I'm new to the seizure could use advise/word of wisdom

Renee - posted on 09/18/2009

My youngest Mya has had 2 Febrile seizures.I have surgery Controlled Epilepsy,no seizures in 22 yrs.When Mya had hers I talked her through both of them.The first was Grand mal the second complex partial.You can hear you can't answer and it's foggy.All my eeg's were normal.My seizure focus they removed was the size of a grown man's thumb and looked normal(which explains normal CT/MRI's).I'm not concerned about Mya until she has one without fever.I watch her closely when She has a fever.She spikes everytime she cuts a tooth.102 seems to be her trigger temp.
I don't remember not having them since my first was at 8 months.Learn everything you can about Epilepsy.I roller skated ,rode a bike and had a normal childhood until they became intractable and I had to have my brain surgery.I had an aura before my seizures we called them Temporal lobe then.Defintely get to a neurolgist and get one of the meds to help prevent them.

Belinda - posted on 09/17/2009

Its very scary when your child has a seizure, especially when they tell you they do'nt know why. Keep pushing the doctors and ask for a referal to a specialist neurologist. My heart is with you, my daughter suffered epilepsy and seizure disorder up into her teens and it is a very stressful thing to deal with (I have the grey hairs to prove it lol) but I can tell you she is now 20 and thankfully has not had a seizure in three years so keep your hopes up and whenever it gets too much have a good cry your entitled and it does make you feel better to get things out.

Julie - posted on 09/17/2009

My heart goes out to you. I'm the one who has epilepsy in my family. There haven't been that I 'passed' it on to my 2 children. I know how scary it is & how helpless you feel. From the description of your son's seizures, it sounds like a grand mal or tonic/clonic. The best thing you can do while he's seizing is to keep him safe from hurting himself. Put a towel under his head and turn his head to one side. Stroke his arms, legs or head and let him know that this will pass and that you're there. This will also keep you calm. Hypoglycemia and epilepsy go hand in hand. So you might want to keep a log of what he eats, drinks & at what times. Also write down his temperature, what he was doing & his surroundings (flashing lights, loud noises) at the time he seizes. You might start to see a pattern. Find a good neurologist. The doctor's will ask all sorts of questions from your pregnancy to 'Have you ever dropped in on his head?'. Many times doctor's don't know why a person has seizures, BUT they can help you find the best medication for your child. You may also want to contact the National Epilepsy Foundation or join another online chat group. Research the meds & the side effects they have on infants before you go in for a doctor's visit. Be sure to ask your neurologist about the compounds that the drugs bind to. For instance, I was (& still am) on Dilantin during my pregnancies. Well, Dilantin binds with calcium not letting it break down properly so your body can absorb it. So, I had to take extra folic acid (to prevent spina bifida) & calcium supplements. I was also told that excessive citric juices/foods (orange, pineapple, grapefruit...) do not 'mix well' with anti-seizure meds. [FYI to the parents whose daughters are epileptic: birth control pills may cause weird side effects. And depending on the med, reproductive organs may be damaged in the long term.] I apologize for rambling but if you don't ask the right questions, you may not get the whole picture. I pray that you have access to the tools you need to help your son and bring you comfort.

Mandy - posted on 09/13/2009

My daughter, now almost 2, had her first seizure when she was 7 months. The problem is that when they diagnose someone with epilepsy, it's because there is no known cause for the seizures. A lot of people are diagnosed with certain types of seizure disorders which is when they actually find a cause for them be it some type of brain abnormality found on an MRI usually. All of her MRI's and EEG's always come back normal which is very common with epilepsy. My mom has had them since she was a child (grand mal) and they still don't know why. She's 47 now. So if your little one goes in for testing and they find something it's almost a good thing because then you're not left wondering why he's having them. They can put him on the proper meds to control them. Anyone whose been diagnosed with just epilepsy usually has to switch meds frequently until they find one that works better than the last. I don't know it's very frustrating and scary. Just make sure you're asking lots of questions even if they seem silly so you can fully understand whats going on with him and treat him accordingly. (sorry for the long story) :)

Denise - posted on 09/10/2009

It's very hard and emotional watching your child suffer a seizure.

My son was diagnosed with juvenile epilepsy a few years back and has been on seizure med ever since. (Depakote ER)

You will never get used to seeing it happen...but you will get more comfortable in your ability to handle them. Please get your child to a Neurologist asap.

There are many different types of seizures and some you may not even know are happening - such as absense seizures. (staring)

My child started with the absense seizures and thankfully with the help of informed teachers and myself..we were able to get a proper diagnosis.



As a mother it will always be very heavy on your heart when you see your child having a seizure..but with knowledge comes power and the ability to know your can handle it!



hang in there!

Dina - posted on 09/09/2009

My daughter has had unexplained seizures since she was a year old. They just started one evening and we couldn't figure out what was going on. After multiple MRI's and EEG's we found that neither were helpful to us. It wasn't until this past January (of '09) that we went to the pediatricians and she just happened to take random routine blood work while my daughter was eating (she is tube fed through a G-Tube) and her sugar levels came back at 29. That is coma level for any normal person. It took until that day for the Neurologist and the Pediatrician (both of whom had followed her since birth) to realize that my daughter had Hypoglycemia. She would only seize when her sugar would drop lower than 40 (which is still extremely low).

The only thing we have ever found to work with her while she is seizing is to put her on the floor (I stay at home with her so it is generally carpet that she goes down on) and we give her a little space to "flail". I talk to her the entire time she is actively seizing and generally call the Neurologist so that they can document the seizure in her file. I have a notebook that I keep in her room to record the date/time/length of seizure/description of seizure activity/and what she was doing before the seizure and her activity level afterwards. I have found the notebook to be extremely helpful when going to the appointments so that they can see the pattern of the seizures and the frequency with dates.

I hope all is well with your little boy. Please remember that the testing can come back as "normal" because the MRI will only pick up brain pathing defects and the EEG will only report activity if he is actively pre seizing or seizing during the test. It may not be a bad idea to have someone video record an active seizure just so the doctor can see it.

Brittany - posted on 09/08/2009

My son had (has) febrile seizures (seizures caused by fever). There really are no magic words that are going to make it any easier to go through. I was told by several people that there was a good chance he could hear while seizing, so I recommend that just in case, you try your best to remain as calm as possible and reassure him that you're there.



I wish there was something that could be said to make them easier, but there just is nothing that makes seeing your child going through that not absolute torture.



My son had 2 ct scans, an MRI, and an EEG...all coming out "normal." There is no reason for his seizures, and we are not given medication, as they say febrile seizures are not harmful. However, all seizures are different...I highly recommend that if you disagree with what a doctor says, you get another opinion...you, as his mother, KNOW your child, far more than any doctor will by looking at the results of any test.



Sorry I can't help.

Hannah - posted on 09/08/2009

Hello...I am no expert on other people having seizures but I myself have the disorder. I see a neurologist regularly and am on medications that I will take the rest of my life. There are a lot of things that can trigger them.Being a baby he seems to young for the stress thing. But if I don't eat enough in the day or have low blood sugar it can trigger it and flashing lights, such as on tv or a toy that can trigger it. Also extremely loud noise used to trigger mine. Whenever I wold have one the first thing my parents did was try to get me to talk. Wasn't easy but gets your mind working and trying to focus on something. Its very important to have something to focus on when they occur. It eases the brain from stressing and can bring you out of it sooner. My best suggestion is have a neurologist look at him and put him on meds. They have chewable kinds and liquid so I would try that

Sara - posted on 09/07/2009

i have seizures myself and my son has them as well. my son matt started around a month old too he is 14 now. i agree that seizures are scary from the parent's point of view butsince i started having seizures in nov 2007 i found that both sides of it is scary. as for advice for what you can do is remain calm as possible , softly talk to him and let him know that you are there. then when he comes out of it try to remember how scared you were during his seizure cause he is that scared at that point as well as during. seizures confuse the person having them and the people watching them. if you ever just want to talk you can email me at sarapicken@yahoo.com

good luck to you and your son.

Skittles - posted on 09/07/2009

Quoting Maureen:

You said he was playing when he had his seizures. Was he playing with toys with lights? Sometimes seizures can be caused by watching flashing lights. It is well documented that strobe lights do this, but sequential lights (like the christmas lights that "run" around the house or lights that flash with certain patterns can cause seizure activity. There are so many reasons for seizures, it can be difficult to know all of the triggers. My youngest son has had seizures from about 9 months. He has CP and lots of CP kids have seizures. We are not sure what all of his triggers are. He has several different types of seizures -- grand mal, tonic/clonic, startle and absence seizures and possibly others. The grand mal and tonic/clonic are well controlled. He had a grand mal in February, but had been free of this type seizure for about 5 years. He use to have them a lot more. The startle/absence seizures are less scary, but more active. We are slowly getting them more under control.

I would urge you to see a neurologist ASAP. ER docs are not going to prescribe anything for his seizures. Pediatricians usually don't prescribe them unless they have spoken with a neurologist. Until your insurance comes through you will be walking a tightrope. If he has another seizure before your insurance comes through, I would ask the ER docs to do a CT or MRI to rule out any physical cause for the seizures. You might be able to convince them to do an EEG (less expensive), but it may not tell them as much as the neurologist looking at it. ER docs might just tell you that it is abnormal and that would be due to the seizure activity. Hope this helps information wise. Good luck!

All he was playin with at that time was the doors in the kitchen and the other time it was a bowl and wooden spoon.(he likes to pretend hes cooking like mommy)So far they have done a ct and is it an EEG when they put wires on his head and read the brain wave. Both tests they didn't see anything or thats what they tell me but I know that that one that was with the wires they only did for less then 30 mins and everyone thats done that test said they have to do it longer then that to get a good reading especially with an infant. 

Maureen - posted on 09/07/2009

You said he was playing when he had his seizures. Was he playing with toys with lights? Sometimes seizures can be caused by watching flashing lights. It is well documented that strobe lights do this, but sequential lights (like the christmas lights that "run" around the house or lights that flash with certain patterns can cause seizure activity. There are so many reasons for seizures, it can be difficult to know all of the triggers. My youngest son has had seizures from about 9 months. He has CP and lots of CP kids have seizures. We are not sure what all of his triggers are. He has several different types of seizures -- grand mal, tonic/clonic, startle and absence seizures and possibly others. The grand mal and tonic/clonic are well controlled. He had a grand mal in February, but had been free of this type seizure for about 5 years. He use to have them a lot more. The startle/absence seizures are less scary, but more active. We are slowly getting them more under control.



I would urge you to see a neurologist ASAP. ER docs are not going to prescribe anything for his seizures. Pediatricians usually don't prescribe them unless they have spoken with a neurologist. Until your insurance comes through you will be walking a tightrope. If he has another seizure before your insurance comes through, I would ask the ER docs to do a CT or MRI to rule out any physical cause for the seizures. You might be able to convince them to do an EEG (less expensive), but it may not tell them as much as the neurologist looking at it. ER docs might just tell you that it is abnormal and that would be due to the seizure activity. Hope this helps information wise. Good luck!

Donna - posted on 09/07/2009

Please see a neurologist...even if you have to pay out of pocket. If he is having that many seizures he should have an MRI, EEG and probably meds to control seizures. You only see some of his seizures, what if he is having them when he is asleep. Good luck!

Skittles - posted on 09/06/2009

I just moved to a new state so i am waiting on the ins but that is the next step.The drs didn't put him on anything and said not to worry about it. I'm sorry I'm going to worry about it thats my job as a mom. I'm hoping the ins should be up soon and then Ican get him in

Melanie - posted on 09/06/2009

Did they put him on anything? Have you seen a neurologist yet?

Skittles - posted on 09/06/2009

well of all the times these have happens he never had a fever and he was just playing next thing we know hes seizing. I am just hoping that they don't start getting closer together and I hope that we can figure it out soon

Melanie - posted on 09/06/2009

Skittles, My son Shawn has a known disorder that causes seizures, but I have one peice of advice on tests. When I go back through his records, I can see that in the ER he was running a low grade fever when they started. We were told about this because it wasn't considered high enough to be significant. Low grade fever alomost always triggers seizures for us. Shawn's seizures are different than your son's; ours are partial complex. Shawn can still hear and see at least to some extent during his seizures. We have found that letting him know we are here, talking to him softly, and stroking his face help him come out of the seizure faster. Hope this helps! Melanie