Diazepam taper for disabled toddler

[[Mi...]]

Very good to know, I'll definitely check it out, thanks @[Md...]!

[[Mi...]]

On 09/12/2023 at 08:10, [[L...] said:

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. 

Hey @[Li...]!  So I asked the compounding pharmacist about the formulation, and in fact it does use propylene glycol 😬 I'm not quite as concerned about the diazepam since we've been using the concentrated 5 mg/ml solution, so the volume has been quite low (and based on what I'm reading, it's *usually* safe in low doses), but I wonder how many of my son's other medications also contain propylene glycol.  Oy, so many things to worry about with him with medications, as if his disabilities and medical issues weren't enough!!  Anyways, the pharmacist said the formulation is just diazepam (bulk powder), propylene glycol, and a bit of stevia, and that it has been stability-tested.  I don't know if that's really any different than the manufacturers' solution, but hope it might be helpful!

[[Co...]]

14 minutes ago, [[M...] said:

So I asked the compounding pharmacist about the formulation, and in fact it does use propylene glycol 😬

Propylene glycol is used in many drug and food products. Although we should not rule out edge cases (allergic reactions), I am not aware of any credible information questioning its safety with normal consumption.

https://en.wikipedia.org/wiki/Propylene_glycol#Oral_administration

https://en.wikipedia.org/wiki/Propylene_glycol#Allergic_reaction

I expect that you would already know if your son was allergic to PG.

[[Li...]]

Greetings, @[Mi...].  

Thank you so much for asking your compounding pharmacist about the formulation and sharing it with us!  That’s great news that it has been stability tested.

Re: propylene glycol …

My understanding is the same as yours - propylene glycol is *usually* safe in low doses.  However, you are wise to wonder about other medications that might contain propylene glycol, including medications that are administered via injection or (especially) IV in the ER/hospital. Per the papers linked below:

“Clinical toxicity has been well described in both adults and children receiving PG-containing medications including lorazepam, diazepam, pentobarbital, trimethoprim-sulfamethoxazole, esmolol, phenytoin, phenobarbital, etomidate, nitroglycerin, multivitamin preparations, and silver sulfadiazine.”

“Although PG is considered safe for use as a vehicle for intravenous medications by the US Food and Drug Administration, at high levels, PG can accumulate and cause lactic acidosis, CNS depression, coma, hypoglycemia, seizures, and hemolysis. Patients at risk for toxicity include infants, patients with renal insufficiency, patients with epilepsy, or burn patients who receive extensive dermal applications of PG.”

FYI … 

You can find out if a given medication contains propylene glycol by reading the Ingredients section of its official FDA Drug Label (available online via the DailyMed database). For example, the 5mg/mL diazepam oral concentrate contains propylene glycol as well as 190mg of alcohol per 1 mL.  See link to label below.

Links:

Propylene Glycol Toxicity in Adolescent with Refractory Myoclonic Status Epilepticus - 2017
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5346383/

Propylene Glycol Toxicity in Children - 2014
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4341412/

DailyMed - DIAZEPAM INTENSOL solution, concentrate
https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=1aaf9375-ae3d-4fed-9cd1-24102e00be1a

 

[[Mi...]]

On 08/12/2023 at 17:45, [[M...] said:

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. 

 

@[Md...] and @[je...] I just wanted to follow up and let you know I finally had a chance to meet with Dr. Witt-Doerring this week, and it was really helpful, thanks again for the referral!  We've been doing a slow taper with my son that has been going really well (have had to hold/slow it a couple times when he's had medical issues or started to show withdrawal symptoms), but it was really nice to be able to consult someone knowledgeable about a protocol for actually ending the taper, which is when my son had trouble last time, and also a protocol for future tapers if we need to use benzos again for seizures.  Thanks so much for all of your suggestions!

[[Mi...]]

Hi @[Co...] and @[Li...], I'm so sorry, I just realized I never responded to your last comments!  Just wanted to say thank you so much for all the info and resources, we've been going very slowly with my son's taper due to a couple of medical issues and one instance of a minor return of withdrawal symptoms, but overall he's doing very well and we hope to be able to finish the taper in the next few weeks.  I also was finally able to find a neurologist who seemed to have a bit more experience with this topic, and also consult with Dr. Witt-Doerring this past week, so I think we have some decent plans in place for the future if we unfortunately need to use benzos again for seizures.  Hope you're well, and thanks again for your time!

[[Md...]]

8 minutes ago, [[M...] said:

@[Md...] and @[je...] I just wanted to follow up and let you know I finally had a chance to meet with Dr. Witt-Doerring this week, and it was really helpful, thanks again for the referral!  We've been doing a slow taper with my son that has been going really well (have had to hold/slow it a couple times when he's had medical issues or started to show withdrawal symptoms), but it was really nice to be able to consult someone knowledgeable about a protocol for actually ending the taper, which is when my son had trouble last time, and also a protocol for future tapers if we need to use benzos again for seizures.  Thanks so much for all of your suggestions!

That’s excellent news! Thank you for sharing. I wish you and your family the very best of luck with everything. ❤️

[[Co...]]

Hello @[Mi...]. Thank you for the update. Sounds like things are going well you and your son. I am glad that you managed to find a more suitable neurologist. And I hope things continue to go well for you both.

[[ns...]]

On 08/12/2023 at 15:26, [[M...] said:

@[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 🤞

Amazing!

[[je...]]

I'm so glad your son is doing well. Thanks for the update. 

[[ns...]]

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

@[Md...] and @[je...] I just wanted to follow up and let you know I finally had a chance to meet with Dr. Witt-Doerring this week, and it was really helpful, thanks again for the referral!  We've been doing a slow taper with my son that has been going really well (have had to hold/slow it a couple times when he's had medical issues or started to show withdrawal symptoms), but it was really nice to be able to consult someone knowledgeable about a protocol for actually ending the taper, which is when my son had trouble last time, and also a protocol for future tapers if we need to use benzos again for seizures.  Thanks so much for all of your suggestions!

This is such an amazing story. I'm so very happy for you and your son and grateful hes doing better. Happy to know dr Witt is helpful for you as well, This is such great news!

Ns

[[Mi...]]

7 minutes ago, [[n...] said:

This is such an amazing story. I'm so very happy for you and your son and grateful hes doing better. Happy to know dr Witt is helpful for you as well, This is such great news!

Ns

Thanks @[ns...]!

[[Mi...]]

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

Hello @[Mi...]. Thank you for the update. Sounds like things are going well you and your son. I am glad that you managed to find a more suitable neurologist. And I hope things continue to go well for you both.

Thanks @[Co...], same to you!

[[Mi...]]

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

That’s excellent news! Thank you for sharing. I wish you and your family the very best of luck with everything. ❤️

Thanks @[Md...], best of luck and wishes for health for you as well!!

[[Li...]]

Thank you for coming back to share your heartwarming and uplifting update with us, @[Mi...].  Congratulations and well done on getting your son the help he needs — you are one fierce Mama Bear!

[[Mi...]]

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

Thank you for coming back to share your heartwarming and uplifting update with us, @[Mi...].  Congratulations and well done on getting your son the help he needs — you are one fierce Mama Bear!

Thanks so much @[Li...]! 👊  Sending wishes for a happy and healthy 2024