I am new to epilepsy -- my small child has it

[aparentofasonwithepilepsy]

Hi everyone. I and my wife are going through a very difficult time. Our son, just turned three, has started to have seizures a number of times each day. He is in the process of having tests done to diagnose which type of epilepsy he has. So far the neurologist is confused by the type of seizures he gets and no diagnoses has been made. previous CT scans and EEGs came back as normal. How he is going for more detailed EEGs and a MRI. Meanwhile the doctor has put him on Keppra.

It is very difficult to see my child go through this and suffer from the side effects of the medicine and since he is so young he does not know what is going on. Thankfully the seizures he is getting are relatively mild and last for only 20-30 seconds maximum one minute. His face spasms and his right eye blinks he often will speak during the seizures and sometimes sing. Often his hands and legs also move around randomly while he has his episodes. Afterwords remembers nothing at all of what he said or sang and will want to lie down.

I am keeping a diary of this on a blog at mysonsepilepsy.blogspot.com if anyone has any recommendations or suggestions that would help us please let us know.

I am so glad to find this community and look forward to contributing.

 

[epileric]

Hi & Welcome

I was born with epilepsy & my symptoms were similar to your sons, except I would also stare into outer space. I'd sometimes even stop talking in mid-sentence for about 30 seconds then pick up where I left off when it was over.
You're smart to keep a diary of his seizures, do you also keep track of things like how much sleep he got, what (& when) he ate, stresses & basic bodily functions. I'm sure there are other things to record but hopefully if anything is triggering the seizures you can figure out what.

There are a lot of parents here who can speak from your point of view. Meanwhile look around & see what we've got. Check this out for starters http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

 

[alivenwell]

Welcome! It's great that you're an advocate for your son. I commend you for that.

Like Epileric, I would also pick up where things left off. And, I also was spacial. "Space, the final frontier. These are the voyages of... (you get the picture)". In my case, my speech would sound like gibberish immediately prior to and right after a seizure.

Special diets are successful for some people in here. Keppra isn't a medication I ever took, but for some people it works quite well.

Kids can be pretty resilient. It can be amazing how they see things from a different perspective than adults. The stigma, mockery and ignorance about epilepsy are his enemies. I am SO glad there are people who care about this condition, its victims and show compassion beyond expectations.

 

[RobinN]

There are a lot of evidence that food sensitivites can cause seizures. The top food causing allergens are wheat, dairy, soy and corn.
Also, can you connect them to his immunization record? Viral?

After 2.5 yrs we have now found that our daughters seizures are due to hypoglycemia.
Did I find this out from a conventional doctor? No. I had to request the testing.

 

[rackelsmom]

Hi Levi,

I'm so sorry you had to seek out this site, but glad you found it. There are so many on here who have been on this path for some time now and have good advice for you.

When my daughter was diagnosed in 2006 they started her on Keppra as well. She began with a 10 hour status that rendered her speechless for quite some time as well as leaving a spot in her Left Temporal lobe, damage.

Looking back on it I can see that she was having smaller sz's that I didn't recognize as sz's prior to the status episode. It's wonderful that you have recognized your son's so quickly. I'm a nurse and while I was trained to recognize tonic episodes, I had no experience in recognizing complex partial sz's which is what Rachel has.

Rachel didn't do well on Keppra, she actually didn't do well on any of the drugs they gave her.

I've been told by John's Hopkins that Rachel's story is quite unique, so please don't let this scare you. She's had one grid surgery and 2 resections. They helped but didn't stop the sz's.

Then after the 2nd resection we tried the Ketogenic Diet, a diet that dates back to Biblical times, that tricks the body into thinking it's in a perpetual state of fasting. It's high fat, moderate protien, low carbs. It is a medical diet that should only be implemented under the care of a physician and dietician.

They didn't encourage us and actually told us they really didn't think it would work, but that she needed to have time for her brain to heal before attempting a 3rd resection.

For the first 5 months Rachel only seized when sick and then after that the sz's stopped totally. We are currently weaning her off the last sz med. She was on five when we started the diet. She has gone over a year without a sz and we are huge proponents of Keto. It has saved our daughters life!

Always ask questions, if you haven't already, take him to a neurologist. Remember that not all doctors are equal, some will wait for your child to fail many drugs before sending you to a specialist. Ours didn't and we are thankful for that. So ask how long they expect it to take for the Keppra to work, then don't be afraid to ask the what if's. What if it doesn't, what next?
Does the doctor consider alternative treatments like diet? There are some really good ones out there. LGIT, MAD, and Keto are all very good and in many cases they can be used without AED's so none of those nasty side effects.

Also, did they give you emergency resue meds in case he has a tonic clonic sz? If not I would request a prescription for Diastat just in case. It's better to have it handy than to wait for an ambulance.

You and your family will be in my prayers.

Ann

 

[skillefer]

Hi parent! Welcome to CWE. You're doing the right thing by seeking out info. I started seizing when I was 3 also. My seizures were the grand mal (tonic clonic) kind. My suggestion would be to make sure that you don't think of the diagnosis as the end of the world. Your child can still have a fantastic future and pursue his dreams. Look into the diet issue like Robinn suggested. You'll find that alot of us have hypoglycemia...and if you can find a way to either complement or treat his seizures with diet, all the better. Whatever you do, don't wish less for your child. Many of us have advanced degrees, families, spouses, etc. so the dianosis isn't the end of the road. Check out the library here...there's some great info. And feel free to ask questions, chime in, or just vent when needed.

 

[Dutch mom]

Welcome dad,

Good you've found CWE.
I know how you feel. My eldest boy started seizing at age 1,5. At age 3 he was diagnosed with a serious epilepsy syndrome. He's allmost 10 now and we're so much futher in all this. But I'll never forget those first difficult years with all the uncertainty, loss, grief, anger and all those meds which didn't help at all. His diagnosis was not good but it helped us to acceptance and finaly made us trying an alternative treatment (ketogenic diet) instead of medicine which helpes to control most of his seizures.
In those first years I've found a lot of useful information and experiences here http://www.kidsepilepsy.com/

 

[aparentofasonwithepilepsy]

Could a lack or milk and an excess of eggs have impacted his seizures?

Thanks everyone so much for all of your support and advice. It is greatly appreciated. Your comments have had my wife and I thinking about diet a lot. These are my thoughts. We are Jewish and his seizures really began during Passover where his diet changed. He did not have any milk during Passover--he usually has a lot with his cereal each morning--and ate more eggs and matzah (large crackers made out of wheat). Does anyone think that a lack of milk and and excess of eggs can have an affect on seizures?

I have updated my blog mysonsepilepsy.blogspot.com.

 

[epileric]

One of the main things to be aware of is to have high protein & fat with low (or no) carbs so it sounded like a good diet for epilepsy. Also be aware that most anti-epileptic drugs react with alchohol to varying degrees depending on the dosage, the person and how accustomed the persons body is to the meds.

It is possible to that because we normally eat a lot of carbs your son was going through a type of sugar withdrawl that triggered the epilepsy. Check out Zoe's Corner which deals more with diet if you haven't already. http://www.coping-with-epilepsy.com/forums/f39/

 

[RobinN]

White flour a huge No No. He might be sensitive to eggs. Also he just might have reached the tipping point of seizure threshold. I learned that we all have a seizure threshold. Mine just happens to be higher than my daughters.

When I look back at my daughter's diet, she was eating a lot of bagels w/ cream cheese, pasta, juices with HFCS, cheese and crackers, fruit. Meats and veggies were in there too, but not on the up side of things. This nutritional issue does not hit all of a sudden unless there is a severe allergic reaction. For many it is over years of abuse of nutritional choices. I have removed many things from my daughters diet, in the attempt to see if there has been damage to her intestines over time, and also to see if there has been a reaction to certain foods she might be sensitive to.

Was he eating anything with lots of perservatives, or MSG or additives?
Much of the store bought Chicken broth has MSG and it was a huge trigger for my daughter. It is considered a neurotoxin. Grocery Store chickens also are soaked in MSG. Nice to know isn't it. Soda can lower the threshold too.

Lots of things to consider.

 

[katie's mom]

I think it is great that you have found this site and great that you have found others to share there experiences with you! Just keep a couple rules of thumb in mind: no 2 epilepsies are alike & knowledge is power.

For the first, most of us are only able to offer advice based on our personal experiences with epilepsy. Most epilepsies are easily controlled with AED medications. Those of us who spend a lot of time on these sites tend to be the exceptions. My 4yo daughter is a good example of this. After her first seizure, we were told not to worry it probably wouldn't happen again. Then after #2 & 3 we were told not to worry, the meds would do the trick. Now, 7 months into the process, we have found out that she has a rare, drug-resistant epilepsy (Doose Syndrome) that comprises 1% of all epilepsy cases. The Ketogenic Diet has been described as our only viable option. Again, she is obviously an exceptional case so I would not necessarily advise you to try the diet within the next week or anything.

For the second, knowledge on this site can be a profound way to explore new options for your kid and gain more insight into their disorder and coping with epilepsy in general. Keep your eyes and ears open at all times and you will find information that you need to help your son. I think it is good that you are asking questions and exploring the possibilities. The frustrating thing about epilepsy is that unless it is symptomatic no one usually knows what causes it besides genes, and so often the best we can hope for is to try to find out how to treat it!

Good luck and you are in my prayers!!

Kristi