Epilepsy

Shanny

Does anyone have experience with epilepsy - particularly absence (petite mal) seizures?

old mama

I could write a book. I have three adopted daughters with seizures. Two have nasty grand mals and one petit mal. Can I help you with anything?..just ask. We deal with seizures almost everyday as none of my girls have ever found a medication that fully treated them.

Shanny

I don't really know what we are looking at just yet. This has been going on in some fashion for about 8-10 months but is gradually getting worse and just in the last few months has taken on the form of actual seizures. I knew it wasn't "just" heartburn (the initial complaint) but I wasn't sure what it could possibly be. I've only seen one person ever have a seizure and that was grand mal back in high school so I really didn't know these existed, let alone what they look like. My mother, who was an RN witnessed it for the first time this week and knew immediately what it was. It appears to be petite mal but they seem longer in duration than what is typically so I am just not sure. Seeing a neurologist on Thursday so I may have a host of questions once we hopefully get some answers. Thank you for your response, I will let you know!

kelleymel

My friends daughter has febrile seizures. They're mild and associated with a fever/illness. Could that be what it is? My friends daughter is okay, but she stays close to an urgent care if her daughter gets sick. I'm sorry you're going through this.

RedHeather

My cousin had a few incidents of really long absence seizures when she was around your daughter's age (to the point that they took her to the ER twice). That is a very unusual presentation (as those types of seizures are usually very brief), and they never did figure out what was causing them, but they went away on their own. I'm guessing they gave her some sort of med in the ER, where they confirmed via EEG that they were actual seizures, but she wasn't placed on any sort of maintenance med, and she never got a diagnosis of epilepsy.

old mama

It is sooo hard to initially diagnosis seizures. If she doesn't have one right in his office you might leave office disappointed without answers...have your cell phone ready to film her while they are happening so you can show the dr. The absence seizures sometimes show they are looking off into space. They could last for a few seconds or a couple minutes. If you call her name or touch her she does not respond. When we were in the hospital the dr. would actually take a pin and poke my daughter..who would not respond ...you could use something not so sharp..lol Your daughter's body might seem stiff or she just looks odd. One of my daughters started off with these petit mal seizures but went on to have grand mals. Even if diagnosed it takes a looonnnnggg time to find a medication in the right dose. It is a trial and error where you will have to balance the good the drug does with side effects. Keep good records...send her notebook to school, daycare or babysitters as well so everyone is on the same page. Have a watch with a second hand or timer so you can write down how long they last but more importantly how often they are happening. If she is having a hard time getting up in the AM she might have had them during the night as well. The dr. might ask you to go into the hospital where they will monitor your daughter machines and cameras to catch one. Don't panic..you don't have to run your daughter to an er for these types of seizures. Just watch to see if she is breathing and isn't in body position that would block her breathing. Many, many children just outgrow these types of seizures. I would make sure your child has plenty of rest and eats well. I have seen seizures worsen if they haven't had enough sleep or eaten on a regular schedule. Seasons seem to affect my girls as well..the worse is Fall...good luck and if I can help you with anything just ask.

Shanny

Thanks all. With each passing day this week they were getting worse. She has had a few in her sleep including early yesterday morning/over night. Then after being awake for 20 minutes she had another and went back to sleep for an hour afterwards (highly unusual). Right after waking the second time she had another prolonged one. We were able to catch it on video. She had a 4th early afternoon that I also caught part of it on video. I was concerned enough to head to the ER in hopes of getting a jump on some of the tests I knew we would have at the neuro appt we already had scheduled for this am. She had a seizure within 2 minutes of being put in a room so she had an audience of about 8 doctors and nurses at Children's. She had bloodwork, EKG and a CT which was clear and provided me with some relief that were weren't dealing with a a tumor or something rare but scary. So 5 yesterday and as of nearly 6 pm today, nothing. The neuro did an EEG today and we should have those results in a couple of days as well as waiting on a call to schedule an MRI.

We are actually homeschooling now which I am SO unbelievably grateful for in so many ways but especially because I would be panicked if she were at school all day now that this has started.

The doctor thinks we are probably looking at complex partial seizures from the videos and descriptions and the fact that they are getting longer and more intense with longer periods of confusion and sleepiness afterwards. Maybe what started as absence seizures has actually morphed into complex partial.

We had our first international trip scheduled for later this month which unfortunately we will have to postpone until we can get these under control.

b&kmakebabies

I am so sorry you are going through this. You are in my thoughts.

ahk00

I am so sorry. Hoping you get some answers and relief

old mama

Homeschooling is a great idea. You can adjust her day according to the seizures...I am currently homeschooling my two youngest with special needs and that is what we do. Unfortunately, those petit mal seizures can go into more serious kinds. It happened with one of my daughters. Great idea taking her to the ER and video those seizures. Several times when we were waiting for an initial appt. with a new neurologist we waited months...one time almost 6 months! Crazy. I hope you find answers.

ahk00

I have been reading ALOT apt CBD oil over the last few days for my ADHDer. I have continued to read that it helps with seizures along many other things. Might be helpful to discuss with the dr.

MNmommas

Shanny, thinking of you two. Glad they are working hard to get it all figured out & under control, but so sorry you have to deal with it at all. Hugs for you both!

sara291

I just saw this. Riley has absent seizures in his left frontal lobe. We are still working through this. We have been seeing the doctor for about 2-years and see his nuro again tomorrow. We had it finally under control for 3-weeks last June and that was it. So far we haven't been able to control them. He has had a few EEG'a including a 3-day hospital stay as well as a MRI and a few other things. Tons of genetic testing. We think his issues all the back to his issues as a newborn all relate back to this.

Shanny

Update: good news/bad news

Good news - Kate is 15 days seizure free!

Bad news - her 24 video EEG was abnormal (though this was in the middle of being seizure free) and she is still having about 5-6 "auras" a day (feeling like she is about to have a seizure or getting a taste in her mouth than usually precedes a seizure). Next we go to Children's Hospital for a 72 hour video EEG but not until the end of December so more waiting and seeing if she continues to have them and having no idea why...

old mama

I hope you find the answers. My girls never had the auras...I wish they did because training them to sit and be safe when they can feel the aura coming on can sure help avoid injuries. My neighbor has epilepsy and has auras. I hope they find whatever treatment they can to help her. I hate epilepsy...it limits too many things in life...I have seen it with 3 of my adopted children.

K&H

Yay for good news! Boo hiss for bad news.
So sorry all this is happening, it must be so overwhelming! Could it be food related? I know she had some major food issues when she was young.. or could the food issues have been epilepsy related? (Clearly I know nothing about epilepsy)

Shanny

K&H - no idea. So far I am unable to connect any dots as to rhyme or reason. I can't even say why they have suddenly stopped. Seems most people with epilepsy never find out the cause.

Old Mama- trying not to limit her too much right now, easy enough as she is about to turn 8, we homeschool, she's always by my side or with my parents when i work - that won't always be the case of course! Since she doesn't have "drop" seizures that's also a plus in terms of danger (though we have certainly already encountered some dangerous situations!).

Thanks for all the well wishes, will keep everyone posted.

Shanny

Old Mama (or anyone else reading this with experience) - have you heard of or have any experience with the watch designed for epileptics?

15 days never turned into 16 days so I am back in research mode (funny how in 15 days life almost went back to "normal").

K&H

michgirl

This may sound really odd but my niece has seizures and the become worse (amount, length,severity) in different phases of the moon.
Is she one of those people whose attitude is affected by a full moon?
Sorry if it sounds wacky and way out there. I would have never thought it until I've seen it happen.

old mama

Never heard of a watch for epilepsy. That is great she is going so long without a seizure. One thing I do know is epilepsy is hard to treat and hard to understand. My daughters are adopted so not biologically related but when they were children oddly they would have some of the same bad days...days with seizures...we documented and documented for years and could never determine why or what brings them on...other than fatigue...especially in my oldest daughter she is more likely to have a seizure if she hasn't gotten enough sleep over a few days. I hope your daughter never has another.

ahk00

Maybe something to think about for a little piece of mind: if you have a dog you could possibly find a local service training company that would train it for free. You could have this in place as well. Might help for comfort as well.

sara291

Riley has another 24 EEG in early December. He has had a few and his last one was a 72 hour. He actually didn't have any seizures in the 72 hour one however the it still was abnormal. He has several spikes and then had a few sessions of 5-10 spikes in a row. His are in his left frontal lobe. During his 72 hour EEG it was intersting to see the results and compare it to his behavior and mood.

So far we have only been able to control the seizures for 3 weeks over the past 2 years of treatment.

Shanny

We received our official epilepsy diagnosis this week. We spent 4 days being monitored in the hospital trying to catch a seizure but she hasn't had one in 5 weeks! Her eeg was still abnormal so if (more likely when) they start up again she'll need to go back for another long haul. Also need to repeat MRI as he said the first wasn't great but he mentioned puttingvher under anesthesia for that and I just smiled and nodded - um, no. He wants to start meds but I'm holding off to see what happens and hoping against hope that they go away just as randomly as they came. If they come back we'll go see the only doctor in town that will more likely prescribe medical marijuana as a first option rather than wanting her to resist at least 2 pharmaceuticals first.

All in all we are just enjoying being seizure free for however long it lasts!

Sara - how is Riley doing? Kate's seizures/spikes come from her right temporal lobe. Her spikes are pretty much whenever she sleeps which he said was pretty consistent with seizure patients. Have you looked into mmj?

tinydancer

oh my. how scary and the not knowing... I have also heard and seen videos about the CBD oil. I would look into that immeditaley. I have a friend who has seizures and doesnt take any meds. my own child had one from hypoglycemia. it was so terrifying but never happened again.