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Old 04-16-2009, 10:20 AM #1
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Default seven year old difficult to medicate

My seven year old has had a difficult time with medications. He has neuro issues since the age of 1 after strep. He has been diagnosed with PANDAS, Tics and tourettes and obsessive thoughts, ADHD and anger issues. For the past year he has been on Abilify. Every few months it would seem to stop working. The psychiatrist has upped it from 2.5 to 5 to 10 to now 15mg. Also we tried to add ADHD meds Concerta, Adderall XR, all made him worse with sleep and tics and emotions. Then we tried Strattera and it made him get loose bowels. His bottom has gotten irritated. We have now stopped it and have given up on ADHD meds for now. Now we are going to add Celexa for the OCD and anxiety next week. We are seeing a child neurologist and child psychiatrist and psychologist. What do you think of these med combos Abilify and celexa? I am getting tired of all this trial and error on meds. It is frustrating and expensive changing meds and causes such mood troubles. Any suggestions? I have an appointment next month with a psychiatrist who specializes in tourettes and OCD. He may have a bit more info then the current one. Plus an appointment with a new neuro next in two weeks who works alot with aspergers and tourettes OCD which may be what he has. Help I am so overwhelmed here. He is so young to be so medicated. His dad seems to have some anxiety and social issues and anger and takes Prozac. Neuro issues run in his dad's family too. I have polyarthritis which may also have contributed to this autoimmune thing with strep throat.
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Old 04-16-2009, 10:39 AM #2
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Abilify is a very strange drug IMO...
Quote:
Aripiprazole exhibits high affinity for dopamine D2 and D3, serotonin 5-HT1A and 5-HT2A receptors (Ki values of 0.34 nM, 0.8 nM, 1.7 nM, and 3.4 nM, respectively), moderate affinity for dopamine D4, serotonin 5-HT2C and 5-HT7, alpha1- adrenergic and histamine H1 receptors (Ki values of 44 nM,15 nM,39 nM,57 nM,and 61 nM,respectively), and moderate affinity for the serotonin reuptake site (Ki=98 nM). Aripiprazole has no appreciable affinity for cholinergic muscarinic receptors (IC50 > 1000 nM). Aripiprazole functions as a partial agonist at the dopamine D2 and the serotonin 5-HT1A receptors, and as an antagonist at serotonin 5-HT2A receptor.
from http://www.rxlist.com/abilify-drug.htm

What this means is that it works on many receptor systems in the brain. Stimulants work on the dopamine system mostly.
Celexa and other SSRI types mostly on serotonin reuptake.
Adding an SSRI will augment Abilify, in this regard.

What happens in the brain with time with drugs that affect neurotransmission is that tolerance occurs. These drugs are pretty novel, but we do know with opiates new receptors are formed in the brain, and then that requires higher doses to fill those receptors. The thought is that this occurs with other systems and if so then tolerance is a serious issue for long term treatments. Discontinuing therefore requires serious slow tapers as well.

The bottom line? No one really knows for sure. Much of psychiatric drug use is trial and error. That is tough on small children and their parents.
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Old 04-16-2009, 12:31 PM #3
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Default med help TS OCD ADHD

His ped neurologist wanted to stop the Abilify since he was still having temper issues on 10 mg of it and try Risperdal. The child psychiatrist said we should just keep going higher on the dose of Abilify to 15 mg. The neurologist thought 10 mg was enough in his opinion. The psychiatrist said she thought he had sent me to her for the medicine and said choose me or him to write it not both as this is dangerous. What do I do now? Stop the Abilify? Up the Abilify to 15? Add the Celexa or just try changing to Risperdal and see if the obsessions improve along with the moods? So confusing? This past year has been a nightmare. I can't believe I am having to give my little guy such powerful drugs. I just want him to be happy and able to get along in society without meltdowns and obsessive anxiety. What do you suggest? I am lost?

Quote:
Originally Posted by mrsD View Post
Abilify is a very strange drug IMO...


from

What this means is that it works on many receptor systems in the brain. Stimulants work on the dopamine system mostly.
Celexa and other SSRI types mostly on serotonin reuptake.
Adding an SSRI will augment Abilify, in this regard.

What happens in the brain with time with drugs that affect neurotransmission is that tolerance occurs. These drugs are pretty novel, but we do know with opiates new receptors are formed in the brain, and then that requires higher doses to fill those receptors. The thought is that this occurs with other systems and if so then tolerance is a serious issue for long term treatments. Discontinuing therefore requires serious slow tapers as well.

The bottom line? No one really knows for sure. Much of psychiatric drug use is trial and error. That is tough on small children and their parents.
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Old 04-16-2009, 01:15 PM #4
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There are natural alternatives. Are you open to that?

There is a sticky thread in Tourette's....
http://neurotalk.psychcentral.com/thread1145.html

Read this first.

Then consider:
My experience is with ADHD and natural support. I have a thread on Vitamin forum on essential fatty acids and their usefulness in
many health areas, including the ADHD which we used them for.

http://neurotalk.psychcentral.com/showthread.php?t=6092

This sticky has alot of concentrated information on the
most valuable nutrients:
http://neurotalk.psychcentral.com/thread16628.html

For EFA support, and behavior support, B6 and magnesium are very important. They help metabolize the EFAs for the brain's use. EPA and DHA specifically are one type of Omega-3. The EPA portion has been studied in bipolar patients. If you suspect bipolar (the meds suggest that diagnosis), then EPA may be helpful. My son with the ADHD and anxiety diagnosis did better on high DHA containing fish oils. My son was able to stop his Ritalin after 5 yrs! and be drug free.

It seems overwhelming now, but start reading. When I started with this subject over 10 yrs ago, and Chemar also found me on the net, we were doing parallel things to help our sons.
Now with time, this approach has more medical support, and so it has been validated quite a bit compared to a decade ago.

Keep in mind that discontinuing any drugs now, would have to be done very slowly and carefully. In fact I kept my son on the Ritalin because we had no idea EFAs would work so well. He tapered of over a 3 month period.

So for now, just read and learn. Then you can PM me anytime or post here or at Tourette's (where Chemar watches) or at Vitamin forum (where I watch) and eventually you may find the answers you seek.

Hang in there.
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Old 04-16-2009, 01:24 PM #5
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And of course, sometimes symptoms of adhd is something else... sometimes something worse, sometimes not as onerous (http://itsnotmental.blogspot.com/200...n-deficit.html).....

But almost always, the fish oil is helpful both with the adhd and the inflammatory and autoimmune problems such as with PANDAS. Does not hurt.
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Old 04-17-2009, 08:19 AM #6
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Quote:
Originally Posted by Jaspar View Post

But almost always, the fish oil is helpful
just a word of caution that where Omega 3 EFAs seem to always be very beneficial, for people with TS, fish oil often seems to cause a waxing of tics!
we have numerous anecdotal reports on this at Latitudes and my TS son is one of those. He can eat all kinds of fish with no problem but fishoil supplements cause a rapid intensification of his tics

For these patients flaxseed oil derived EFAs seem to be a better option
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Old 04-17-2009, 08:42 PM #7
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Quote:
Originally Posted by msnyder View Post
Plus an appointment with a new neuro next in two weeks who works alot with aspergers and tourettes OCD which may be what he has. Help I am so overwhelmed here. He is so young to be so medicated.
I'm going to move away from the medication questions for the moment because after reading your messages, there is one single thing that stands out for me and I've quoted that above...

So, at the Neuro appointment coming up, if he is diagnosed correctly and the diagnosis includes AS and a Tic Disorder / OCD (remembering too that people on autism spectrum can have difficulties with attention and have OC symptoms as well), then you can find a whole new direction in which to help guide your son. I hope the specialist you are seeing does have good knowledge of the autism spectrum as well as tic disorders and that you get some answers.

I also wonder how he's doing at school? Have the teachers talked to you much about how they see him in class? Have they been helpful???

If he does get an AS diagnosis then it will open up a whole new realm of practical help that you can use and the schools can use to guide him through these difficult young years, and with good understanding of his strengths you may find it will work better than any medication that's available, believe me.

All the best with the Neuro appointment. Please let us know how it goes.

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Old 04-19-2009, 08:55 AM #8
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There is a huge scandal going on now about atypical antipsychotic drug use in children:

Some links to read:
http://www.ahrp.org/cms/content/view/549/70/

My email box gets mails DAILY about this scandal.
http://bipolarblast.wordpress.com/20...als-were-done/

You can Google this topic and find zillions of pages of information.

The way psychiatrists are informed about new drug treatments is that they attend conferences (in very nice resorts FREE) and other psychiatrists (who are paid for by the drug companies to say positive things) give lectures to encourage the use of the drug that the sponsor of the conference makes.

A psychiatrist from Wyeth explained HIS experience with doing this to the NYTimes:
http://neurotalk.psychcentral.com/sh...ighlight=Wyeth

In fact already, Eli Lilly has to pay out 3.4 BILLION in damages to state Medicaids for misrepresenting Zyprexa. Seroquel is next. Abilify has remained untouched ONLY because it is still the newest. When doctors cannot use the other drugs instead of understanding why, they just prescribe another! (Abilify)

This same convoluted reasoning occurs with NSAIDs... all of them have been shown to affect the health of the heart...
Bextra and Vioxx were taken off the market in fact. Celebrex hangs by a thread. So what do doctors do? They have latched onto Mobic ...which is just as dangerous. Partly due to the sales pitch from the sales people visiting the offices. I believe it is the same for Abilify.

The time is coming for Abilify however, because in the end the truth eventually does come out. It is just unfortunate that people have to suffer while waiting for that truth.
Notice the heavy advertising of Abilify in magazines and television right now. They are battling the generics of Risperdal and Seroquel that the insurance companies mandate. Abilify does not have a generic yet, but soon it will be here. The ads typically come on about 2 yrs before the end of the patent:
Abilify has several dates:
http://www.drugpatentwatch.com/premi...hstring=OTSUKA
But this site claims 2015 as the absolute end of the patent in US:
http://bipolar-disorder.emedtv.com/a...c-abilify.html

Here are some details about the money:
http://www.zacks.com/blog/post_detail.html?t=18862
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Last edited by mrsD; 04-19-2009 at 09:23 AM.
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Old 04-21-2009, 07:25 AM #9
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I also wanted to add that we actually do have a TS Forum here at Neurotalk as well.

Tourette Syndrome Forum
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Old 04-22-2009, 01:44 PM #10
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Default seven year old

I did check the tourettes forum. I am so frustrated because other then
medications and therapies I don't know what else to do. There is no recommended treatment for PANDAS OCD on the NIMH site. On the medications like Abilify he is much easier to go along with things. However after a few months it stops working. He starts to get meltdowns and anxiety again. We have started the celexa and it seems to be helping. Last night after he couldn't go to get something he wanted( that is his obsession getting things), he threw a fit and slammed doors and threw some things. The door hit his sister in the face. That was the first meltdown in a few days. I am sure some of this is sensory related too. We do OT twice a week. We did do GF for awhile but I didn't notice enough change. Also did the supplements for a few years. I didn't see them helping either. Are people here anti medication? We traveled to Florida to see a psychiatrist big in the PANDAS research and she recommended medications also for the symptoms such as ADHD and anxiety OCD and the tics. That is the only kind of help Dr's are willing to give and I am desperate. If someone here can lead me to a Dr. who would want to treat PANDAS, who accepts insurance, I would be more then willing to try it. We have seen many different types of Dr's over the last six years. I would like to start a PANDAS support group blog because it is a lonely place to be as a parent without the medical community supporting these kids.
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