Any experience with Abilify for Aspergers?(UPDATE)

[JESW]

DS9 was recently diagnose with Aspergers. Yesterday the dr. prescribed abilify and today was his first day on it. Starting with 2.5 for a week and then 5. This morning he threw up after breakfast and he fell asleep several times throughout the day - very UN-typical behavior for him. He was sleeping on the couch downstairs and DH just woke him up to go upstairs - what a nightmare! Kicking, back arching, grabbing things to stop DH from carrying him, yelling leavemealone and having his body go limp. Those are behaviors he has when he's in the middle of what we call his "fits". He has finally calmed down. Sigh.

What can we expect from meds? This is our first time dealing with them. Because he got sick does that mean his body can't tolerate it - or does it just need more time? Today was sunday and tomorrow is a holiday so it won't be until tuesday til we can talk with the dr. He wants to see him in 2 weeks to check on the meds.

It's all so scary. This medication is not even approved by the fda but many dr's are prescribing it and getting good results. We are afraid for our son to be on it - but afraid for him to not be on something. The list is too long of the things we've gone through already with him. He needs a break from the way he has been feeling.

Any experience or advice??

Jill

 

[mbb]

Oh....hugs to you...
Going to search on it right now...

 

[mbb]

Maybe this might help you...my DH is a pharmacist, and we judt poked around on a few sites (remember, we live in Canada - this drug is not available here)) and this is his take on it...this in no way is any kind of reccommendation or condemnation, maybe this will help you ask some questions, or rest a little easier...

Just some points to consider...
This drug is not FDAapproved for Asperger's(however, "off-label" uses of meds is a common practice)
Abilify hasn't been studied in people under 18...is the pharmacy preparing the med for you in the doses given? On the company site, the smallest strength is 10mg.
There have been issues with other meds used as anti-depressants (SSRI's) in young children.
Is the doctor who prescribed it a specialist and/or has she/he had personal experience using this drug in a young Asperger's child? Do you feel comfortable expressing your fears to this doctor?

Nausea/vomiting and sleepiness are described as common side-effects.

Jill, I hope you understand that we know how hard it is to say yes - or no...to something that might help...
I also hope that the above is useful information for you, and feel free to pm...
...Friends who understand are here...

Mary Beth

 

[CaribbeanGal]

Hi.
My 17 year old daughter was diagnosed with Squizofrenia about a year ago. Of all the medications they have tried on her, Abilify was by far the one that gave the best results.

Unfortunatelly, she had to be taken off it because she was throwing up every single day at school and was falling asleep in class (ended up missing a whole year of school because she could not keep up with her work.)

The side effects may be temporary, but then again, maybe not. Let your doctor know if things don't improve.

And don't be afraid to try meds that are not for the specific condition. My daughter's doctor has done that with her and has had very good results. Different meds work with different brain functions or areas and can help people with different conditions that affect the same parts of the brain. In my daughter's case, for example, she's taking a med that is normally prescribed for Alzheimer patients, and has seen great improvement in her focusing, memory, etc.

Ask, ask, ask! Write down any questions you have between doctor's visits so you won't forget them when you get there. The more you know about the condition and the medications, the more you will be able to help your child.

Our kids share quite a few of the symptoms, so if you ever need someone to talk to who's been there (she was diagnosed last year, but the condition is there from birth, and we have been dealing with doctors and meds for three years now) just let me know.

 

[SueM in MN]

I didn't see this thread until now, but just wanted to add a little to the excellent info already posted.

It's not that the drug is not FDA approved (it has to be, or it would only be available for use in controlled studies). Any drug that is FDA approved has been tested to show it is safe; and they have to test to show it is effective in certain conditions/situations. "On-label" means it's being prescribed for something that studies have been done to prove it is effective and safe. "Off-label" just means it has not had studies to show it is useful for the condition the doctor prescribed it for. It's very common for doctor's to prescribe things "Off-label" as mbb mentioned. So, any doctor can prescribe it, but it's not being prescribed for a condition that it is approved for.

It happens very frequently because the drug companies can't study every possible condition that drug might work on. Also, once a drug has been out a while, doctors might see other uses for it. My DD has been on a common drug used in Parkinson's disease for a number of years. She's using it "off-label" to assist in fine motor control with cerebral palsy. We noticed a big improvement in her hand use (fine motor skills), especially when she's feeding herself. When she started taking the medication, it was on a theoretical idea that a drug that worked in a certain way would help in her condition. Just recently, I saw a call for people to participate in a study of that medication for improvement of hand use in people with cerebral palsy, so it soon might be an "on-label" use.

Obviously, not everyone has side effects from medications (or not everyone has them to the same extent). Sometimes, the side efffects will get better as the body gets used to the medication; sometimes starting the medication in smaller doses and increasing the dose slower makes the side efffects more manageable. Sometimes, the side efffects are so troubling that the medication needs to be stopped. That doesn't mean the medication is not good, just that it's not good for that person.
And, finally, they seldom study drugs specifically in children because of rules about doing studies and consent. So, a lot of times the safety data in kids comes after the drug is approved and has been in use with children for a while.

 

[TinkTatoo]

I have two children DS (7) has Autism and DD (6 in two weeks) was Aspergers. Here in Ireland medication is rarely given for Autistic spectrum disorders (ASD) .

I would not consider giving my two any medication for their ASD. When they have meltdowns it is because they can not cope with what is going on around them so I have to find strategies to help them deal with the situation or remove them from it.

IMHO I don't think medicating them is the answer - I realise that your situation could be completely different but have you explored all the other options before considering this.

Good luck and I hope it works out for you.

 

[Poohnatic]

No experience with Abilify here.

TinkTatoo, that's good that you've chosen not to medicate your kids. In my son's situation, he was disruptive to the class and he was extremely frustrated with school. He couldn't concentrate and was handed quite a few in school suspensions.

We chose to go the medication route. He is doing very well in school and likes 'being in control' of the meltdowns. Don't get me wrong, he still melts down on a regular basis, but now there's a longer lead time to diffuse the smaller meltdowns. My son will be the first to tell us when he needs a dose of a medication.

Our pharmacist was the one who put things in perspective-if he was a diabetic, would I deny him insulin? It changed my view that all medications for his 'alphabet soup' were evil.

Suzanne

 

[scorpad99]

If it makes you feel any better, my nephew was diagnosed at the age of 4, was in special ed til he was in middle school. and now is beginning his 2nd year of college with a full scholarship for ranking top 25 in his class.................majoring in medical, going to pharmacy school to work to put himself through medical school. we are all so proud of him.

 

[JESW]

Just wanted to post an update....

It has been just about 2 months that our son has been on Abilify and the changes are nothing short of AMAZING! Yes, he will always have Aspergers but we believe he will learn to live with it and maybe some day not even need medication.

The last couple weeks of school were a dream come true. He PARTICIPATED in class activities....he VOLUNTEERED to do work...he INTERACTED with is classmates...he WROTE..(something extremely hard for him..) His teacher and I were in contact constantly through e-mails and it was so nice to get glowing reports instead of ones that started with..."I am sorry to say that Aaron had a bad day in school today..."

We went to Disney the day after the kids got out of school (6/19) and it was our BEST trip ever!!! No major meltdowns...no major arguments...he tried different foods...he made suggestions on where we should go and what we should do...he did NORMAL sibling fighting with his sister...he got involved in pin trading and had so much fun! It was great for him since it involved making eye contact with strangers...talking with strangers...and giving something up...what an experience for him!! And the cm's he dealt with were all so kind.

At home he has been ASKING to help out... I have taught him how to do the laundry and he also likes vacuuming. I have him and his sister in gymnastics camp 2 mornings a week and he has been enjoying that. (It is not competitive - just fun stuff including arts & crafts)

We have noticed more fears and anxieties coming out and we are not sure if it's the Aspergers or the age...or the fact that he now feels comfortable enough to talk about them where before he would just melt down. He has become much closer to his Dad (I swear Dad has AS too..) and they do more together. Some of his fears come out when Dad doesn't get home when he thinks he should.

During certain situations DH & I still wait for the meltdowns but they don't come. DS is more likely to come up with another plan if what he wanted didn't come through. Of course life is not perfect, because how boring would that be? The kids still fight, but I am able to do more with them during the day because DS is more cooperative. Tomorrow he is going to the junior zookeeper class I signed him up for at the zoo in our town we joined this year. This is something he NEVER would have done before!

He had an appointment with his psychologist today and he is VERY pleased with how things are going - even he can see quite a change. Right now he is only seeing him every 2 or 3 weeks - it will most likely go back to weekly once school starts. He also sees the psychaitrist once a month to check on how the medication is going. DH & I both feel that DS is being watched and monitored closely. The last week of school we had a meeting with the "team" who had been helping him. Next year he will continue to have sessions with the counselor and have different academic counseling. We are also pleased with the help we have been getting from the school. He is on a ISP (Instructional Support Plan) and we feel comfortable with that.

I never, NEVER thought we would get to this point. I can't tell you how much our home life has improved. We went away for a couple nights last week (RI/CT) as a family and things went well. DS is tired from the medication and we need to work around that, but these days he takes an hour nap or so and he is fine. Not sure what will happen when school starts back up - that will be the REAL test.

I can certainly understand when parents don't want to put their kids on medication as it is such a scarey unknown. I put off getting him help for years and years as other people kept telling me that he would outgrow his behavior. I also kept thinking his behavior was my fault. Our family went through hell. MY DH was seeing a dr. to help him cope. I went to the school and broke down and told them we needed help. (they are the ones who set me in the right direction to get him evaluated) Our family could not go on the way it was going. We also have another child and it was affecting her life. Even at a young age she would say things like - "Now we can't go because Aaron is having a fit..:

I have also made friends with other women who have children like my son. It is nice to not have to explain things all the time.

Yes, life is good!

Jill

 

[mbb]

words cannot express how glad we are for you....

Mary Beth