How much does phenobarb affect their alertness? - Mothering Forums

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#1 of 10 Old 03-28-2008, 09:34 AM - Thread Starter
 
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My DD is on phenobarb and she's always very drowsy and sluggish. She's almost 6 months old and still sleeps about 18 hours a day. When she is awake, she's moves like she's underwater. The neurologists were worried that she was sleeping so much because of the brain damage and because her brain wasn't developing, ect. They said pheonobarb "wouldn't do that to her". But her last EEG (23 hour) came back darn near perfect so they said, "well, *maybe* it's the phenobarb...." All the therapists we've talked to said it DOES affect their development, especially in the first year.

So what' the deal? Is she going to "snap out of it" when she's weaned off or to a different med? I have a hard time believing she can't do things just because of the damage. She does things appropriate for her age here and there, but it's weird, like she'll do something that blows us away and then never does it again or waits a month to do it again. Every once in a while, she has a very alert moment, but then she slips back into her sleepiness.

And can it affect feeding?

Thanks!
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#2 of 10 Old 03-28-2008, 12:51 PM
 
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#3 of 10 Old 03-28-2008, 01:32 PM - Thread Starter
 
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Thanks. They talked about weaning her off of it, but given that she's had some small seizures recently, I'm not sure. She just had a sleep study/EEG last night so we'll know for sure in about 2 weeks what they are going to do. But they don't want to switch until she's a year old. They claim phenobarb is the safest for babies under a year. I guess I will look into that to see if they have good reasons.

She's still making progress, it just seems like she could be making more if she wasn't looped out all the time! She's started smiling and cooing, which to me, is huge! She has smiled and cooed in the past, but it was one of those things, you might get one smile and she wouldn't do it again for a month. Now she's smiling almost every day!
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#4 of 10 Old 03-28-2008, 03:35 PM
 
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I feel your pain, phenobarb as mentioned is very sedating, and weighing out those benefits v. risks is no fun! But remember that it doesn't have to be forever. My son was on phenobarb for a year and half but has been med free/seizure free for over a year!
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#5 of 10 Old 03-28-2008, 06:04 PM
 
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Pheno really dosed my boy out. It was great for seizure control, but he has done better on Clobazam. Less 'slow' and his petit seizures have been controlled, too.

Pheno is considered the best for babies because it has been used for the past 90 years and there is a lot of information about it. There aren't long term delays with using pheno, AFAIK.
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#6 of 10 Old 03-28-2008, 06:50 PM
 
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Phenobarb really does cause heavy sedation. Any neuro who tells you otherwise is lying through their teeth. I was on it as a child and don't remember anything about first through third grades other than always wanting to sleep.

I hope you get the answers you need from the most recent EEG. If there have been recent breakthrough seizures, they might be more open to switching to something else.
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#7 of 10 Old 03-28-2008, 07:26 PM
 
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Sunshine was absolutely snowed on pheno. Besides being a great anticonvulsant, it's a barbituate, we used to use it to sedate the horses on my parent's ranch. When she switches meds, the difference you see will be very marked.
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#8 of 10 Old 03-28-2008, 07:31 PM
 
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My son was on phenobarb for about 3 months. He had brain/head injuries at birth and they gave him a huge loading dose as he had 2 small seizures. We weaned him off of it as quickly as we could (and found a pediatric neurologist willing to work with us the way we wanted to.) As soon as he was completely off of it he was a completely different baby. While he was on it he was SUPER sleepy...I even took him to our doctor to talk about it. Unfortunately once he was off it he cried ALL the time. I think his nervous system was just so tapped out. He does have severe delays and he didn't do things like other babies did. I don't know your babies situation but I know from mine that it wasn't just the phenobarb that was causing a sleepy baby who wasn't doing things in a typical fashion.

The first year was so incredibly hard for us, not knowing what was going to happen developmentally etc. Nobody has answers either. Things are better now, still incredibly difficult but better.

Opinionated Mama to dd 2/23/03, ds 3/20/05 hbac, dd 1/23/08 2hbac, and baby #4 due in June 2010!
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#9 of 10 Old 03-28-2008, 07:35 PM - Thread Starter
 
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Thanks for your reassurance guys. I feel like she's "there" and just can't do what she wants. She's so floppy most of the time, yet I've seen her push completely up on her forearms and hold her head up for 10 minutes. She's usually sleepy and unsociable, yet I've seen her have a "conversation" with my mom, where my mom would talk to her a little, the Charlie would grunt back, mom would talk, Charlie would grunt. And it went on for 5 minutes.

I think the seizures she's had are probably because they've, in a way, already strated weaning off the phenobarb by not increasing her dosage as she grows. The last time they checked, her levels were 18.5 and that was 5 lbs and 2 months ago.
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#10 of 10 Old 03-29-2008, 01:37 AM
 
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DS is 4 months now. He was started on phenobarb for convulsions due to brain injury at birth. We haven't seen a neurologist since (the MRI and EEGs during our NICU stay were so worthless in giving us any useful information...). We tried to wean him off it 1/2 ml per week, and he had some pretty terrible withdrawal symptoms. He went from sleeping through the night to not sleeping hardly at all. We've had to dial him back up to 1.5 ml, and that seems to be the magic number right now. He's sleeping normal amounts, active and alert during the day, and yet not having the withdrawals or muscle spasms. I have noticed a few things since we increased the phenabarb - his fingers lay over each other - they weren't doing that when we had him nearly off of it. And his seal on his bottle got lazy. Our holistic doctor was encouraging us to get him off of it, but suggested we may need to just hold him on a low dose for awhile since he got so hyperactive. It seems that we need to control his nervous system, so that he can learn and progress. We don't want him doped up, but being so hyperactive was causing him developmental problems as well. Today was a really good day - he got through a chiro visit and PT without tears, took 2 naps, did tummy time for about 20 min looking at a book, and about 20 minutes in the bumbo seat sucking on a toy. Now if I could just get him to bed so I could take a shower, life would be good!
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