Rage Episodes

[4Nikki]

So what is the name of the stimulant medication that you are trying?

 

Dr. I prescribed "Vyvanse". 20 mg to start, I'm not sure what exactly is in it. The ingredient in the Advil Decongestant is Phenylephrine HCl 30 mg.

[Dedee]

Interesting. Yes, that is often used for ADHD. Let us know how things go.

[T_Mom]

We have had 2 very serious extended raging episodes, OCD-connected raging for months, two years ago, and then this past year during another exacerbation.

 

Both times, immune modulating therapies finally helped bring my d out of it. S

he is now, having lost another year of life, now coming out of it again--after plasma pheresis. The first time, IVIG brought her out of it.

 

She is 4 months post pheresis and finally, thankfully, returning to herself with week by week improvements.

 

For us, the rages were serious, out of control, with no provocation, no warning, and always OCD connected--once triggered the rages did not stop no matter what we did, tried, etc.

 

We spent a great 3 weeks with the team at the Rothman Center post plasma pheresis. Our therapist was incredible--an amazing young woman. Our d was "open" to it, and able to be encouraged and supported by the therapy received there--still, it was a "help" at that point, a very important help, but the physical aspect of her healing had to happen first in order for her to be available to the therapy.

 

Do I believe the rages were physical in nature, absolutely as we have seen them melt away post IVIG or pheresis.

[4Nikki]

On a scale of 1-10:

8-10 Requires restraining and protecting her screaming is over the top. Totally Exhausting

5-7 Requires close watching and blocking to help her control as she is trembling and screaming. Heart breaking

3-5 She is able to control in her safe place but needs to vent. Very worrisome.

1-2 She is able to self Control. Troubling

 

Dr. I says the Vyvanse 20 mg lasts for 12 - 13 hours.

 

She was Raging last month at a 8, 9 or 10 daily until we started with the Advil D 30 mg. When I had given a lower dose of the Advil D 10 mg, instead of 30 mg she had a little shouting in the bathroom for about 5 minutes about a 2 on the scale. We think the dosage Vyvanse 20 mg is too low. We have been giving it early in morning but she starts getting on edge around 8 pm in the evening, Whereas before. we were giving the Advil D. twice a day 10 am and 5 pm without episodes and she was sleeping 10-11pm with sleep drops which Dr. I prescribed to replace the Benadryl we use on occasion to help her sleep.

 

Vyvanse 20 mg at 7 am, the problem now is she is not getting sleepy until 3 am since we started the Advil D to help with the evening edge. Mom made an adjustment of giving adding Advil at 5pm till She will see Dr, I on Monday.

[T_Mom]

I truly hope you are able to get some relief...

It is exhausting and a nightmare for everyone involved.

 

Seems to if Advil is having such a dramatic effect that you are dealing with obvious inflammation and need to bring out the "big" guns to stop it.

 

Is it Dr L you see? -- hope so

[4Nikki]

Update:after going back to the doctor and getting an increased dosage of 30 mg Vyvanse we noticed. Dd starting back with increasing intensity. We abandonded the Vyvanse and went back to the Advil D. and the rages stayed away. We have moved to Washington and will be getting a new doc. I hope we will be able to find the cause. Dd mri showed her brain normal without inflamation so im wondering if it is actually inflamation or some sort of reaction to the histimine. Regular advil or ibprophen help curb the rage but is not as effective as advil decongestant.