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Hey mamas, new here

Posted by on May. 2, 2010 at 2:22 AM
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Hey ladies!  My name is Sarah.  I'm a 26 yr old mom of two girls, Kaylee who is 3 and Carissa who is 6 months.  I joined because of Kaylee.  On April 22nd we were driving out to my MIL's when she had her first seizure (at least as far as we know for sure, but we wonder).  We took her to the ER where they ran a CT and blood work and found absolutely nothing.  She hadn't been ill, no fever, no abnormal behavior, no head trauma, no indication that anything was wrong at all.  

We followed up with a pediatrician, who then referred us to a neurologist because of our strong family history--my husband, his father, his aunt all have/had epilepsy and my sister had Lennox-Gastaut until she was cured by the ketogenic diet.

Kay had another seizure the afternoon of the 29th.

Our appointment with the neurologist was on the 30th.  She had a 30 minute EEG with sedation.  The neurologist reviewed the results and said he found nothing.  We kind of expected that to happen...30 minutes can be a short time to find something and nothing ever showed up for my husband or sister.  Anyway, he decided to put her on Lamictal/Lamotrigine.  She gets 2 5mg chewables in the morning for 2 weeks (started today), then twice a day, then switching up, gradually increasing her dose over a span of about 7 weeks.  I'm supposed to be contacted this next week with an appointment for an 8 hour EEG and then go from there.  If she has too many seizures, he mentioned trying Dilantin for a short period just to get things under control.

We woke this morning to her seizing again.  Made me feel a lot less stupid about having her sleep in our bed or on the couch with someone lately!

So that's where we are.

I feel like I should be more together than I am.  I'm just sick with worry and so tired (only going to get worse since she has now had one in her sleep and also vomited while still unconscious)...and it's only been over a week.  So discouraging.

So if anyone has any tips on how to get some sanity, I'd love to hear.  Anyone know about seizure monitors or something so that I can let her sleep in her room and still be safe?  She desperately misses her room..

Thanks.

by on May. 2, 2010 at 2:22 AM
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LIZARD66
by Group Owner on May. 2, 2010 at 8:28 AM

(((((((Sarah))))))).

Welcome! I know this is the last place you wanted to have to be, but I hope you find comfort, encouragement, friendship, and info here.

I always feel for all you parents, watching your little ones go through this. I'm 43 and have always had epi. I can assure you that she feels NO pain whatsoever, but I know that's little comfort when you see her seizing. I have two kids of my own--teens now--and I can't imagine what it would do to me to see something like that, even knowing everything I know.

Since she's still titrating up her dose, there's still considerable hope that it'll eventually work for her. The hardest thing, I think, is that about half of all patients (and their families) will never know why they have szs. I have an underlying condition and had a difficult and traumatic forceps delivery because of it, so I can safely blame that, but I'm sure it hasn't made it any easier for my parents, especially Mom. You'll find out, though, that the most important thing is optimal control, which may take some time, but about 80% get complete or very good control, and as she gets older, even if she doesn't "outgrow" it, which she still could at her young age, identifying triggers (what "sets them off," rather than causes them) can be the biggest factor to control. For me, it's about 90-95%. I'm fortunate to have a good sz threshold in spite of being prone to them, and I am quite drug-sensitive, so only a tiny dose of Keppra is needed for complete control. :) Every med I have ever taken has completely controlled my GM szs, but for 25 years, I had simple partials in clusters that would make me too sick to get out of bed and brought on fever, severe headache, nausea, vomiting, and weakness that would take a couple of days' recovery time before I could return to my life, which includes raising an autistic teenager. I started Keppra in July, and except for a stupid mistake with an OTC med when I had the flu in Dec, there has not been ANY sz activity since. :)

Keep reading, asking, and pushing for answers. There is help and hope, and it does get better the more you know. :) If I can ever answer anything for you, just holler. :)

hugging

LIZARD :)

 

43 yo mom with lifelong epilepsy and other neuro and autoimmune issues, and owner of Epilepsy and Seizure Disorders. Self-advocacy is VITAL to your existence, and it saved my life! Any questions at anytime, please ask!! :)


group hug

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