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pr40

Ketamine -- any experience, please?

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We are looking for a new line of treatment beyond abx. We tried clonadine, tenex -- first three days, positive, negative after that -- and now more recently abilify. WIth the last one, we had a bit more success and are still looking for medication to deal with ds's very frequent rages and extreme irritability. we have gotten here after about 2 years that were mostly quite.

The latest one, because of the NPR two recent reports, we would like to try is KETAMINe and I want to ask you all for your experience with it.

thanks in advance.

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So just curious...why ketamine instead of IVIg or plasmapheresis? Ketamine is a heavy hitter and not much fun side effects-even if they are temporary...

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My PANDAS daughter, age 11, was recently given Ketamine as a sedative to insert her central line for Plasmapheresis. She FLIPPED OUT!! Started having full body tics that gave way to leg tremors and ultimately ended in hallucinations. Why in the world would you give Ketamine as a treatment? I understand it's use as a sedative and it's very common to give with surgical patients.

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Here's a recent review article on Ketamine (and other anti NMDA receptor antagonists). Ketamine is showing promise as a treatment for depression. I haven't heard of it being used for PANDAS and I doubt you could get a MD to rx it? Also, if it's like treating depression, you would need multiple infusions to maintain any improvement.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4416968/


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the reason we are considering ketamine are ds's symptoms. they are not only pans but include also irritability and lack of control. We also tried everythign else we knew except IVIG which we are not sure how to get since ds does not have OCD symptoms anymore.

I listened to NPR then came across this site

http://bipolarchild.com/ketamine/

and yet, ketamine can have terrible side-effects but for our ds we are not considering high but rather very, very low doses that would, indeed, need to be repeated perhaps every 3 day or so.

thanks for responding.

Edited by pr40

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pr40 - hello, I was just wondering why you consider the irritability and lack of control to not be part of the PANS? I know all our kids are different but for my ds and dd irritability has always been part of their PANDAS/PANS picture and for ds lack of control and impulsivity is one of his most troubling/difficult to handle symptoms. Don't mean to second guess you but just wondering if it could all be PANS...

 

 

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Dut -- thanks for the question. I do consider it a part of the PANS. My question is what could help ds and he meets no only criteria for PANS but also for bi-polar disorder as they are defined by the physician (Papolos) who started ketamine treatment for children. Ds runs very hot and, apparently, temperature disregulation is the basic symptom that ketamine helps with. Ds is helped by ibuprofen which too lowers his temperature.

And then also because ds does not have obvious OCD, he does not qualify for IVIG in PANDAS dr's minds.

We are grasping for straws.

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hello pr40 - glad you didn't hate me for the question. Nothing worse than strangers trying to tell us what's going on with our own kids :) We've had a h**l of a time trying to track down triggers for our 2. Abx would sometimes work, sometimes not. Ds is the one with lots of impulsivity, not being able to control himself, rages. For him we use acyclovir and although it doesn't get him 100% of the time it has been far better than abx for him. Have you ever tried any antivirals? did they do anything?

 

good luck, hope he and you get some relief.

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thanks, dut. I saw your question as a sign of care, not hate.

I was thinking of an antiviral but am not sure who would give it to us.

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So is this is just an intranasal spray? I assumed this was an infusion like for depression. I know somebody that had such an infusion and it took a few hours. I can't imagine doing the infusion every 3 days (well I could, but it would be a lot of work).

 

The bipolar boy in the NPR interview sounded very PANDAS-y.

​Does your child overheat at night easily?



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Anyway, I haven't heard of a PANDAS kid using ketamine but it sounds like you would know pretty quickly if it helped or not?

​It sounds like Early Onset Bipolar is a controversial diagnosis. I wonder how many of those kids are really PANDAS/pans?

​OMG...one of the people in the youtube video has both bipolar and narcoplepsy. Strep has been associated with narcolepsy. They think narcolepsy is autoimmune and strep can be a significant trigger.

Edited by eamom

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I was asked to respond to this by Lisa Moore after she saw a post on another site that said we have Ketamine IV Therapy experience. My daughter, age 17 + 11/12 (18 real soon) recently was administered Ketamine IV's for her medication resistant depression / anxiety / PTSD....she has been diagnosed with psychogenic non-epileptic seizures (PNES) which I only have buy....I know she has been injured by the HPV Vaccine, Gardasil. Gardasil has caused autoimmune encephalitis....triggered a dormant Lyme and POTS, PANS, neuropathy, and other syndromes and illnesses, Candida in the gut, leaky gut, - My daughter's doctor gave 6 Ketamine IV's: small dose 2 x a week for 3 weeks.....we are now one week beyond Ketamine and waiting and watching for a response....Typically the research shows very good results and with some results after the first IV.....my daughter did not respond like that. We paid $3,000 for this therapy which is not covered by insurance because it seemed to be much more than a band-aid....Ketamine IV Therapy is supposed to regenerate the branches of nerve connections....repair....get the neurons talking to one another. Sadly, we have not seen this yet. The first 4 IV's were tolerated very well with pretty loopy during the IV.....this was amusing and just went away after the IV was done. The last two IV's got a different response....bad thoughts of suicide and panic, etc. - I wish I can be more positive...I will update this information and reply if something changes.

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indeed, Early Onset Bipolar is quite controversial. At this point, we don't care what we call it but what we can do about it. ketamine is not a cure of the kind that IVIG is for some kids but it is very effective with symptoms for at least some kids with our ds's symptoms.

 

yes, our ds has daily night sweats, very profuse. he is also often too hot.

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I just found a new article on ketamine. its mechanism of action has been discovered.

this is the gist. It refers to an element of ketamine that is active against depression:

"Notably, unlike ketamine, the compound does not inhibit NMDA receptors. It instead activates, possibly indirectly, another type of glutamate receptor, α-amino-3-hydroxy-5-methyl-4-isoxazole propionic acid (AMPA). Blocking AMPA receptors prevented the antidepressant-like effects of (2R,6R)-HNK in mice. The experiments confirmed that the rapid antidepressant-like effects require activation of AMPA receptors, not inhibition of NMDA receptors."

study is here if you are interested

http://medicalxpress.com/news/2016-05-ketamine-depression-byproduct-metabolism.html

Edited by pr40

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