My daughter, Livy, had a seizure on 12/27. She was staying at my mom's and stiffened, started shaking, eyes rolling back, turned blue, the whole 9 yards. They handled it perfectly (I had epilepsy as a kid - but a different type of seizures - and there's a lot of history of it on my dad's side), and we got there just as the ambulance was getting ready to leave. She spent an hour or so in the hospital for monitoring and they sent us home.
She's had a bunch of tests since then, and the EEG showed a seizure disorder and an MRI done this week showed an arachnoid cyst. We were expecting this to "just" be epilepsy, so the cyst has really thrown us. We hate the neurologist practice that we're using and have appointments with two different ones, but can't get in until the end of February-beginning of March, so we've kept using these people to coordinate the testing. The current neurologist has said that he doesn't think the cyst caused the seizure, and assuming the 24 hour EEG shows what he expects, he wants to start her on medicine.
Everything I've read has said that while these cysts can be asymptomatic, seizures are a common side effect. I hate to put her on medicine if it's the cyst causing problems, but I hate to not put her on medicine if she needs it. Livy is only 4, and as much as we try to explain to her what's going on and that she needs these tests done, she's not tolerating them well, and we have to pin her down for most stuff. This 24 hour EEG we tried to have done once already, and the tech at this practice was AWFUL - didn't explain anything to us or Livy, was frustrated that she was so upset (but said no when I asked for a break to calm her down), and was roughly grabbing her to position her each time she moved. I stopped the appointment after 20 minutes and complained to the office manager and doctor (who both said they've heard this before - WTF?).
I just don't know what to do. I don't know if I should let her start meds next week, or wait until I get a second/third opinion. I don't know how to make this easier on Livy. I don't know how to make her twin understand why Livy is sleeping with us and getting more attention (we did promise her a night with just her and my husband and me when the tests are done). I don't know how to relax and sleep myself. The neurologist asked if she wakes up for no reason, and she does, quite often. He said those could all be mini seizures, so of course I spend most of the night staring at her now. I'm the primary earner, but I have a job that's extremely flexible, and my husband's isn't at all, so this is all falling on me. I can't even have a damn glass of wine at night because it makes me sleep like the dead, and I'm worried that would be the night she would have another seizure.
There's no real point to this, I just needed to get it out. If I talk to my mom or my sister they start crying, but I know it's tough on them because they saw her have the seizure. I just wish I had this and not her. And I feel like it's all my fault because I had the epilepsy, and because the doctor said that this cyst is fluid leftover from when her brain was developing in utero, and normally it's all gone by the time the baby is born. My twins were born at 36 weeks - maybe if I had kept them in longer this wouldn't have happened.
I am so sorry that all of you are going through this.
Can the medicine hurt the situation at all? If it is the cyst, will the medicine impact anything with it? I think I would lean toward starting the medicine because even if it doesn't help, it probably won't hurt. I'm totally making assumptions here though.
Post by hopecounts on Jan 22, 2016 12:38:46 GMT -5
Seizures can be damaging, do the meds while investigating the cyst, if the cyst is the problem and gets fixed then you can wean off the meds at that point. Find your local support groups for epilepsy and find out if there are better options for where to do the EEG where they are more used to children. Is there a children's hospital near enough for you to try there?
I am so sorry this is happening to your sweet girl. You are an amazing advocate for your daughter. You have done nothing wrong and are doing an amazing job of taking care of her and your family. I will be praying for you and your sweet family.
I was told I have an arachnoid cyst that was found incidentally for migraine work up as an adult. I side with the knowledge that lots of people have them and they are benign entities only found if looking for something else. Thinking good thoughts for your family.
We live near Yale, so I have an appointment with the head of Pediatric Neurology for March 4. I just hate waiting so long! We're having the EEG done at the hospital where the first one was done, and they were great there. I have no idea why he didn't have us do that in the first place. The MRI was done at Yale Children's, and they were AMAZING. She fought every step of the way, but they were so patient and kind and understanding, and even had a child advocate with us the whole time to explain to Livy what they were going to do and what was happening.
I'm going to ask the neurologist if the medicine can have any negative side effects if it's not needed. The research that I've done makes this seem like a relatively safe medicine, but I can't find anything on how safe it is if you don't need it, if that makes any sense. These type of cysts seem relatively common, but so far I was the youngest to develop epilepsy in my family at 6, and she had the seizure a couple weeks shy of turning 4. The cyst could very well be a coincidence that we just happened to come across because of the testing, but I just want to know. 100% for sure. Which will likely never happen.
My goddaughter had a cyst that they found in November and had surgery to remove it (different type of cyst, and causing migraines), and they had to cut her pituitary stalk. She's 6, and will have to be on hormones for the rest of her life, will need to have puberty medically induced, if she can get pregnant she'll need assistance, all this stuff. So of course that's in the back of my head.
Kids, man. Thank you so much for the support and kind words.
Post by onomatopoeia on Jan 22, 2016 12:56:28 GMT -5
I'm really sorry. It sounds like you're doing all the right things. I hope you can find ways to take care of yourself as well (I know that's easier said than done). Big hugs.
Being a parent is hard. You are doing a wonderful job being an great advocate for your daughter. Asking questions, questioning the doctor is all good in my book.
Yes, we're on a cancellation list and I called this morning to see if they had any openings. They're scheduling out to May now. I did ask if the doctor could review her records and just give an opinion as to if it's okay for her to start medicine before we see him, and she suggested calling next week after the 24 hour EEG is done to ask him that. I'm not expecting a diagnosis or anything crazy from him, but I would feel a heck of a lot more comfortable letting her start medicine with another doctor giving approval. We also go next week to their pedi for their 4 year check up, so I'll mention it to them and see if they have an opinion on if I should wait for a second opinion or not.
Huge hugs to you. It sounds like you are doing everything possible to get the best care for your little girl - so you are doing everything right. This is definitely not your fault.
I'll keep you and your daughter in my thoughts and prayers.
This is absolutely not your fault. I know others have said it, too, but it bears repeating. Not. Your. Fault.
You are being a fantastic advocate for her. Trust that you will make the best decision for her. You have done your research and talked to professionals.
As for helping her through her tests, could you make a little bracelet or something and add a bead, charm, or something every time something is completed? I know lots of children's hospitals do that for kids. It seems to help them through stuff, and there's a lot of pride when they can look back at all of the times that they've been brave.
I love the bracelet idea! My aunt got them each a Build a Bear gift card for their birthdays, and I was thinking of taking them this weekend to do that.
I'll keep on top of Yale as well.
Thanks so much everyone. It's so hard to not be able to fix your kid, so it's nice to hear that I'm not missing something.
Post by redredwine on Jan 22, 2016 15:09:45 GMT -5
I'm so sorry. My husband had a grand mal seizure back in October and it was awful to witness. The scene still haunts me. The paramedics told me this: You may never know what caused it or if it will happen again. He's done a million tests and there are no answers. The tests aren't easy (the 24 hour EEG is awful) and he's 37-I can't imagine a small child going through them. I'm so so sorry you guys are going through this. You're doing everything you can- don't forget that! You are her best advocate already! You're getting her in for all tests, getting on wait lists (that are always long) but you can't blame yourself. I think the PP have some great suggestions for your daughters. Keep fighting for her and know that the doctors are doing everything they can for her, too. Sometimes there just isn't a black and white answer for these things and it's so frustrating. Hugs to you.
I know that applying eeg leads aren't pleasant, I'm sorry that you had a jerk of a tech doing your daughter's.
Because of your family history, and because it's what is being recommended, I would start the med. It may actually bring you some comfort knowing she's less likely to have another seizure while on the med?
Scary! My 5.5 yo has epilepsy because of a genetic issue. He is averaging about one or two a year. We do not medicate. Our neuro feels the side effects of the meds is worse than one or two small seizures a year.
Is this her first seizure? Has she had another? Unless the eeg shows seizure activity that you can't see I would hesitate to medicate until she has another. Sure seizure suck but there are tons of people with epilepsy who take medication and still have breakthrough seizure. Antiseizure meds are heavy duty.
I would definitely get a second appointment and hold off on meds unless the eeg shows something else or she has another seizure soon. Thankfully seizures are rarely life threatening and usually just are a sign of something else.
Hugs! They're really scary and suck to watch as a parent or grandparent.
eta: sometimes if your pedi calls the neuro they can get you in sooner
Thanks for all of this - I never considered not medicating if she has epilepsy. I was treated with meds, as was everyone in my family who has had it, so I never thought about it from that angle, but that's a great point, especially since the neurologist said that kids usually outgrow it. Why rush to medicate if they expect it to resolve on its own? Definitely something to consider, and more of a reason to hold off. I think I was also looking at medicine as a concrete solution, something tangible that I could DO, if that makes any sense. But I obviously need to do what's best for Livy rather than what puts me most at ease. I'll definitely look into this more and bring it up with the doctors that we meet with.