Diazepam taper for disabled toddler

[[Mi...]]

 

 

Hi All, I realize my situation is probably a little different than most on here, but I'm very much hoping you all might be able to provide some knowledgeable guidance and support, since my son's doctors unfortunately have not been very helpful at all.  I have a 4 year old little boy who has a severe genetic disorder that results in profound intellectual disability and hard-to-control epilepsy, and he recently experienced his worst bout of seizures ever, 9 tonic-clonic seizures over the course of 3 days that landed him in the hospital for 4 days.  To stop the seizures, he received dose after dose of benzos, first diazepam and then finally IV lorazepam.  All of his seizures have been triggered by illness, so he was previously prescribed preventative diazepam for when he's sick (on top of his normal, non-benzo seizure meds), 3.5 mg 3x/day for 3 days, which we've only given him a couple of times when he was really sick, and we never noticed any issues coming off these meds in the past.  This time, we had started the diazepam as soon as he was sick but unfortunately it didn't work; the seizures started two days later, lasted three days, and he had several more (higher, 7.5 mg) doses of benzo rescue meds to stop them.  As soon as the seizures stopped, we started a week-long taper off of the diazepam, which he had only been on for 5 days.  But the day that he had his last dose, it was like a switch flipped during the night, and he went into an utter panic. He kept waking up over and over crying and trembling and reaching for us, and during the day all he would do was scream and cry and cling to us for dear life, startling at the the slightest sound or movement.  He had zero interest in his toys, refused to participate in his therapies, and would barely eat or drink. Instead of getting better, it was getting worse each day, and by the evening two days later he was literally climbing the walls like he was trying to escape the house for some reason.  All of this is very bizarre and out of character for him, and we finally put it together what was probably causing it.  Our neurologist has completely ghosted us throughout all of this, not responded to repeated calls and messages, and the pediatrician is clearly out of her league and didn't feel comfortable making recommendations, so we finally took matters into our own hands and put back him on what we thought might be the lowest dose of diazepam that would calm him down a bit but not re-start the whole cycle, 1.5 mg 2x/day.  The next day he started sleeping again, and although he's still extremely agitated, it's been getting a tiny bit better each day for the past week.  BUT, the benzos are making him really uncoordinated and wobbly...and he's agitated, so all he wants to do is pace, but he keeps falling and running into things and we have to just chase him around and keep a hand on him all day.  So obviously we want to get him off the benzos as soon as reasonably possible, but hopefully without increasing his agitation any further, it's already very incapacitating for him and the whole family.

 

So my question is, given the length of time he's been on the diazepam (roughly three weeks, including the week-long taper and then two days off before reintroducing), and the fact that a week-long taper clearly wasn't long enough, what kind of taper would you all recommend??  Thank you so much in advance for your help...I think you all understand what hell it is to go through benzo withdrawal, and watching our nonverbal, severely disabled little guy go through it with zero understanding of what's happening has been absolutely heartbreaking.  Just desperately hoping for a little peace for him as quickly as possible...

 

Edited December 7, 2023 by [Mi...]
Realized my formatting was weird

[[je...]]

Hi @[Mi...]

Welcome to BenzoBuddies!

As you said your situation is heartbreaking. I am deeply sorry for everything you're going through. There is another factor that might have led and could be contributing to the situation which is known as kindling. Kindling refers to every time when we start and stop benzos then the next time withdrawal symptoms become more severe. 

Doctors are generally out of their depths when it comes to tapering benzo's and withdrawal symptoms. Because of your son's history of seizures and his very young age I would recommend you consult a doctor that is knowledgeable in this area. The only doctor I am aware of that treats benzo withdrawal and understands it very well is Dr Jozef Witt-Doerring. But I have to let you know he is quite expensive. 

We will try and help you but I want the best for your son and because he won't be able to communicate the severity of his symptoms during tapering it might be better for him to have an expert medical professional on board. Especially also considering his treatment going forward. 

Just one more thing I want to add, the pacing is a well known withdrawal symptom and known as akathisia. 

Please let me know how you feel about my suggestions. We are here to support you in any way we possibly can.

[[Mi...]]

Hi @[je...], thank you so much for your prompt response and your kind words, really appreciate the support and info.  I hadn't heard of kindling in this context but I guess it's not too surprising, but really really scary and upsetting considering we don't really have any option but to use benzos to stop the seizures when they get bad 😩  I already had Dr. Witt-Doerring's profile pulled up on my phone, I had been looking at all the doctors on the medical advisory board of the Benzodiazepine Information Coalition (which is where I heard about Benzo Buddies) to see if any of them have pediatric experience, because frequently doctors don't want to touch kids with a ten-foot pole if they don't have the training.  But it's definitely worth a shot, I'll contact his practice and see if he might be able to help!

[[je...]]

@[Mi...], you're doing such an awesome job caring for your son. As a mother myself, I cannot imagine what it must be like going through something like this. We just want to protect our kids and make things better. 

I know the kindling fact is disturbing and unsettling. I'm sorry.  And that's why I feel a medical professional is your best option going forward because of your future treatment requirements. Kindling has not been scientifically researched in benzos but it's generally accepted as something that occurs. We see it happening here all the time. I hope they can find a way to make it work for him.

We would love to keep supporting you if you need us. We know it's not just your son going through this, but you as well. Stay strong mom, everything will be okay!

[[je...]]

Oh and @[Mi...] well done for figuring out what is happening with your son! Many people go through withdrawal for years and never know what is happening to them. You did exceptionally well!

[[Co...]]

Hello @[Mi...]

I am not sure I totally understand your son's usage history - a few rounds of very short term use - yes? Irrespective, this is a serious medical situation. In good conscience, the only advice I can give you is to seek a second opinion from another, experienced neurologist. Ideally, at a teaching hospital where there is broader and deeper knowledge. Your son's situation is much more complicated than dealing with benzodiazepine withdrawal symptoms. If he is suffering withdrawal symptoms or not, his serious seizures disorder requires management by an experienced neurologist.

[[Li...]]

Hello @[Mi...].  

 

Your story breaks my heart.  

I agree with @[Co...] about getting a second opinion.

If you have not already done so, you could try contacting the nearest University Center for Excellence in Developmental Disabilities (UCEDD) to ask if they might be of assistance.  Here’s a link to a directory of UCEDD programs by state:

https://www.aucd.org/directory/directory.cfm?program=UCEDD

 

[[Mi...]]

@[je...] thank you so much, unfortunately we figured it out so easily because my mom went through a year of panic attacks after she learned about the risk of dementia with long-term benzo use and stopped taking a very low dose of Ativan cold-turkey...so when my son seemed to be having a continuous panic attack and we realized it started the day he stopped the diazepam, it seemed pretty obvious what the cause was   I don't think my son's situation could've been avoided because it seemed like a very reasonable taper given his short length of time on the drug, but I really wish more doctors were aware of these risks and symptoms, warned patients about them, and knew how to competently manage them!!

[[Mi...]]

@[Co...] and @[Li...], thank you so much for your suggestions!  I've already consulted two other neurologists at other institutions, unfortunately neither of them seemed very familiar with such an extreme withdrawal situation, and only one of them gave concrete recommendations for a taper that seemed probably still too fast...but the UCEDD list is extremely helpful, I have some connections with UCLA neurology and will definitely give that a try.  Thank you all so much for your kindness and concern!

[[Li...]]

Hello again @[Mi...].  

You are most welcome. I’m glad the UCEDD directory was helpful and delighted you have connections with UCLA neurology. 

Finding a pediatric neurologist who is at least somewhat ‘benzo aware’ will be a challenge, but I get the sense you are a strong and determined person who will keep at it until you succeed in doing so.

As you may already know, obtaining diazepam in a dosage form and potency that can be used for tapering could also be a bit of a challenge.  The lowest dose tablet available in the US is 2mg and the commercially manufactured liquids and rectal gels contain propylene glycol (young children are unable to fully metabolise propylene glycol, which can lead to accumulation and toxic effects).  

Happily, I found at least one liquid formulation that does not use either propylene glycol or ethanol (another no-no for young children) and have included the link below.  Consequently, I’m confident that a compounding pharmacist at a children’s hospital would be able to prepare a suitable formulation for your son if needed.

I am sending all good thoughts your way for a positive outcome.  Your son is a fortunate fellow to have you as his mom!

Link:

Barbosa R, Capela A, Sampaio C, et al 3PC-028 Compounding an oral liquid formulation of diazepam alcohol free. European Journal of Hospital Pharmacy 2020;27:A34-A35.  Accessed online at: https://ejhp.bmj.com/content/27/Suppl_1/A34.2

 

[[Co...]]

11 hours ago, [[M...] said:

@[Co...] and @[Li...], thank you so much for your suggestions!  I've already consulted two other neurologists at other institutions, unfortunately neither of them seemed very familiar with such an extreme withdrawal situation, and only one of them gave concrete recommendations for a taper that seemed probably still too fast...but the UCEDD list is extremely helpful, I have some connections with UCLA neurology and will definitely give that a try.  Thank you all so much for your kindness and concern!

You are welcome, @[Mi...]. And good luck.

9 hours ago, [[L...] said:

Finding a pediatric neurologist who is at least somewhat ‘benzo aware’ will be a challenge

They might not be any better aware than doctors generally about withdrawal syndromes, but they should be very aware of the potential for seizure upon withdrawal of benzodiazepines.* And particularly so for those who already suffer from a seizure disorder.

* My neurologist (the head neurologist at teaching hospital) was surprised by the extent of my withdrawal symptoms. But he was very willing to take on board my experiences and even volunteered that he appeared to have only made things worse for me (and he did this in front of a medical student). The very nature of medicine means that doctors will be regularly caught out. There are unknowns about causes in individual patients, unknown causes more generally, and genetic differences between us all. Trial and error is particularly relevant when treating neurological disorders. The important thing is that doctors remain open to learning.

[[Mi...]]

@[Li...] haha yes, you've correctly perceived that I don't give up easily   When we got the genetic test results and realized the severity of our son's ultra-rare disorder we actually started a foundation (www.cureKCNH1.org) and have brought together a team of scientists from around the world to advance research and develop treatments so that he can hopefully have a healthier and happier future...so I'm very used to tracking down obscure info and experts!

And because of all of our son's meds and some of the investigational treatments we've tried, I've also become good pals with our local compounding pharmacist.  We normally use a 5 mg/ml sublingual diazepam solution that's great for when our son is sick and it's hard to get meds down him, but obviously that's too concentrated to be able to finely tune the doses for a microtaper, so the pharmacist is currently compounding a 1 mg/ml solution.  I wasn't aware of the potential issues with the inactive ingredients (I would hope the pharmacist would be, but have learned that you can never just blindly trust!), so I'll definitely check what formulation she's using and pass along the link you provided, so thank you so much for finding that.

On a positive note, my son is doing so much better yesterday and today!  Still unsteady and needing hands-on at all times, but finally calming down enough to play a bit and get back to his therapies.  Which means we probably need to start the wean now that he's stabilizing, which is pretty nerve-wracking, but just hoping if we go slow enough we can keep him from getting too agitated again 🤞

[[Mi...]]

@[Co...] yes absolutely, it's kind of crazy to think that neurologists use these meds all the time with kids with existing seizure disorders, and don't warn families of the risk of seizures from withdrawing benzos too quickly.

I'm so impressed with your neurologist's humility and open-mindedness!  Sounds like a keeper for sure 👌

[[Md...]]

So sorry to hear about your situation. I’m not at all surprised by your neurologist ghosting you. I too have a rare condition that I’ve been taking benzos for, and neurologists have been absolutely useless.

To make matters worse, doctors don’t know anything about benzo ramifications, especially if it involves children. It actually baffles me that any doctor would prescribe benzos to a toddler, especially since there are a multitude of anticonvulsants out there, but at the same time, I’m not surprised that your doctor prescribed your child benzos, and Im willing to bet your doctor didn’t warn you about the dangers of them either?

I do agree with Jelly Baby though.
Dr. Josef Witt-Doering is in a league of his own. He’s my personal benzo psych and probably understands benzos better than any other doctor. He was able to stabilize me from the interdose withdrawals i was having from Xanax. He’s expensive, but it’s hard to put a price on that kind of relief that my local doctors could not provide. 

Out of curiosity, have you tried Oxcarbazepine (I'm sure you have)? This medication is an anti convulsant that has some studies, as well as several anecdotal reports showing that it may stabilize people from benzo withdrawal side effects. 

There is also another medication that will hopefully be soon released. They are finding promising results in the studies for seizures, neuropathy, depression, and even benzo withdrawal. It’s called Basimglurant. It might be worth looking into. The tests have been so promising that the FDA is fast tracking this medication, and just fyi, only about 25% of medications are fast-tracked.

I think the bright side is that because your son is so young, there is plenty of time for him to heal. They’re also always working on new and safer medications as well to help treat rare conditions. 

Either way, I sincerely wish you the best of luck and love with your situation, and Im glad to hear that your son seems to be doing a little better.

Edited December 9, 2023 by [Md...]

[[Co...]]

9 hours ago, [[M...] said:

To make matters worse, doctors don’t know anything about benzo ramifications, especially if it involves children. It actually baffles me that any doctor would prescribe benzos to a toddler, especially since there are a multitude of anticonvulsants out there, but at the same time, I’m not surprised that your doctor prescribed your child benzos, and Im willing to bet your doctor didn’t warn you about the dangers of them either?

Benzodiazepines are very useful anticonvulsants. They are true lifesavers in cases of status epilepticus seizures. They are very effective, work quickly, and with a very low toxicity profile - that's why they are the first line of treatment for these types of seizures.

Additionally, benzodiazepines are sometimes the only effective anticonvulsant for some chronic seizure disorders. Sometimes, they are the only realistic treatment for anyone, including for children.

[[Md...]]

4 hours ago, [[C...] said:

Benzodiazepines are very useful anticonvulsants. They are true lifesavers in cases of status epilepticus seizures. They are very effective, work quickly, and with a very low toxicity profile - that's why they are the first line of treatment for these types of seizures.

Additionally, benzodiazepines are sometimes the only effective anticonvulsant for some chronic seizure disorders. Sometimes, they are the only realistic treatment for anyone, including for children.

Except they can eventually cause or complicate serious issues, like this particular one, so justifying the intake of benzodiazepines, no matter the cause, can be a slippery slope, especially when doctors don’t even warn patients about the ramifications, which happened so often that the FDA had to release new warnings to prescribers back in 2020.

Believe me, i know where you’re coming from. Like i said, i developed a rare and beyond debilitating/excruciatingly painful condition about 8 months ago. This condition only happens to 1% to 3% of the entire population, and benzos were my saving grace (so take all this from someone who battled with suicide ideation due to such severe pain). Because doctors are so uneducated with this condition, I had to educate myself as to why benzos seemed to be the magic bullet for my pain, and many of the reasons are the ones you pointed out.

But if benzos didn’t turn on me, like they do with a lot of us, then i certainly wouldn’t be on these forums, nor would this poor Mother who is now trying to find solutions to this terrible situation.

And If doctors are going to prescribe benzos (especially to children), then they better be prepared and educated enough to handle the situation when things go south. Unfortunately, that’s generally not the case, as we’ve seen here, and in a multitude of other cases.

Benzos work great, until they don’t, and doctors often bail on their patients or become completely unhelpful when things become too complicated, as this Mom has already pointed out. I personally have had to deal with this type of behavior from doctors myself, so I can’t even imagine what it would be like to be the parent of a child who is experiencing this. 

Regardless, I do see your point, i really do, and maybe there is a place for benzos when desperate times call for desperate measures…maybe.

 Unfortunately, there’s just so many complications that can arise not just from benzos themselves, but the healthcare system as well, because doctors are generally uneducated when it comes to the dangers and ramifications of this medication, and are not taught how to appropriately respond to patients with even basic withdrawal symptoms, let alone rare and complicated situations like this one. 

 

 

 

Edited December 9, 2023 by [Md...]

[[Li...]]

 

You take “don’t give up easily” to a new level, @[Mi...]! The work you and your foundation are doing to advance research and develop treatments for KCNH1-related disorders is amazing. 

Thank you for sharing the double good news that your son seems to be stabilizing and you already have a relationship with a compounding pharmacist.   

If you feel comfortable doing so, please let us know what you discover about the ingredients for the compounded 1mg/mL diazepam solution.  We’ve had members who could not tolerate the manufacturer’s 1mg/mL oral diazepam solution so are always on the lookout for alternatives.

In addition to inactive ingredients, it would be helpful to learn what your compounder is using for the active ingredient (bulk powder or tablets) and whether or not the formulation has been stability-tested. 

PS  Perhaps of interest to you and your son’s care team:

Frequency, risk factors and symptomatology of iatrogenic withdrawal from opioids and benzodiazepines in critically Ill neonates, children and adults: A systematic review of clinical studies - Duceppe - 2018 - Journal of Clinical Pharmacy and Therapeutics. PDF available online at: https://onlinelibrary.wiley.com/doi/epdf/10.1111/jcpt.12787

 

[[An...]]

Wow, like others have commented, this is really heartbreaking. I think any advice regarding a taper would be inappropriate for me to give, given your son's age and medical condition. I truly hope you can find a licensed medical professional who can help you with this.

[[Mi...]]

@[Md...] I'm so sorry to hear that you also are dealing with a rare condition, and benzo issues, that your local doctors have been wholly unequipped to help with!  That's really helpful to hear about your positive experience with Dr. Witt-Doerring, I've sent him an email and very much hope that he can help.  I'm familiar with oxcarbazepine but that's not one my son has tried yet, after his recent hospitalization he was put on Depakote, which is the drug that seems to work best for the kids with his genetic disorder.  Very interesting to learn about basimglurant, I looked it up and apparently it was initially developed for a neurodevelopmental disorder somewhat similar to my son's...it looks like a very promising drug since it's so selective, that's exactly the type of thing we're trying to develop for my son's disease!  Anyways, thank you so much for the info, and best of luck with your own health journey!

[[Mi...]]

@[Md...] and @[Co...] you both make excellent points.  As @[Co...] said, there is a lot of research on the use of benzos for seizures, there are good reasons why they're the first-line treatment in the case of status seizures (which my son has), and when you're dealing with status the most important thing is to stop the seizure as quickly as possible.  This is why I'm very much hoping Dr. Witt-Doerring might be able to help us develop an appropriate taper plan, since unfortunately we'll probably have to use benzos again in the future   I personally know dozens of rare-disease families whose kids have epilepsy and have taken benzos either acutely or long-term with no issue, and clearly the neurologists I've spoken with have probably treated hundreds or thousands, and none of them seem to have ever heard of such an extreme reaction as my son's.  So my son is clearly the exception to the rule, but that doesn't change the fact that doctors in general need to be more aware of the risks, and warn families of them, so that at the very least people can be able to identify what's happening, even if there may not be a way to completely avoid benzos.

[[Mi...]]

@[Li...] thank you so much for taking the time to check out our website, you're so kind!!  I've pretty much poured my life into the research and the foundation the past two years since my son was diagnosed, but if we can help him and the other KCNH1 kids have a better future it will all be worth it.

I have an alarm set for Monday to ask the pharmacist about her formulation, and will pass along!

Thank you so much for sharing that fascinating meta-analysis!  It's so odd, as I mentioned to Colin and Mdfox1, I know tons of other rare-disease families whose kids have epilepsy and have taken benzos with no issue, and none of the doctors I've spoken with seems familiar with such extreme withdrawal symptoms as my son experienced, but that paper makes it sound like it's really not that uncommon and frequently happens after just 3 days of use 🤷‍♀️

[[Mi...]]

Thank you @[An...]!  I've emailed the doctor recommended by a couple people on this thread, really hoping he'll be able to help.  But I'm already feeling so much better since my son is finally calming down the last couple days, and hopeful that we might be able to avoid terrible withdrawal symptoms if we go slow enough with the taper.

[[Md...]]

1 hour ago, [[M...] said:

@[Md...] I'm so sorry to hear that you also are dealing with a rare condition, and benzo issues, that your local doctors have been wholly unequipped to help with!  That's really helpful to hear about your positive experience with Dr. Witt-Doerring, I've sent him an email and very much hope that he can help.  I'm familiar with oxcarbazepine but that's not one my son has tried yet, after his recent hospitalization he was put on Depakote, which is the drug that seems to work best for the kids with his genetic disorder.  Very interesting to learn about basimglurant, I looked it up and apparently it was initially developed for a neurodevelopmental disorder somewhat similar to my son's...it looks like a very promising drug since it's so selective, that's exactly the type of thing we're trying to develop for my son's disease!  Anyways, thank you so much for the info, and best of luck with your own health journey!

Thank you, I appreciate that. My journey is going to be a long one, and It actually may become a situation where I still have to take benzos if this pain comes back full throttle while I’m tapering, because no one can live with 20/10 pain. Fortunately, i am working with an amazing pain management physician, and quite arguably the best benzo psychiatrist in the world.  I am very fortunate in that regard.

I too believe @[Co...] made some excellent points. Sometimes, you have to pick your poison, as unfortunate as they may be. I just wish doctors were more educated and helpful, instead of leaving certain patients left in the dark, or sometimes making situations much worse. It personally took me 8 months to find the right doctors, and even then, it’s still a dark and lonely place to be when most people don’t understand what you’ve been through, so I can most certainly sympathize with you. I also have a toddler myself, so my heart truly goes out to you.

I sincerely hope that your research teams finds exactly what your son needs. I actually think it’s amazing that you were resourceful enough to find the right team to develop a possible solution. I have a lot of admiration and respect for you to do that!

Also, you are 100% correct about Basimglurant, as it is very selective. It’s actually the only anticonvulsant I know that targets a specific glutamate receptor (mGluR5). They must have found something very unique about this particular receptor, because they have been testing it for a number of conditions, and all the results have been incredibly promising. 

I think brass tax is that we just need better medication, especially for rare and debilitating conditions.

Btw, have you used ChatGBT at all? I personally have found it to be very helpful at times. 

Edited December 10, 2023 by [Md...]

[[Mi...]]

@[Md...]  I'm so glad to hear you finally found some doctors who could help, but chronic pain is just awful, my heart really goes out to you and what you're dealing with.  100%, we absolutely need better medications for these types of diseases, and of course there's no incentive for Big Pharma to develop them for tiny patient populations, so a lot of us rare-disease parents are advocating hard for more governmental funding for this research (and honestly, just like basimglurant I'm sure we'll find lots of other applications for them once they're developed, most of these rare diseases have connections to more common conditions, so I think it's a perfectly sensible use of government funds!).

I hear you for sure about the isolation, it's such a lonely feeling to go out into the world and feel like your life is so different from everyone else's and nobody knows or understands what you're going through.  My husband is a very private person so he was a bit hesitant to share our story publicly, and I hate social media, but we started Instagram and Facebook accounts for our son and even did a big lawn sign campaign around our neighborhood to increase awareness; of course no one can fully get it if they haven't lived it, but at least they have some sense of what's going on and we don't feel like we have to strap on that fake smile if it's a bad day, which really helps.

I haven't really checked out ChatGPT too much!  What kinds of things do you use it for?

[[Md...]]

4 hours ago, [[M...] said:

@[Md...]  I'm so glad to hear you finally found some doctors who could help, but chronic pain is just awful, my heart really goes out to you and what you're dealing with.  100%, we absolutely need better medications for these types of diseases, and of course there's no incentive for Big Pharma to develop them for tiny patient populations, so a lot of us rare-disease parents are advocating hard for more governmental funding for this research (and honestly, just like basimglurant I'm sure we'll find lots of other applications for them once they're developed, most of these rare diseases have connections to more common conditions, so I think it's a perfectly sensible use of government funds!).

I hear you for sure about the isolation, it's such a lonely feeling to go out into the world and feel like your life is so different from everyone else's and nobody knows or understands what you're going through.  My husband is a very private person so he was a bit hesitant to share our story publicly, and I hate social media, but we started Instagram and Facebook accounts for our son and even did a big lawn sign campaign around our neighborhood to increase awareness; of course no one can fully get it if they haven't lived it, but at least they have some sense of what's going on and we don't feel like we have to strap on that fake smile if it's a bad day, which really helps.

I haven't really checked out ChatGPT too much!  What kinds of things do you use it for?

I actually use ChatGPT in place of Google quite a bit. It’s usually very accurate, and gets straight to the point with answers worth exploring. 

The particular app I use is called ChatBox AI. You just type in your questions and it provides you with fast responses. 

In fact, there was a mother who used ChatGPT to diagnose her son’s condition after seeing 17 doctors that couldn’t or wouldn’t do anything to help.

Here’s an article on that. 

https://www.insider.com/chatgpt-diagnose-child-disease-tethered-cord-syndrome-doctors-2023-9?amp