I Saw The Latest One

[susiestar]

Jess just had a 9 minute seizure. I think that is what these are. Not 100% sure, but that is the only word I can think of. She used my bathroom and then came to sit on the bed next to me (I have the start of a migraine and have been laying down.)

She was just staring and it seemed off somehow. So I noted the time and started talking to her. Her skin was like ice so I wrapped a blanket around her. She could move her eyes some and make a whining noise but both were difficult. Her eyelids would flutter but were open mostly. After about 5 minutes she could blink her eyes if she worked at it, but they fluttered as she closed them.

I tried to see if I could make her lay down. I could push her over but her legs didn't straighten out the way they would normally. They stayed bent at the waist and knee. I didn't push her far, just shifted her back some to see if her body would move normally or not, then sat her up the way she was.

I didn't know if pushing her into laying down would cause a problem or not, so I didn't mess with her much. She could remember what she was seeing with her eyes, so I opened a couple of cross stitch magazines my mom gave me to give her something to look at. It seemed to help her not freak out - gave her something to focus on.

It did not end suddenly, like she snapped out of it. Over about a minute's time she got more able to make noise and move her eyes and then her head. She also was able to move her fingers and grasp my hand. Gradually her body became less stiff and she was able to move, but the pain was bad as the stiffness retreated.

I don't know what kind of seizure this would be. Several people have told me that people with "real" seizures don't know what is going on and don't remember them. I don't think it is true because I had a couple of episodes like this one at about age 11. I was in one specific area of one store when mine happened and they never happened anywhere else. My parents acted like it was no big deal or I imagined it, so I didn't think much of it. Later I figured it was the flickering lighting from the florescent lights in the store.

I will call her neuro on Mon and maybe this time will hear something by Wed or Thurs. Otherwise we will go to the ER in the city to get this reported. Cannot go to the close ER because they will give her benadryl. period. (Our bizarre local ER only seems to give benadryl - even tried it when she had a sprained wrist and when thank you had a cut that needed stitches!)

911 says it is not an emergency and if they dispatch an ambulance we will have to pay up front - and insurance won't cover them for this. Can you say GRRRRRRRRR!!!!! I am totally upset but we cannot pay the fee to call them and ins won't pay unless her life is in danger. Meaning not breathing, bleeding, bone sticking out (won't come for a broken bone unless it is poking through the skin - they tell you to go see an ortho doctor or take yourself to the ER), or totally out of control mentally ill patient.

So that isn't even an option. I am glad I called them from the other room - I watned to not scare Jess because I was pretty sure she could understand what was going on around her.

The 911 operator did say that if she stays unresponsive for over 30 min to call back because then it would be different. She clearly felt bad - seems budget cuts have gotten to them also.

I feel so helpless right now. I don't know how to fix my baby or even how to get someone to care enough to help her.

 

[HaoZi]

Wow, almost sounds like she slips into catatonia for periods. Is this becoming more frequent?

 

[KTMom91]

Oh, Susie...how very scary. How is Jess doing now?

 

[kfmewes]

That's so scary. I hope she is feeling better and that the neuro will be able to find something in order to treat her. It's just horrible that they said it wasn't an emergency, I am sure if it was their kid it would have been.

 

[DDD]

I think your plan is a good one. Sure sorry you are having to live in crisis. Sending hugs. DDD

 

[Steely]

I have heard of these types of seizures before, I cannot come up with the name of them off the top of my head - but with these last 2 incidents that you basically witnessed it seems the neuro would be able to assume that this is seizure activity.
Many hugs.

 

[susiestar]

Right now she is asleep. She is very tired after these things happen. She is often awake a lot at night and asleep for part of the day. Part of this is because the pain from the muscle problems is worse at night and it makes it hard for her to sleep, the other is because this has always been her normal sleep/wake cycle. We fought it for many years but it isn't a winning battle. Long as she functions and does school stuff, etc... when she is awake I don't fight it too much any more.

I hope the neuro will pay attention. We never know with him. Chances are he will insist on an appointment and put us off for 2-3 months or more before seeing us, in which case I will have a tantrum and go to the city ER to get some type of treatment. WOn't accomplish much because they will give us a neuro referral and make an appointment for 2-3 mos away, but it will start a paper trail. We might be able to get the pediatrician to do something, but I doubt it. Worth a try.

I don't know if it is catatonia, it seems more like a seizure to me. Not sure why, maybe because I am not fully familiar with catatonia. Either way, it helps to know I am not alone.

 

[HaoZi]

Not like true catatonia, but a state similar to it in outward appearance. I don't know what else to call it. How aware is she during those times?

 

[Steely]

catatonia is a state induced from severe trauma, correct? i doubt that is it.

 

[HaoZi]

No, it's not catatonia, but it's a way to describe what it looks like to docs, since generally if you say "seizure" they're thinking the typical trembling/jerking kind.

 

[susiestar]

She knows what is going on the entire time. It is very scary for her, as i am sure you can imagine. She simply cannot respond or react to the world during them. She can make sort of a whining noise but it is very hard for her to do. It is even hard to move her eyes = she looks at one place and moving them to read is not easy. I think she could watch tv v/c she wouldn't have to focus so closely on each word, Know what I mean?? I put some magazines open to pictures for her to look at during the episode. Seemed to me that if she had something to focus on other than what was happening it would be easier for her to cope during it. That is how we came to discuss reading being a problem during it. She said the pictures were great but she couldn't move her eyes easily enough to be able to read.

 

[HaoZi]

Would she allow you to video these to show to doctor? I'm amazed you haven't gone into head-bashing mode on the docs for ignoring this or not looking hard enough to help.

 

[Mamaof5]

That is the description of a complex partial. My neice has complex partials and full blown clonics. I hope you get to the bottom of it. A bit of a tip, older style anti-convulsants are best except for dilantin (too hard on the kidneys and liver for long term use). A lot of kids seem to do well with a moderate dose of tegatrol too. Phenobarbs are the the best solution that I've seen but addiction is a possibility with those.

I hope Jess gets the help she needs. They should be doing an active MRI to get the bottom of what's happening. Sometimes though, seizures can't be seen - well at least the epicenter of where they originated in the brain, some epileptics don't have a "seizure center" in the brain where it starts and it's random areas like my neice. Unfortunately, her seizures are so strong that it's destroyed grey matter in the past. My crossables are crossed for you all.

 

[susiestar]

Thanks. I will research complex partial seizures.

She had 2 more today. One was 22 minutes and we were talking when it happened. She was browsing some craft mags while snuggling with me and she stopped talking so I looked closer. I turned the pages occasionally, got some info (she answered by blinking for yes and no - couldn't make noise for most of this one) and then it eased up, She hurts a lot afterwards.

I had asked her to pay attention to how she feels right before it happens and right after to look for a sign that one is coming.

About an hour after the seizure ended she came to me and said she got really hot for about thirty seconds and then was really really cold. I bundled her up in a sweater and blankets and within 3 minutes she was unable to move. This one lasted for 57 minutes. She started to freak out at one point and I told her that I was there, would be there no matter what, and while I couldn't fix it I COULD be right with her and do all I could to make them as easy as possible. I kept her covered, propped her up when she started to slump over, snuggled her, had her watching some tv shows on the computer, etc.... After about 30 mins she started to want to know how long it had been - able to make low noises and I just sort of knew what she was asking. I checked the time as I had looked when it first hit, and then told her I would tell ehr when it was over. I also changed to an episode of Bones that was online. She likes Bones (just like her mom) and it was a good distraction.

I am freaking. If we cannot get the neuro to give us an answer tomorrow then we will be going to the big city ER. I have just had enough.

At least we have some idea of a sign that might tell us when one is coming. The 911 operator today told me that as she could communicate and was not in danger of not breathing, choking, etc.... then it was NOT an emergency and we should just call our doctor tomorrow. The doctor's weekend service refused to put us through to anyone. They say that if it isn't bad enough for 911 to respond then it can wait until office hours. If it IS bad enough for 911 then the ER docs can handle it.

Now I have to fight through the neuro's office. His message says they will respond with-in 24 hrs. What they mean is that the nurse will call you back with-in 24 hrs, then take 24 hrs to talk to the doctor, then 24 more hours to call you back. If you have a question about what the doctor told her, then it takes her another 24 hrs to talk to the doctor and 24 more to get back to you. It got a little better the last time because I took my log of when I called and when they called me back to the appointment with the neuro. I asked him why each step took 24 hrs and said if this was standard then could they please indicate that on their machine? He was shocked - which surprised me. So hopefully they will call me tomorrow from the message I left Thurs and I can get through to them. It is all so infuriating!!

I just pray that these are not damaging her brain. I have not told her or husband that it is a possibility. I won't tell them, not when there is nothing we can do but worry and freak out. I don't need help doing those things!

Thanks for all the prayers. Part of the reason I am positing each seizure is so that I have a record that is easy to find.

 

[Star*]

CALL one of these people tomorrow - I can't help my niece and I feel helpless - ONE of these people or researchers SURELY can help you and her for FREE.

http://www.ninds.nih.gov/research/index.htm

I'm no nurse or anything like it - we all know that, but I would think she needs some kind of toxicology report or heavy metals testing done. SOMEBODY at this place SURELY could read what you wrote us and have an idea - SOMEBODY.

 

[Josie]

What about taking Jess in to the neuro's office tomorrow and saying you just couldn't wait for them to call you back. You have an urgent question and you have been waiting all weekend, or since Thursday. answered. You could just wait there until they answered instead of waiting at home until they called. Maybe she would have an episode then and they could see it. I would hope they would do something about it then.

Was she recently taken off anti-seizure medications because they thought she didn't have seizures?

 

[susiestar]

Going into the neuro's office to wait for an answer would be futile. they would be VERY likely to either refuse to see us or to call security. I wish I was joking. This neuro is positive he is the top in the world and he has no time for "urgent" questions or pushy parents. I am pushy enough during appts to put him on edge. This is the third pediatrician neuro practice we have gone to and there are NO MORE in our state. The other two simply were "not interested" in treating Jess. We were willing to do everything they asked, but we also wanted to have what seemed like basic testing done (tests that when we went to the ER the docs told us to have the neuro run - not stuff we dreamed up or researched on our own - stuff that the neuro on call in the ER told them to tell us to ask for. Actually, our neuro is the one who the residents in the ER called. So it was HIS advice that he got angry with us for insisting on. The first neuro claimed an insurance problem after stringing us along with cancelling appts for over 9 months. Then the next neuro actually used the words "just not interested in treating Jessica" - would not even do a short eeg or basic MRI.

So we ended up with the current neuro and we have searched for another one. Dallas is where we would end up going and we just cannot go there for treatment every few months.

The Dallas neuro took her off of lamictal in Nov because the 24hr eeg that he did showed NO seizure activity. She took the last dose of lamictal a few hours before he started it, but we had seen some seizure like activity in the months before then even though she was on lamictal. OF course the things that looked like long absence seizures were NOT daily or even weekly, just every once in a while we would notice it. But she had no absence seizures during the 24hr eeg so the doctor insisted she had outgrown the absence epilepsy. He wouldn't even stay in the room long enough to explain how the eeg could show seizures if seh had lamictal in her system.

The nurses didn't know why he was saying that but said he is really good so he must be right, even though it didn't seem logical.

I feel so helpless. I just want to cry. I have a feeling that if we were in Cincy we would not have this problem - I have never heard of anyone at Cincy Children's acting this way. We ended up with a lot of different docs there and tehy all, even the neuro we saw with Wiz, listened and answered questions and were LOGICAL.

I will be calling that place tomorrow, Star. Thank you. I am also goign to raise some heck with the neuro - if he refuses to see us as a patient then i will call the head of the hospital and ask THEM why. Cause my kid deserves better than this. We never said we wouldn't get psychiatric care for the shaking that the neuros insist is pychological. Our questioning that came from having a pediatrician who says everything wrong with a teen female needs psychiatrist treatment (almost literally - she is now being investigated for this per a nurse in her office that is a friend). Then further questioning came from the tdocs we worked iwth saying they didn't think it was anxiety because it didn't act like any psychiatric induced illness they had seen. So far 3 different ones have said this. The one psychiatrist we saw is now out of business with-no explanation so we are searchng for another one, but that is another headache with our insurance.

Thanks for letting me vent here. It will terrify Jess if she sees me upset about this. She is scared enough that I have to be reassuring to her. husband is freaking out also, which is NOT helping her. I know if the docs try to say they cannot see us because insurance we will get my dad to pay cash. He has already said he would, even though I have not said this latest development. He is ****** majorly at the docs. mom won't let him go with us because he would really upset this guy adn my mom asked questions a year ago when she came with us - and he said if we brought her back he wouldn't treat Jess anymore.

Why are these docs so upset by logical, politely asked questions? Am I in a time warp back to the 1950s when docs were always right and never to be questioned? Every other doctor I know encourages patients and family to ask questions. Of course I just had a doctor refuse to see me because I was sick, so maybe I AM in some parallel universe or alternate dimension here in OK.

 

[HaoZi]

Similar to my struggle to get Kiddo tested fully, but yours really needs it. I feel your frustration. Can you go back to the ER doctor and ask him to put a referral in writing including the exact tests he wanted done? As others suggested in a few threads, might you get farther with this doctor if, instead of pushing, you sit down and start crying and wailing about how no one will help her, she's your baby, something is obviously wrong why won't anyone help my daughter?

 

[Star*]

Susie*

Were they able to point you in any direction?? Surely they had some suggestions of something? I'm crossed up like a pretzel.

 

[AnnieO]

Susie, I'm praying right now.

You're right about Cincy Childrens, they are awesome. I'm not next door to them but it's only an hour away from me, if you need a place to stay and they will listen... I'm here. Just say the word, we will have room for you guys.