Need Seizure Info - Please Help!!

[susiestar]

First off, thanks to all who answer this and/or keep good thoughts for Jess. She is really getting down about the shaking/tremor/seizure/whatever it is.

Does anyone know if a person is ever able to speak clearly and rationally during a seizure?

Are there medications like valium or ativan or something that can stop a seizure while it is going on?

Jessie started shaking about 2:!0 this morning. She was curled up with me because she hurt so badly.

It is now 5:55 and she is STILL shaking uncontrollably. She can suppress is for about 15-20 seconds (timed with-o her knowledge) about 1-2 times per hour. She keeps trying this to see if it will make it stop hurting. It doesn't help.

Her muscles are a mess. The neuros still haven't agreed to see her. The pediatrician refused to tell me the results of the video EEG.

I am scared, worried sick, and growing incredibly irate. I DID call the doctor about an hour and a half ago. ALL they would say is maybe she should go to the ER. Our ER is not somewhere she is going, for reasons too numerous to mention.

If anyone can answer the questions I would appreciate it. As sad as it sounds, it will give me something specific to suggest to the pediatrician when we see them later today or the pediatric ER doctor if we go there Sunday. Given our doctor's hesitance to do anything at all, we are wondering if the 80 mile trip to the pediatric ER is worthwhile.

 

[slsh]

Susie- yes, there are medications that can stop a seizure. I keep a vial of Diastat (diazepam) in Boo's backpack at all times. It's a rectal gel that we give as soon as he starts seizing. We also call 911 immediately because he has a history of very prolonged seizures. Once in the ER, if he's still seizing they hit him with IV Ativan. That has usually taken care of it, though sometimes they have to hit him more than once.

Can't help with- the speech thing - Boo's pretty much nonverbal anyway. I think it also depends on the type of seizure. For him, if he's not alert and aware (even if the tonic/clonic movements have stopped), we know that he's still seizing - though I've had to educate more than a few ER docs on that.

Four hours of this is, in my humble opinion, absolutely worth the 80-mile trip to the pediatrician ER. Poor Jess. I hope she feels better soon.

 

[Marcie Mac]

Susie, in my experience with ER's with my SO, there is a distinct difference of care depending if you take them in vrs an ambulance taking them in. I will bet a dollar to donuts if you drive her 80 miles, and she is not having the problem when you get there, it will be a wasted trip because its now just a description of what happened instead of an event happening. been there done that too many times. You really need to call an ambulance because the paramedics, as irritating as they can be sometimes, are the important third party in the ER. From what I have observed with SO, there is NO control of them, every once in a while the muscles would relax, but a few seconds later seize up again.

When SO was having really bad muscle seizures - a few times when we went in it turned out he had NO potassium in his system for some reason. And a muscle seizure will affect your lungs and put stress on your heart, and causes oxygen loss because both of these are muscles as well so I don't think it is wise just to be watching her for hours when this is happening.

As far as the seizure question, I it depends on what kind of seizures you are having. I have absence seizures where I zone out for a few seconds - most times I am aware I was having a conversation, can hear and understand, when the seizure is over will go back to talking like nothing has hapened, but there are times when I have not been able to do that, and have to ask SO what we were talking about, but whichever, cannot respond in the middle of one. I had them a lot during times of stress with SO's health and difficult child's gfgness, but now I just have a lot of them with no apparent stress, so doctor does not want me to drive till I have an eeg done.

Marcie

 

[gcvmom]

I'm so sorry she is going through such painful and frightening symptoms!

I don't believe you can "supress" any type of seizure. Some seizures do not involve a loss of consciousness, so you can talk. Others totally lock the brain and you cannot do anything except ride it out.

Also, it almost sounds like the tremors she's having are metabolically induced... but I'm not doctor.

Also, have you tried video taping her during one of these episodes? Perhaps that would help the doctors see what's going on if she's not having symptoms when she finally gets in to see them...

I hope you get some answers soon for her. I can appreciate the helplessness you must feel...

(((Hugs)))

 

[ThreeShadows]

Is she reporting any unusual tastes and smells?

 

[Stella Johnson]

Susi,

How is she doing now? Any updates?

It really doesn't sound like seizures to me. I know you mentioned the other day that she comes to get you when it's happening. I've never seen someone able to verbalize and walk to get help while in the middle of any kind of seizure. It sounds like a neuro thing whatever it is.

I'm sure you know I have RSD in my left arm/hand. Sometimes when the pain is really high my muscles in my left arm will tense and release rapidly and it will shake uncontrollably, not wildly but it is visible.

Why is the pediatrician refusing to give the results of the EEG? Was it performed at a hospital? If so, order copies of your records. Or order copies of your records from that doctor's office. If he is refusing to give info on a test you paid for I'd find another doctor.

Sorry you guys are going through this. She's so young to have so many problems.

Hugs,
Steph

 

[susiestar]

I have no faith that the EMT's would be listened to. I once saw the guy who seems to be the main one on call most of the time refuse to listen to the emt's when they said a patient was having problems. He just tells them to shut up because he knows what it wrong and they don't. Sadly, he is also "in charge" of the free clinic run through the hospital also.

You cannot call and find out if anyone else is on call either. It stinks. He is not even a doctor, he is a physician's assistant but he has no doctor supervising him. If you insist on a physician they send you home. Will have security escort you out and will call the police to remove you if you insist. It is really scary. But I have seen them do it firsthand and have been threatened with the police several times.

If at any point she show any lack of ability to speak we would call 911 anyway. I may do it this evening if she has another long one, in spite of the idiot who is in the ER. IT is one thing we have not tried.

As for the EEG, the pediatrician said it was "confusing". I have asked for records but they are stalling. It takes about 3 weeks after a request to get them from the hospital (any hospital) unless you are a doctor.

I am hoping to get some answers from the doctor today. I will let you know.

Thanks.

 

[gcvmom]

Make sure you document the frequency, type (symptoms) and duration so they can understand what you are seeing and hopefully take this with the seriousness it deserves.

 

[Lothlorien]

First off, I would suggest getting some of this on video to show docs.

Secondly, I suggest that you get her to a Children's Hospital Emergency Room, if you can. Even if it's an hour away....go.

To answer your question, I spoke with Missy's neuro several months back and was discussing this woman who was having a major seizure in my store. She couldn't speak, but was fully aware of everything that was going on around her. The medics were trying to pull her shirt up to get stats and she was trying to be modest and pull it down, though she was convulsing wildly. This lasted for a LONG time. When I told the neuro, she said this wasn't a seizure. She said that it wasn't possible for her to be having a full blown seizure and be fully aware of all that was going on around her. Maybe others, here, have different opinions...just telling what she told me.

When Missy has seizures, she is fully unconscious and does not have any pain. My first thought, when you said this, is that it could be MS...but didn't you and I have a discussion in the past about Cushing's and that she had a lot of the symptoms of Cushings? Not that these particular symptoms that you are describing are flags for Cushings, but if the Cushings isn't under control, other things....like blood pressure and blood sugar problems might cause these issues.

 

[Hound dog]

Susie

Any Children's hospital's near you at all?? I got desperate with Travis at one point and fam doctor/ pediatrician doctor wasn't listening to me. So although our insurance insisted on a referral from the pediatrician doctor, I still went over their heads and made an appointment with Children's Neurology Clinic. Once I saw the neuro and got the low down on what was going on.....pediatrician doctor then jumped on the bandwagon and signed that referral postdated.

husband was furious with me for doing that cuz we could've been stuck with the entire bill, but at that point I just didn't care.

I'm worried about Jess and have been for some time. I feel your frustration and anger because we deal with alot of the same issues around here.

If you can get your hands on video equipment start taping her during this. I went to neuro with videos in hand as well as pics when I knew Travis had had a stroke at 18.......right side of his face has marked drooping and I didn't want them to try and say it had always been there.

Awful that you have to fight so darn hard for what should be no effort to get. You're in my prayers.

(((hugs)))

 

[susiestar]

Thanks all. I ended up speaking with the on call pediatrician yesterday. these are most likely NOT seizures. They do show some sign of neuro problem. She said we could bring her in all we wanted, the pediatrician just cannot help. And until we either change insurances or get a new patient referral NO ONE else will help. Most likely the ER, even at children's, will just give us sympathy. So I wait until tomorrow to call the various docs.

If we don't have an appointment where we will be seen before Friday I may just take her to the Children's pediatrician Neuro dept and sit there while she shakes for them until they DO somehting. NOT the best way to make them listen, but it beats this crud.

 

[timer lady]

Okay, Susie, this is just plain wrong. Jess needs a complete neuro exam, likely with MRI.

Saying that, I have had 2 exceptional neuro docs (one from Mayo Clinic) tell me that the more that is known about the brain there is that much more to know. If he filled an exam room with what is known it would take up maybe one square ft of knowledge.

That same neuro told me that there are times that an EEG is only useful while the patient is having episodes. AND there are times that the episode is buried so deep in the brain an EEG is useless. A good neuro doctor is going to treat the symptoms while continuing to look for answers.

My current neuro frequently thanks me for being so patient with process & that he'd rather give me an unknown reason for continuing symptoms than something that is so wrong that nothing is being treated. (On my part we're dealing with the brain injury plus something more - that something more is making him nuts.) He shared with me that it takes years to become a good doctor - years of practice & listening to the patient. He feels that he isn't a "good doctor" yet as he has years more of practicing.

I'm off my bandwagon.

Please get a complete physical with all the CBC blood work, look for anything insect related, blood sugars, etc. A good neuro work up is necessary. A publically funded facility cannot turn you away (i.e. hospital) & if that's the way you need to go, do it. Jess (herself) may qualify for some kind of assistance.

Good luck - my thoughts are going out to you & Jess.

 

[susiestar]

Thank you all. That We Move site is invaluable!

They are not seizures. From all I can see she would not be able to talk as well or walk at all if it was a seizure.

It may be some kind of dyskinesia. That seems to come closer than anything else.

The EEG we did caught a spell. First they put a bright light in front of her closed eyes and flashed it on and off for several minutes. They they had her blow on a pinwheel. For 5 minutes non stop!

The blowing triggered it. The nurse doing the EEG was amazed and appalled at the length and severity of it.

I may be taking her out of state for treatment. Not sure, but not averse to it. My parents would fund it. I am just trying to get her through until we can see a doctor. We will be seeing the pediatrician but she is not in until Tues. The other docs told us they will not change anything. period. That ALL problems should be addressed with our regular doctor, who changed her hours to about 20 a week. She will come in on an off day to do referrals or whatever. The doctor on call this weekend actually called me and told me that they feel only the one doctor should see her until we see a neuro.

I plan to get an appointment scheduled Monday or Tuesday. Even if I have to call the children's neuro every hour until they are sick of me!

I appreciate all the ideas, websites, everything. Thank you so much.

 

[gcvmom]

Susie, you might be able to get some help from the people over at We Move, especially if you are looking for someone good in your area to take her to. I suggest posting something on one of their message boards with a request for feedback.

I'm so sorry you have to go through these hoops just to get her seen. That is just not right.

 

[susiestar]

An UPDATE!!

We have a neuro appointment scheduled for monday the 21st of Sept! Less than a 10 day wait! I would have posted yesterday but AT&T is a PITA. (Every 3rd or 4th time we pay the bill by phone they do something wrong and it archives all records of our dsl service. So they stop the service and we have to keep calling to get it reset. takes 3-10 days because they say it takes a minimum of 3 days to get it fully disconnected and they cannot turn it on until that is done. husband played the disabled wife card and we got it on in 3 days this time.)

Anyway, Jess is worse in the evenings/nights. 2 nights ago it lasted for 6 hours. Every muscle she has is spasming - and even some she didn't know she had!

The doctor did give her a refill on the muscle relaxer and ultram. It doesn't help a whole lot, but it does help some.

There is nothing the ER can do. I already spoke to a really GOOD ER doctor I know. He says that they would just scratch their heads and wait for it to pass so they could discharge her.

The best we can do is wait for Monday. The new pediatrician neuro is supposed to be excellent. She is listed on a couple of sites for kids with neuro problems.

Her staff seems nice too.

We are also using the lidocaine patches with her doctor's OK.

The referral secretary at the pediatrician office called to make sure we were scheduled. She is not a nurse, just an admin person (who is patient and persistent and often can get things scheduled when even the doctors cannot!). I asked her about the EEG.

She said the ONLY thing in the file about it was a post it that said the EEG was "okay".

So we will see..

Just gotta make it to monday. And then PUSH for pain control while they sort out the root cause.

Hugs to all, and thanks so much for the prayers!

 

[gcvmom]

That's great news they are getting her in so quickly. I hope she can hang on and not have too many episodes between now and then...

Keep us posted!