Infant Seizures - need a knowledgeable answer

[wrgoodman]

Our 2 month old daughter was diagnosed as having seizures. She passed all tests including MRI, CAT scan, spinal tap, x-ray, blood tests, Reflux ph test, 24 hour EEG. The BEST answer we got from a pediatric nuerologist is, "yep, I definately see seizure activity."
Five days after she came home she began having multiple attacks and we jumped the phenobarbital to 3 teaspoons/day.
This morning she had 4 strong seizures and we started 4/teaspoons per day hoping to curb the attacks (loading phase).
1) what is the limit for a 14.0 lb infant for phenobarbital?
2) any stories from anyone whose child actually outgrew these attacks when the cause is unknown?
3)is there an alternative medication for phenobarbital?
4)We are waiting to get an appt. at Los Angeles Childrens Hospital or does it even matter? They will look at the test results and say the cause is unknown and prescribe phenobarbital?
5) a book on infant seizures anyone recommends?

thank you and God Bless..we are praying fervently  

[DragonTU84]

It is very possible to sometimes miss seizure activity on an EEG. Have they done both a 30 minute study and a sleep study as well as the 24 hour EEG???

If so, and all of the tests came back negative, then the cause is likely chemical (not electrical) in origin. An EEG only catches it if it is electrical in origin and there is electrical activity causing the seizures. I unfortunately do not know the proper tests for this, especially in an infant.

Perhaps somebody here on the forum can help you out better. Best of luck to you and your infant.

I would still go in for the second opinion. They can always catch something the other place may have missed the first time.

[Quixotic1]

I'm sorry, I did not see your post.  If your daughter's seizures are not coming under control she needs to be admitted to the hospital and monitored until they DO achieve control!  This should not be left for parents to agonize through.

Phenobarb is usually the first drug of choice in the neonate ( your little one is right on the neonate/infant border at 2 months)

Her seizures sound more complicated than usual.  I would definitely have her seen at LA Children's.  It's an excellent hospital.  I would call (either you or your pediatrician) the Neurology Department and ask for an emergency evaluation, if your daughter's seizures are continuing.  Seriously, if she were my patient I'd have worked for a direct transfer.

I assume you're using the usual Phenobarb elixir at 20mg/5cc.  The loading dose (which should have been given in the hospital, in my not too humble opinion) would be 20mg/kg - so approximately 5 teaspoons.  Maintenance then is around 3 to 4mg/kg so about 20mg a day (1 teaspoon)

If she is still having seizures at home demand readmission to the hospital and transfer to a tertiary pediatric center like LA Children's, UCLA, CHOC, UCSD.  She needs a thorough neurologic and metabolic workup. NOW! .!

I practiced pediatrics for 22 years, so I am speaking from some experience.  What I don't know is how much workup they actually have done and what the findings were.  (I'm also originally from SoCal.)

If i'm off base here, because I don't have all the fact, I apologize.  Best of Luck, Quix

[CassieHall7287]

I have a 2 month old and i just started noticing sometimes her eyes will go all the way to the left or the right and they will have like 3 or 4 beats before she looks back.. And tonight i was watching her lay in her bed, and it was like she was sleeping but her eyes were open and her eyes were just rolling around, up, down, and both sides, and even so far up to where all i could see was white.. Then i noticed her foot jerked and she then started crying this really low sad sad cry, not her normal mad or hungry cry.  I just want to know what this is or if its anything to even worry about.

Thanks.

[JainMD]

Hi,
I think what you are describing could be seizure. Signs of seizure in an infant are usually subtle.
Uprolling of eye balls, jerky movements of limbs, lip smacking, twitching are some of the signs which we can pick up while observing the child.
There are several causes of seizures in an infant which includes electrolyte imbalance, meningitis, low glucose or any metabolic abnormality.
How is her feeding?
Does she have any fever?
If she is a girl, then you should definitely check for urinary tract infection causing symptoms.
Does she persist to have those movements?
How long are the movements?
You should be checking it out with a pediatric neurologist at earliest.
Keep me informed, I would be interested to know the progress.
Bye.