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hailie...
wean off klonopin
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hi all, sorry, this is a re-post from the parents group but it's drug related so i figure i'd post here too...
my 11 month old daughter has been taking klonopin for a little over a month (.75 mg)... she's also on phenobarb and has been taking that for about 2 months (32.4mg)
she was orignally diagnosed with complex-partials but now they think her seizures are caused by low blood sugar and her former ped neuro gave us a plan to wean her off klonopin and phenobarb (although he warned us that she may still be epileptic).
so the plan was to reduce the klonopin to .5 for 3 days then to .25 for 3 days and then stop taking it altogether (.75 to 0 over 6 days)...
the day following the last dosage of klonopin (she's still on phenobarb) we noticed something strange. while sleeping, in her car seat, she would jerk or startle herself (her arms and legs flair out) it is similar to the myoclonics she used to have but when she used to have myoclonics she would be awake, alert and crying in between. also the jerks used to be very rhythmic every 10-15 seconds and be clustered over a few minutes. now her jerks would happen only once with 2-10 minute breaks and she would do this for her whole nap or in her first hour of sleep. this has been happening every time shes gone to sleep in the past 4 days.
do you guys think this is a symptom of weaning her off, do these "jerks" sound like seizures?
reason why i don't have doc i can consult with is that i had to switch insurance (not cause i wanted to) and i'm trying to get a new neuro doc but everything is taking forever and getting really complicated... it's been two weeks and i'm supposed to start weaning her off of phenobarb now... i don't know what i should do.. any help would be appreciated and thanks in advance.
tommy
Recent Comments on this Discussion
My daughter is 6 yrs old. She has been taking this medication (Clonazepam) for over a year now. She gets 3mg in th morning and 2 at night. Our Neurologist wants to start weaning her off in November as it will have been over a year since she had a seizure. I am reading some horrile stuff about the withdrawals from this drug. Including increased seizures. How can you know your child has outgrown epilepsy if the withdrawal of the drug causes seizures to occur. Totally crazy if you ask me. I am very scared and stressed about this because it is so close to happening. Please tll me how your withdrawal process has been, I would love some extra insight.
Hi Tommy...
I'm no doctor, but weaning someone off of any daily medicine in that time frame (especially of her body weight) seems really quick. Among other things, I take Klonopin right now to keep my simple partials under control until I get to an epileptologist on 10/9. I was originally prescribed to take it "as necessary" a few years ago, but my neuro has me taking 1mg a day due to some recent probs. I weigh 175 pounds, and she can't weigh more than 20 (I'm guessing). From what I've been able to find out, Klonopin is somewhat addictive physically, and does lose its effectiveness after a while, but it's good short term solution for alot of probs. I still think that's a pretty fast drop for such a small person. I'm curious to see how fast they wean me off of it. I'll let you know. I also took Phenobarb as a preteen, but can't remember how quickly I was taken off it. The bottom line is that you should tell the neuro your concerns and that you have noticed some oddities since stopping Klonopin and you're not quite comfortable getting her off the Phenobarb yet. Once you get your insurance stuff straightened out, find a neuro you're comfortable with; that will benefit everyone, especially Hailie. Most states have DPH websites where you can do research on doctors; they provide some pretty good info. I've even suggested it even to folks just looking for a GP. Good luck and God bless all of you. I'll shoot you an email next week and let you know about my Klonopin situation.
Doug
Hi Doug, thank you for replying.
You are correct Hailie is only 18lbs. I was finally able to get a ped. neuro to look at my daughter and the doc said that she wasn't sure if the jerks Hailie was having while asleep were seizures but because she was completely off of the klonopin and we are also in the process of weaning her off of phenobarb, she didn't want to do anything just yet, not until all of the aeds were out of her system... i will keep you posted, and yes.. please do tell me more about what you will do w/ your Klonopin... take care.
oh.. almost forgot to ask... what does DPH stand for? i live in california... if it's not too much trouble to do you know the website for california?
tommy
Hi Tommy...
Glad to hear you've finally got Hailie to a good neuro. DPH is Department of Public Health. I used to live in Ontario, CA, so I'm rather familiar with their website. I was able to select reputable doctors by looking to see where they went to school, pending lawsuits, etc.... the associated links on there also provide other valuable info. Here it is: http://www.mbc.ca.gov/Lookup.htm . Good luck and keep me posted.
Doug
Hi Tommy...
Saw my new Epileptologist for the first time yesterday and he is weaning me off 1mg Klonopin (daily) over the course of 1 week. I'll be dropping to 1/2 for the next 7 days and then off all together. Hope things are going well with Hailie.
Doug