Help Me Im Worried

My daughter was two when she started to have seizures. When they had ordered the eeg she had been to the emergency room having seizure activity. The eeg, for lack of a better word, sucks. You will have to keep your daughter awake for a while. I had to get my daughter up at midnight before her appointment. Then we went to Children's Mercy where they used rubber glue to put little probes on her head. Then she was allowed to fall asleep, then we had to wake her up again all while they were getting a print out. After it was over we were pulling rubber cement glue out of her hair forever. But then her results came back that she did have seizure activity which lead to the credibility that she was having seizures. I went to Barns and Noble and bought myself a good book on seizures. I made a list of all of my questions and asked her neurologist. When they know that you have researched, doctors tend to treat you better. When you are more knowledgable they seem, in my experience, to believe you more, believe that you know what you are talking about. They also respect the effort of learning about your child condition because they see alot of parents that don't. And remember seizures are a physical sort of condition. Your daughter is still healthy, she isn't sick.

Hi H. - I spent several of my years having lots of tests as I have a seizure disorder. They have never found a reason why, other than stress and lack of sleep. I have had several eeg's done, and they are painless. Try to keep your little one awake for a while, they will connect wires to the little one's head and she just needs to lay there. It may take an hour give or take. They may want her awake and then asleep. It is no sweat. Good luck

Hi H., I'm sorry to hear about your child. I do have seizures so I can understand from the point of view of the person having them. They're not deadly, they're more of a neusence, but nothing dangerous. With an eeg all that they will do is hook some wires using some gooy jelly like stuff to your daughter, most likely they'll hook them to her head so they can get some readings that'll help them see if she is having seizures what type, so they can make sure that they get her on the correct kind of medicine to help ease the amount of seizures she has. I know it seems scary to you, it always seems to be more scary for outsiders than it is for the actual person who has them. I wish you and your daughter luck! I'll be praying for no seizure disorder, but if so let it be a less severe kind so maybe the medicine will do the trick and she'll never have them again! Also, if she does a lot of kids do tend to outgrow them by age 13, so she could end up outgrowing them by then.

hi H.,

First of all, I will keep you and your daughter in my prayers. 3 of my 4 have been diagnosed with asthma with the 4th showing early signs. Neb treatments and/or inhalers. Fairly easily managed. My oldest son had an eeg done when he was 2(He fortunately had only one seizure) and it wasn't bad. They will walk you through it before hand and tell you exactly what they are going to do.(If they don't, ask!!! It will make you feel better to know exactly what is going to happen.) Good Luck and hang in there!

L.

My youngest son is epileptic, and has had seizures since he was about 3 years old. It is VERY scary, but there is really nothing you can do to prevent them. There is medication, and it does help, but not stop the seizures. The EEG is a very simple procedure, non invasive, and pain free. They attach electrodes to the scalp, usually using a lotion to hold them in place, and then turn on the machine that follows the brain waves. We went to a children's hospital for the tests, so they were good with children. After my son learned that they were painless, he didn't mind. We had to have one done about every other month until he was about 12. The worst part of the procedure was washing the lotion out of his hair before we left the hospital. He HATED that!!! Many times if he didn't feel well, they would let him sit on my lap for the test. Then as he got older, they would just have him lay on a little bed and read a book. It's a little scary, but really is painless. Just reasure your child that it is safe, and you will be right there. They need to know Mommy is there with them. My son is now 36 years old, has a doctorate in computer science and is now the father of 2 healthy, happy children. He still takes medication for the epilepsy, but otherwise, it doesn't affect his life at all, and he has been seizure free for more than 10 years. Good luck.

They thought my son had asthma but will not diagnose him with it because being active duty military they said it will tarnish his medical records for later depending on what he wants to do when he gets older. So they have him marked as reactive airway disease which is basically asthma just worded different. They thought he was having seizures because he would "space out" so we drove to St. Louis for them to run a test on him that had to do with strobe lights and we had to keep him up because he had to sleep also while he was there, they came up with nothing which is good but it was still something we were concerned about. A friend of mine has every seizure that is known and it sounds bad but the easiest thing to do is to just make sure they aren't going to hurt themselves. It is very hard to watch, but there isn't anything you can do to make it stop. Another friend of mine her son is almost 3 and he started having seizures when he was 2, he was rushed to Columbia and he was given a prescription he had to take I believe every 3 or 4 hours I can't remember how often he had to take it but he had to take it at certain times exactly every day. If he was sleeping he had to be waken. The doctors believe it is something he will grow out of. Keep your chin up, I will keep you and your family in our thoughts and prayers.

My son is hydrocephalic, and has had a shunt placed in brain to drain fluid. He has had many EEG's no PAIN, just alot of little wires with a soft wax on ends of each, which are placed accordingly around the head. Now, there are probably 25 wires to hook up, so may want to make sure he has stimulation to keep his mind and hands off. It looks really Sci Fi, but not to worry. Remember, most of the time, these docs and the staff have so many tactics to make the test a success, alot pediatric neurologist are great at keeping things "happy" so to speak. You will be happy to see if and how many seizures he is having, that way you can intercede fast so he does not miss things, and continues to learn and develop. We have had 3 or 4, never been an over anxious situation, other than waiting on results.

good luck, K.

Hi H.,

My heart goes out to you. Just this January my 4 year old little girl had her first seizure. It was completely terrifying, and it wasn't much better two weeks later when I got the "abnormal" results from her EEG. The EEG itself wasn't anything traumatic, besides a mother seeing wires glued to her child's head. The EEG was to monitor the brain's electrical activity. My daughter did fine, and the sweet tech at Children's Hospital had a whole "noodle hat" story complete with "sauce" and "garlic butter" to explain the whole procedure to her. She had to go to sleep during the procedure, which we accomplished by keeping her awake until midnight and then waking her up at 5:00 a.m. They "glued" wires to her scalp, and she got to sit in my lap and snuggle the entire time, so it wasn't scary for her. When we got the results a day later (they came back abnormal--electrical "misfirings" during her sleep), it was completely devastating and I cried for two days. BUT, they give you lots of information, and you realize that you just have a different "normal" now. The great news is that it isn't stressful or painful for your child. They don't know what's going on, and they don't remember the seizure. So, you "suffer" more than they do (I think as mothers we all prefer it that way). They said that this doesn't guarantee epilepsy, and that if she doesn't have another one for a year it's a very good sign. A lot of kids outgrow seizures. We were given medicine to stop a seizure if it goes for 5 min--I now carry that everywhere. I have to give instructions to anyone who cares for her (preschool, babysitters, etc). We monitor her sleeping, and can't let her do things like climb very high or bathe by herself--in case she has a seizure while doing these things. But, life is relatively normal, and you find strength to deal with the unexpected (and unwelcome) changes. Every night I thank God for another day without a seizure, and pray for the best the next day. I will keep you in my prayers. You can do it!! Good luck with everything.

M.

The staff who will be working with you on the day of her EEG should speak to you first on what will happen and what the test's will show,i'm sure they will walk you through it if they don't then before your baby goes into their care stand your ground and tell them you want to know exactly what it is you want answered.

H.,
I am so sorry you and your little one are having to go through this. My daughter started displaying odd behaviors when she was about 8 months old. Behaviors that looked very much like a seizure. Her pediatrician referred us to Children's Hospital here in St. Louis and she had an EEG done. They asked us to not give her her morning nap so that she would be sleepy during the test. They wanted to see her brain activity both awake and asleeep. The worst part was just sitting there hooking her up. For a little one, she thought that all the wires were fun to yank on. It did not hurt of course. The just wiped her hair/scalp with a solution so that the electrodes would stick better. Then they the lady used a sharpie marker to draw on her head, so she would know where to place the electrodes. She put some sticky stuff on each electrode and placed them on my daughter's head. I bet there were at least 30 electrodes total. She then wrapped her head with a bandage, so that everything would stay put. We were able to sit in bed and watch tv. Of course, my daughter was scared to be out of her surroundings even though I brought her teddy and bedtime music. She still was unable to fall asleep. They said that it is ok if they cant fall asleep. Usually they have enough readings from the EEG test that it doesn't matter if they are awake the whole time. The test I believe took about an hour, and the set up probably took about the same. Good luck. I hope this helps to at least lessen your worries about the test. Soemtimes the fear of the unknown is the worst.

Dearest H.,
Three of our 6 children had seizures when they had a low-grade fever accompanied by an ear ache or sore throat. Low grade fevers come on without a moment's notice, so did the seizures.
An EEG is where they "glue" wires on the scalp (not painful, just smelly) and record the brains activity through contact of those electrodes (or whatever they call them. Really, it's no big deal. Since your baby is so young, they might put her "under" or give her something that will make her sleepy. They did that for our granddaughter, who has seizures.
After the age of about 5, my children grew out of having seizures, but then our baby, at 8-9 years, started having seizures that strated draining her memory. She was extra smart before the seizures began, but I don't know where it came from...at 2 she was bored so we started learning sign language, and she did very well. Anyway, we went through a lot with her, because where the seizures were starting in the brain caused her to be suicidal. DON'T let that scare you about your baby, because it happens RARELY. When she was 13, her neurologist mentioned something about a surgery, and my daughter said "lets do it."
You have to understand that at 13, she couldn't be alone for a minute, though she slept in her own room at night. Teens need their space, and she couldn't have hers. Anyway, she went through a lot of testing to find out if the seizures were coming from one spot, or many, it was the first, so they went in and took out the small piece of brain that was "shorting out."
She is 24 now, and works at the hospital as a nurse's aide, going to college for certification.
I homeschooled her for 11 years, and she got her GED with high scores. They didn't just fix her, they gave me back my daughter! But now my oldest granddaughter, who lives with us, has seizures, and we are coping. One neurologist told me if we didn't see any seizures, she wasn't having any, and took her off her medicine. Because of other problems, she went through a sleep study (her regular doctor sent her for this, not the neurologist). They hooked her up like for an EEG, and she slept through the night at the study place (we stayed with her). The results said there were some problems, though they coudln't tell me anything -- which was frustrating -- so I took her to another neurologist who did an EEG first thing and compared it to the sleep study, and said, she's still having seizures, when she is going to sleep and waking up. I can live with this problem, it doesn't scare me. What would scare me is if one of my children had asthma! My husband has it, but not bad, though he is on a CAP machine with oxygen now.
I pray things will be calm for you. You can stay with the baby while the test is going on. She will be fine, and so will you!
Sincerely, Jan in MO
If you would like to talk, feel free to email me: ____@____.com

Hello, H., I am a mom to a 6 yr old who has massassive, long siezures. At first they were scary, My sons where very bad and often requried a trip to the ER. BUT there are tons of meds out there and now his are fairly undercontrol. I have 3 other kids and when Kameryn has a siezure they tell me we do our siezure rotine and minutes later we are back to normal. Believe or not you will adjust and hopefully find a medicine to control them. As another member said they are more of a nussiance than anything. Kameryn does not seem effected to much by his but some times he needs to take a nap afterwards. If and when you do get to medicines just do your research. One of the meds my son takes is topamax which is also used as an appetiate surpessent but Kameryn eats fine but this medicine keeps him from sweating so I am unable to take him out in the heat or he has a seizure. Alot of children do out grow seizures.

Hi H.,

Don't worry, I went through this as a child too. With an EEG they will simply test her brain waves. She may be allowed to sleep during part of it and they may also require her to be awake. Either way it is painless and shouldn't harm your chid. If they see anything which may be a problem, there are many different medications to help you. The great thing is that she could grow out of it. I haven't had a seizure since age 5; I'm currently 37.

H. i have seizure's i got them from my mom they did not start until i was about 13 and i was scared to death but just so you know it is nothing painfull if they do a catscan then she will have an i.v. with dye in it so they know what side of the brain is affected by it i wish i knew if she was jerking or not i could tell you more but your biggest hope now if she does have epilepsy then you would rather have the petitmall is what they used to call them i dont think the name has changed if it's the grandma seizuer's those are the worst that's what my mom has as long as your daugther doesnt loos control over her body i am hoping you would be ok on that one but i still dont know how she act's. she will not like the eeg because she will be hooked up to a bunch of wire's if this does not run in your family then i cant imagaine what you are going through now but from experance everything will be new to all of you but it will be ok if you could wright more i could give you more answer's and advice.

An ElectroEncephaloGram is a test that shows brain activity. What they are looking for is seizure activity which will show up if she has been having seizures. While annoying to be still with electrodes on her head, it is rather painless. If she is having seizures there are many different medications on the market to help keep her from having seizures. My advice to you is don't be afraid to ask the doctor questions. There is absolutely no such thing as a dumb question especially where your child is concerned. Best of luck to you and I hope that your little one is ok.

H., I am an RN and I want to reassure you that an EEG is a noninvasive monitor of your daughter's brain activity during sleep. they put goo on her head in about 12 places for electrode placement, and then have her go to sleep. so you will probably have to keep her awake for quite some time prior to the exam, but as far as what the EEG shows, God doesn't give us a burden that we can't carry, He'll help you cope with ANY results.

I currently have seizures and have been through several eegs. They hook tiny electrodes to your head with some type of glue and one to the heart. These monitor the brain activity as several tests are performed. There is a portion when the patient is asked to sleep and then they actually flash different series of lights at you to see what types of things may throw you into a seizure. It is a simple test and it causes no pain. The only downfall to the test is when I am done it leaves the sticky stuff from the electrodes in my hair and I have to wash it a couple times to get it out. There are some wonderful medicines out there for seizures and with routine check-ups and take the medication faithfully, you can minimize the seizures. But rest assured, the EEG is no big deal. It takes 45 min. to an hour and you should get the results in about a day.

Seizures are very scary and though they cannot be cured, they can be effectively treated with medication. It really is not that uncommon nor is it something to be devistated about. Talk with your doctor about any concerns you have. Really, you shouldnt worry too much unless the doctor says you should. They are very treatable!!
--S.

I can send you information about these problems, i.e. printed materials and CD's. They can be helped without dangerous drugs--all natural supplements. H.