Need advice on possibly restarting Benzo!!!

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I am looking for advice on possibly restarting my severely disabled daughter on Onfi. She is 13 years old and has been on some form of benzodiazepine for most of her life (Diastat, Klonopin, Clonazepam, Onfi) for severe epilepsy. After finding fairly good seizure control with a Vagal Nerve Stimulator last year, we decided to wean her off of the 16 mls a day of Onfi. We did a fairly slow wean over the next 6 months and are now down to 2 mls at night. However, she now has severe dystonia (involuntary muscle contractions) that really impact the quality of her life. I believe they cause her pain as well as interfere with all of her daily living activities.

 

I am at a loss as to what to do!  I was thinking that I could restart the Onfi at the previous dose and see if that stopped the dystonia. Then I could try an even slower wean (maybe over a year or more). I can't stand to see her suffering and her neurologist hasn't been any help (he says let's wait and see!). I've also read that it's possible to try other Benzos to alleviate the withdrawal symptoms. I just can't continue to watch her suffer!  Things haven't improved at all since the syptoms began 6 months ago. Has anyone else tried restarting and what were your results?  Thanks so much for any help!

 

 

[Guest [ba...]]

I have to ask...  since you have a screen name of CBD...  have you tried using CBD to control your daughter's dystonia?  There are at least a few reports of successful dystonia management with CBD.

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I have heard a lot of kids with severe seizures get relief from CBD oil - made from marijuana. I know that is not an option everywhere though.

 

I would do whatever it took to make my child better. I'm sure you would too. BTW most doctors even Neurologists don't know how bad benzo withdrawal can be and it seems like that is definitely what your daughter is experiencing.

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I have to ask...  since you have a screen name of CBD...  have you tried using CBD to control your daughter's dystonia?  There are at least a few reports of successful dystonia management with CBD.

 

Yes, we did try CBD oil (Palmetto Harmony - it's actually legal throughout the US) but it didn't help at all. I decided to try restarting the Onfi this morning.  No improvement so far but I'm going to at least try it for a few days! Thanks.

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I have heard a lot of kids with severe seizures get relief from CBD oil - made from marijuana. I know that is not an option everywhere though.

 

I would do whatever it took to make my child better. I'm sure you would too. BTW most doctors even Neurologists don't know how bad benzo withdrawal can be and it seems like that is definitely what your daughter is experiencing.

 

Yes, as I said , we did try CBD and it didn't help my daughter. Thanks for confirming for me that doctors don't know how bad Benzo withdrawal is and that it does sound like what my daughter is experiencing. The hardest part has been trying to figure this all out by myself!  I really hope this restart is the right thing to do and doesn't make it worse!  I'm just really desperate to make her better!

[Guest [Le...]]

Yes, as I said , we did try CBD and it didn't help my daughter. Thanks for confirming for me that doctors don't know how bad Benzo withdrawal is and that it does sound like what my daughter is experiencing. The hardest part has been trying to figure this all out by myself!  I really hope this restart is the right thing to do and doesn't make it worse!  I'm just really desperate to make her better!

 

Hi CBD,

 

It is always heartbreaking to read about children who have been put on benzodiazepines - so sorry to hear that this happened to your daughter.

 

I'm wondering if you have a sense of whether she is able to sleep properly, and whether or not she can communicate this to you. The reason I ask is that the side effects of benzo withdrawal are so specifically terrible, it helps to get an idea of exactly what they are, and insomnia is a big one. Knowing that may give you a better idea of whether or not she is experiencing benzo withdrawal symptoms, or others issues related to her condition.

 

Even the best doctors are clueless about benzo withdrawal, and the doctor's willingness to 'wait and see' at your daughter's expense is unbearable to read about - I cannot imagine how terrible it is for you.

 

If you believe that she is not sleeping, that's a pretty big clue that it is benzo-related. As you said, it may be possible to reinstate her benzo to a level where she sleeps properly and the dystonia is relieved, and then let her stabilize there, to taper off again, but more slowly. It might take longer, but it could keep her out of the acute state she seems to be experiencing now.

 

My heart goes out to you - I hope that you are able to find relief for her soon!

 

Leslie 

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Yes, as I said , we did try CBD and it didn't help my daughter. Thanks for confirming for me that doctors don't know how bad Benzo withdrawal is and that it does sound like what my daughter is experiencing. The hardest part has been trying to figure this all out by myself!  I really hope this restart is the right thing to do and doesn't make it worse!  I'm just really desperate to make her better!

 

Hi CBD,

 

It is always heartbreaking to read about children who have been put on benzodiazepines - so sorry to hear that this happened to your daughter.

 

I'm wondering if you have a sense of whether she is able to sleep properly, and whether or not she can communicate this to you. The reason I ask is that the side effects of benzo withdrawal are so specifically terrible, it helps to get an idea of exactly what they are, and insomnia is a big one. Knowing that may give you a better idea of whether or not she is experiencing benzo withdrawal symptoms, or others issues related to her condition.

 

Even the best doctors are clueless about benzo withdrawal, and the doctor's willingness to 'wait and see' at your daughter's expense is unbearable to read about - I cannot imagine how terrible it is for you.

 

If you believe that she is not sleeping, that's a pretty big clue that it is benzo-related. As you said, it may be possible to reinstate her benzo to a level where she sleeps properly and the dystonia is relieved, and then let her stabilize there, to taper off again, but more slowly. It might take longer, but it could keep her out of the acute state she seems to be experiencing now.

 

My heart goes out to you - I hope that you are able to find relief for her soon!

 

Leslie 

 

 

Thank you so much Leslie!  Unfortunately, my daughter can't communicate at all (she functions at the level of a 9 month old) so I just try to figure out how she is feeling. I don't think she's having trouble sleeping though. In fact, the dystonia seems better when she is laying down and not moving so I don't think it's interrupting her sleep.  It does get much worse when she is over stimulated or under stress. Also, she was still getting 2 mls of the Onfi at night (maybe that helps her sleep?).

 

I can't imagine that it's from anything other than the Benzo withdrawal. She has never had any symptoms like this in the past and reducing her Onfi was the only change we've made recently. She just had her second dose of the restart tonight, so fingers crossed she will start to improve soon.

 

It is absolutely astonishing to me that doctors would prescribe such an awful, addictive drug to anyone let alone a little baby girl. I wish I had known how horrible it was before we started her on it.  I plan to spread the information about this within the disability groups that I'm a part of where so many disabled children are being prescribed Benzos.

 

Thanks again!

[[be...]]

It brings me to tears to hear a young child is put on benzos. To me, that is unacceptable as her brain is still growing. Plus, what happens to her when she is 15? I have also heard many times that MM or CBD put out by a dispensary other than that OTC stuff can help. The CBD that is legal tends often not to work for some. Good luck, either way.

 

Betsy

[Guest [Le...]]

Thank you so much Leslie!  Unfortunately, my daughter can't communicate at all (she functions at the level of a 9 month old) so I just try to figure out how she is feeling. I don't think she's having trouble sleeping though. In fact, the dystonia seems better when she is laying down and not moving so I don't think it's interrupting her sleep.  It does get much worse when she is over stimulated or under stress. Also, she was still getting 2 mls of the Onfi at night (maybe that helps her sleep?).

 

I can't imagine that it's from anything other than the Benzo withdrawal. She has never had any symptoms like this in the past and reducing her Onfi was the only change we've made recently. She just had her second dose of the restart tonight, so fingers crossed she will start to improve soon.

 

It is absolutely astonishing to me that doctors would prescribe such an awful, addictive drug to anyone let alone a little baby girl. I wish I had known how horrible it was before we started her on it.  I plan to spread the information about this within the disability groups that I'm a part of where so many disabled children are being prescribed Benzos.

 

Thanks again!

 

Yes, it certainly sounds as if benzo withdrawal is the culprit - I hope this was a strong lesson in a teachable moment for her neurologist. Also, I hope that your daughter will be on her way to relief and improvement now, with a new tapering schedule.

 

If any good comes out of this heartbreaking situation, it will be through your activism to prevent other children from having to go through iatrogenic drug dependence. 

Sending positive, healing vibes your way!