Scared Worried about Jess

[susiestar]

Jess was in talking to me about an hour and a half ago. She went in to use my bathroom before she went into the other room. I got busy and then talked with husband. It didn't register that she was still in my bathroom when I came back into my room.

Just now I went into the bathroom and she was still in there. She had been sitting on the toilet for almost 1 hr and 45 minutes - UNABLE TO MOVE.

She says she could move her eyes and she knew time was passing but could not move her muscles or her body. She could not cry out at all. When I came in her voice was not loud and seemed kind of weak, but not like she was trying to make it sound like that.

I am scared and don't know what is going on. Some kind of seizure is a question, but I doubt any neuro will even really listen. The EEG they did in Dallas showed no seizure activity so they say she does not have Absence epilepsy anymore. They don't care that she took lamictal less than 12 hours before the test started (24hr EEG) or that it takes weeks to become fully effective so would take longer than a day to be out of the system.

Our neuro is gone for the day and so is the pediatrician. She is moving and functioning now, but is exhausted. I have her tucked into my bed and am on the computer by her. I am going to stay with her this afternoon and watch to see what happens from here. If it happens again it will be a 911 call - esp if I can get to her while she is unable to move.

Short of having this happen when a doctor or paramedic can see it, I don't have any expectation that a doctor will do anything about htis. And I am frustrated no end and terrifed that something is really wrong with my baby!!

Any ideas would be appreciated. We will not be going to the ER because the will likely not even see her - and if they do they will give us at most benadryl. If she isn't actually unable to move it will be put down as more evidence that either she or I is doing this for attention. Grrrrrrr.

 

[JJJ]

It sounds like a seizure. I'm sorry she must be so scared.

 

[AnnieO]

Oh no. Hugs... I am right there with you.

 

[Steely]

Sending hugs - I don't know what to say.
I only know that people can have seizures that are not detected on an EEG. I have a friend who has them, and yet, by the time she gets to the hospital the seizures are gone and the EEG shows nothing. Her Dr is prescribing based on what the paramedics saw, so maybe next time, try to get a medical professional there asap, and see if that spurs the doctors to get her on a mood stabilizer?

 

[KTMom91]

Oh, Susie...how scary. Hugs to you and Jess. Hopefully you'll be able to get some answers soon.

 

[flutterby]

I wish I had some words of wisdom. You're right - others need to see this before you'll be believed, so I would absolutely call 911 if it happens again.

(((((hugs))))) I'm so sorry. I can't imagine how hard this is for both of you.

 

[shellyd67]

That is so scary Susie. Hugs and prayers to you and Jess...

 

[HaoZi]

That's scary. Short of a seizure my next thought would be a neck injury, or an infection like West Nile (paralysis is a rare occurance in WN but has been noted as a possible sign).

 

[BusynMember]

Has she had an MRI? I'd want that NOW.

Hugs!!!

 

[Wiped Out]

So sorry. This is so sad. I continue to keep Jess in my prayers.

 

[susiestar]

Had an MRI about a year and a half ago. Showed something on a gland deep in her head (pituitary I think) that the radiologist noted but the endocrinologist said that all kids have that and it goes away. Or that is what we were told about the report. I am still waiting for the copy of the report.

She was really tired. Laid down with me and slept for quite a while. Then felt better and moved out to watch tv and dozed off there. We were going to go to IHOP tonight but I wanted to keep her home so I said I wasn't feeling up to it. husband took them for free pancakes for breakfast so they didn't miss out. She just thought it would be fun to have a girl's trip - but we will do something else.

I hate this.

Where is that dang magic wand that I can wave to fix her??????

 

[flutterby]

She probably has, but has she been tested for Lyme? Have they done any genetic testing? They have to stop with the usual tests and start getting creative. I know how...preaching to the choir.

(((hugs)))

 

[LittleDudesMom]

Susie,

how scary for her - well, for you too.

Hugs,
Sharon

 

[timer lady]

An EEG isn't the end all be all for diagnosis of epilepsy/seizure disorder. Like any other test it's a snapshot of brain activity at the time of the test. I've had a seizure disorder for more than 40 years of my life. Some of my EEGs were perfectly normal; others were off the chart with spikes & the like indicating seizure activity.

Saying all that, you're struggling to get someone to listen & for that I'm sorry.

 

[DaisyFace]

Susie--

This is terrible...I hate hearing how much Jess continues to suffer. That poor little girl!

Often, when you see a television show like "Mystery Diagnosis"...you see people suffer for years and years with some bizarre thing and being told it is nothing, all in their heads...and then finally, the breakthrough comes when some retired specialist somewhere decides to take a crack at it pro-bono just to do some good....and the the person finally gets some relief.

I think you need just this sort of "miracle worker" and I am praying you can find one...

 

[Josie]

As you know, we have a similar situation going on in our house. We have been to countless doctors over the last 7 years. With only one exception, I have found that the ones who are the most help do not take insurance. I especially like the ones that have an MD or DO, but also do alternative health care. If they don't take insurance, they can spend more time listening to the patient. If they are open to alternative treatment, but can and do write prescriptions, you hopefully get the best of both. If they do alternative medicine as well, you know that they go beyond the checklist style diagnosing that seems so common now.

For the most part, our insurance still pays for the treatment or testing, even if the prescribing doctor is not on the plan. Sometimes, I have had to ask her PCP to order the test to get it covered. It was an alternative doctor like this that ordered an MRI for my daughter's chronic, disabling headache after I had taken her to several neurologists that didn't see the need for an MRI. For the MRI, I did have to get her PCP to order it. Maybe because another doctor was involved, she felt like she should do it when she had not come up with that on her own.

We recently switched to yet another doctor, really a nurse practioner, and my daughter's headache is actually gone some of the time for the first time in over 3 years. These doctors can help but it isn't always easy finding the right one.

 

[gcvmom]

A second here on the negative EEG not an absolute indicator for ruling out a seizure disorder. My husband's EEGs have all been normal. And he does have a seizure disorder. His is due to a physical, vascular abnormality in one location.

Have you thought of documenting her activities just prior to these episodes to see if there might be a correlation?

 

[SearchingForRainbows]

This is extremely scary... I agree with the others who said to call an ambulance if this happens again. Sending lots of positive thoughts your way that there is a specialist who can get to the bottom of this ASAP!!! Hugs... SFR

 

[HaoZi]

Any progress on this Susie? Any other episodes?

 

[Shari]

Poor Jess.

Do you have a video camera or video on your cell phone? I know that doesn't prove anything definitive, but it would at least be something.

Wee is diagnosis'ed with a seizure disorder, and I wasn't the one to see any seizures for literally years of his life. His eeg's always came back normal. His first babysitter saw the first one at about 6 mos, and a year later, his second babysitter saw the same thing, and it had been so long since the first, I never told her about the first one, but the account was identical to the first. That was when we learned about absence seizures, and once aware, we did notice those.

I am so sorry. I wish I had answers for you.