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Default Aug 31, 2018 at 07:05 AM
  #21
It is always a pleasure to help. I read up on all these things on any case, so may as well discuss it amongst you people.

That hyper-focus on one specific thing, as well as the agitation being displayed whilst repeating the action, may both be the symptoms of AS. They are actually symptoms of AS.
So yes, stimming.

Yes, the rigidity and change causing distsress are both other symptoms of AS. These things are definitely something that can cause agitation.
Ah, now that I think of it! Some of that agitation may likely be caused be things like an unexpected night out to a restaurant, for example. It can be extremely distressing.

So no sudden shift may indicate that it is the AS, though a doctor would be able to say for sure.

Hope this helps!

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Default Aug 31, 2018 at 07:13 AM
  #22
hi. risperidone is good for some people. not a big fan myself, but i think it may have been because i had to take in a hospital, so i associate(d) it with the more draconian elements of psychiatry. anyway...

try to press to get his prolactin levels check, frequently. i think elevated prolactin can be treated with an additional drug (what fun! LOL), but left untreated...bad stuff happens.

keep an eye out for EPS, TD. Risperidone can be fairly tolerable, but EPS and TD seem to be more of an issue with risperidone than with some other options, but...as long as the dose is kept low(ish), its probably better than an older tranquilizer (by lowish, I think I mean 4mgs or so...after that, EPS comes out in force, in big studies).

Other than that...

I just hope some sort of treatment ends helping, long term. sometimes, when i had more severe problems...my shrink would prescribe a 2nd tranquilizer to take on top of the daily one. so...20mgs/abilify, plus a low dose or risperidone to take if needed. that way, i could usually stay on the lower dose of daily tranq, and then still get the as needed tranq for when i was agitated. just a thought.
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Default Aug 31, 2018 at 08:44 AM
  #23
Geodon has worked great for my agitation (with some side effects). I passed out on Abilify and side effects on Seroquel.

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Default Sep 01, 2018 at 06:52 PM
  #24
Quote:
Originally Posted by still_crazy View Post
hi. risperidone is good for some people. not a big fan myself, but i think it may have been because i had to take in a hospital, so i associate(d) it with the more draconian elements of psychiatry. anyway...

try to press to get his prolactin levels check, frequently. i think elevated prolactin can be treated with an additional drug (what fun! LOL), but left untreated...bad stuff happens.

Ja, I've heard some of the stories.

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Originally Posted by still_crazy View Post
keep an eye out for EPS, TD. Risperidone can be fairly tolerable, but EPS and TD seem to be more of an issue with risperidone than with some other options, but...as long as the dose is kept low(ish), its probably better than an older tranquilizer (by lowish, I think I mean 4mgs or so...after that, EPS comes out in force, in big studies).

One of the problems is that my son has had compulsive tics on and off since he was 6 or so - which was long before he began taking psychotropic meds and their resurfacing/worsening seems independent of him not being on meds, though I know some of them make it worse and since he has been on Rispiridone, they have worsened noticeably. Giving Benadryl seems to help some.

Quote:
as long as the dose is kept low(ish),... (by lowish, I think I mean 4mgs or so...after that, EPS comes out in force, in big studies).
Really? hmmm...when we first had him on the Rispiridone (0.5mg 2X/day), we saw a noticeable improvement in his anger and more so, we noted that his opposition/incredible stubbornness about everything had opened up - which is something we never saw with Abilify or anything else. This improvement lasted maybe...2 or 3 days max before we started to see the improvement subside and reverse.

We were going to ask for an increase...my concern being he may be more susceptible to EPS, with his given transient or compulsive tic disorder (I thought Rispiridone was supposed to help with OCD, right? Which is related to compulsive tics)

I just hope some sort of treatment ends helping, long term. sometimes, when i had more severe problems...my shrink would prescribe a 2nd tranquilizer to take on top of the daily one. so...20mgs/abilify, plus a low dose or risperidone to take if needed. that way, i could usually stay on the lower dose of daily tranq, and then still get the as needed tranq for when i was agitated. just a thought.[/QUOTE]

So, by taking the Rispiridone, you were able to stay low on the Rispiridone? In our son's case, the Abilify helped (first year and 3/4 anyway) with his bad irritation but it made his mania/perseverance worse and seemed to do something to his executive function - not sure if we would want to go that route but ... not at least until we know if the Risp. is going to help at any dose.

Thanks a bunch!

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Geodon has worked great for my agitation (with some side effects). I passed out on Abilify and side effects on Seroquel.

When we switched from Abilify to Seroquel, there was a tapering period where he was on both, recall the pharmacists being quite concerned with that.

Thanks for the Geodon tip!


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Default Sep 02, 2018 at 07:02 PM
  #25
I have PDD-NOS and for me mixing an atypical anti-psychotic and a mood stabilizer has worked best. Currently taking Geodon 100 mg (40 mg AM, 60 mg PM) and Lamictal XR 75 mg and its helping. I've taken Seroquel and Abilify in the past, Seroquel worked better than Abilify, I only went off it due to weight gain. Abilify did give me Tardive Dyskensia at one point so that's why I went off that.
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Default Sep 03, 2018 at 06:18 PM
  #26
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Originally Posted by 88Butterfly88 View Post
I have PDD-NOS and for me mixing an atypical anti-psychotic and a mood stabilizer has worked best. Currently taking Geodon 100 mg (40 mg AM, 60 mg PM) and Lamictal XR 75 mg and its helping. I've taken Seroquel and Abilify in the past, Seroquel worked better than Abilify, I only went off it due to weight gain. Abilify did give me Tardive Dyskensia at one point so that's why I went off that.

Is Lamictal in the same class of compounds (antiseizure) that Gabapentin is in? I remember, it seems, that DS' PsyMD had said they (Gabapentin, etc) do not work with well with AS. Maybe I misheard.

There are ALOT of questions I've regarding PDD-NOS. I've not found too many keen on discussion (maybe I haven't asked the right questions at the right time, though)

Maybe you could keep a spot on for them as I manage to post them here and there in the Austism forum, if you're a mind to.

Cheers,

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Default Sep 03, 2018 at 07:34 PM
  #27
Lamictal was a wonder med for me. Unfortunately I did develop SJS and had to stop taking it. Autistic people with family with autoimmune illness should probably not take this med, and if the patient himself has any autoimmunities, they should absolutely not take Lamictal. They did not know this when I tried it. Too bad. It wasn't like gabapentin or anything like that for me.

If autism coexist with ADD/ADHD, a stimulant might help. Sometimes when they coexist, stimulants still don't help and can create problems. Different for different people.

Some people with autism tolerate neuroleptics quite well, but I seem to really need my dopamine. The only one in this class I tolerated at least a bit was Risperdal. The other ones, Seroquel, Geodon, made me feel like I was in HELL. Maan! It is hard to explain. I feel like the world is sometimes too close to me. Neuroleptics made me feel like I was even way closer to the world, and everything was hyper real. Like every impression, every thought, really got to me. Like I had no protection from anything. The world mentally scorched me.

Luckily I stopped having anger issues after getting on Luvox, sometimes other SSRIs can help as well. But all people don't have that kind of luck. It actually made me have a little more protection from the "world" but the med that helped most with that part was a benzo, and you don't give those to kids. About SSRIs, it is not like if you tried one you tried them all, I have tried several and all of them gave me different reactions.

My anger stemmed from everything being too close and getting to me. It is kind of hard to explain. I couldn't drop negative emotion, it just built up.

If he responds well to Benadryl, you could try the antihistamine path. Antihistamines are brutally sedative to me, even the non sedating ones. But we're all different. Antihistamines in psychiatric treatment are for example Vistaril, prometazine and doxylamine.

Personally SSRI+benzo dealt well with irritability and Ritalin made me less "autistic" even if they claim it makes autistic people more autistic. I was unhappy about being less though, so I just take it on rare occasions.

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Default Sep 04, 2018 at 12:22 AM
  #28
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Originally Posted by -jimi- View Post
Lamictal was a wonder med for me. Unfortunately I did develop SJS and had to stop taking it. Autistic people with family with autoimmune illness should probably not take this med, and if the patient himself has any autoimmunities, they should absolutely not take Lamictal. They did not know this when I tried it. Too bad. It wasn't like gabapentin or anything like that for me.

Corr blind me - you developed Stevens Johnson?!? From what I've seen of photos and all - its absolutely horrid! Look like plane crash victims. Nightmares...

I think I mentioned it already to someone but we had DS tested for an allele of a gene that if present, indicated a much higher risk. As his mum was of Asian descent (also higher risk for SJS), one did not want to have this strand of DNA and take medicines that had a high incidence of triggering it.

No known autoimmune disorder, though there is a penicillin allergy and looks like it'd be wise to have him take allergy shots for environmental triggers as pet dander, pollen, dust and moulde, I'm uncertain if that would increase his risk.


Quote:

If autism coexist with ADD/ADHD, a stimulant might help. Sometimes when they coexist, stimulants still don't help and can create problems. Different for different people.
He does. In fact, he was screened early on for severe ADD (war screened for AS as well, but they didnt catch it) and has taken those on and off. Do see def improvement but it wears off and when it does...bad, bad, bad. Also aggravates his on/off transient compulsive tics.

Quote:
Some people with autism tolerate neuroleptics quite well, but I seem to really need my dopamine. The only one in this class I tolerated at least a bit was Risperdal. The other ones, Seroquel, Geodon, made me feel like I was in HELL. Maan! It is hard to explain. I feel like the world is sometimes too close to me. Neuroleptics made me feel like I was even way closer to the world, and everything was hyper real. Like every impression, every thought, really got to me. Like I had no protection from anything. The world mentally scorched me.

Luckily I stopped having anger issues after getting on Luvox, sometimes other SSRIs can help as well. But all people don't have that kind of luck. It actually made me have a little more protection from the "world" but the med that helped most with that part was a benzo, and you don't give those to kids. About SSRIs, it is not like if you tried one you tried them all, I have tried several and all of them gave me different reactions.

My anger stemmed from everything being too close and getting to me. It is kind of hard to explain. I couldn't drop negative emotion, it just built up.

If he responds well to Benadryl, you could try the antihistamine path. Antihistamines are brutally sedative to me, even the non sedating ones. But we're all different. Antihistamines in psychiatric treatment are for example Vistaril, prometazine and doxylamine.

Personally SSRI+benzo dealt well with irritability and Ritalin made me less "autistic" even if they claim it makes autistic people more autistic. I was unhappy about being less though, so I just take it on rare occasions.
I've much to add here - but they be screaming at me to get off the computer, already.

More later!

Cheers,

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Default Sep 04, 2018 at 09:52 AM
  #29
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Originally Posted by DahveyJonez View Post
Is Lamictal in the same class of compounds (antiseizure) that Gabapentin is in? I remember, it seems, that DS' PsyMD had said they (Gabapentin, etc) do not work with well with AS. Maybe I misheard.

There are ALOT of questions I've regarding PDD-NOS. I've not found too many keen on discussion (maybe I haven't asked the right questions at the right time, though)

Maybe you could keep a spot on for them as I manage to post them here and there in the Austism forum, if you're a mind to.

Cheers,
Yes, Lamictal is also an anti-seizure med. I took Gabapentin for a few years and it helped me as well. For me Gabapentin was especially helpful because I have sensitive skin and one of the side effects is loss of feeling so it was actually a nice side effect for me. There is concern sometimes because of this though for a fear a child could cut their foot and not realize for example. Lamictal doesn't have the same loss of feeling effects though.

Sure, I'll keep an eye on the autism forum.
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Default Sep 04, 2018 at 03:49 PM
  #30
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Corr blind me - you developed Stevens Johnson?!? From what I've seen of photos and all - its absolutely horrid! Look like plane crash victims. Nightmares...
Everyone's case isn't as dramatic. I was more close to anaphylaxis than having a lot of skin involvement. The rash I had wasn't severe. They actually missed it at first because it didn't come with the rash first, it developed later. My main symptoms were high fever, very severe headache and body pain and very low blood pressure. I only had a rash on my arms and thighs that actually went away quite quickly and wasn't really bothersome, then I developed blisters in and around my mouth and they didn't stay for that long either.

Still the reaction could have lead to full anaphylaxis and death.

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Default Sep 04, 2018 at 06:43 PM
  #31
sometimes, a stimulant (upper) plus a tranquilizer/neuroleptic is a good option. I have an acquaintance (not with your son's set of problems, but...still...) who found relief from a broad range of "issues" with seroquel at night and an adderall xr capsule in the morning. the downside is I think there's some indication the TD risk goes up a bit, and if one gets problems from the neuroleptic (akathisia comes to mind), then the amphetamine or Ritalin can make it worse, not better. blah.

sorry about this situation.
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Default Sep 04, 2018 at 07:34 PM
  #32
For the very brief period of time I took Seroquel it totally wiped out any effect of stimulants. I think it has to do with how fast your body processes the neuroleptic. For some it goes faster.

The good thing with stimulants is that they don't need to be taken on a daily basis to work, one can take them when needed the most and then take breaks from them. Which is probably when they work the best.

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Default Sep 04, 2018 at 10:22 PM
  #33
dosing is an issue, too. it seems that neuroleptics=higher upper dosage to achieve whatever effects are being sought in treatment. Having said that...

for a while there, shrinks relied on "goof balls"--they were combo pills, part upper and part either sedative (usually a barbiturate) or carefully dosed neuroleptic. The ones w/ the upper and the neuroleptic were effective for weight loss, some forms of depression, etc., but there were also occasional horror stories (TD, addiction, etc.). Anyway...

some things never change. Now, it seems to be an amphetamine for "ADD" and then Klonopin for "anxiety." basically the same thing, just...2 prescriptions to fill, 2 diagnoses to contend with, etc. The Ultimate Goof Ball is a downer, a neuroleptic, and an upper. Not the best idea over the long haul, but...effective for extreme states of misery, no doubt.
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Default Sep 05, 2018 at 02:00 PM
  #34
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Originally Posted by -jimi- View Post
... made me feel like I was even way closer to the world, and everything was hyper real. Like every impression, every thought, really got to me. Like I had no protection from anything. The world mentally scorched me.

...

My anger stemmed from everything being too close and getting to me. It is kind of hard to explain. I couldn't drop negative emotion, it just built up.

...
Exactly. That's exactly how our son has described it and we've seen how negative emotion builds up and once it gets going he focuses on it to the exclusion of everything else. He cannot be consoled.

Actually, the idea of 'focusing on (idea, thing, person, food, want) exclusively, completely out of perspective is a life-long trait. With the advent of adult-sized rage replacing the irritability of his childhood, we see him likewise fixating on that.

As far as benzos are concerned, him being 16, they aren't going to give those to him, even if it helped.

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Default Sep 05, 2018 at 02:26 PM
  #35
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Originally Posted by still_crazy View Post
sometimes, a stimulant (upper) plus a tranquilizer/neuroleptic is a good option. I have an acquaintance (not with your son's set of problems, but...still...) who found relief from a broad range of "issues" with seroquel at night and an adderall xr capsule in the morning. the downside is I think there's some indication the TD risk goes up a bit, and if one gets problems from the neuroleptic (akathisia comes to mind), then the amphetamine or Ritalin can make it worse, not better. blah.

sorry about this situation.
Quote:
Originally Posted by -jimi- View Post
For the very brief period of time I took Seroquel it totally wiped out any effect of stimulants. I think it has to do with how fast your body processes the neuroleptic. For some it goes faster.

The good thing with stimulants is that they don't need to be taken on a daily basis to work, one can take them when needed the most and then take breaks from them. Which is probably when they work the best.
Quote:
Originally Posted by still_crazy View Post
dosing is an issue, too. it seems that neuroleptics=higher upper dosage to achieve whatever effects are being sought in treatment. Having said that...

for a while there, shrinks relied on "goof balls"--they were combo pills, part upper and part either sedative (usually a barbiturate) or carefully dosed neuroleptic. The ones w/ the upper and the neuroleptic were effective for weight loss, some forms of depression, etc., but there were also occasional horror stories (TD, addiction, etc.). Anyway...

some things never change. Now, it seems to be an amphetamine for "ADD" and then Klonopin for "anxiety." basically the same thing, just...2 prescriptions to fill, 2 diagnoses to contend with, etc. The Ultimate Goof Ball is a downer, a neuroleptic, and an upper. Not the best idea over the long haul, but...effective for extreme states of misery, no doubt.

Ja, the amp salts seem to have the most straightforward, WYSIWYG effect. In, does what it does and then out. They did seem to help with his unbelievably short attention to work but could also ignite his mania/perseverance and up the irritation (as if it weren't already in the red) in the later part of the day, not to mention the tics, which, even when the offending med is dropped, often continue on their own.


Odd thing was the stims seemed to make him far more compliant when they are first working, otherwise his personality is naturally hyper objectionist, hyper oppositionist.

As it turns, the matter is now out of our hands. He had to be admitted yesterday - something that has never happened before.

They're in the process of drawing up medication changes and will submit the to us in the near term. I'm wondering if they will come back with some sort of "goof-ball" combo, as you mentioned. I wouldn't be surprised.

Just hope they can find the right mix.

Thanks to all of you for your responses.

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Default Sep 05, 2018 at 06:35 PM
  #36
I hope things will be better from now on.

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Default Sep 08, 2018 at 09:36 AM
  #37
Hope he will get well soon.

I'm also switching from Risperidone to Seroquel from tonight and nervous about that.

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Default Sep 08, 2018 at 06:20 PM
  #38
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Hope he will get well soon.

I'm also switching from Risperidone to Seroquel from tonight and nervous about that.

Thank you kindly for the well wishes, Vishva.

You're switching from Rispiridone to Seroquel or from Seroquel to Rispiridone?

Cheers,

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Default Sep 10, 2018 at 09:53 AM
  #39
I've been taking Lexapro and Risperidone. It is now the third day I'm titrating into Seroquel. Still at 50mg. Tomorrow I have to take the 100mg. Lexapro dose is unchanged.

I'm wondering how long it will take for Seroquel to start working. I already feel a little bit of relief, it is hard to explain it.

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Default Sep 10, 2018 at 09:54 AM
  #40
from Rispiridone to Seroquel

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My Support Forums is the online community that was originally begun as the Psych Central Forums in 2001. It now runs as an independent self-help support group community for mental health, personality, and psychological issues and is overseen by a group of dedicated, caring volunteers from around the world.

 

Helplines and Lifelines

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

Always consult your doctor or mental health professional before trying anything you read here.