Jump to content
ACN Latitudes Forums

Recommended Posts

Hello,

 

Has anyone tried Abilify for rages? I've just spent the day reading about its use in autistic children and rages.

 

The only thing I am unsure of is whether it would be beneficial to dd or not since she has 2 COMT mutations and 1 CBS mutation.

 

It looks like if it works, it works and there isn't a lot of in between. I'm interested in any real life stories.

Link to post
Share on other sites

Before I tried Abiify, which is an atypical antipsychotic, I would consider something with less potential for side effects, if you havent already. My son was on Lamictal for a year with good results. Lamictal is an anti seizure medication with a wide margin of safety and tolerance. It also has antianxiety properties and regulates brain glutamate, which can cause some symptoms in our kids.

 

Lamictal has to be titrated up slowly to avoid a potential allergic reaction.

Link to post
Share on other sites

Thanks ladies!

 

emst, what does is your child on? Have you seen any side effects? How long did it take before you noticed any changes?

 

I myself tried Lamictal and had a terrible reaction so am averse to go that way. I have also tried Abilify myself (not sure why I went off it) and recall having positive effects without bad side effects.

Link to post
Share on other sites

This is just my son's experience but it was horrible for us. We had him on almost everything at some point (this was pre PANDAS/Lyme diagnosis).

His worst were Seroquel and Abilify. I will say thought that both his psychiatrist and therapist (who both work only in that field and do not have any

pandas patients) had never seen that reaction before. They said both of those are much more likely to do nothing than to cause more problems.

Just one of the reasons they finally started accepting he might have an infection related problem.

Melrmix

DS 8 PANDAS/PANS/Lyme

Link to post
Share on other sites

ds15 was on Abilify with success for about a year at age 10 (??) but then it started to have a paradoxical effect, where he was almost bipolar manic w/rapid onset episodes. His child/adolescent psychiatrist at the time said Abilify is actually nicknamed "Abili-FLY" because of this reaction.

 

Seroquel didn't help other than sedate a bit and make ds15 irritable.

We are now on an anti-seizure med, Tripleptal (same class as Lamictal), with the best success in years. That and aggressive PANS treatment of course.

Proceed w/caution would be my advice. Good luck!
Edited by tj21
Link to post
Share on other sites

I guess each route truly is different for each child. We tried the trileptal and just didn't see any change - neither good nor bad. tj21, what success did you see for that first year?

 

We are seeing a new LLND next week so I am hoping to use this very short term or else with even more guidance. But stories are so helpful.

 

thank you all!

Link to post
Share on other sites

DS's psychologist recommended low dose ability (2 mg with goal of 5 mg) off label to help with focus (as with most PANS/PANDAS he did not do well with stimulants, Zoloft, etc.). We had to stop it within 2 or 3 weeks still at the 2 mg dose because of side effects. His speech became very garbled and when we called it quits he was near tears in speech as he felt there was something in his throat and he sounded as if he had rocks in his mouth - pediatrician confirmed there was nothing physically there. The symptoms stopped when we stopped abilify. We had high hopes for this med and had to get the psychologist, a psychiatrist he worked with, and our pediatrician all on board to discuss with insurance for them to cover as they initially would not cover. To be fair, DS had an underlying untreated mycoplasma infection we were unaware of at the time.

Link to post
Share on other sites

@fallingapart - at first his mood was stabilized and we had fewer rages. Side effects were weight gain but using it did buy us time. I do think his PANS exacerbation was around the same time it stopped working, complicating things.

 

Sorry the Trileptal didn't help.

Link to post
Share on other sites

I can't tell you that ability didn't work, I can only say it seemed to help balance dd a bit for just over a year. Her rages would get completely out of control. It gave her a huge appetite. She gained 60 lbs in a year. We had to watch the types of food intake closely. We had to take her off Abilify slowly. Her appetite went away when we stopped and she lost 30 lbs in 3 weeks.

 

We had more success using advil cold and sinus. 200 mg buprofen with 30 MG pseudoephedrine than any thing else but you have to watch out getting to dependent on it, because giving it on a regular basis can over put the immune system in overdrive.

Link to post
Share on other sites

bad reaction was really nothing - I just couldn't sleep. no matter how many sleeping pills I took or how much magnesium I took. I was awake for 2 days. Sleep is something I have huge anxiety over since dd didn't sleep for 2 years. I probably would have gotten used to it but I didn't even give it a chance with a second dose...

 

I don't know what Atarax nor pseudoephedrine. I will definitely be looking these up. DD is a bit chubby and is becoming aware of it so the potential weight gain from Abilify is terrifying to DH and I. We are only giving her 1mg right now and we did skip a day. I read somewhere that someone said it could help instantly - we gave it situationally today and I think it did actually help. Still, I really don't want to use it if there is another alternative.

Link to post
Share on other sites

oh - Atarax - we have used this. tj21 what dose did you use? Benadryl is helpful for us so perhaps we should give this one another try. Only problem with Benadryl is that we can only give a full dose at bedtime.

 

Ok, I just looked up pseudoephedrine and see that it can help some people with anxiety. I believe the anxiety is what causes the rages. Adderall is also mentioned several times with the pseudoephedrine. Has anyone ever tried that? What dosage would/do you use? DD weighs almost 90lbs- so pretty close to an adult.

 

I can't tell you how much I appreciate this discussion. I hope it is also helping others.

Link to post
Share on other sites

10mg. Atarax. He was 12 at the time, maybe 100#. Psychiatrist said we could go up to 30mg/day. Benadryl (25mg.) worked/s better, not as sedating as Atarax.

I don't like to give ds15 anything w/pseudoephedrine b/c it's stimulating and would also keep him awake. Maybe it has a paradoxical effect for some kids?

 

oh - Atarax - we have used this. tj21 what dose did you use? Benadryl is helpful for us so perhaps we should give this one another try. Only problem with Benadryl is that we can only give a full dose at bedtime.

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...