They appeared to be a result of braindamage and his epilepsy developed into a bad epilepsy syndrome, resistant to meds.
I really do hope your son's seizures are ideopatic and Keppra will help to control them.

 

[Endless]

MissyDawn,

It is really scary to have a child with a diagnosis of epilepsy. My cousin's baby was born with seizures starting her first day of life. Fortunately a high dose of vitamin B, prescribed by her doctors, cured the seizures. Not all of them are that easy.

Keppra is a drug that works for lots of people. It can take time to find the right dose. Or, if the keppra doesn't work out it may take some time to find the right drug. With the Keppra, look for changes in his moods and his energy levels. If his temper increases or his moods change, ask your doctor for help in determining the right dose of vitamin B supplements. Those work pretty well in helping adults with the side effects of Keppra.

On going back to school...

Where are you located? In the U.S.? And is he in a private preschool? Or a public preschool or kindegarten? (It makes a difference in what his school is required to do to accomodate your son)

If a private preschool, do you think they will be open to working with you on this?

I found this resource interesting. Look on the right hand side for the link to download the school guide.
http://www.uscucedd.org/index.php?option=com_content&view=article&id=443&Itemid=420

 

[dragonlady1978]

Hi Missydawn, I am new to the site too but not new to having a child with epilepsy. My son is now 5, diagnosed right after he turned 1.

I agree with the other posters that the cause isn't really something that matters, as frankly they just don't know what causes epilepsy unless it originates from a physical abnormality in the brain, such as brain damage from injury or defect. If an MRI doesn't show an abnormality, there isn't a known cause. EEG's only tell the types of seizures and where in the brain they occur so that the proper type of treatment can be determined, and that is what is important.

No matter the cause, the treatment is what has to be determined. If your son does well with the first medication you try and has no seizures, that is huge progress and a wonderful thing!

My son's first 2 seizures were febrile and I was told they were totally unrelated to E and not to worry, a few weeks later he began having them regularly.

It is terrifying and exhausting, but it can be managed with medication and many children even outgrow their seizures. My stepdaughter is now 20 years old and hasn't had one since she was 11, with no medication-they just stopped.

We use Trileptal and Keppra together. Keppra has worked very well for seizure control but it has had some very significant emotional side effects for my son, but each person reacts and metabolizes anticonvulsants differently-Trileptal has negative effects on some kids but my son does just fine on it. It's a trial and error for everyone to see what will work without side effects.

You can feel free to message me also

 

[alivenwell]

It may be worth trying a low gluten diet for him. This is found in many different foods. Some people have had success with that ketogenic diet. That was unheard of when I was a kid. Personally, the biggest challenge is whether his teachers treat him differently or how his peers react to a seizure. I've run the gamut from favoritism, mockery, exclusion and ignorance as a kid. Hopefully the keppra will kick butt and he will outgrow the seizures. Have you had his sugar levels checked? Since they seem to be happening in the morning, I'm wondering if a low sugar level in the morning may be a factor. Stress, illness, various other stimuli (light, sound, etc.) can all be factors in triggering a seizure. Hopefully you'll get some straight answers.

On one hand, the stigma can be painful. On the other hand, he may pull a few tricks like I did...fake a seizure during a test so he can 'sleep it off'...the test, not a seizure!

 

[Fezzak]

Missy,

The biggest piece of advice I can offer is to carefully research every drug they offer. One that I would strongly encourage avoiding is phenobarbital. This is one of the hardest commonly used drugs to wean off of. It also is very damaging to development, and has many mild to severe side-effects.

To expand on the ketogenic diet, Wikipedia actually has a decent summary of its history, and there are numerous books out there. We were very fortunate to come upon a dietitian who specializes in the diet. It's something that takes a lot of work to stay on top of, and if you want more details I can definitely fill you in with what I know.

Regarding Keppra being safe -- it's definitely one of the safest (low side-effect, relatively easy to wean) epilepsy drugs out there. It's approved as an add-on treatment, but is often used as the first attempted drug for childhood epilepsy. The first (of many) drugs my son was prescribed was Keppra.

One thing that helped me to keep in mind was that you have to weigh the effects of the seizures on your child's life vs. the effects of the treatment. For my son, at his worst, he had 60 seizures a day, so we had no options. My recommendation would be to look into all of the available treatment options and consider the risk of those treatments vs. the risk of continued seizures. There's drugs, surgery (including VNS implants), dietary therapy (the ketogenic diet), acupuncture, and other alternative therapies.

I hope this helps! Please feel free to PM me if I can provide more first-hand information on the diet. My son is a huge success case for the diet, and has been seizure free (with the exception of weaning off of phenobarbital, which is causing him to have breakthrough seizures) for 8 months, with no other drugs on board and only 2.5mg of phenobarbital per day. This is primarily due to the way we are managing the diet, however, and I can provide more detail on that if you're interested.

 

[ColmanMac]

As neither of our kids has E I can only speak from my own experience - diagnosed unstable epileptic late 1970s followed by brain injury - but please ask if U think I can help re any answers
Col

 

[LyLMyssChaos]

I'm new here and I just wanted to offer my support as someone whom also has a 4 year old that is having seizures, so far with no cause other than "he's prone to them." I posted in the foyer if you are interested in my story at all. I know how scary it is to go through this.

One piece of advice that may bring you comfort is to have everyone whom may care for your child when you can't be there get trained in first aid for seizures.

I may not have information on seizures and their treatment as my son only started having seizures this week, however, I noticed someone mentioned going gluten free and I do have some experience with that. My oldest child is 7 1/2 and is gluten intolerant. If you'd like information on that, I'd be happy to help.

Just hang in there and remember that you know your child. You have to do what you feel is right for your child.