New to epilepsy

[Mom210]

Hi all!
I am a mom to ten kids, ages 24 to 7. We have a charmed life and I didn't even know it! None of my other kids have had any medical condition more serious than ear infections, brace and broken arms. My sweet baby boy had his first seizure 4 3 years ago. It seemed to be an isolated incident. Then Sept 13 this year things started up again. He has had 6 seizures since Sept 13. The first one was scary but we went to our pediatrician who referred us to his twin brother who is a neurologist. I've seen him for a minor ailment and felt good about that. He prescribed medication and we thought that would be it. I was doubtful that he would even have another seizure. I felt the medication was just to make me feel better. We took it religiously, though, because the seizures are full body tonic-clonic with some jerking (I've read around posts and I am confused. I thought basically what they used to call Grand-Mal was tonic-clonic and involved both stiffening and jerking. Ray usually starts by getting stiff and then progresses to jerking movements.He smacks his tongue loudly and his stomach contracts for seizures during the day. I don't know if it's because his stomach is empty at night or because he is developing a different type of seizure but these last two seizures have involved his arms folding up toward his face and becoming rigid while the rest of his body jerks. The spasms in the legs don't stop for some time, even after he has regained consciousness and managed to say a word or two.
His seizures are long- on medication between one and two minutes. Before medication 6 to 10 minutes.
We homeschool but it has nothing to do with his condition- we homeschooled before. We are practicing Catholics and we add a lot of religion to our curriculum. Ray and my 9 yo daughter are ADHD and I don't want to medicate them for that, so we homeschool.
Any advice about seizures we would greatly appreciate. We are nervous and uncertain about what to do at this point. Obviously the doctor has increased his medication. He is now on 60 mg of Topamax. He hesitated to raise it to 60 mg but after these last two he said he would and if we continue to seize we will try a different medication. I like the way Tompamax reacts with him. No grumpiness or drowsiness. It's all him.
I am so thankful for all the support here! It's a God send!

 

[qtowngirl]

these last two seizures have involved his arms folding up toward his face and becoming rigid while the rest of his body jerks. The spasms in the legs don't stop for some time, even after he has regained consciousness and managed to say a word or two.
His seizures are long- on medication between one and two minutes. Before medication 6 to 10 minutes.

welcome mom210

you were right, this is a grand mal (newly known as tonic clonic). tonic is the first phase that quickly turns clonic, seizure is then majority of the body.
it's normal for things being off when the seizure stops, takes time for the brain to start focusing and operating properly again, and is a large range for all of us- some feel 'okay' within an hour, some need days. him 'saying a word or two' is the beginning of thoughts (the brain's first recovery) being turned into words, which always takes a bit (myself 10 to 20 minutes from waking to my first word). totally normal, and good for him for trying! physically and mentally a tonic clonic is exhausting, very tired brain and sore muscles (especially with possible injury). as for length of time, normal range is between one to four minutes; the standard is to call an ambulance if a tonic clonic has not stopped at five minutes. there isn't a 'standard' however that being on medication decides length of seizure. regardless of which type and doseage, if one has a tonic-clonic it is referred to as a 'breakthrough' seizure (ie: your doc referred to upping or changing ray's topamax if so). and it's great he's not experiencing much for side effects, always a bonus.

On Tonics... Author Gregory L. Holmes, MD
Tonic seizures are brief seizures (usually <60 seconds) consisting of the sudden onset of increased tone in the extensor muscles. If standing, the patient typically falls to the ground. These seizures are invariably longer than myoclonic seizures. Occasionally tonic seizures terminate with a clonic phase.
The degree to which consciousness is impaired is often difficult to assess. In seizures lasting longer than a few seconds, impairment of consciousness is usually apparent.
Postictal impairment with confusion, tiredness, and headache is common. The degree of postictal impairment is usually related to the duration of the seizure.
Electromyographic activity is dramatically increased in tonic seizures.
Tonic seizures are frequently seen in patients with the Lennox-Gastaut syndrome, a disorder consisting of mixed seizure types, mental retardation, and the EEG findings of a slow spike-and-wave pattern. Seizures are usually more frequent at night.

Tonic seizures have been divided into four types:
-Axial tonic seizures begin with a tonic contraction of the neck muscles, leading to fixation of the head in an erect position, widely opened eyes, and jaw clenching or mouth opening. Contraction of the respiratory and abdominal muscles often follows and may lead to a high-pitched cry and brief periods of apnea.
-Tonic axorhizomelic seizures begin with a sequence similar to the axial type, but then the tonic contractions extend to the proximal musculature of the upper limbs, elevating the shoulders and abducting the arms.
-In global tonic seizures, the tonic contractions extend to the periphery of the limbs. The arms are pulled upward to a semiflexed position in front of the head, and the fists are clenched, producing a body position similar to that of a child defending himself against a facial blow. The lower extremities also can be involved, leading to a fall if the child is in a standing position.
-Asymmetric tonic seizures vary from a slight rotation of the head to a tonic contraction of all the musculature of one side of the body. [end]

mom here is another description:
TONIC phase - The person will quickly lose consciousness, and the skeletal muscles will suddenly tense, often causing the extremities to be pulled towards the body or rigidly pushed away from it, which will cause the person to fall if standing. The tonic phase is usually the shortest part of the seizure, usually lasting only a few seconds. The person may also express vocalizations like a loud moan or scream during the tonic stage, due to air forcefully expelled from the lungs.
CLONIC phase - The person's muscles will start to contract and relax rapidly, causing convulsions. These may range from exaggerated twitches of the limbs to violent shaking or vibrating of the stiffened extremities. The person may roll and stretch as the seizure spreads. The eyes typically roll back or close and the tongue often suffers bruising sustained by strong jaw contractions. Incontinence is seen in some cases.

it is rare to have only a clonic (muscle contraction and spasm on its own, without a prior tonic going unconscious, eyes back and drooling), here's from John Hopkins Epilepsy Centre:
"A tonic seizure is typically accompanied by a clonic seizure – it is rare to experience one without the other. When both are experienced at the same time, this is known as a tonic-clonic seizure (formerly known as a grand mal seizure)."

best of luck (((and HUGS to him))). keep us posted...

 

[Mom210]

Thank you for that info

Thank you for that information. I have read over the internet and got a lot of that but now that's it is in one place that helps! I can let my husband read it, too.
I appreciate the personal experience. That is always helpful because I don't know what I'm looking at. He had so many stomach contractions at first I decided it was something wrong with his digestive tract. He is now crying out when his seizures begin and more muscle retraction and flexing afterward.
I am just worried about him. I know some syndromes with seizures can cause deteriorated mental function. So far I haven't seen any sign of decreased mental function. He is a bright boy and otherwise neurologically normal. I just wish I knew why this is happening.
You have not experienced mental decline have you? It certainly doesn't sound like it. Mental decline and behavioral changes are not typical in epilepsy, correct?
Thank you, I really appreciate the info and support!
DeAnne

 

[qtowngirl]

unfortunately there isn't alot that's 'typical' in epilepsy. mental decline, just in the word 'decline' can happen at any time for a number of reasons.
-due to repetitive seizures (some with e have many a day, every day, epilepsy ranges are HUGE)
-type of medication, can cause issues from fogginess to distraction; ongoing trial and error
-one's seizure triggers; these can cause szs and a high state of stress, which often makes szs worse as well (top 3 are lack of sleep, stress, alcohol/drugs).
-length of time one has with epilepsy; myself close to 20 years and fully admit that i was sharper 10 years ago, five years ago, than right now (aside from brain surg). lack of short-term memory is common, as is ability to concentrate. it also was an issue for me with too high a doseage of topamax and another time on vimpat.
-as 'decline' covers a wide range of things it really depends on all of these, and not excluding one's daily life. long days at work? bad diet? don't sleep well? depressed? it is also possible to have a seizure after missing just one dose of medication. i know some of this doesn't apply to ray's life now, but good to keep in mind as he's growing up.

re: behavioural changes, i'm curious what article/site this info is from. just like mental decline, it's different for everyone depending on what type of e, age, personal life, and definately the reaction to medication. behavioural changes are well known with some e meds, mainly keppra.
re: crying when his sz begin, does he talk also? there is a possibility that it's a pre-tonic clonic sz known as a partial.
re: why it's happening, this is the start of the road my dear. 70 per cent of those with epilepsy have it due to an unknown cause, the rest being tumor, lesion, injury etc. at this point it is eeg's, mri's, possibly a cat or pet scan, and keeping a daily diary of what he did, ate, mood etc. with our help it's amazing what a doctor can figure out when it comes to history and possible causes. have they done all the tests yet? has he been diagnosed officially?

so sorry about it all, it is hard to live with whether the one with e or the family, but it does get better. really, it does. life change for sure, but good for ray- plenty of support from his mom and dad and the site as well!

 

[N Sperlo]

Mom210,

You're getting a good educated description, here, from qtowngirl. While you absorb all this information, keep in mind that seizures are different for everybody. They feel different an they appear different. Not only that, but over time, they may change. When the happen, be ready to observe and note every difference so you can report them to your son's neurologist.

Best of luck with the situation. We are happy to answer any questions.