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overwhelmed

Sat, 05/31/2014 - 23:08

My 5 year old daughter was recently diagnosed with having what her pediatrician considered to be absense seizures.  After reading the results to a pediatric neurologist, the neurologist does not feel this is the type of seizure my daughter is having and wants her to be seen.  However, there does not appear to be any real urgency to see her.  The first neurologist could not see her until September and now again we are playing a waiting game with another one.  I am fairly frustrated, scared, stressed, you name it, I have it as the mother of my wonderful little girl.  My concern is that she is having over 15 on a daily basis which at this time are lasting no more than 30 seconds.  Is this normal?  Is there anyone that can offer some comforting advice ?

 

Comments

Can you get them to do an EEG

Submitted by Anonymous on Sun, 2014-06-01 - 00:59
Can you get them to do an EEG (& other initial diagnostic tests)? Our pediatrician initially thought the staring we saw would be absence and the short EEG didn't show anything (so they thought I was wrong) but our child has simple & complex partials (CPs are not frequent, second EEG was longer & sleep deprived and showed something during sleep). Typical absence has a distinctive EEG pattern, would be easy for them to see.  And she might be having many more seizures than you notice if they are absence. The appts are scheduled three to four months out for the pediatric neurologists at our hospital, but the pediatric epileptologists are much harder to get in to see. Get them moving along on figuring this out where possible, a good history is sufficient for many a diagnosis but they can do a few things in the meanwhile.

I am in the same situation as

Submitted by laurapope30@yahoo.com on Sun, 2014-06-01 - 16:33
I am in the same situation as you with my 3 month old son. He had a "minor" seizure followed by a full seizure the next day almost a month ago. After spending a week in the hospital I still couldnt tell you exactly what is wrong with my son. He has had MRIs, CT scans, 2 EEGs with one spanning over 3 days, blood work, as well as a lumbar puncture. The only piece of information I have recieved is that there are abnormalities between the two sides of his brain. My son was sent home on 2.5 mL of Keppra twice a day and 50 mg of vitamin B6 once a day. Within a week he was having seizures at least once a day. He went to the neurologist last week and he upped his dose of Keppra to 3.5 mL every 12 hours. As of today my son has at least one seizure a day and they're clusters of small seizures. He is scheduled for more EEGs, an MRI, and the doctor even suggested brain surgery in a year. I am in the same boat as you with much frustration watching my baby go through multiple seizures and the only thing I can do is help him through them. P.S. I did receive a rescue medication of diazepam for any seizure longer than 3 minutes or more than 2 in an hour. Best of luck

Laura, that sounds very

Submitted by Anonymous on Sun, 2014-06-01 - 20:34
Laura, that sounds very frustrating! You can request a copy of the radiology reports and the EEG summaries, even the summaries from the neurologists (that should give you the medical terminology to start asking very direct questions about).  The OP did describe something that could be absence. Most kids grow out of typical absence. Having an MR visible issue is a different set of circumstances. Please talk to a pediatric neurosurgeon who is an expert in epilepsy if medication doesn't help, they are out there and they are amazing (we have one who we've seen for another condition about 7 years). It is possible to sift through the medical terminology, just hard to live normally when it seems overwhelming, it can take a really long time so find out what you can about his condition and if there are parent/support groups just focused on that.  -AJ

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