Anyone tried Abilify if their child can't tolerate other SSRI'

[DsMom]

My DS has tried Zoloft (nightmare), then GABA (did nothing) then Lexapro ( nightmare), GABA again

(now nightmare!) Lithium and even Pepsid all made his symptoms flare like crazy. The only thing he's seen a smidge of help from is 600 mg Ibuprofen 3x a day per Dr. T.

His local PANDAS Dr wants him to give Abilify a try but we are a bit nervous to even trial.

 

Anyone out there got a child who is super sensi to SSRI'S etc that's tried it?

What are your feelings about it?

Thank you so much for your thoughts on this~

 

 

6/6/13 Just wanted to update: we haven't trialed the Abilify, I've got it on the counter and I look at it daily but we haven't pulled the trigger yet. DS is holding it together so we are baby stepping through the days...I can't tell you all how much the support and sharing of information means to me. Thank you all so much.

Edited June 6, 2013 by D'sMom

[tu4four]

Initially, we had great luck with abilify. Dd was 8, and we did not yet know about pandas or Lyme. She had been on an anti-depressant and seroquel which just about took her to the psych hospital or the morgue. We never did another anti-depressant because I was afraid she had bipolar and would be set off by another one. We had also tried risperdal which really ramped up her OCD. Abilify brought the flame of all this way down. We've done a lot of psych meds including lithium, which was at best like water and at worst like poisoned water for our girl.

We weaned off of all psych meds when dd was on lithium and 30 mg of abilify. I think we had gotten all the good we were going to get out of it.

Have you tried lemon balm? I bought some, but we have not used it enough to see if it would work for my girl. I hear some others say good things about it.

 

I'd love to know what you decide and how it goes. Good luck!

[DsMom]

We haven't tried Lemon Balm. I sound like a dumbbell here but is it a lotion or a drink, or pill? DS has had PANS/PANDAS for 17 months now and our Dr. K (WA) is certain if the symptoms can't be arrested it can lead to schizophrenia, and in his case severe suicidal depression. With his brain still so enflamed I wonder if anything that crosses the BBB will be worse for him....even Omega 3 and Vit D seem to do a number on him. That said Im willing to risk it just in case we find something that can help him. He's on the verge of a psych hospital if we don't find him some relief soon.

 

Off to investigate lemon balm. Thank you so much for the reply. I'll let you know if we give it a go.

[LNN]

It's not uncommon for Pandas kids to be super sensitive to SSRIs - the term used my Dr Tanya Murphy at Univ of Southern Florida is "activating" - our kids are activated by SSRIs at a much lower dose than most people. I don't know if this is a result of Pandas or just that a certain percentage of the general population is also sensitive. But at any rate, the rule of thumb is to start out much, much lower than a typical starting dose - some kids react to a dose as low as 5-10 mg where the usual starting dose might be 25mg. In some kids, 25mg is way too high and you end up seeing more of the very symptoms you're trying to treat.

 

The other thing I've found is that one of my kids - my daughter - has a genetic makeup that would make an SSRI helpful for her anxiety. But my son has genes that make an SSRI as well as any anti-depressant MAO-inhibitor bad for him.

 

The genes MAO and COMT are genes that regulate how fast our bodies use up the neurotransmitters serotonin and dopamine and norepinephrin, adrenalin, histamine and others. If you have certain mutations on these genes, you use up/degrade these transmitters more slowly. Or in the case of the VDR-Taq mutation, you convert Vitamin D into dopamine more readily than normal.

 

My son has mutations on all these genes which conspire to make him very high in dopamine. So the last thing he needs is a medication that's going to inhibit degradation even more. What he needs is the opposite - things that make these genes work a little faster/closer to normal speed. So I've stopped giving him any Vitamin D. He also takes a zinc supplement for pyroluria, which depletes his copper (zinc and copper are ying/yang and too much of one can easily deplete the other). So I started another thread about how supplementing copper seems to be helping his OCD. Copper is a necessary co-factor for the MAO gene to help it break down dopamine.

 

Your son's genetics are what drives his reactions to various medications at various doses. You may want to talk to your doctor about ideas for lowering dopamine rather than going the SSRI route or Abilify. Abilify is a dopamine agonist - and while I always get confused on this, I believe it means it helps/increases dopamine (but someone please correct me if I have this reversed).

 

BTW - my son also had a negative reaction to GABA. As I understand it, GABA supplements don't cross the BBB very easily, which may be why you didn't see much change the first time. They didn't do anything for my son either. But then I tried Lemon Balm, which is GABA-ergic, meaning it helps the body increase its own GABA - and he got very angry and irritated. I stopped it and he calmed down. I don't have a good explanation for why an increase in GABA would be bad. But for now, it's just something we're staying away from. I've found small doses of niacinamide (vitamin B3) help my son calm down. So that's something else to consider. Niacinamide is sold in 500mg pills but my son needs more like 50mg. So we sprinkle 1/10 of a capsule on an oreo cookie as needed.

Edited May 3, 2013 by LLM

[LNN]

We haven't tried Lemon Balm. I sound like a dumbbell here but is it a lotion or a drink, or pill? DS has had PANS/PANDAS for 17 months now and our Dr. K (WA) is certain if the symptoms can't be arrested it can lead to schizophrenia, and in his case severe suicidal depression. With his brain still so enflamed I wonder if anything that crosses the BBB will be worse for him....even Omega 3 and Vit D seem to do a number on him. That said Im willing to risk it just in case we find something that can help him. He's on the verge of a psych hospital if we don't find him some relief soon.

 

Off to investigate lemon balm. Thank you so much for the reply. I'll let you know if we give it a go.

Omega 3s agitate my son - he has a condition called pyroluria which creates a shortage of zinc, B6 and Omega 6s. Omega 6s compete with Omega 3s for receptor binding sites, so he needs to avoid Omega 3s since that makes his Omega 6 shortage worse. Pyroluria was discovered by a doctor who was studying patients with schizophrenia. So it may be worth looking into for your son. Here are some good articles:

http://naturalinsight.hubpages.com/hub/Pyroluria-A-Hidden-Disorder

http://www.biobalance.org.au/_downloads/acnemjournalnov10.pdf (starts on Pg 3)

http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf

 

You may also want to test for toxoplasma gondii, as it too may be an infectious cause of schizophrenia

http://www.theatlantic.com/magazine/archive/2012/03/how-your-cat-is-making-you-crazy/308873/

 

Lemon Balm had the opposite effect on my son than I'd hoped for. No harm in a trial but I stopped it after only 2 doses.

[DsMom]

OMgosh, thank you all for the info. We were treating Ds13 for Pyroluria via Klinghardt's protocol, but didn't see any changes of note after 6 months so we stopped the Core supps. that said he's low zinc high copper ( unless I've reversed it, I'm tired) so I'm going to look into the copper/ zinc supplementation some more. He was on the borderline of positive (tested at 11 when 15 was positive)for pyroluria, and Dr. T thought the Pyroluria was a non- issue for my son, plus he thinks Klinghardt is, well, perhaps less than on top of things. Im worn out on Dr. K as well so weve stopped all of his supps as of now. We are awaiting DNA test results thru Dr. T, but my son is SO low and dark. So interesting and validating that I'm not imagining the 'crazy' after Vit D and/or Omega 3.

So unless I am misunderstanding Omega 6 should be supped?

Thank You all!!

[LNN]

Klinghardt says you should supplement with Omega 6 (we use Evening primrose oil). But other articles on the subject don't mention EPO as an essential supplement.

 

My son tested 19 for KPU and from his response to Core and his response when we reduce it (serious and rapid decline in mental sharpness), I feel he'll need to treat this for life. My daughter tested 14 (on our test, below 10 was negative, 10-19 was borderline, 20+ was positive). Like your son, Core didn't seem to make any difference for her, yet when I give her a zinc challenge (have her swallow 2 tsp of liquid zinc) it has no taste to her, indicating a zinc deficiency. If you aren't deficient, it should have a metallic taste. But Core has both zinc and B6 and it's possible she only needs the zinc. So I just started a zinc supplement and will see if I notice any changes. She's been testing with high TSH yet all her other thryroid labs are normal (no Hashimoto's). Zinc is involved in a feedback loop between the pituitary gland and TSH, so hoping the zinc supplement will help the TSH return to normal.

 

Not saying zinc is your whole answer. But might be worth looking into as a part of it.

 

FWIW - my limited understanding of what Dr T is testing is mitochondrial DNA and not the DNA involved in the methylation cycle. You may want to look into doing the 23andMe test ($99 for first family member, $79 for additional family). I found it very helpful.

 

As for your son's dark moods, maybe talk to your doctor about a trial of a med that lowers dopamine - it could be that his problem is too much rather than not enough. I'm all for natural ways of supporting the body, but there comes a point where severe symptoms warrant pharmaceuticals.

[DsMom]

Oh I so completely agree with you LLM, I too will opt for natural,but there comes a time...

 

I think you may be on to something re/ the zinc and not the B6. And today I almost gave him an evening primrose oil supp, but got nervous and didn't. I am going to tomorrow, needed the vote of confidence, since I've seen such neg reactions to what should be helpful and benign supps.

 

I spoke to the Courtegen labs (Dr. T) fellow and he shared with me that they had done testing on the 23 and Me tests and found some of thier findings to be incorrect, so initially I was abit put off. That said Klinghardt et all suggested the 23 and Me testing, and many of these parents seem to have gotten good info back, so I need to giddy up on that.

 

Do you know of that Abilify is a dopamine reducer? Any rec's? Also, there is more than one type of zinc out there; do you know if it should be one vs. the other if you are deficient?

Thank you so much, I so appreciate our input,

Erin

[LNN]

Here are two articles that talk about abilify

http://thoughtbroadcast.com/2011/09/13/how-abilify-works-and-why-it-matters/

http://whatmeds.stanford.edu/medications/abilify.html

 

It's said that "It is a dopamine partial-agonist meaning that Abilify can stimulate dopamine receptors when little dopamine is available and block dopamine receptors when there is too much dopamine present causing the receptor stimulation to become more balanced.

Abilify’s effects are often dramatic and seen within a few days, but it may take weeks to work in other cases."

 

But the first article explains that no one's totally sure how it really works. However, it seems to be well tolerated, it seems you'd be able to tell if it was good or bad for him in a few days and since he's in such a bad place, it seems like it may be worth a try.

 

FWIW - I've never seen any effect from the EPO - good or bad. I give it because a few articles say you should. Hopefully you won't see any negative response.

 

On the 23andMe results - I don't want to sound like I'm defending the company. I only find it more helpful because it tests so much and it affordably tests the genes I needed to look at for methylation. Their customer service is apparently lacking, they are hard to get hold of - but I've never had to interact with them, so I don't have firsthand experience. On the accuracy, I read one mainstream article on Yahoo that gave an example of how it inaccurately predicted her hair color. 23aandMe gives you several reports that look at a collection of genes and "predicts" your odds for certain conditions - like whether your risk for heart disease or lung cancer is higher than the general population. There's no single gene for hair color, heart disease or lung cancer. What the report does is look at the overall status of a group of genes and compares it to the results in its database, then makes predictions. It also predicts genealogy/ancestry, etc. So some people report that those predictions are wrong. I found the reports vague and not all that helpful but that wasn't what I was using it for, so it didn't bother me that much.

 

Apparently, Labcorp is the lab that does the 23andMe testing. Here's an article from 2010 on some errors - I'd like to believe that quality control has improved in 3 years, and as the article points out, all labs make mistakes. But it's something to bear in mind http://scienceblogs.com/geneticfuture/2010/06/07/sample-swaps-at-23andme-a-caut/ My kids' results were consistent with family history, eye color etc, and their 23andMe results for MTHFR matched the tests we'd done for this with another lab, so it didn't set off any alarm bells for me. Courtagen has apparently been offering genomic testing for less than a year. Both companies use/are CLIA certified labs. I'm sure they both make errors. Caveat emptor.

 

Finally, on zinc, different forms are more easily absorbed than others. Zinc pincolate is the one I've seen recommended most often, but you'll need to do a little research. Here are two contradictory articles: http://articles.mercola.com/sites/articles/archive/2012/12/13/zinc-for-colds-and-flu.aspx

vs. http://www.globalhealingcenter.com/natural-health/types-of-zinc/ one likes zinc gluconate, the other hates it. One recommends zinc orotate, which I've never heard of or seen readily available. Core uses these three types: Zinc Glycinate, Zinc Gluconate, Zine-Picolinate so I looked for something that used these. The other two considerations is finding a supplement that matches the dose you want to achieve (I found it hard to find low dose supps that I could take more than once/day - most were high dose pills) and also the foods you consume close to the time you take the zinc. (like don't take along with copper or calcium, don't take with coffee). Some foods aid absorption and others reduce it. You'll just have to read up a bit, consider your diet/schedule and then shop around to see what you can find that's closest to your needs. I use this http://www.amazon.com/Designs-Health-Zinc-Challenge-Beauty/dp/B000FGXMAY/ref=sr_1_21?s=hpc&ie=UTF8&qid=1367752243&sr=1-21&keywords=zinc about every two weeks - I have each of us take a 10ml swig of it to see if there's any aftertaste. If you can't taste it, you're really deficient, if it has a strong metallic taste, you don't need to supplement. I don't use it daily - too expensive for that. But it's a good little test to gauge where you're at.

 

Good luck!

[DsMom]

Excellent articles on Abilify, thank you! We never saw pos or neg effects from EPO when he took it before, but the first time he was taking GABA it was a non issue as well... Now I second guess everything. And the zinc info, many many thanks. I was confused re/ all the 'ates' available so I just had gotten a Thorne zinc supp for DH and I, not DS as he was on Core, just because it's Thorne. Sigh.

 

My DS developed a roving, non stop 'itching' sensation along with weird rashes virtually overnight 17 months ago. Found the Strep infection 3 days in (zero symptoms) that took 8 months of ABX and a T&A to clear, plus 4 months in we found out Dad was positive (no symptoms) as well, thank goodness we had gotten in to Dr. K in WA or we'd never have figured out DH. DS has had 3 HD IVIG's, first while still pos for Strep, but the rashes, major flushing episodes and itching hasn't stopped, ever. The mental stuff has gone up and down. Only when he sleeps is the itching gone. His first Neuro said as soon as he saw him ' I think it's PANDAS' and the itch is a tic. It all makes sense. We just can't get the itch to relent, and I know it's pushing DS over the edge. He got a bug bite 2 1/2 months prior that became a bullseye so we started with Klinghardt over 6 months ago, but have seen zero changes so are moving on from there to another ND who is LL just to make sure we aren't missing anything. Dr T doesn't think it's anything to do w/ Lyme, but I'd buy snake oil at this point, I'm sure you understand. I think if we could get a handle on the itching it would improve everything, anxieties, paranoia, depression, etc. But so far no ones come up with the magic bullet. Something has got to be keeping his autoimmune system on high, just what we don't know.

 

He was certifiable when he last trialed a SSRI, DH is even more nervous than I to try the Abilify, but I think we will, I mean what if it helps him? DS is scared to try to so I may have to be covert about it, which I hate doing.

 

I'm not sure what methylation really means. I'm going to try to figure that out too. I completely agree with you re/ your DS w/a 19 on the KPU scale, I'd be 100% in on Core, I wish I'd seen some positive changes, but I'm ordering that zinc liquid u use, great recommendation. Gosh, how have you figured all of this out?

 

I can't thank you enough for the time you've spent and the info, and the 'good luck' wishes, we need all we can get.

[momcap]

If you try abilify, my advice is to start LOW and go SLOW! Everyone reacts differently, but for my DS abilify was a nightmare. Zoloft is the only SSRI we ever tried and he went completely off-his-rocker manic. Very scary. He started talking a mile a minute like he was thinking out loud, jumping from topic to topic. Then he started doing backflips. He's never done gymnastics and can't even do a cartwheel, but he had zero fear and zero inhibition, so suddenly he's doing backflips. Then he ran out on the highway - and this is a kid with OCD rules, rules, rules, and General Anxiety Disorder that is hyper-vigilant about his personal safety. Anyway, back to abilify: The first 2 weeks at the initial dose were really positive. We saw marked improvements in aggression and agitation. But then the doc had us up the dose. I argued, saying it was going well let's wait, but doc kept saying we were no where near a treatment dose yet. So when we upped the dose all he!! broke loose. The worse he got, the more the doc said to give him. I questioned this approach, saying I thought the abilify was causing the problem. The doc insisted abilify would fix the problem. Finally he ended up in the hospital. I agreed, very reluctantly, to go back to the initial low dose that he had shown so much improvement on. My gut said to stop abilify completely, but I was still trying to work with the docs, and hoped for the best. So I gave him the tiny dose and he was very quickly agitated again. The next day we tried one more micro dose, and again we saw extreme agitation. I refused to give it to him again after that. Oh, and besides all that aggression and agitation, during those few weeks he went from a solid 80 pounds up to a very overweight 100 pounds. Poor kid gained 1/4 of his body weight in a month. BRUTAL. But like I said, everyone reacts differently. I would just use extreme caution in approaching any psych drug. I learned the hard way, go LOW & SLOW, and stand your ground with the docs.

[DsMom]

Thank you for sharing momcap, I haven't heard first hand of other kids who have had as big of a nightmare on Zolo as we did. Although I have heard its the most frequently prescribed and the least tolerated by PANS kids. My boy sounds similar in the hyper vigilant about his safety aspect, but now he talks of ending it all, which is why I'm so uncertain about the Abilify.

 

Oh do I hear you on start low-go slow! I only gave DS a quarter of the dose for Lexapro and in 2 days he was completely bananas. Gosh I'm so sorry you had to experience all that too. Plus I did see its a weight gainer too, ugh.

 

So is your boy is completely off any type of anti anxiety anti depressant meds now? Was there ever one he could tolerate? How did he do w/ vit D and/or omega 3's?

I'm going to get the free trial month of the Abilify, but still not sure if we are going to use it....

[4Nikki]

I wanted to bump this thread because we just gave DD abilify, after being afraid to for 3 months after being prescribed. The bottle says to give it before bed time one a day?

[tu4four]

Our dr has always had us give half of the dose in the am and half in the pm. That has worked better for us. I will tell you that my daughter was off of all psych meds for 4 months. Treating for Lyme/Pandas. Saw absolutely no improvement in symptoms--charcoal would help for a couple of hours, advil would help some, for a couple of hours. Finally got so bad that we were looking at inpatient treatment. Raging constantly, bitter, angry, aggressive. Couldn't go anywhere, get any clothes on. Did take her to two different out of town docs, but it was difficult. Did not want to put her back on any psych meds because i wanted to be able to see which med improved her situation. It finally got so out of hand, however, that my mom and my sister were both calling me almost daily with inpatient treatment resources. And they didn't see the half of it. Like when she climbed out her second story window, etc., etc.

 

We finally put her back on a low dose of Abilify. Some raging continued for a week or so. She hadn't taken her other meds for two weeks because getting her to take it had become a situation where everyone's safety and sanity was at risk. So we started all the other meds again a couple of days after Abilify. Now I don't know which has helped, but we have backed the Abilify down a little--I tend to think the other meds are helping, but I am sure that the Abilify is helping, too. I know all meds affect people differently, and Abilify is no exception. However, Abilify is actually not an SSRI--my daughter becomes out of her mind on an SSRI, so I, too, am careful to never give her one again. I believe that Abilify is a mood stabilizer? Too late to remember right now, but not an SSRI. My daughter was on Pexeva for a while, and she just about went over the cliff.

[Guest]

Abilify is an atypical antipsychotic but is usually used as an adjunct medication in addition to a primary anti-depressant to boost how it's working. By itself I'm sure it would do what other anti-psychotics do, depress the CNS, block certain dopamine, sedate - that's how I reacted personally to it.

 

I take zyprexa but only so I can get some sleep, makes me very calm yet very sedated though. Only thing that can "keep" me asleep for a little while. But by itself, does NOT help with depression, only taking it for anxiety.

 

I'm sensitive to everything as well and tried maybe 100 diff. psych meds but there are a lot more options out there than just the ssri's. I had success with nortriptyline in depression and for sleep - tri-cyclic. There's one called anaphranil that's fda approved for ocd but didn't help me personally. I had success with EMSAM (maoi patch) for depression but not anxiety.

 

The most beneficial thing has been klonopin and xanax. But neither are anti-depressants. I've read also that topamax a mood stabilizer/ anti seizure is used as an adjunct for ocd. And that effexor an SNRI can help ocd.

 

Best of luck. Unfortunately it's a matter of trial and error.

 

I am getting too many side effects too from 25 mg of zoloft.

 

P.S. I don't know if my posts help at all, but I want to "contribute" b/c everyone here has helped me so much.

Edited June 5, 2013 by Guest