Please Help If Possible! :)

[kailyns mommy]

My four-year-old daughter got taken by an ambulence from preschool April 4, 2013. She was diagnosed as having a complex partial seizure. She was given a CT, blood work, and urninalysis. Everything came out good. She was admitted overnight, and was given an EEG the next day, which was not sleep-deprived, and it came out good. We were sent on our way, but my mommy gut told me it was just not right.

I called Gillette Children's Hospital to ask if they thought I could use a second opinion. They scheduled me for a sleep deprived EEG for May 23, 2013. My daughter has been completely potty trained, but she wet the bed everyday since her first incident so I called them back on Tuesday, April 16, 2013 to just inform them of that, so they had it on file for when we had our appointment. They talked to the neurologist who said that he needed to see her ASAP. We took her in on Wednesday, April 17, 2013 to the clinic. They ended up admitting her for a 24 hour VEEG. That VEEG showed several "spikes" which showed up more at night than during the day. She did not have an accident that night, so they decided to keep her one more night. Unfortunately, she did not have an accident that night either, but the VEEG still showed those spikes, so it was determined "abnormal." Now I am still stuck with the question of whether these accidents were due to a siezure or just the trauma she went through in the ER. She was also given an MRI that came back "normal."

She has not been diagnosed with epilepsy because she has had just the one seizure. When asked how likely it is that she will have another siezure, the neurologist said, "Well, all I can say is I won't be surprised when you call to tell me she has had another." This is so unsettling, and I think you can really only understand if you have been through it, so I am on here to see what some of you think and to hear ANY words of wisdom you have!

Also, she did fail her preschool screening the first time she took it which was about 6 months ago (I know one thing they were worried about was her processing?), so Gillette also will set us up with a Nuero Psych Evaluation for sometime in the next few weeks. Has anyone experienced one of these? What can we expect? Is it an inpatient or outpatient? How long? We also have a re-eval in August. Any suggestions on questions to ask or things to keep in mind before that appointment?

Also, I have so many questions that I just couldn't even think of them all while we talked to the doctors. My mind is just filled! Anyone have similar experiences or can anyone offer any words of wisdom or advise.

ANYTHING anyone has to say will be so appreciated!

THANK YOU in advance!!

 

[Fedup]

kailyns mommy

Welcom to C.W.E. you sound so worried and I am so sorry, what can I say, ok first off calm down a second, take a deep breath now this is not the end of the world even though it might seem that way right now. Doctors really do not know a whole lot about epilepsy but they can help treat it, your daughter may never have another problem this could be a once off, or she might just grow out of it as a child a lot do. You worrying is not going to help, first of you need to be able to think and sometimes fast always alert. If you are drained mentally and physically you will not be much help to anyone.

The bed wetting might just be like you said trauma, you do not need any questions to ask they are in your head, so take out a pen and paper and start writing all these down. Write down everything you think is important and anything you want to know. I cannot look at it from your perspective because I have had this since childhood plus I am a man but I will tell you this you are a very brave person and a very important person to your whole family right now. In a word you are brilliant, yes you are worried and scared and more that I cannot even think or describe but you are a very important person now and always. You are needed so why look at what will happen or could happen before it actually happens. Yes something has happened and you need to fix this but not look for something that has not happened yet or may not happen. All this is easy to say but its true. Only you know your child nobody else and you will do the right thing. Now how about just relaxing for a second.

 

[Nakamova]

Hi kailyns mommy, welcome to CWE!

It sounds like you are doing all the right things -- following your gut, pushing for medical attention, and asking lots of questions. As Fedup says, doctors don't know a whole lot about seizures -- certainly not enough to make concrete predictions about what will happen. EEGs are useful when making a diagnosis, but even they can be unreliable. I hope your daughter doesn't have any further seizures, but it's good to pay close attention for the time being, and continue to make a note of anything that seems unusual in her behavior or aspect. If you can think of anything prior to this incident that was puzzling about your daughters health and wellness (like the preschool screening), let the neuro know.

A neuropsych evaluation is outpatient, and tends to last a few hours (possibly shorter for a child). It consists of a series of exercises that test memory and cognitive skills. It can help pinpoint areas that need work, and can suggest if there are neurological factors playing a role. If your daughter has been experiencing seizure-related activity -- even very brief "absence" seizures -- they may have impacted her ability to focus and follow. It can also be useful to set a baseline to measure any future changes against.

Feel free to ask more questions as they arise. I know this is a stressful time, and information can help as you try and cope.

Best,
Nakamova