Eldest DD had a seizure yesterday...help

[taeja71]

Any there any DIS nurses or other DIS parents who have experienced the same or similar thing. Why would my DD's body just break in to a seizure all of a sudden?

My DH and I were watching t.v. and talking while our oldest DD slept in between us after being scared of a dream (night terrors). Well, at about 5:am she just started shaking. I thought it was from another night terror and her right side of her body continued to shake. I quickly turned on the lights and saw that her eyes were open. She was breathing through the seizure thank God! She was non responsive so I just dialed 911, b/c I couldn't think of our pediatricians #. Well, we got some one to watch our other kids and DH rode w/ Robyn to the hosp. ER while I drove ahead of the ambulance to the hosp.. The seizure just happened w/ no warning signs. No fever, sickness before bed, no allergic reations to anything, etc. The ER staff did a cat scan on her and it appeared there was nothing noticeable. We'll find out the cat scan results tomorrow.

This question was posted on the Community board and one of the responses thought it might be good that I shoot the question over to this thread. Thanks all!

 

[roseprincess]

I'm sure that had to be scary to see her seize like that.
Unfortunately, I don't have any answers for why your dd had a seizure. Let us know when you get the CAT scan results, I'm interested to know, also.
I do hope she doesn't have anymore seizures.


Rosemarie

 

[DJBounce]

Seizures are scary, no doubt about that. I've been around seizures all my life. My mom has had a couple in her lifetime with no cause found. My sister is Epileptic. She seizes daily. And my daughter has a seizure disorder. She seizes about every 6 months or so. I am a RN, so is my husband. Hopefully the CT scan is normal. I would assume the next step would be to have an EEG. This is a type of test where electrodes will be placed on your DD's head (pretty painless) and she would just rest. During that time, the EEG will look at her brain waves to see if she has seizure tendencies. If she does, she will probably be placed on medication to help prevent future seizures. If not, it could be just one of those things. Many times, causes are not found. This could be the only time she seizes in her life. Make sure she is followed by a neurologist. My prayers are with you and your daughter right now through this scary time. If you have any questions, please feel free to PM me.

 

[eternaldisneyfan]

Seizures are scary and sometimes hard to diagnose. They are quite common in diseases like Cerebral palsy, Muscular Dystrophy, and other neurological disorders. Other times they are caused by a fever. Sometimes they are caused by a lack of oxygen. There is a sleep disorder-sleep apnea-that causes you to stop breathing when you sleep (I have it) I have Spinal seizures (Myoclonic). When I seize I am completely alert and aware and still control my bladder. But I stutter when I talk. My seizures (according to my neurologist) are caused by nerve stretching damage in my back. My legs are most involved and twitch and jerk uncontrollably-quite exhausting and painful especially since my Muscular Dystrophy makes my muscles fatigue easily. Other times my muscle will just jerk wildly. When its really bad my back will arch and my arms will join in.

Definately see a neurologist. The top children's hospital there is Riley Children's Hospital. I am really glad your daughter is okay. I hope it never happens again. But if it does-The good news is that the tests-like EEG, I've had several-are pretty painless and there are many medicines that work well to stop seizures. Other options like the Vagal Nerve Stimulator are also available. I hope you get some answers.

Here's what discovery health said about different types of seizures:

Absence seizures used to be called petit mal seizures. They have the following characteristics: · include small movements of the face or eyes · involve staring into space · last from a few seconds to a minute · may include dulling of consciousness · most commonly appear in children

Tonic-clonic seizures were formerly called grand mal seizures. These seizures have the following characteristics: · begin suddenly without warning · cause confusion or fatigue afterward · include jerking of the arms and legs · include loss of bladder control · involve stiffening of the body · last 1 to 2 minutes, with consciousness returning up to 15 minutes later

Following are some of the characteristics of atonic seizures: · consciousness may or may not be lost · involve a loss of muscle tone · last a few seconds · the person may drop to the ground without warning

Myoclonic seizures generally are characterized by the following: · involve quick muscle jerking · may be triggered by too much alcohol · may be triggered by lack of sleep · usually don't cause loss of consciousness · usually happen in the early morning

Clonic seizures may have the following characteristics: · cause loss of consciousness · involve muscle jerking · most common in childhood

Simple partial seizures usually can be identified by the following: · consciousness is not changed · last a few seconds · may involve body movements · may lead to a generalized tonic-clonic seizure · may result in a complex partial seizure · things may look, sound, feel, or taste differently

Complex partial seizures may include the following characteristics: · automatic behaviors, such as lip smacking · confusion after the seizure is over · loss of contact with the environment, even though the person is conscious · loss of memory for events that occur during the seizure · may go on to a generalized tonic-clonic seizure ...


Good luck!

Hugs and Pixie dust,
Christamae

 

[loadsapixiedust]

My thoughts are with you at this frightening time. My DS has had seizures since he was born and every one is scary, but I still remember the first one, it was so much scarier than the rest. I hope your DD is fine now and may never have another, but I know the thought of it never really leaves you. Hopefully the tests she has will reassure you that nothing is wrong and it is unlikely to happen again.
A single unexplained seizure is not that uncommon. You don't say her age, but puberty could be a factor.
Just wanted you to know I am thinking of you, let us know how things go.

 

[Nik's Mom]

Sending hugs and prayers your way. A classmate of my Ds's has seizures. I can imagine how frightening it must be. Your family is in my prayers! Please keep us all posted.

 

[leise]

I don't know that much about seizures, but it sounds so frightening for you.. It looks like there's some good advice here.

I just wanted to say that my SIL had a sudden bout of seizures as a child, and was diagnosed as epileptic. The first one happened (so I understand) in circumstances very similar to your DD's. She was between her parents in bed, having had a nightmare, and suddenly had a fit. She then had a few more over a period of a couple of years, all apparently harmless. Then they stopped as she reached puberty, and she's been fine since.

Hope your DD is fine,
Take care
Leise

 

[taeja71]

DD is five. We went to her ped. dr. today and scheduled to have an EEG done next Thursday. DD passed all of the ped. dr's requestes as far as movements. DD had a great time jumping up and down, sticking out her tongue, etc. DISers, I'll keep you all updated as info comes in.


I can't thank you all again for your info. O.k., I will, THANKS AGAIN ALL!

 

[Michigan]

When my oldest DD was 5 she started having petit mal seizures.

At 7 she started having complex partial seizures where she would suck and shake her head back and forth but she was totally aware that something was happening because she could squeeze my hand once for yes and twice for no when I would ask her questions during them. After they were over she would sleep for 6 hours and never remember what happened when she woke up.

Then when she was 11 she had a tonic-clonic seizure while we were at a hotel. She was in the bed with me and all of a sudden the bed started to shake her eyes rolled back in her head and she went limp when it was over I just kept slapping her face and shaking her until her eyes rolled back. After that seizure she not only didn't remember anything about it but was not one bit tired. That also was the last seizure she ever had. She is now 15 and has been off all seizure meds for 2 years.

 

[MiaSRN62]

Taeja71~
I'm a nurse, but my specialty is OB, so I can't talk about the specifics of seizures, though things mentioned here are correct.
My dd (now 14) began having seizures when she was 3. Her first one was a grand mal and I had to give her CPR. The docs ruled out febrile seizure and she spent the next 9 years having maybe 1-2 a month. Some were very mild, while a couple she stopped breathing for a bit. Very scary stuff and I offer my well-wishes to you and your child. We spent 18 months going back and forth to Children's Hospital of Phila under the care of a pediatric neurologist. He hesitated putting her on medications because she had so few of them. She passed all her cat scans, MRI's and EEG's. She was finally referred to a pediatric cardiologist at CHOP. The first test they did on her was a 24 hour Holter monitor. Several PVC's showed up (which indicated a little concern about her heart rhythym during the day) and she later failed another test called a "tilt table" test. In this test, they strap her to a table which they move around in different directions. This she failed. They induced a seizure (had to administer IV fluids to bring her blood pressure back up) and attributed her condition to a drop in blood pressure. When I think back on it, many times she had seizures she was either stressed or not feeling well. One time she had a seizure was a couple days after she had her ears pierced. She was 4 years old. I was doing the ritual turning of the earrings and applying alcohol to the ears and I know she was getting upset. She dropped to the floor and had a seizure right in the middle of me turning her earrings. She would get stressed and her BP would just drop---what they call a vagal response. http://www.madsci.org/posts/archives/apr99/924734804.Me.r.html Then, the vagal response would cause a decrease of oxygen to the brain and thus the seizure. This is how the cardiologist explained it to us.
After a couple of meetings with the cardiologist, she recommend increased salt in her diet as well as frequent hydration during the day. I used to pack a couple juice boxes and gatorade in her lunch box at school and she was allowed "drink" breaks by the teachers. I tried to pack a salty snack (usually pretzels) as well. This new diet boost worked well and gradually the seizures decreased. As I said, she is now 14 and hasn't had a seizure since she was 12, though we had a near-miss about 10 months ago. As my dd got older, she could tell when a seizure was about to come on. She got accustomed to some stomach pain just before. So the one last year we were able to stop. We immediately had her lay down and got her something to drink and the feeling passed. She cannot let herself get dehydrated and she's become very good about watching her fluid intake.
I wish you the all the best and offer my encouragement. I am hoping it is nothing serious as there are just so many reasons one can have seizures. You'll be in my prayers.

 

[taeja71]

Hello all,

MY DD had another seizure at 3am. She seized, but tried talking during it. She was responsive this time as well. The seizure lasted about 1min. 45 sec. this time and she came out of the seizure very quickly by saying, "I couldn't stop shaking". Saw the same ER DR. and he was hesitant to give her any meds b /c of her EEG coming up this Wednes. The ER kept her for observation for about an hour. The ER DR. said if she had another seizure before her EEG they'd admit her and do the EEG there. So, I don't know. We're at God's mercy and in his care. We're also leaning on all the dr.'s experience for Robyn's treatment. It's so tough when you enter into a new unexplored territory in your life. I guess we won't know anything until the EEG.

Is it possible that Robyn could have an MRI done?? What would determine her to have that?

Tae Ja

 

[Nik's Mom]

I'm so sorry! I will keep you all in my prayers. I know this must be sor terrifying for you. Please keep us posted on the eeg results.

 

[minkydog]

Watching your child seize has to rank as one of the top 10 most stressful events on your life. My DS9 and my DS18 have both had seizures. My DH and the dog also have seizures. The strange thing is, they all have different types. It sounds like you are on the right track and I don't have any advise, except to listen to your neurologist. I'm sure they will want to figure this out quickly--they really do understand how frightening this is for a parent. The hardest part is the waiting. Try not to read toomuch internet stuff--you'll scare yourself half to death. No need worrying about stuff until you know what you need to worry about. BEst of luck to you all on the EEG and workup.

 

[taeja71]

Would I be allowed to be in the room w/ my DD while the EEG is going on? How long does the test take?

 

[eternaldisneyfan]

I have had about 6 EEG's done because I have a 40% chance of developing epilepsy do to a brain anomaly (hypo dense white matter) and my parents were always allowed. Just ask. All mine were done in a clinic/outpatient. In the outpatient setting my test went like this. I arrived and they explained why/consent. They explained that I would need to be very still/not move, relax, and try to go to sleep. Sometimes they give relaxants or mild sedatives to encourage sleep depending on the age and cooperability of the patient. Putting the electrodes on can take awhile. They secure them to the head with a special glue. A wire is attached to each electrode. Then they may put a special cap kinda like a shower cap to secure the wires. First I watched a TV where they did flashes and other things that can induce a siezure. I then layed on a bed and was instructed to relax, not talk, and sleep. They dimmed the lights and started to record. If you are in the room you can't talk to your daughter. I would specifically ask. The test monitors the brain wave patterns. The time of the test varies on how hard it is to put on the electrodes (wiggling, amount of hair) and how still, relaxed, and sleepy you are. After they are done recording, you get up, they remove the wires, and take of the electrodes. Removing the electrodes can be a little painful and gross. They use a slimy liquid to loosen the glue and pick it loose with a comb. This can take awhile. Your hair will look really greasy after this, so I suggest bringing a hat that will be ruined. My tests ranged from 2-4 hours. Now this is my experience and yours could be different. As I understand, inpatient hospital tests are the same except you go about your normal activities with the electrodes and wire secured to your head.

In answer to the MRI-they will almost certainly do the EEG first. EEG's record brain waves which are what are disturbed in epilepsy. Too many signals, brain gets overwhelmed. MRI's scan and make a picture of the brain's structure to check for things like concussions, swelling, bleeding, hemhorrage, brain tumor, and brain anomalies. For example, I have had them for my concussions. Most of thesewouldn't cause your daughter to sieze.

If she is talking and has bladder/bowel control sounds more like Myoclonic. My seizures are Myoclonic and caused by stretched/pinched nerves from scoliosis and back surgery. Spinal seizures. I jerk and twist and shake like epilepsy. My muscles also contract/release, jerk, and spasm. Last night was horrible as I seized and spasmed uncontrollably for almost 7 hours. I was in so much pain from all the muscle jerking that I took my prescription pain medicine which also seems to help the spasms/seizures. I tried Baclofen but couldn't take it because it made it difficult to breathe with my compromised lungs from Muscular Dystrophy.

Hope I helped and hope you find a solution!

Christamae

 

[4fosterkids]

My son had his first seizure just before turning 3, he is now 12. They have never determined any reason for his seizures. He had a normal CT, MRI and first EEG. His 2nd seizure (again, unprovoked) wasn't for almost 6 months after the first, and that is when he was first put on meds. I would seek out a good pediatric neurologist or epileptologist (neuro who specializes in epilepsy). I would not tend to rely on an ER doctor for treatment because they do not tend to see alot of seizures or know of the current treatments. They are good for stabilizing your child at the moment. I have always been with my son for his EEG's, so that should not be a problem. The most important thing, in my opinion, is to get the seizure type pinned down as soon as possible (someone already posted some of the different types previously) because some meds work well with certain seizure types and some meds can cause certain other types of seizures to begin. We learned this the hard way unfortunately, and my son has had 4 different seizure types over the last 9 years. You should try to note exactly which limbs were moving, shaking, stiff etc, as well as eyes deviating to the right/left, how long it lasted, how long they were postictal (or sleeping afterwards). They always ask what the first sign of a seizure was, but since my son has 99% of his during sleep, in the 4am-7am timeframe, we do not usually get to see the first movement or sound by the time we get to his room. Contact your local Epilepsy Foundation for information and referrals in your area, as well as doing your own research.
Best wishes to you and your family. I remember those first seizures and how scary they were to everyone.
Jill

 

[taeja71]

Here's a pic of DD who was playing dress-up. We're counting down to her EEG appt. while being seizure free.

 

[Nik's Mom]

What an angel! Please keep us posted on the test results. I'm sending prayers your way!

 

[3DisneyNUTS]

I am so sorry you are going through this. DS (4) has seizures as well. THANKFULLY most kids grow out of seizures when they occur in chilhood.

The eeg will be pretty easy for you and your daughter. The electrodes don't hurt and the whole test for my son took about 1 hour. If they do not see any activity they may schedual her for a video EEG and that is about 24 hours to see if they can catch the event.

The meds are really good and there are tons that they can chose from. Some are seizure type specific so that is why they want to wait till the eeg. I hope they stop easily and your DD never has them again.

I know how rough they can be.

 

[goodferry]

I am so sorry to hear that you have to go through this. My dd (now six) started having seizures when she was three, only about one or two in a year, but it can be so scary. I can tell you something I wish someone had told me in the begining, this will be so much harder on you than it is on her. Make sure going into the EEG that you explain to her that they are just going to put wires on her head to see what is going on inside and that it will not hurt and that you will be there for her. The 24 hour EEG and the MRI are next steps. Once again, the 24 hour EEG is no biggy, you would be allowed to stay with her, they would video tape her along with running the EEG the whole time. The MRI is a little more problematic because at this age, they give them medicine to knock them out through an IV, which can be rough. My DD has never shown any unusual activity on her EEG and the MRI did not turn up anything. We have not put her on meds because our pediatric neurologist said that with her having only 1-2 a year, it wasn't worth the potential side effects of the medicine. She hasn't had one since last year during the summer olympics. That's when we figured out that one of the things that was triggering the seizures was exhaustion. Now we make sure she gets to bed at a reasonable hour every night and things have been better. Her neurologist has diagnosed her with childhood epilepsy and feels that she will grow out of it. Please PM me if you have any other questions.