Neurology Vent

[anj_rn]

My DD had an anoxic brain injury at 4 months of age, and now has epilepsy (as well as a slew of other diagnoses).  She has been having more seizures and we upped her meds about 1.5 months ago, but she is still seizing.  We got orders 1.5 weeks ago for a 24 hour video EEG and blood levels for seizure meds.  We went to the lab the next day, Thursday, (2 pokes, no blood), and then drove out to the Children's Hospital on Saturday (1 stick YEAH!!!) for the labs.  I still do not have the results (they take a week).  We have to wait until next week to do the EEG (next avail appt).

Meanwhile DD is still seizing everyday.  The Neuro upped her meds again today, so hopefully that will work.  I am just upset and frustrated and I needed to vent.

[QueenOfTheMeadow]

  I'm so sorry!  It's so hard to see your child go through something like that.  I still get a knot in my stomach everytime I remember the first time my son had a seizure. 

[sbgrace]

How horrible. I'm sorry and I would be very upset too.

[bandgeek]

I'm sorry. :-( Please update when you get the results of the EEG.  My daughter went through that but her EEG came back clear...turns out she was having autonomic storming, which caused her to convulse but they were NOT seizures.  This was why typical seizure meds weren't working.  It took us a long time to get it all sorted out, and even longer to *really* get it under control.  She's doing fantastic these days!  Just a heads up in case the EEG doesn't show anything. :-)
 

[anj_rn]

We have had autonomic storms before as well (one of the many joys of a brain injury), but we are not having any autonomic symptoms, just the seizures.  We still have no lab results, and scheduling a 72 hour video EEG is taking more time than I expected.  Our new Neuro is not as on top of things as our old neuro, so I am just feeling helpless and frustrated.

DD has never had a normal EEG, so I should be used to this.  But the more seizures she has, the higher a chance of regression, and we do not need any of that.

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[melissa17s]

Sorry your dd is having such a hard time.  Hope your neuro finds the right med level to be effective and that the seizures stop.  I read recently about a bracelet developed by dr.'s in Boston and at MIT that was as effective as eeg- I can not wait until the technology becomes widely available because it will allow kids and other patients to be monitored in normal environment instead of hospital sleep labs.  Also, it does not require wires, goop in hair, and sleep deprivation.  In the mean time, I hope your dd is as comfortable as she can be during the veeg.  We started taking ds's own pillows and blankets because we felt the ones at the hospital were not that nice or warm.    

[anj_rn]

We do not do sleep deprivation or hospital sleep labs.  We use a company called Global Neuro Diagnostics.  They come out to the house, set up 2 video cameras (one where she sleeps and one where she spends most of her days), ans hook her up to a portable EEG (we secure it with pink coban and usually bling it up a bit).  They come back 72 hours later, disconnect her, and take their equipment back.  The onlt time we have done the hospital was for a sleep study (and it was a nightmare).

I avoid the epilepsy monitoring unit like the plague.  We have her EEG set up for Monday, still no lab results.  The seizures were not so bad today, not a violent, so that was a good thing.  Thank you all for your support.

[melissa17s]

Having the eeg in your home sounds so much better.  We do not have that service here, but I imagine it is more comfortable than the hospital.  

[SpottedFoxx]

I don't know that this is applicable with epilepsy due to brain injuries but... my son has a friend with CP.  He was suffering with terrible seizures - at least 3 a day.  They have tried just about every medication and medicine combination.  Then his wonderful Mom read about a high fat diet that has been shown to stop seizures.  She figured she has nothing to lose.  He has no more than a carb a day - no sugar whatsoever.  His treat is sugar free jello.  He went from 3 seizures a day to 1 seizure in 7 weeks. It's called a ketogenic diet - here is a link... http://www.theketogenicdiet.org/

If she had told me before she did it that she was going to try to control his seizures through diet I would have told her she's off her rocker.  I'm still shocked at how well it's working.  Every time her son has a seizure, he regresses.  At his recent birthday party, my son brought her to tears when he said, quite loudly "Mommy!  Look at A walking and talking - he's so much better!".  I had no idea how big a deal this was because before she started the diet, he had regressed to the point of being almost non-verbal and was in a wheelchair a great deal of the time.

[melissa17s]

Spotted Fox, ketogenic diets are used as a last resort for drug resistant epilepsy.  The reason it is a last resort is because since it is almost all fat, it lacks many vitamins, minerals etc and can cause other health issues.  This link is related specifically to epilepsy http://www.epilepsy.com/epilepsy/treatment_Ketogenic_Diet 

[anj_rn]

We finally got our Keppra trough level back, which was drawn before the latest med increase.  It was low.  We did stage 2 of our ramp up on med levels today, so hopefully as her blood levels rise, her seizures will decrease.  We are going stop at this ramp up level until after the EEG.  With the trough level low, we have some room to increase the dosage again before we have to mess with her Clonazepam (which has more side effects), or think about a third med.  

Thanks to everyone for their support, it is great to know that there are other people out there that understand.

[anj_rn]

UPDATE - we finished the 72 video EEG this week, it takes a full week to process the results.  Thanks to everyone, I will keep you updated.

[melissa17s]

Thanks for keeping us up to date, I hope that the eeg helps lead to better treatment for your dd so the seizures stop. 

My ds had a rough 2 weeks because his appendix ruptured.  We found everything seems to be magnified when there is already an underlying condition.  He missed meds due to surgery and then got too much after in an attempt to compensate.  He was really spacey for 2 days after- not sure if it was pain med or seizure.  Although the dr.s thought he made a fast recovery, it took 3x longer than all other appendectomies we saw come and go out of peds.

[anj_rn]

OK, so we got EEG results back today.  DD has multifocal epilepsy (meaning now she is spiking in multiple places instead of just the occipital lobe).  However, the violent head jerking is not an epileptic seizure.  Our neuro has referred us to another epileptologist, b/c DD is too complicated.  So now at age 3, we are on Nerurologist #4.

[melissa17s]

Oh bummer, well I hope the next neurologist is better equipped to help sort out your dd's seizures.  Are you currently or will you be going to pediatric epitologists?  Do you have to travel or do you have more to select from in your area?  Good luck to you! 

[anj_rn]

Originally Posted by melissa17s 

Oh bummer, well I hope the next neurologist is better equipped to help sort out your dd's seizures.  Are you currently or will you be going to pediatric epitologists?  Do you have to travel or do you have more to select from in your area?  Good luck to you! 

Fortunately we are in Houston and have 2 excellent Children's hospitals. within 30 miles of us.  Neuro #1 - we fired quickly, he was horribly mean to me.  Neuro #2 was a pedi epileptologist we DD saw from 5 mos of age until age 2, then he moved to NY.  Neuro #3 is a pedi Neuro we see since we did not like the replacement epiletologist & DD was not seizing at the time.  She is referring us to Neuro #4 who is a pedi epileptologist.

We only see pedi specialists who are used to special needs kids, it is hard though when your child is too special for the specialist.

[SpottedFoxx]

Sending you and your little one healing vibes - I hope the new doctor has some options for you.  

Melissa - thanks for the link.  I know it's worked wonders for my friend's son.

[melissa17s]

Originally Posted by SpottedFoxx 

Sending you and your little one healing vibes - I hope the new doctor has some options for you.  

Melissa - thanks for the link.  I know it's worked wonders for my friend's son.

I am glad your friend's son has benefitted; it is an important consideration, and some of the more recent medications are not worth considering.  Before and during the early 20th century I think it was one of the main treatments for epilepsy.  It took my ds a few tries to find the right aed, and I am glad because I fear having to resort to a ketogenic diet.  My ds's dr. says it is hard when a kid has been exposed to sugar, but with that in mind, I try to feed ds as many healthy fats as I can get in him.  I have read that omega 3's like flax and fish oil are good for epilepsy.  I can not get ds to consider fish oil- he has been vegetarian since birth and he plans to stay that way.  He will eat avocados.  

Anj_rn, I am glad you have options for specialists; it is something I wish we had, but for us it would require a 3 hour drive to either Mayo or UI hospital.  I often feel frustrated by ds's neurologist, but we have not felt ready to switch because his seizure are currently under control as best we can tell.  Again, I hope the switch will lead to better health and seizure control.