I had a very scary night tonight, and I'm looking for some input. I think DS2 may have had a complex partial seizure based on what I've come up with on google. He has no history of seizures so this is kind of just a shot in the dark. When he was younger, we thought he may have febrile seizures, so it was always something I was on the lookout for. He has a DX of ASD as well.
We were watching a movie together before bed. I had just gotten him a glass of milk that he requested. He was sipping it then suddenly started scooting up and down on the couch as if something was hurting him. I grabbed the milk and set it on the table and asked if he was ok. He wouldn't answer or make eye contact with me. He kept doing this scooting motion, then I noticed he was biting his teeth together over and over. He wasn't having convulsions or shaking at all. Although he has ASD, I would not say that he is unresponsive to me talking to him (more with strangers) so I began to get frightened when I sat down in front of him, held his hands and repeated "N, what's wrong? Are you ok?" and he made no eye contact with me (not typical of him with me) and continued to clench his teeth. I thought maybe the movie was scaring him, so I picked him up and brought him in the bathroom. I started to draw a bath, thinking he needed some distraction (he loves baths) or maybe wasn't feeling well. He wouldn't talk, and continued to whine, clenching his teeth and rubbing his hands on his face (does not normally do this.) I kept talking to him throughout this and he never answered me. I turned the bath off, drained the water and I went to grab a big bowl thinking he was going to throw up (he has sensory issues and is afraid of the toilet flushing, therefor won't vomit in it) and when I came back he had layed face down on the floor and was completely asleep. His eyes were back in his head. I stroked his hair and talked to him and he began to open his eyes but wouldn't talk to me. After about a minute of disorientation he told me that he wanted me to hold him. I carried him out to the couch and he sat happily finishing his movie. He seemed groggy but otherwise happy.
I am seriously freaked out. Being it's late, I called the pedi and got no answer but did leave a message so hopefully she will call me back. I am going to take him to the ER if I don't hear back, but I'm waiting for DH to stay with my older DS who is already in bed. He is completely fine now. He finished his milk, talked and played with me, then asked to lay down with me and drifted off to sleep about an hour later. I'm keeping him with me tonight so I can keep an eye on him. I am waiting for a call back from my MIL who is an RN for some advice.
Anyone have any experience with seizures in their children? Does it sound like that's what this was? It was about 5 minutes total from start to finish but literally just felt like my entire life.
I'm so sorry you and your son experienced this tonight. I would say, in my own experience, that yes it was a seizure. In my personal opinion (I'm not a nurse or doc, just an experienced parent) as long as your child is okay right now (not continuing to seize, acting fairly normal but groggy/sleepy, not sick otherwise), there's no need to take him to the ER. I would call your doc first thing in the am and ask if they'd like to see him. They may say no for now. Some docs will immediately send you for an MRI if your child is past toddlerhood, has autism, wasn't a febrile seizure, etc. Others will wait.
My son is 6 yrs old and has ASD. He had his first febrile seizure at 5 yrs old. It was very strange and very much like you describe. If I'd never seen one of our dogs have literally hundreds of grand mal seizures and go into status epilepticus, I'd have been pretty panicked. But H's seizure was sooo mild in comparison to that, that I was okay. Our doc did not have us bring him in right away, but we saw him the following week to discuss during a regular yearly check up that was already scheduled. He said if he has even just one more, he wants an MRI. His fever was only 100 degrees AND I'd already given him Ibuprofen b/c he said he had a horrible headache and felt like throwing up. He has NOT had another seizure of any kind since then.
If anything changes or if your mommy instinct says to take him to the ER, then by all means, I would do so. I really hope he's okay and doesn't have another one. It is more common, however, for ASD folks to have seizures and/or what the medical establishment calls "epilepsy". There are many, many things that can help prevent seizures and/or reduce their severity. Medications are not the only option, although sometimes they are absolutely necessary.
Best wishes. I hope you can get some rest tonight. FWIW, it is normal for someone to be absolutely exhausted and sometimes even sore after a seizure.
Mamanoish, I hope your ds is doing better today. I would certainly get your ds to the dr today, if you did not last night. The inability to respond and the automatisms are characteristics of complex partial seizures, but you really need a doctor to evaluate your ds's situation. The sooner you can get your ds in to the dr in relation to a seizure, they easier it is to treat. Even postictal there can be evidence.
I am curious what some of the options besides medication are that you seem to be implying. Could you please share or elaborate.
Anything that reduces overall stress, whether it be getting more sleep or more restful sleep (so treating things that cause not-restful sleep like allergies, a too warm room, reflux, etc), a more consistent routine, quieter environment, different lighting, stress reduction techniques like yoga, mediatation, deep breathing, etc can all help. And those are fairly easy non-invasive things to try and help reduce the incidence and the severity. Stress/anxiety is a common seizure trigger for those who are prone to seizures. For example, on our dog's case, he's terrified of thunderstorms--a storm on it's way used to *guarantee* he'd have a seizure.
There are some recent studies/looks at melatonin helping to reduce seizures-I no longer have links b/c I lost my computer and have never looked them up again.
Acupuncture and chiropractic, Chinese medicine in general can help--ultimately, that's what solved it for our dog. People do use these modalities for seizures as well.
There are many things out there that can help. At the very least, safe things exist that can help reduce the severity and frequency for some, and in others, may completely cure. You just have to find qualified practitioners to help.
Hope that helps answer some of your questions about my personal experiences and thoughts.
Thanks for your replies, sorry for just updating now. It's been a rough few days! My father in law ended up talking to us about it for a bit, and we decided that we should stay home with him that night since he was already sleeping and became very distressed when we tried to wake him to take him. He slept with me all night and I think I woke up every 5 minutes to check him. I laid my head on his chest in the morning and noticed that his heart was beating irregularly and it completely freaked me out.
We took him to the ER in the morning, but since it is a small hospital, they didn't do much. Since it was veterans day, nothing was open either in the way of neurologists. They checked his bp, listened to his heart.. etc. But he was acting like a normal, happy boy so they weren't too concerned. They encouraged me to follow up with his pedi and schedule appts for eeg's ASAP, so that will be my first action Monday.
Nothing has happened since. He's slept with me each night (poor DH has been evicted from the bed since I'm 6 months pregnant and we don't all fit) and I have noticed that he has been MUCH more irritable lately. More "OCD" as I would describe it and tantruming a lot more. I will definitely take some of the above into account and hope that these next few weeks can bring some answers. I have no doubt the more I've read over the last few days that this was a seizure. And it may have happened before and we just didn't realize it. He has only been verbal for a little over a year and would have episodes similar to these when he was younger, but to me, seizure meant convulsions and something completely different.
Thanks for the reassurance, I really needed it this weekend! I will update after hearing from the pedi on Monday.
Glad to hear your ds is doing better. The irregular heart beat would be scarey. I would certainly get him evaluated by a pediatric neurologist or epitologist. It is not unusual to be very tired after seizures or to have headaches. Many of my ds's eccentricities are in fact seizures, so I can totally see how it is easy to miss them as seizures. For a long time, we just thought it was his personality. Ds has complex partial and simple partial, and they can look like he is spaced off. Our neuro recommends the Epilepsy Therapy Project for info regarding seizures, living with epilepsy and drugs. I find it is a good resource.
In regards to the list from mrsfru, we already follow the good sleep habits because ds is triggered by lack of sleep. It was one of the first thing the neuro discussed with us... interestingly, ds has always had the best sleep habits out of any of us in the family. Because ds has seizure activity when wide awake as well as related to sleep, we are trying to control the seizures through medication. I talked to my friend who is an acupuncturist back when we were having behavior problems related to med side effects, and she did not seem comfortable working on a kid with epilepsy.
Sorry you had such a scary night. Our DDs first complex partial seizure was very similar to what you described. Scared the daylights out of us! We called 911, but she had already thrown up and was revived and acting normally by the time the paramedics arrived.
End result for us was that she has been on a relatively low dose of Keppra for 3 years. We haven't noticed that Keppra causes any bad side effects, but who knows? Our DD is a brain cancer survivor and has an intense medical history so it would be hard for us to tell whether Keppra was a specific cause of anything. She also has ASD and other special needs. She has had a few very minor breakthrough seizures (when we tried to wean her off Keppra initially, and when she outgrew her dose), but otherwise seizures are a non-factor with the Keppra, so we happily give it to her. She (and we) have enough on our plates without the additional worry and disruption of seizures.
FWIW, our DD has had several EEGs with hardly any abnormal findings - and she's only ever had a few seizures, and none as bad as the first one (which, in hindsight, wasn't that bad), but our docs believe us about the seizures because they're an expected side effect of brain cancer. I just mention this in case further testing fails to uncover anything definitive for your DS. After watching him go through something so scary, it seems like there ought to be some sort of medical proof, or at least a physical answer for it, but there may not be. It could be a "watch and wait to see if it happens again" kind of situation. That said, I hope you do get some answers and that you are able to find the right way forward for your DS and your family!
Hugs from another ASD mama -
isisreturning, I am relieved to say that with ds's mri/cscan, they found no evidence of tumor or lesion; although we do not know specific reasons for epilepsy, we assume it is genetic because dh's family has a long history of it. I imagine dealing with cancer was very traumatic, and I am so glad you dd is doing better even with epilepsy. The more I look into epilepsy, the more I find it is comorbid with other conditions like, asd, autism, and adhd. Ds has adhd and also dyslexia. Ds's neurologist also has epilepsy comorbid with adhd and dyslexia. He does not talk to ds about it, but they relate very well to each other. Ds has to avoid keppra because it is known for enhancing behavior issues with children that are prone... we are on our third and hopefully final aed, and it has been better for ds interms of behavior.