# Seizures - What the heck is going on?



## SarahBear

Violet just had her third seizure since January and 2nd seizure in a week. What the heck is going on? With the first one, it seemed like a fluke. She had multiple infections and was on a new antibiotic and got a high fever the next day. But then she had another short seizure last week on Friday. It only lasted 15 to 30 seconds and wasn't too intense. After the seizure, we checked her temperature and it was a bit high. Now, she just had another one a week later (Saturday). I wasn't there for it, but her Nana said it was grand mal. Her temperature was elevated (100.8), but not high enough to add up to a febrile seizure.

With the first one, she went to the ER and after the second we scheduled an appointment with her doctor. The appointment is Monday. We will be referred to a specialist, but I don't know how long that process takes.

Has anyone been in a similar position? Do you think there's a good chance this is a seizure disorder? What else could it be? It isn't looking like febrile seizures but I don't know much about seizures, so I guess that's possible?

Knowing that I'm seeing a doctor soon and am not relying on the opinions of people on the internet, what do you all think about what could be happening?


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## Zephram

That sounds really scary! I hope she's okay.

I'm not a doctor either but I thought febrile seizures were to do with how fast a temperature rises rather than the actual height of the temperature. Since she's been sick every time it's happened, it would seem the logical explanation.

I hope her appointment points you in the right direction.


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## Teri7489

Very scary for all of you. I hope you get a quick referral! 

Seizures can happens in children due to temperature but also blood sugar dropping low. Does she have any dietry issues? Any viral issues recently where she hasn't been eating great that could be the cause of it? Lots of children have episodes of seizures that simply stop happening, others have tests and it results in a diagnosis of epilepsy, which sounds scary, but can be managed. Hopefully you get her seen real soon and can get all your questions answered but someone who has all the answers x


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## BunnyN

Hope you get it sorted soon. I thought fever was only a problem when it gets really high but maybe some children are more sensitive. Or could it be a combination of issues? I think a fever can trigger epileptic fits.


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## zorak

Hi, two of my siblings have seizure disorders. One is epileptic and the other has a rare neurological condition. That being said seizures in young kids can be caused by any number of things. Blood sugar levels, viral illness, variance in temperature, dehydration etc. 

My only word of caution is always to get her seen straight away even if she seems fine after. I wouldn't wait on scheduled doctors appointments especially when you don't know the cause.


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## SarahBear

Well, her appointment was today. The doctor said the pattern is atypical for febrile seizures and she called the neurologist before we left to check on whether or not she should do any testing and to get us a referral. There was no additional testing and we'll have to travel to the specialist (3.5 hours away) sometime in the next couple weeks. No appointment has been set yet.


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## gingmg

Thinking of you and hope everything is ok!


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## AnneD

That's scary. I hope you get an appointment through soon and the specialist finds out what's causing Violet's seizures.


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## BunnyN

Hope you get your appointment soon and get some answers it must be really worrying.


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## zorak

I hope you get more answers soon. It's so worrying when you don't know what exactly is going on.


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## SarahBear

Thanks everyone. At this point, we're just continuing life as normal. I'll post updates as I have them.


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## jd83

I don't have any advice, as the only family member I have who has a seizures has epilepsy, and she was in her 40s before it was even diagnosed, so I just have no idea with Violets age beyond febrile, which they seem to have ruled out. Thoughts are with you though, I'm sure you guys are stressed waiting for answers. Hugs.


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## SarahBear

So I can't find much about febrile seizures starting around age 4, but I have found things that say "onset after 7 is unusual," which indicates that it's not that crazy for febrile seizures to start at age 4. It also says that seizure as the first sign of fever is a risk factor for repeat febrile seizures. That's consistent with our experience with Violet. We knew she had a cold the first time, but she didn't have a fever until the day after the seizure. The second time, the seizure was the first sign. Same with the third except that the fever came and went very quickly. Her temperature was normal several hours later.


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## SarahBear

I don't know if they "ruled out" febrile seizures, but there were definite questions considering the late onset and frequency. Either way, we need to see a specialist.


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## jd83

SarahBear said:


> I don't know if they "ruled out" febrile seizures, but there were definite questions considering the late onset and frequency. Either way, we need to see a specialist.

My bad, I misread that.


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## SarahBear

Well it's epilepsy. The doctor thought it was a seizure disorder and the two seizures she had recently, definitelly confirmed that. One was on the 20th right before bed and one was on the 21st, before she had a chance to eat beakfast. Neither was accompanied by a fever. We will definitelly be looking at medication.


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## lau86

:hugs: x hope you are all ok with the news


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## gingmg

How are you doing? How is violet? Glad you have some answers, sorry that they probably weren't the ones you were looking for.


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## Eleanor ace

:hugs:


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## sophxx

Glad you got some answers and now can start treatment


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## AngelUK

Oh gosh! I hope she is ok and medication will help. Thinking of you :hugs:


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## AnneD

I hope Violet is ok. You must be so stressed. Thinking of you.


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## _Meep_

Goodness, that must be a lot to take in. Hope everyone is doing ok despite the recent development. Medications can be incredibly effective these days once you find the right one, so I hope it will all be under control very soon.


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## loeylo

_Meep_ said:


> Goodness, that must be a lot to take in. Hope everyone is doing ok despite the recent development. Medications can be incredibly effective these days once you find the right one, so I hope it will all be under control very soon.

Was just going to say this. Both my parents are epileptic. My mums is an inherited form, but my dads came about after falling off a swing when he was two. My dad was medicated as a child but they thought he might grow out of it, he actually did grow out of it and lived symptom free until he was 40, when he had another seizure and he has been medicated on a low dose ever since (15 years now) and has been fine since the fit 15 years ago - he got his licence back after 12 months as well and there are no stipulations on his licence or anything. You wouldn't even know he has epilepsy, he isn't photosensitive and nothing triggers a seizure in him now.

My mum was slightly more severe in that they had to mess around with her meds at a few points in her life, the medication which works best for her wasn't recommended in pregnancy so she came off them when she was pregnant/ttc which caused some fits, but she has been on the same meds for 20 ish years and hasn't had a fit in that time, however she is pretty photosensitive and lots of things can trigger her to feel like she is going to have a seizure (the worst is being in a car on a sunny day driving through trees! Or stripy things with a high contrast) so it means that we need to be considerate when clothes shopping and my daughter can't wear her light up shoes around my mum, she can't watch to with the lights out and so on. Again, it doesn't massively interfere with her life and she has coping strategies to avoid situations like that. 

It's also worth looking out for absence seizures. A lot of people don't realise they are seizures. My mum apparently had them for years as a kid and nobody realised that they classes as a fit - she would just zone out for a few seconds. 

My mum had been involved in quite a few studies and trials.


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## SarahBear

After 2 seizures within 12 hours, my husband and I are finding ourselves on edge that it'll happen again any moment. She breathes funny or makes an odd sound or moves funny and we both jump and look over. We've made it through 36 hours without one though, so hopefully that means no more for at least a week or two. Medication will definitely provide some peace of mind, even if there is no 100%guarantee with it... Now to figure out the cost...


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## _Meep_

Oh shite, that's grim. I can't believe how quickly and intensely it suddenly seems to have come on for her - no wonder you are on tenterhooks. It must be very stressful. :(


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## SarahBear

She had a cluster of seizures today. One lasted a fraction of a second this morning. Later in the morning she had two just like it followed by one that was almost a minute long. Those last three were seconds apart.


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## _Meep_

Fuck. :nope:


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## SarahBear

I don't what this increase in frequency means. We are on vacation. Is that coincidence or relevant? Is this going to be our new normal until we get her on medication or does is it just our "right now? " Or will it get worse? I need to call the doctor to let him know about this last cluster.


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## AngelUK

I am so sorry! You must be so worried :(


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## _Meep_

It's just terrifying. I didn't know it could start so suddenly, and with such intensity. Has anything at all changed lately? Has she been on any medications or had a vaccination - anything that might have somehow triggered it? :( I hope it's just a 'for now' thing and will calm back down. Something definitely needs to be sorted out for her though, how awful for everybody. :(


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## AnneD

I'm so sorry, this is really worrying. Have you spoken to the doctor? What did he say? Hope V is ok.


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## gingmg

I'm really sorry you are dealing with this, I can't even begin to imagine how scary this must feel. Out of curiosity, has she had an MRI or CT scan or has anyone suggested one? I'd ask if it's something that hasn't come up yet. If my son started having seizures, I would want a scan before I started anti seizure medications. Thinking of you. Hope it gets under control soon.


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## loeylo

SarahBear said:


> She had a cluster of seizures today. One lasted a fraction of a second this morning. Later in the morning she had two just like it followed by one that was almost a minute long. Those last three were seconds apart.

If they were only seconds apart they would probably be classed as one seizure. 

What are her fits like? Does she twitch, go fetid, etc? My mum never twitches, she just passes out and maybe does a slight twitch but nothing major. Sometimes she comes round several times within the single seizure.

I noticed there is a further post asking about ct or MRI. If they are diagnosing epilepsy then those must already have been done. There's no way to give an official diagnosis without ruling out other causes.


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## gingmg

SarahBear said:


> I noticed there is a further post asking about ct or MRI. If they are diagnosing epilepsy then those must already have been done. There's no way to give an official diagnosis without ruling out other causes.

I guess I was just putting it out there, Sarah didn't mention any scans. She only said she met with a specialist and was given a diagnosis of epilepsy. A scan would need to have been ordered and scheduled separately from that initial specialist appointment and she didn't say anything about that. Just wanted to throw my two sense in that if there hadn't already been a scan, she should ask for one.


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## SarahBear

Oh, I guess I wasn't clear. The "diagnosis" isn't official. She has had a CT scan that came back normal and we will be getting her in for an EEG ASAP. I haven't been back to the specialist yet, but we do have a prescription to pick up. We are on vacation right now, so aren't able to get it immediately which I'm not real comfortable with. I'll be glad when we can get this sorted.


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## gingmg

I'm really sorry you are dealing with this. Glad to hear the CT scan was normal. Hope the EEG can be scheduled soon. Thinking of you.


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## AnneD

I hope you can get the medication sorted soon. I can't begin to imagine the stress and worry this is causing for all of you.


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## zorak

Oh I really feel for you all. Tbh I'm surprised she hasn't been admitted while they sort everything out. Im guessing it's the difference with it being the US.

Like another poster said watch out for absence seizures. My brother is epileptic and he will sometimes just go what looks like catatonic. I really hope you get answers soon and I also really hope you are able to be covered by insurance it must be such a nightmare.


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## superfrizbee

I'm so sorry you're going through this. It must be terrifying. Have you joined an epilepsy support group? There are some via Facebook and doubtless elsewhere. They can give you advice if you are looking for a special monitor at night to detect seizures while she sleeps, or special pillows that are anti suffocation. I don't want to scare you, I just hope you are getting the expertise and advice you need. I hope you find an effective medication quickly and you're all coping as well as you can be. How is Violet after? I hope she doesn't find them too distressing.


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## Zephram

SarahBear, that's scary, I hope she's okay! Must be a difficult time for you all, I hope you get answers.


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## calm

I have no advice or experience, but it sounds very scary, I hope you find out what is causing this as soon as possible X


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## SarahBear

Holly sh!t, when is this going to end? We were finally going to pick things up at the pharmacy and guess what, we couldn't. I figured that even with having to order things, they've had plenty of time to order and have things filled. Well turns out that since they didn't have our insurance information, they held off on ordering. So NO MEDICINE YET! The specialist is out of town, so we had them send to a pharmacy out of town. Today, I called our regular pharmacy to have the prescription transferred. Apparently the transfer can take up to 3 days (learned that when I tried transferring to a pharmacy closer to where we were on vacation) and then they have to order the damn stuff. Then there's the weekend. So are we looking at another week of this?


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## _Meep_

How absolutely useless!!! Just have to take it as it comes and hope things don't go too badly :( - but from the urgency in your post, I am guessing there hasn't been any improvement? :nope: I'd be on the floor by now. Utterly horrible situation.


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## _jellybean_

There has to be a way to get the medication. Did you call the prescribing doctor and tell him what's going on? I'd call and ask for advice. Maybe there's another medication she can start taking.
Poor girl.


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## Bevziibubble

I'm so sorry that you're going through this. I hope that you manage to get the medication soon :hugs:


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## SarahBear

OK, so for some reason when I tried to transfer to a pharmacy closer to where I was on vacation, they said it would take 3 days to transfer. When I called my regular pharmacy, it took less than a day to transfer and then the next day (today), I was told I could pick up the medication after 2:00PM. Not bad. The only stipulation was that insurance won't cover 3 diastats all at once. They'll only cover one every 30 days. That's no biggie. It's an emergency medication and the only reason to have more than one is so that there's always one available whether at home, at preschool, or away someplace in the car. The daily medication will be available.


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## AngelUK

That is a relief! I hope it will help and things will get sorted when you settle back in at home.


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## Bevziibubble

That's great news :)


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## _Meep_

Ah, really hope it helps her. :)


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## lau86

Hope things improve now she's on the meds


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## SarahBear

She's at preschool now. I updated them on the last week, gave them the diastat (emergency meds for if the seizures last too long) and now I'm at work, hoping for the best!


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## _Meep_

Fingers crossed. Been thinking of her quite a lot - this whole thread is pretty shocking really! I do hope everything improves.


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## Bevziibubble

Fingers crossed! :)


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## SarahBear

Those short ones are easy to miss, however, NO seizures were noticed today! It's possible there were a couple short ones that no one noticed, but either way it's VASTLY reduced from how it's been these last bunch of days. This seems promising.


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## Palpouch

I hope you get it sorted! Just a thought, I used to have seizures and was diagnosed with reflex anoxic seizures... there is a great charity called STARS for these types of seizures. Their website will give you the symptoms, it's more common in children and usually grow out of it.


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## SarahBear

Well, she was seizure free since starting the medication until yesterday. She had... 4 seizures? I honestly can't remember if it was 4 or 5... Pretty sure it was 4. They were grand mal and lasted 30-45 seconds and she slept most of the day because of them. The doctor told us to up her medication dose and I don't know if it's a side effect of the medication, a result of all those seizures and sleep, or both, but this morning she was a bit manic. She was impulsive, over-energetic, and in your face. I wanted to keep her home from preschool because of the high risk of multiple seizures today, but my husband wanted to send her. We'll see how it goes... It's 9:28 and she starts preschool at 8:30. I haven't received any text updates, so I suppose it's going OK...


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## AngelUK

I hope the increase in meds helps and that being that manic is not something that will be a constant. 
Is she going to have any more tests done, such as an MRI? Or is it superfluous at this point?


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## SarahBear

She's going to have an EEG and a follow-up appointment with the neurologist in about a month. Scheduling is a nightmare and we live 3 and a half hours from the specialist, so we couldn't get in sooner. Wish we could! Medication increases are being done based on me calling the neurologist when they happen and the office calling me back after the neurologist has a chance to receive my messages. She had a CT scan after her first seizure, but an MRI hasn't been mentioned.


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## Zephram

Poor Violet, how is she coping with it?

Did you notice any triggers yesterday? Or anything that was different yesterday that may have triggered the seizures?


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## SarahBear

It doesn't seem like there was a particular trigger yesterday but being somewhat sick and/or allergies could have been a contributing factor. In general though, it just seems like her epilepsy is getting progressively worse. Hopefully we can find the right medication balance soon.


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## AnneD

Poor Violet, I hope she's not too scared or poorly! You must be beyond worried. Thinking of you all.


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## jd83

superfrizbee said:


> I'm so sorry you're going through this. It must be terrifying. Have you joined an epilepsy support group? There are some via Facebook and doubtless elsewhere. *They can give you advice if you are looking for a special monitor at night to detect seizures while she sleeps, or special pillows that are anti suffocation*. I don't want to scare you, I just hope you are getting the expertise and advice you need. I hope you find an effective medication quickly and you're all coping as well as you can be. How is Violet after? I hope she doesn't find them too distressing.

One of my friends in South Carolina has a child who has pretty bad seizures, and they have a night monitor thing like this, too. It's definitely worth looking into, especially given the rapid increase in seizures.

Sorry Sarah:( I'm shocked how quickly this has progressed with her. That must be so scary:(


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## Gym knickers

So sorry to read that violet is so unwell. I hope you manage to get things under control soon, you must all be so worried.


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## SarahBear

So with tomorrow being Wednesday, Violet has gone nearly a week without a seizure. The part that scares me is that it keeps getting worse. They tried scheduling her EEG sooner, but we have to travel to get there, so I declined the earlier EEG. We'll be going on the first for both the EEG and general follow-up with the doctor.


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## SarahBear

And she had two seizures this morning and slept most of the morning as a result and also missed preschool. Tomorrow her class is going on a field trip to the lambing barn. I didn't want her to miss it, but am also concerned about her having a seizure at the lambing barn. I took half a day off so I could go with her. Hopefully we don't see any more seizures for a while, but I'm not feeling optimistic since things seem to be generally getting worse.


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## Bevziibubble

I'm sorry Violet has had two seizures :(
I hope that the field trip goes well.


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## AngelUK

Oh no! I am so sorry! I hope the trip goes ok without seizures!


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## _Meep_

Oh goodness. It must feel so disheartening. :(


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## calm

Your anxiety levels must be through the roof. I am glad Violet was still able to go the field trip X


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## zorak

I'm sorry things are really progressing. I can't help but be surprised though at how slow the medical response has been. I'm pretty sure over here the child would be immediately hospitalised for further investigations. My brother started his epilepsy journey at 16,he had one fit and was immediately put in hospital. They wanted to observe, test and stimulate his seizures so that they could determine the correct course of action. 

It seems a tremendous burden to put on you as a parent to monitor things and I would not be comfortable with that at all. When M was having his initial problems with asthma we were never away from the docs /hospital. I never wanted to have to make medical judgements, that's for the professionals.


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## _jellybean_

I'm so sorry:(


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## loeylo

zorak said:


> I'm sorry things are really progressing. I can't help but be surprised though at how slow the medical response has been. I'm pretty sure over here the child would be immediately hospitalised for further investigations. My brother started his epilepsy journey at 16,he had one fit and was immediately put in hospital. They wanted to observe, test and stimulate his seizures so that they could determine the correct course of action.
> 
> It seems a tremendous burden to put on you as a parent to monitor things and I would not be comfortable with that at all. When M was having his initial problems with asthma we were never away from the docs /hospital. I never wanted to have to make medical judgements, that's for the professionals.

Even in the 60s and 70s, this was standard protocol for epilepsy. I'm finding the whole thing a bit odd (on the medical professionals side of things) - I would definitely have moved heaven and earth to get the earlier assessment. Personally I'd take her to the nearest emergency unit and refuse to leave until it is investigated fully. I also wouldn't be comfortable putting her on the medication until all tests are completed. Personally, id be more worried that there may be something more serious than just epilepsy going on, but I guess that is just because in my family epilepsy isn't much of a big deal as it is so well managed in all our family members.


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## zorak

loeylo said:


> zorak said:
> 
> 
> I'm sorry things are really progressing. I can't help but be surprised though at how slow the medical response has been. I'm pretty sure over here the child would be immediately hospitalised for further investigations. My brother started his epilepsy journey at 16,he had one fit and was immediately put in hospital. They wanted to observe, test and stimulate his seizures so that they could determine the correct course of action.
> 
> It seems a tremendous burden to put on you as a parent to monitor things and I would not be comfortable with that at all. When M was having his initial problems with asthma we were never away from the docs /hospital. I never wanted to have to make medical judgements, that's for the professionals.
> 
> Even in the 60s and 70s, this was standard protocol for epilepsy. I'm finding the whole thing a bit odd (on the medical professionals side of things) - I would definitely have moved heaven and earth to get the earlier assessment. Personally I'd take her to the nearest emergency unit and refuse to leave until it is investigated fully. I also wouldn't be comfortable putting her on the medication until all tests are completed. Personally, id be more worried that there may be something more serious than just epilepsy going on, but I guess that is just because in my family epilepsy isn't much of a big deal as it is so well managed in all our family members.Click to expand...

This is exactly what I'm thinking. Seizures can be because of a huge number of reasons and epilepsy meds are normally pretty strong stuff to be taking. Also no one seems to be assessing if these episodes are causing any harm. As mentioned previously my brother is epileptic, my sister also had a serious neurological illness as a teen. I was with her when it all first mildly started I took her straight to a and e, they suspected epilepsy and she was immediately transferred to a neurology ward for assessment. They correctly didn't take any chances and it was lucky they did because she deteriorated within hours.


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## loeylo

zorak said:


> loeylo said:
> 
> 
> 
> 
> 
> zorak said:
> 
> 
> I'm sorry things are really progressing. I can't help but be surprised though at how slow the medical response has been. I'm pretty sure over here the child would be immediately hospitalised for further investigations. My brother started his epilepsy journey at 16,he had one fit and was immediately put in hospital. They wanted to observe, test and stimulate his seizures so that they could determine the correct course of action.
> 
> It seems a tremendous burden to put on you as a parent to monitor things and I would not be comfortable with that at all. When M was having his initial problems with asthma we were never away from the docs /hospital. I never wanted to have to make medical judgements, that's for the professionals.
> 
> Even in the 60s and 70s, this was standard protocol for epilepsy. I'm finding the whole thing a bit odd (on the medical professionals side of things) - I would definitely have moved heaven and earth to get the earlier assessment. Personally I'd take her to the nearest emergency unit and refuse to leave until it is investigated fully. I also wouldn't be comfortable putting her on the medication until all tests are completed. Personally, id be more worried that there may be something more serious than just epilepsy going on, but I guess that is just because in my family epilepsy isn't much of a big deal as it is so well managed in all our family members.Click to expand...
> 
> This is exactly what I'm thinking. Seizures can be because of a huge number of reasons and epilepsy meds are normally pretty strong stuff to be taking. Also no one seems to be assessing if these episodes are causing any harm. As mentioned previously my brother is epileptic, my sister also had a serious neurological illness as a teen. I was with her when it all first mildly started I took her straight to a and e, they suspected epilepsy and she was immediately transferred to a neurology ward for assessment. They correctly didn't take any chances and it was lucky they did because she deteriorated within hours.Click to expand...

I think I previously mentioned my dad has epilepsy which was brought on by being hit on the back of the head by a swing when he was a toddler, he did grow out of it but then had a random fit when he was 40, which included him choking on his own tongue and nearly dying. He was admitted to hospital by ambulance, had an MRI, a ct and a few other procedures (I believe maybe a lumbar puncture and an ecg but I was only 12 at the time) and they actually thought that it could have been a brain tumour due to how he suddenly developed the seizure after being clear of them for over 30 years. Many more serious conditions can manifest with fits, and without immediate and comprehensive tests they cannot rule out the more serious conditions. Epilepsy medication is also hit-and-miss, my mum has lasting effects from medication which she had as a child. It is a very delicate dosing process and it may be required to change medications several times before finding one which "works" best. Like I say, my dad has never had a fit in 16 years, my mum hasn't had a fit in 20+ years, but they know their triggers well and for the most part can avoid them (my mum has more triggers than my dad but fairgrounds are pretty much a no go for both of them as they both had fits after fairgrounds!)


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## SarahBear

She's had a CT scan which showed no abnormalities or damage to the brain and her blood sugar has been taken so we know it's not diabetes. There are a number of conditions that have already been ruled out based on information we already have. As for going for the earlier assessment, I asked if it was medically indicated or not and was told it was fine to wait. I don't live right next to a specialist. I need to take time off work and make over-night trips. Besides, it's not a diagnostic test. It's just another piece of information that may or may not help. I was told that the more important information was whether or not she had further seizures and what they looked like. I'm not sure how taking her to the nearest ER and refusing to leave would do any good - the specialists are over 3 hours away and the "closest ER" doesn't have her full information. On top of that, the specialists are booked! It's hard to get in. Getting seizures under control can be a slow process as the first medication tried isn't always the right one and of course you're started on a lower dose which may not be the correct dose. She's also on one of the safer ones. I don't know how much room there is for dose increase or if we'll need to switch to a different drug, but it will be a process to figure it out. Don't know what to tell you about admitting her to the hospital for observation, but here's hoping it can be figured out without a hospital stay. Observation has not been mentioned.


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## _Meep_

The poor little girl, I hope that the seizures aren't scaring her too much. It sounds like you are doing the best you can with the situation you are in. Difficult that you live so far away from help. :(


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## SarahBear

_Meep_ said:


> The poor little girl, I hope that the seizures aren't scaring her too much. It sounds like you are doing the best you can with the situation you are in. Difficult that you live so far away from help. :(

I don't think they're scaring her as much as you'd expect. Sometimes after a grand mal seizure, she seems somewhat freaked out, but the next day we have to explain to her what happened and she doesn't seem to remember anything scary happening. Last week it was like Wednesday didn't even happen for her. Thank you, I am doing my best with what I've got. Sure I could be driving back and forth more, but it doesn't seem like she'd gain any benefit from it, so I'm instead being patient. I'm also calling the neurologist to update every time there's seizure activity or a change. So, he's getting all the necessary details and is able to make medical judgements from it. Today, I actually called again. I took her to her field trip and she enjoyed it, but I think she was also having those short seizures that last a fraction of a second. When they started a couple weeks ago (medicine made them stop until recently) she was having them multiple times a day. Most of the time she just bounces right back from them and if you're not watching her, it can be hard to tell if she's had one or if she just fell. There was one or two today where I was looking directly at her and she was just standing and fell on her bottom for no apparent reason. She's been falling more lately and it isn't always clear what's a seizure and what's not, but what's clear is that they're returning.


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## _Meep_

Gawd. I'd be so upset and worried by now that I don't think I'd be functioning at all as a parent. I am sure you are upset/worried, but what I'm trying to say is I respect how you are carrying on and remaining patient with the crappy situation. That will be so beneficial for her. For both the children.

I agree, driving back and forth isn't really going to change anything, but I hope a solution can be found as soon as possible so everyone can move on. It sounds dreadful.

I'm glad she enjoyed her trip though.


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## Zephram

_Meep_ said:


> Gawd. I'd be so upset and worried by now that I don't think I'd be functioning at all as a parent. I am sure you are upset/worried, but what I'm trying to say is I respect how you are carrying on and remaining patient with the crappy situation. That will be so beneficial for her. For both the children.
> 
> I agree, driving back and forth isn't really going to change anything, but I hope a solution can be found as soon as possible so everyone can move on. It sounds dreadful.
> 
> I'm glad she enjoyed her trip though.

I agree, I'm very impressed with how calm you seem. I'd be a total wreck by now and would probably be hanging out at the specialist's office until the saw my LO!

I really hope you get answers and get her seizure's under control, thinking of you.


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## loeylo

SarahBear said:


> She's had a CT scan which showed no abnormalities or damage to the brain and her blood sugar has been taken so we know it's not diabetes. There are a number of conditions that have already been ruled out based on information we already have. As for going for the earlier assessment, I asked if it was medically indicated or not and was told it was fine to wait. I don't live right next to a specialist. I need to take time off work and make over-night trips. Besides, it's not a diagnostic test. It's just another piece of information that may or may not help. I was told that the more important information was whether or not she had further seizures and what they looked like. I'm not sure how taking her to the nearest ER and refusing to leave would do any good - the specialists are over 3 hours away and the "closest ER" doesn't have her full information. On top of that, the specialists are booked! It's hard to get in. Getting seizures under control can be a slow process as the first medication tried isn't always the right one and of course you're started on a lower dose which may not be the correct dose. She's also on one of the safer ones. I don't know how much room there is for dose increase or if we'll need to switch to a different drug, but it will be a process to figure it out. Don't know what to tell you about admitting her to the hospital for observation, but here's hoping it can be figured out without a hospital stay. Observation has not been mentioned.

Isn't there such a thing as medical records where you are? Here, if we go to any hospital our medical records will be there. 

Personally, if there is something that may help my child, I'd do it, but I naturally err on the side of caution. As I mentioned, I wouldn't be worried about things like epilepsy and diabetes, I'd be more worried about brain tumours and suchlike - not to scare you, but those are much more likely to show on MRI scans than ct scans, which predominantly focus on bone structures. 

Right now I'm so grateful for the NHS as quite honestly this terrifies me ...


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## lau86

There's a lot of scare mongering going on here! Sarah's doctor may have things totally in control, unless you're a paediatrician it's hard to know what to do. Good luck Sarah and I hope they can get get things under control
As for those saying go to a&e/ ER, this is not how you get investigations done. This is a horrid situation but it's not an accident or emergency and I think Sarah is being very sensible


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## SarahBear

lau86 said:


> There's a lot of scare mongering going on here! Sarah's doctor may have things totally in control, unless you're a paediatrician it's hard to know what to do. Good luck Sarah and I hope they can get get things under control
> As for those saying go to a&e/ ER, this is not how you get investigations done. This is a horrid situation but it's not an accident or emergency and I think Sarah is being very sensible

Thank you.


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## _Meep_

^ Have to agree with lau86 on this one ...


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## zorak

loeylo said:


> SarahBear said:
> 
> 
> She's had a CT scan which showed no abnormalities or damage to the brain and her blood sugar has been taken so we know it's not diabetes. There are a number of conditions that have already been ruled out based on information we already have. As for going for the earlier assessment, I asked if it was medically indicated or not and was told it was fine to wait. I don't live right next to a specialist. I need to take time off work and make over-night trips. Besides, it's not a diagnostic test. It's just another piece of information that may or may not help. I was told that the more important information was whether or not she had further seizures and what they looked like. I'm not sure how taking her to the nearest ER and refusing to leave would do any good - the specialists are over 3 hours away and the "closest ER" doesn't have her full information. On top of that, the specialists are booked! It's hard to get in. Getting seizures under control can be a slow process as the first medication tried isn't always the right one and of course you're started on a lower dose which may not be the correct dose. She's also on one of the safer ones. I don't know how much room there is for dose increase or if we'll need to switch to a different drug, but it will be a process to figure it out. Don't know what to tell you about admitting her to the hospital for observation, but here's hoping it can be figured out without a hospital stay. Observation has not been mentioned.
> 
> Isn't there such a thing as medical records where you are? Here, if we go to any hospital our medical records will be there.
> 
> Personally, if there is something that may help my child, I'd do it, but I naturally err on the side of caution. As I mentioned, I wouldn't be worried about things like epilepsy and diabetes, I'd be more worried about brain tumours and suchlike - not to scare you, but those are much more likely to show on MRI scans than ct scans, which predominantly focus on bone structures.
> 
> Right now I'm so grateful for the NHS as quite honestly this terrifies me ...Click to expand...

The US works very differently there is no national network of hospitals they are operated by numerous different entities so less file sharing goes on. That applies to doctors too and is partly why it can be difficult to get in to see specialists. Then obviously depending on insurance there is the cost element too. 

Re. The a and e /er comment, sorry but a child constantly having seizures is absolutely an emergency. It's not a situation I'd be happy with at all. That being said I wouldn't bother with an American ER either, much better to stick to your own network of doctors /hospitals that actually have your records. But I'd want the child in at a specialist extremely quickly with more constant monitoring.


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## _Meep_

But it's not our child. I don't see how people giving their opinions on what they would do in a situation (that they are not actually going through right now) is going to achieve anything other than making the one who is living it feel criticised on top of everything else.

It's clear she's absolutely 100% behind sorting this out for her child and is doing an admirable job of remaining stoic while many others would - understandably, but not at all beneficially - be panicking and potentially making things even more stressful on the child.

It's certainly not a lack of concern or caring that I am seeing, if that's what others may be picking up here. I just see a rational person carefully weighing up the practicalities of various given routes and choosing what's going to work best for her family. It might not be what we would do ourselves, but it's certainly not our place to say so.


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## zorak

_Meep_ said:


> But it's not our child. I don't see how people giving their opinions on what they would do in a situation (that they are not actually going through right now) is going to achieve anything other than making the one who is living it feel criticised on top of everything else.
> 
> It's clear she's absolutely 100% behind sorting this out for her child and is doing an admirable job of remaining stoic while many others would - understandably, but not at all beneficially - be panicking and potentially making things even more stressful on the child.
> 
> It's certainly not a lack of concern or caring that I am seeing, if that's what others may be picking up here. I just see a rational person carefully weighing up the practicalities of various given routes and choosing what's going to work best for her family. It might not be what we would do ourselves, but it's certainly not our place to say so.

You are right it's not our child. To be clear I wanted to explain the differences with the US system (I've lived there and dealt with it first hand). It's not in any way a criticism of Sarah, I've already said that I would not bother with an ER, it'd be a waste of time. I guess my frustration is with the system, Violet needs to see a specialist and the length of time between available appointments would be a concern for me. That's not because I'm a panicker but because I have a family history of both epilepsy and neurological illness and I know how long it can take to find the right treatment path and diagnosis.


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## redneckhippy

Yes, unfortunately in the US our systems are not coordinated at all (that's cool that yours are in the UK though, I didn't know that). Even when you WANT to coordinate with your various doctors, the burden is often on the patient to track down and provide records from office to office. Most ER's here just "treat and street," meaning they will make sure you aren't dying right that moment then send you home.


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## zorak

redneckhippy said:


> Yes, unfortunately in the US our systems are not coordinated at all (that's cool that yours are in the UK though, I didn't know that). Even when you WANT to coordinate with your various doctors, the burden is often on the patient to track down and provide records from office to office. Most ER's here just "treat and street," meaning they will make sure you aren't dying right that moment then send you home.

Exactly, which is such a problem when issues are chronic and serious.


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## catty

Sorry to hear about Violet what a scary time for you all!! 
I agree with some others i feel its been made out as if she isnt doing enough when obviously its a completely different system over there. 
I have a hospital a 5 minute drive from my house and yes i probably would take my son/daughter there often if they were having seizures especially with it getting more regular very quickly. However, i wouldnt drive 4 hours with my 3 kids everytime it happened though and especially if when i turned up noone had a clue and i pretty much just had to come home again. 

Hopefully you will get answers at your next appointment!


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## SarahBear

I haven't read every comment by wanted to give an update. Things did escalate to warranting a visit to the ER on Saturday night. We were transferred via ambulance to a hospital 3 hours from home. They did an MRI, blood work, took a urine sample, did an EEG that lasted about 20 hours, took a chest X-ray, and probably other things I can't remember. She had some good moments but overall things kept getting worse despite the medication changes they made and testing all came out clear except the EEG which showed myoclonic and tonic clonic seizures which are ver,y scary together because of the class of seizure disorders characterized by that combination. We were transferred to Dorbecker's Children's Hospital in Portland Oregon because they were looking at a spinal tap for diagnostics and an induced coma to get the seizures to stop and give the body a chance to "reset." Well things started to improve before either of those things happened and the doctors decided that a spinal tap wouldn't gain useful info, so neither happened. On Thursday she was moved out of the pediatric intensive care unit and then that evening she was released from the hospital altogether. She is continuing to have myoclonic atonic seizures, but they don't warrant hospitalization. We have a working diagnosis that looks scary if you look at Wikipedia, but the doctor said that in his 40 year practice, he has only seen positive outcomes. So we have a new medication she's taking and will eventually look at weening off the original medication. We'll also be following up with her neurologist in a couple week and continue monitoring her seizures and finding the right dose. It will be weeks before we hear back on some of the testing that had to be sent out of state.


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## loeylo

Sorry that things got worse, that sounds terrifying. Glad she has had more exhaustive tests and a more firm diagnosis and hopefully the new medication works. What medication is she on now? What is her diagnosis?


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## zorak

Gosh I'm so sorry that sounds really scary. I'm glad she avoided a spinal tap, that's horrific for young kids.

Have they given you an action plan in the event of similar happening again?


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## AngelUK

goodness me, how scary! I am so sorry for Violet and your whole family! I hope they can soon find the right thing to help her!


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## biglebowski

Im so very sorry to read about this. It must be unbelievably scary for all concerned. Im glad at least that an extensive list of tests have been done. Awful that Violet's health had to deteriorate so much for it to happen though. The tests make diagnosis and treatment more likely. My thoughts and well wishes to you and your family xx


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## gingmg

Glad you have some answers, sorry it has gotten worse in order to get those answers though. Can't imagine what this has been like for you and your daughter. Hope the new medication plan kicks in soon. Thinking of you.


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## _Meep_

Shite. I really hope everything turns out ok!! Please come back often to talk to us. I know we're probably not much help as we can't physically stop whatever is happening from happening, but we are all thinking of your family and hoping things get better! :(


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## SarahBear

She's on Depakote which is pretty heavy duty, but apparently the best option for this disorder. The working diagnosis is Doose Syndrome. Don't look at Wikipedia if you google it though! Wikipedia makes it sound REALLY scary as they use REALLY bad sources of information. Prognosis is good if we continue the Depakote, follow up with the doctor, and find the right medication level... also assuming the working diagnosis is the CORRECT diagnosis as the term "working diagnosis" implies that it hasn't been confirmed.

Also, she's doing well enough that I'll be sending her to preschool next week. However, things are rocky enough that my mom will be going with her and staying with her the whole time until we're confident that she'll be OK to go without an "escort."

Edit: Although I caution against accepting the working diagnosis as the actual diagnosis until further confirmation, she IS having a seizure type that is specific to that disorder, so chances of the diagnosis changing seem low.


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## Bevziibubble

I'm so sorry you're going through this. That sounds scary. I hope that things improve soon. Thinking of you and Violet :hugs:


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## calm

I am glad that you have a working diagnosis, it all sounds so scary though, I can't imagine what you are all going through with this. Its good that you are allowed to have your mum there at preschool, I don't think we would have that option here in Spain which would mean that she would have to be kept from school which is a pity. I hope Violet continues to do well with the new medication and that this gets itself sorted :hugs:


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## _jellybean_

Hi Sarah. Just wanted to check in and see how you're doing and how your lo is doing.


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## SarahBear

_jellybean_ said:


> Hi Sarah. Just wanted to check in and see how you're doing and how your lo is doing.

She does better each day. This morning seemed pretty much normal. My mom took her to preschool and I haven't heard anything about how it went, so it must have gone well (still at work). If things stay this way, then it will be great. Unfortunately, this is a very unpredictable condition and I don't know if the medication will stop working at some point. We have a follow-up appointment with the neurologist on the 1st. I'll be asking questions about the chances that the medication will stop working as well as asking questions about treatments such as the Ketogenic diet and CBD's (cannabis product) as these might be the next things we try if medications fail.


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## SarahBear

Well apparently preschool was a bit crazy today. Apparently all the kids were high energy. On top of that, Violet is experiencing some behavioral side effects... not sure if they're from the medication, the seizures, the traumatic experience of the hospital, all three, or something else... Anyway, she was fairly "manic." She had frantic type energy, was in kids faces a lot, and super high energy. This is based on what my mom said. My mom also said she saw various "neurological" type stuff including an increase in seizures (the seizures are each a fraction of a second, so not too much impact). So, a little rockier than the day before, but still OK. No verbal or motor difficulties as far as I'm aware. The other issue is that when she was in the hospital, she didn't have the coordination to get to the toilet on time, so we put her in diapers. She would try to get to the toilet, but it just didn't happen most of the time. When out of the hospital, she wanted to get out of diapers. When she was reliably able to get to the toilet, we let her back in underwear. Well, not long after, she started peeing. At first I thought it may have been associated with a seizure, but then pretty quickly it became apparent that most of the time it's behavioral. Today I had her go to preschool in underwear and told her that you have to use the toilet at preschool. At preschool, she had one accident and one use of the toilet. At home she continued to have a bunch of "accidents." After an "accident," she calls out for help and says she doesn't want to take care of whatever piece it is she's asking for help on. Since she's regained the skills necessary, I've been having her take care of changing herself and taking her own clothes to the laundry. I also make her do most of the clean up. This evening I even had her help do the laundry. Hopefully she decides that using the toilet again is easier than changing, cleaning, and doing laundry.


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## SarahBear

I'm really pissed at her neurologist. First of all, back in the middle of March when we were describing Myoclonic atonic seizures, he should have recognized it as a sign of a more serious form of epilepsy. His office did try to schedule an earlier EEG and I asked if it was medically indicated. They said it was fine to wait... Now that I know what her condition is, they should have said "No, you really should bring her in." I would have done that! I said that I'd make it work if it was medically indicated. Then in the hospital, he was trying to rule out pneumonia. She had a lingering cough, but her lungs were clear prior to the seizure and she just had a bit of a cough following her seizures. She had no other signs of illness. I think he wanted to do something else to rule out infection even though no one was concerned about infection. She had a chest xray for nothing. Now I'm not getting any guidance on weaning her off a medication that isn't working and the other doctors were saying she would be weaned off of. He wants to wait until Monday... a whole week after I tried contacting him about reducing it. This was after another doctor guided me through reducing it over the weekend. We saw SO MUCH improvement with reducing the dose and I want to get rid of it altogether. I'm switching neurologists and I've already called the place where she was last hospitalized (was in two hospitals) to ask for further guidance on weaning her off. She still has her appointment Monday, but it should be her last with that doctor.


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## loeylo

SarahBear said:


> I'm really pissed at her neurologist. First of all, back in the middle of March when we were describing Myoclonic atonic seizures, he should have recognized it as a sign of a more serious form of epilepsy. His office did try to schedule an earlier EEG and I asked if it was medically indicated. They said it was fine to wait... Now that I know what her condition is, they should have said "No, you really should bring her in." I would have done that! I said that I'd make it work if it was medically indicated. Then in the hospital, he was trying to rule out pneumonia. She had a lingering cough, but her lungs were clear prior to the seizure and she just had a bit of a cough following her seizures. She had no other signs of illness. I think he wanted to do something else to rule out infection even though no one was concerned about infection. She had a chest xray for nothing. Now I'm not getting any guidance on weaning her off a medication that isn't working and the other doctors were saying she would be weaned off of. He wants to wait until Monday... a whole week after I tried contacting him about reducing it. This was after another doctor guided me through reducing it over the weekend. We saw SO MUCH improvement with reducing the dose and I want to get rid of it altogether. I'm switching neurologists and I've already called the place where she was last hospitalized (was in two hospitals) to ask for further guidance on weaning her off. She still has her appointment Monday, but it should be her last with that doctor.

This was what I meant by my previous comments. I really don't think her case was handled well whatsoever and it was not my experience of dealing with neurological problems (as I said earlier my mums consultant is one of the best consultants in the UK)


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## SarahBear

I think I did the right thing with the information I was given. The trouble is, I was given crap information.


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## _Meep_

I don't think you could have done much more with said crap information. We have to trust in what we are told by people more experienced than ourselves (unfortunately, in this case, you were told the wrong thing). At least you know better now and can formulate a new plan of action. What a shit neurologist. :nope:


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## loeylo

SarahBear said:


> I think I did the right thing with the information I was given. The trouble is, I was given crap information.

I didn't mean you did the wrong thing, we should all be able to trust health professionals. What I mean is I think the course of action you were given was inadequate. I wasn't questioning you, I was just stating that our experience of undiagnosed seizures was treated very differently.


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## jd83

I'd be pretty ticked with her current neurologist, as well. The frequency and severity of the seizures she has been experiencing seemed very progressive/aggressive to me. For them to say it was okay to wait, and have you trusting in their judgment as medical professionals, and then she has a rapid decline is just extremely frustrating. It could have potentially been avoided if they had just advised her to get these tests sooner to get the proper medications. I think you did the best you could with the information they gave you. Hopefully switching to a new neurologist will be much more helpful for her, and get her the proper care she needs for this.


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## BunnyN

I think occasionally pulmonary embolism causes seizures so maybe the xray was to rule that out? Seeing as she had a cough too it may not have been unreasonable to be cautious. Seisures can sometimes cause fluid to gather in the lungs and cause infection too. It does seem like you haven't had great follow up with the medication which seems like you should have.

The behaviour/ toilet issues sound pretty standard for the situation and her personality type. Our girl is super sweet and good natured but is wound up really easily. Anything that puts her routine out, even going on holiday or anything emotional or stressful going on makes her totally wound up. Sometimes it doesn't seem like its bothering her at all at the time but then after she is really hyper and in your face. When her brother was born she hadnt pooed in her diaper for close to a year and only had mostly stopped using one. She suddenly started having lots of accidents and pooing in her nappy again. She adored her new brother and seemed to be fine about it all but obviously the change/stress of it all got to her on some level. It stopped again after a few weeks. She still wets the bed if she is stressed sometimes. 

I would try and be as calm as possible out of the accidents. Tell her its okay and its normal that it happens sometimes and try not to talk to others about it in front of her. That way it wont be adding to much extra stress.


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## zorak

I think the neurologist has been pretty shocking but that won't help you now unfortunately. 

Re. The behaviour change, I think it's something you are going to have to be really careful with. Like you say some of it could be the meds, the seizures or acting out because of everything that has happened. My sisters illness has had a marked affect on her behaviour. She was a young teenager when it happened and it was like someone switched her personality. Suddenly she was a very angry wee girl prone to violent outbursts. Things did improve over time but even now as an adult we still see the effects. She has extreme night terrors and if she's angry she gets what I can only describe as extreme pmt. Things are more noticeable if she's at all poorly. 

So my best advice is take each day as it comes but you may want to consider talking to a professional about the behaviour side of things so that both you and Violet can learn what to do.


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## SarahBear

Oh, the accidents are resolved. I started by just having her use diapers. Then I told her she needed to use the toilet at preschool and put her back in underwear. When she had an "accident" at home, I had her clean it up and I didn't help her change her clothes at all. I even had her help me do the laundry. I think what worked was basically just holding her responsible once I saw she was capable as well as being back at preschool. It worked when she was 2 almost 3 and it worked at 4. Life is pretty much back to normal and so is her toileting.


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## SarahBear

Yesterdays appointment confirmed my discomfort with this doctor. I scheduled a follow-up appointment before leaving, but today I canceled it and scheduled at Oregon Health and Sciences University. He appointment is in July, so I'll update you on the doctor then!


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## _jellybean_

Just checking in. how is she doing? How are you doing?


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## SarahBear

Violet has continued to be seizure free. Recently though, she's having nausea issues. She also developed a cough last weekend and had a bit of chest congestion yesterday. She had a little trouble breathing, but after I told her to try to cough it out, she improved. She's even better today. I'm teetering on whether or not to get her next doctor's appointment moved up. She has an appointment with her regular practitioner scheduled next month just to check in since so much has happened since her last routine appointment.


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