Partial Seizures . . . anyone with firsthand insight?

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So . . . we got my son’s EEG results back a couple days ago. (Recap: He’s almost 5, diagnosed Aspie a couple months ago. Highly verbal, smart, quirky sweetheart. Most of our friends would never even guess all this is going on with him.) I’d done some reading up on absence seizures, but I wasn’t exactly prepared for the results; apparently, he had multiple partial seizures in the mere 10 minutes they had the electrodes on. (It was a sleep eeg, not stimulated or awake).
Unfortunately, it was his developmental psych who gave us the results and she didn’t have more info other than that. The neurologist had some urgent appointment that day and due to schedule conflicts, we can’t speak with the neurologist for another week. (We go to a big hospital for the psych/neuro stuff).

We’re dealing with some huge emotions, of course, when we realize he may have hundreds of these a day (possible) . . . and we have no idea exactly when. The only symptoms he has had is ‘spacing out’, not answering his name or questions we ask, and occasionally a grimace, an anger fit, or mood change. When we meet with the neuro next week, I guess he’ll talk to us more in detail about further testing or treatment. Trying to prepare: for any of you who have gone through this, what kinds of questions should I ask?

I started doing a bunch of reading on partial seizures, and it seems they can affect mood, temperament, attention, health (feeling bad), energy level . . . now that I know, I believe he could be having them quite often and they may be a part of what is hindering his development in some areas. How do you know where the ASD ends and the seizures begin? I read that up to 40% of ASD kids have seizures. How do we know which behavior is controllable and which is because he’s just had a partial seizure? I think we are going to really have to patiently err on the compassionate, patient side, but at the same time don’t want him to behave inappropriately and think it’s ok. (My husband is feeling super guilty for how he has handled situations in the past, now that he knows this.) Wow, this is hard. However, I am SUPER thankful that we are catching it now, and not dealing with ‘no results’ tests when something actually is going on.

Also, we have an evaluation with speech therapy and OT this next week . . . if seizures are affecting some of his behavior/attention/speech, can therapy help even though he’s not on seizure medication yet? I know you aren’t all ‘professionals’ and I can get some of these questions answered at our appointments this week, but I actually consider you experienced parents as professionals in your own right! You live this. Anyway, just hoping there’s someone on the forum—Aspie or parent—who can chime in with some positive thoughts or good tips for me. (Seizures websites are all technical; I want the personal scoop.)

Nobody in my house suffers from seizures, but DS and I both get migraines, which probably have some similarities to seizures in terms of how they affect our lives and behavior. We both are somehow aware that a migraine is coming. I start getting visual disturbances, DS will get sick to his stomach. While DS legitimately can't be expected to behave nicely if he's worried about throwing up, I am often mean and snappy because it takes a lot of energy just to be able to see - and there's no excuse for that.

In other words, while it is hard to control my behavior, that doesn't mean I can't control my behavior, nor does it mean that anyone should expect to be abused by me. It does, however, mean that I need to assert my need for space and quiet, and other people should respect that need.

Does this make sense? I think it applies generally across the spectrum and for many other neurological problems and psychological conditions as well:

Yes, it's significantly harder, and will take patience to teach and more time to learn. No, it doesn't mean you can abuse your family and friends. Yes, you need to learn to express and assert your needs, and yes, other people need to respect them - but behavioral expectations stand whether or not your needs are being met.

http://www.freevideosforautistickids.co ... tions.html

You might want to check out the link above on comorbid neurological conditions and consider joining an epilepsy support group.

I personally have a history of partial complex seizures, as well as grand mal/tonic clonic seizures. I had them from age twenty until age 28. At the time, I was not in an epilepsy support group and did not do my homework on medications and research--BIG MISTAKE.

Most seizures are able to be controlled by meds, but some of the meds can produce unpleasant side effects. Therefore, it is a very good idea to be in a support group and read up on the meds, so if your child starts having slurred speech (a common side effect that I experienced with one of the meds) you know to tell the doctor and ask for a medication or dosage change. Some of the meds can also affect concentration (Neurontin has this reputation). Most will cause drowsiness--some meds more than others. However, having uncontrolled seizures can be unsafe (accidents, etc.) and very disruptive for a person's life.

My seizures were originating in the right occipital lobe, in an area that controls peripheral vision on the left side. Fortunately, I was a good candidate for surgery, and the tiny part that was causing the seizures was removed, causing peripheral vision damage on the left side, but no other ill effects. Brain surgery is risky, so doctors will not do it unless everything else has failed.

I had previously tried insertion of a vagus nerve stimulator--a battery operated device is placed in the chest and hooked up to a line connected to the vagus nerve. Stimulation of the vagus nerve can stop seizures.

The partial complex seizures did cause short-term memory issues--I would forget the events immediately before and after a seizure and would have up to four seizures a day. Some of the meds could have also been affecting my memory. I was able to complete law school with the seizures and on seizure meds, but it was very hard, and I was an unusually good student before I had these issues.

I was not unhappy while I had all the seizures, though. I think that the meds might have even made me come out of my shell a bit and become more sociable.

I did a whole lot better with the seizures if I kept a consistent sleep schedule, got plenty of sleep, didn't have a whole lot of stress, and avoided caffeine and other stimulants. Lack of sleep could cause seizures, and the most severe seizures always occurred in stressful situations after getting little sleep. (Waiting until the last minute to get things done or study turned out to be a bad way to go, and I had to change my habits in this area.)

--Got to go. It will be okay. Good luck.

Hi......so sorrry that you are going through this!
Me and hubby are still convinced that our son gets this type of seizures....
A few months ago my son started getting this "temper tantrums" where it seemed as if he wasnt in contact with reality.....we had an EEG done......the results showed disturbances...the pdoc said she wants to put him on epilepsy meds emediatly.....we got appointment with neuro...what a dissapointment!
He just saw my sons hostile behaviour...did a MRI....thank goodness....normal. He was so obsessed by my sons inappropriate behaviour....said my son is manipulative, all our fault......see nothing wrong with him!
He still didnt explain the abnormal EEG! Hope you have a better experience!
Went back to pdoc......she lowered his antidepressant.....She increased it to much.....Antidepressants lower the epilepsy threshold....so once she lowered the dose....these seizure behaviour decreased.....she said that as pubirty kicks in it can either disappair or go into full blown epilepsy.
This said and done....I know exactly what you mean by how much to tollerate and how much to expect him to take responsibility!! !! ! We went through the same situation!! !! ! After the terrible stuff the neuro told us we did take a hard look at our parenting style....wedid start to give more consequences for any inappropriate behaviour....and you know what...to our surprise his "bad" behaviour improved! There is a very fine line between illness and manipulation.....we had to learn this the hard and painfull way! BUT......your gut , this I believe....willgide you.....With us there comes a time when we realize that he is out of control and cant make better choices.....then we let it be, BUT he still looses privelidges especialy for hurting some one.
Maybe you can try and make a rule to say, when any one in the family feels angry, misrable or upset, we are not allowed to touch anything or any one.....this will help your child to try and not hurt any one, himself or brake anything?

I forgot to respond to the last part of the question. Yes, do speech therapy and OT even though he is not on meds yet.

Speech therapy is usually more effective in younger children, so you can't wait on this.
Also, it may be harder to break an older child of incorrect pencil grip, if that is the particular OT issue. (Other OT issues can maybe wait).

When I went to law school, I was on a lot of meds and had uncontrolled epilepsy. (The meds were not working.) I had memory problems, concentration problems, and problems with drowsiness, but I was able to learn what I needed to learn by studying every day in the library, using commercially available study aids, and a whole lot of repetition. It took a lot longer to learn the material than it would have taken without seizures and meds, but I was still able to learn enough to graduate in the upper half.

My older son with classic autism has horrible anxiety issues, but he started his speech therapy at home way before he got on meds. (I started working with him on speech and reading practically from birth and was very aware of developmental milestones and how to encourage speech.) The meds made his progress faster (Prozac for anxiety by day and Clonidine at night), but he was making good progress even before he got on them. (Incidentally, he is 7 now, attends a regular second grade class with some support at school and a lot at home, is reading well, makes okay grades, and speaks very well for a child with a history of classic autism).

http://www.freevideosforautistickids.co ... ulary.html
http://www.freevideosforautistickids.co ... Links.html
http://www.freevideosforautistickids.co ... _XNF6.html
http://www.freevideosforautistickids.com/reading.html
http://www.freevideosforautistickids.co ... Links.html

Above are some helpful links. I think that a child with multiple challenges will generally benefit from extra work at home. Reading skills will help with the speech.

We found the OT and ST to be of most value to our son!
The ST helps him have less verbal misunderstandings, understanding his environment better, lestening the anxiety.
The OT can work on a neurological level better up till age 4-5, before the sensory systom mattures....they talk about working from bottom up and as the child matures they start working from top down, meaning using cognitive skills to adjust to stimuli that has a negative effect on them, like with my son, planning, tactile sensitivity, internal stress, exct.

I have / had epilepsy as a child. Was never on medication. (doctors dismissed it and we accidentally found out last year) No-one can now tell me whether I still have it.

Thanks so much all of you!! Very useful dialogue.

I haven't found an epilepsy support group yet online, but I'll look a little harder . . .
We'll see what the neuro says. I am nervous about putting him on medication. He already struggles with low energy as it is. However, if these seizures are interfering with his development/speech/attention, it may be worth it to try. Definitely will have to take it to a support group, as suggested.

Evaluation with speech therapist today . . . definitely have to start OT, ST, and even ABA as soon as possible. The next few weeks are loaded with appointments . . . he's almost 5, and I feel like we are so behind, not finding all this out until now.

The video links are great! I love having more resources for home . . .