Opinions on Meds | Autism PDD

I have said before and I will say it again - I am not opposed to meds completely. It depends on the child, their age, their behaviors and the family circumstances.

However, I HAVE seen lots of over-medicated kids who are like zombies. New York is progressive, tzoya - there are definitely parts of the country that are not. There are still lots of psychiatrists way too willing to just give a pill without investigating what else could be done. And LOTS of schools who insist to the parents that the child must be medicated when other things could be put in place in the school that might help the behavioral issues.

I have to say that I disagree with the comparison to diabetes. My husband has done YEARS of research in diabetes so I am familiar with it. Insulin has been tested for years and years and is THE known medicine to help. Not only that, it is something the body is clearly missing and needs in order to regulate blood sugar. When we are putting our kids on meds, we seriously have NO idea what will work for them. And we have no idea what the side effects will be. With a child with diabetes - it is clear. Without the meds, the child will develop major complications and eventually will die from complications - maybe not for decades, but it still will most likely happen.

I just am scared of experimenting with my child's brain - I KNOW it may become a necessity at some point. I feel very fortunate that it hasn't become an issue yet, but I am certainly not naive enough to think it will never happen. And, if there is something I can do that can help my child focus or be less anxious, depressed, whatever - I will certainly do it. But, we will have exhausted all other options first. And get a highly-qualified autism doc to work with him - like you suggested tzoya. We are going to start searching for one now, since we have recently moved and need to do that anyway. I like to be prepared ahead of time, just in case!

Again, I am not totally opposed to meds and we have gone round this issue before - I just don't think it's right for my child at this time and at this point in his life. We have been seeing a decrease in meltdowns, an ability to regain control of himself BEFORE going into a meltdown on occasion, better logical thinking, and increased social skills. If kindergarten creates a great deal of stress to the point it interferes with his ability to learn, we may be looking at meds as well. I am well aware of ds' fear of failure and wanting perfection - so anxiety may well become an issue at some point.

Please remember that I have my masters in social work and have a LOT of experience in working with kids. I did in-home family therapy with foster kids for years and saw kids on WAY too many medicines. I just worry about the permanent side effects that some of these medicines have. They are mostly adult medicines being given in lower doses for kids and almost none of them have been formally tested on kids (no research studies done). And none of these medicines (besides Risperdal) have been approved to be prescribed for kids with autism - so a lot of these are being prescribed off-label. And maybe for some kids they are working and that is great! But often, as the child grows (and also when they hit puberty), the medicine stops working even at the highest dose and you have to start all over again to find a new med. Frankly, it just scares me. Not enough so that if ds needs it that it will stop me from getting him meds - but I just hope we don't get to that point. I am probably dreaming - particularly around puberty age, but we shall see...

Anyway, I am not disagreeing completely and certainly not judging ANYONE who has their child on meds - you have to do what is best for your child and for your family. I do worry about psychiatrists who have no clue what they are doing - so I would definitely follow tzoya's advice and go to a doc who has in-depth knowledge of autism and has worked with kids on the spectrum in prescribing meds for them. Also one who has a good rep among fellow parents of kids on the spectrum.

All of us fear with intervening with our child's brains. We that choose to medicate have usually reached an impass where the daily functionality of our children in our everyday world is at risk. It simply becomes a matter of agreeing to try something that can help the child integrate somewhat in our society without harm.

I have to point out that FDA approval doesn't necessarily mean squat on a drug trial in the long run either. The efficacy of Risperdal in the treatment of irritability associated with autistic disorder was established in two eight-week, placebo-controlled trials in 156 children between the ages of 5 and 16 who met the DSM-IV criteria for autistic disorder. Do you think 156 children is a large number? Do you think two eight week studies is a long period of time. I don't. And this study I am told by a highly esteemed university autism expert cost million.

All this becomes a team effort of doctor and parent having a relationship that is almost peer-like in the sharing of information. In eductaing myself I can clearly articulate what dosages I'm comfortable with, meds worth trying, studies I've read, etc. And looking back at all the mistakes made with doctors and meds, I have learned an immense amount of info from them, but sometimes at a cost to my son. I pray every day I make the right decisions.

We have a 10 year old daughter that has been on medication since the age of 4. You are so right when you say you need to be educated on the different medication because you do want to know what they are prescribing to your child.

Through a lot of trials and bad experiences for my daughter on meds I educated myself so I know what class of medications they are prescribing and the specific part of the brain that the medication is manufactured to target.

It should be noted that all avenues should be explored to rule out reasons for a child's behaviour before a medication trial is started. Things to explore can include but are not limted to:

Learning Disability

Vision problems, including visual perception

Central Auditory Processing Disorder (CAPD)

Sensory Dysfunction

Neurobiological Problems like Tourettes Syndrome

Epilepsy

I will give you a brief overview of the classes of medications they tend to presribe but please know this list is not exhaustive by any stretch of the imagination:

Anti-Psychotics

A class of medications known as neuroleptics. They are manufactured for the label use to try and control and stabilize patients with bi-polar and schizophrenia and psychotic episodes. There are how ever many "off label" ues for this medication.

Off label means that the product monograph indicates what the drug is intended for but doctors use it to treat other conditions because it has shown to be effective in treating other disorders. This would include things like agreession, violent tendencies, tantrums, rages, irratibility etc.

Common Anti-Psychotics

A few years ago there was not many choices when choosing a neuroleptic. Many of the older anti-psychotics had terrible and permanent side effects so they were not readily prescribed. These included:e.g., flupenthixol, loxapine, perphenazine

Today thanks to research there are new a-typical anti-psychotics e.g., Zyprexa, Risperdal, Seroquel, Clozaril. These newer anti-psychotics have fewer side effects and are better tolerated by most patients. However please know that with any medication there are side effects. The most pronounced side effects of the medication ususally disappear or greatly improve after the body gets used to it. This is dependent on the individual. A relatively rare, but very serious side effect with any anti-psychotic medication is movement disorders. The scary thing about movement disorders caused by neuroleptics is you may not know that your child has a movement disorder until they are taken off the medication. An example would be tardive dyskenesia.

The rule of thumb with any psychiatric medication is to start low (dosage), go slow (at increasing the dosage) and prescribe the lowest effective dose for the individual. Most neuroleptics are prescribed according to body weight. Many of the newer class of neuroleptics cause weight gain and in some it can be significant. It is something you have to decide and weigh your options (pardon the pun!). Many of the atypical anti-psychotics have a mood stabilizing component as well.

It has been our experience and during my gathering of information discovered that children with ASD are often quite sensitive to medications. What would appear to be a low-non theraputic dose for a child the same weight as yours may be all your child needs. This is something to discuss with your doctor.

Please note that unless there is a serious allergic reaction to any type of neuroleptic it should never be discontued cold turkey. It should always be a gradual reduction over at least the recommended 3-6 weeks. Many of these medications have what is called a shelf life. This means that it could take anywhere from hours, to days to weeks for the body to rid itself completely of the medication.

Anti-depressants

Anti-depressants have been around for years but the newer generation of antidepressants broke out in the 1980's. Commonly referred to as SSRI's these medications are manufactured to help those that are suffering from depression. However like the above class of medications anti-depressants are used off label to treat things like: obsessive compulsive disorder, organizational deficits, axiety, some personality disorders, suicidal thoughts, self harm, eating disorders etc.

SSRI means Selective Seratonin Reuptake Inhibitors. What this means is medications such as Paxil, Prozac, Celexa, Luvox etc target the Seratonin in ones brain. The serotoninergic system is known to modulate mood, emotion, sleep and appetite and thus is implicated in the control of numerous behavioural and physiological functions.

There has been a lot of debate about the use of anti-depressants in children under the age of 18. It is quite a controversial subject as it has been proven that in some children it can cause them to be very irratible and suicidal. There have been a lot of children, especially teens, that have taken their own life while on SSRI's. The most noted would be one of the individuals involved in the Columbine School Massacre a few years back.

Choice of many doctors is Effexor, an SNRI

Effexor is prescribed 2 to 1 compared to other anti-depressants. This medication works quite similarly to the SSRI's but it also targets neurophenephrine in the brain. Through our own experiences and education I personally would not recommend Effexor but that is just my opinion. If your child is taking Effexor and it is working that is great. Effexor seems by far the worst of the anti-depressants to withdraw from. It causes what has been described as "brain shocks" when you are withdrawing and it can cause you to be quite ill. Our daughter was withdrawn from this medication and she went psychotic on us for about 10 days.

Our personal experience with our daughter is she can not tolerate any of them. Instead of making her a happier child it created more irratibility. They caused her to rage out of control and she could best be described as a rabid dog. Please know that this is my child and these medications could make marked improvements in your child's life.

Again the rule of thumb is start low, go slow and prescribe the lowest possible dosage that is theraputic for the individual child. If you notice adverse side effects once your child starts any new medication always report your observations to your doctor. Your child should be closely monitored at all times by a doctor when taking any type of pscyhiatric medication. Please note that if your child is suspected of having bipolar disorder it is recommended that you rule bipolar out before you start any anti-depressant. Anti-depressants can have a very negative impact on a child with bipolar.

Stimulants

We have all heard about the stimulant medications and the effectiveness of them for children aflicted with ADHD. The most common drug we have all heard about it Ritalin. Other medications that are commonly prescribed in this class of medications are: Dexadrine and Adderal. If a child is truly ADHD they will most likely respond positively to one of the above 3 medications. Essentially it works in reverse for a child with ADHD. For you or I to take it it would make us more hyper. For a child with ADHD it actually calms them down and allows them to focus better and in turn learn more effectively.

Medications like Ritalin and Dexadrine have what is called a bounce back effect. You can tell when the medication is wearing off and this often occurs before the next scheduled dosage. It can cause sleeping problems if a dosage is taken too late in the day and it can cause weight loss and loss of appetite. These medications have a very short shelf life and thus the need for the child to take the medications at staged intervals.

Adderal SR is a once a day treament option but it too is a stimulant. Some physicians are prescribing modafanil that was originally manufactured to keep fighter pilots awake and fresh during their 12-14 hour missions. It was discovered that it was also effective for the treatment of ADHD.

Currently the only choice for a non-stimulant treatment for ADHD is Strattera. Strattera was originally developed as an anti-depressant but it failed. Like Viagra its original intended use was something completely different but was discovered to treat other problems. Strattera was found to be effective for the treatment of ADHD. It is a once a day dosage medication, it is non-stimulant and it works. It is usually diagnosed by weight. Start low, start slow and presribe the lowest possible theraputic dosage.

Ritalin Withdrawal and Rebound

Sleep problems (insomnia)
Evening crash
Depression
Over-activity and irritability
Worsening of ADHD-like symptoms

http://www.adhd-report.com/adhd/ritalin/31_withdrawal.html

Like any medication it is a decision you want to make between yourselves and your doctor. Every parent has to know that there are side effects to all medications and you have to weigh the good against the bad to make an informed and educated decision. Your child should be monitored very closely when taking any type of psychiatric medication.

Please note that if your child is suspected of having bipolar disorder it would be important to rule this out before you rule ADHD in. Stimulants can and do have very negative effects on children with bipolar.

Mood Stabilizers

There has been an increase in studies and findings that bi-polar disorder can and does exist in children. The symptoms manifest themselves differently in children. If there is a history of bipolar or mood disorders in your family please inform your doctor. There are no definitive tests for bipolar but family history combined with the childs symptoms can equal childhood bipolar.

A mood stabilizer is a psychiatric medication used to treat mood disorders characterized by rapid and unstable mood shifts. The most common is bipolar disorder, where mood stabilizers suppress swings between mania and depression, and these drugs are also used in borderline personality disorder. Most mood stabilizers are anticonvulsants, with the important exception of lithium, which is the oldest and best known mood stabilizing drug.

http://en.wikipedia.org/wiki/Mood_stabilizer

Many of these medications can have very serious side effects associated with them. Many require regular blood work as blood serum levels have to be monitored to ensure there is enough in one's system to be theraputic. Liver toxicity, thyroid and kidney problems can also occur. It is again advised that if your child is taking any type of psychiatric medication they should be closely monitored by a doctor at all times.

Typical mood stabilzer: Lithium

Anti-Convulsants (also used to treat siezure disorders) can include:

Epival,Tegretol,Trileptal, Lamictal, Gabapentin

Mood stabilizers are being used to treat some ASD children that otherwise has not responded to typical treatments. Our daughter tried Lithium and that left her with a permanent rash for life. However this is a very rare side effect but she happened to be in the 2% that this happens to.

Medication is never an easy journey to embark on. The more education you have the better it will be. Please be advised that you can't believe everything you read on the internet, be it from the drug companies or groups that are against any psychotropic medications (Scientologist like Tom Cruise). The drug companies are marketing a product that took years and millions of dollars to develop. They want to make their product as marketable as possible and tell you the good things about why their medication is the best. People like Tom Cruise have no business telling people or condenming people because they require psychiatric medications. The truth is somewhere in between. Just because one person had a negative effect from a medication does not mean it will be the same for your child. Every individual is unique and therefore requires a unique plan for them.

Medications can help make things better or they can make a situation worse. There are always positive side effects and negative side effects. You have to make the decision through gathering of information, talking to other parents, researching the net (usually search patient driven reporting sites or check your FDA listing of medications as all side effects are supposed to be reported to them) and speaking to your doctor. Doctors tend to favour some medications over another. Please make a list of questions you have for your doctor and ask them why they are recommending that particular medication. Ask a lot of questions and don't be shy. The doctor will sense that you have educated yourself and have an idea of what will happen once your child starts the medication.

It has taken us years to learn and have the knowledge that we have about medications. Our daughter has suffered some horrendous side effects but there have also been positives from medications. It can take months to find the right one for your child and when you do it will change over time. Your child is still growing and developing so dosages often change over time. We would not withold medication from our child if she had a medical illness and I personally view medications in this light. They have a role to play, they are not going to make things better over night and you still must put in a lot of time and effort to work with the child so they can learn and benefit from experiences in life. There is no magic solution but a combination of interventions likely will work the best.

Canadianmom1997 aka Tammy

Wow canadian mom - thanks for all of that! That was very helpful - and also a very good reminder that our kids react to medicines in different ways than other kids might.

You have obviously done extensive research and I am going to copy and paste this into my "favorites" file and print it out as well!

I considered meds for T since she has rapid mood swings. And I have a friend who showed real progress on Paxil.

But ... her behavior is not disruptive to others. And she is at an age where she can benefit from learning to control her own mood more. So we decided against it for now, and are workign to encourage her turning her mood around also.

That's only what we did, and I agree with Mamasquash, every kid and circumstance is different and only you know what makes life better for you all.

I have my own son on meds and most of my students are as well. Now.....I think when kids are younger under 6 you can really manage things environmentally. Tantrums etc are easier to handle. So I don't think meds should be a first choice for younger kids. HOWEVER, as kids with ASD get older and stronger meds are a good support.....THEY WILL NOT FIX BEHAVIOR. I look at the use of meds as a way to calm my son WHILE WE TEACH HIM APPROPRIATE BEHAVIORS AND RESPONSES. I get frustrated with my students parents who feel that giving meds is the answer. I think if you choose to give meds it needs to be part of a whole treatment plan. Also, you know your child and what your life is like and what you do is your choice. No one can or should impose their view on you as they don't live your life!!!!

I am a med veteran with my son. He is under the careful care of a reknown autism psychiatrist. I credit this doctor with the success of medication for my son. Without medication, my son would have had to be put in residential care at age 13, and they would have medicated him there anyway. As it turned out, my son's medication has completely eased his severe Tourette's tics as well as the dangerous aggression that surfaced when the hormones hit. Even under the care of a doctor who is a great scientist as well as "medication artist," it took about a year of adjusting the medication until we fully had our son back. He is now 16 and happy and cooperate with nary a tic in sight for over 2 years.

So my first recommendation would be to not try any medication unless the doctor you are using is HIGHLY familiar with medicating children on the spectrum.

Our doctor does not like to give any medication to a child who is under 60 lbs. Of course, there are always exceptions. But he also won't give medication to a child until there has been a formal behavior plan in place that is used in school and at a home. Once the behavior plan is working as best as can be expected, he then discusses medication. He always starts a child out on the tiniest possible dose and expects the parent and school to give him written feedback on all the observed changes (or lack of change). Typically, there is no change at first. The parents go back and discuss what to do next. Usually, there is a raise in medication unless there was a negative reaction. (ASD kids often have atypical reactions to meds, so it's vital to use a doc who's BTDT). This process continues...tiny raises and feedback...until the doctor and parents and school all agree that the medication is working. Sometimes medications have to be combined. Medication should only be considered if the symptoms are significantly interfering with a major life activity and behavior intervention has not been an adequate treatment. This all takes time. It's worth the investment. Very young children should probably not be medicated because medicine doesn't give them the language they need to overcome their behavioral issues. Only behavioral and language intervention and time does that. But as children get older and the acquired language is in place, if there still are major issues, sometimes those issues are out of the child's conscious control and medication needs to be considered. Major areas of concern are aggression, hyperactivity, lack of focus, anxiety, excessive perserveration that resists behavioral intervention and self-injurious behavior. Some or all of these issues are developmental in children whose communication is severely impaired and will resolve once communication improves. In some kids, these issues are caused by neurological misfires and really must be medicated for true improvement to be seen. It's all individual. That's why it's key to go to a good autism doc.

tzoya,

Thanks for that very thought-provoking and detailed post. That is pretty much how I feel. I of course hope not to get to the point of having to have ds on meds, but if we have tried everything and the behavior is still significantly impacting his life, we will most likely have to try it.

I think your doc is wise in not medicating kids under 60 lbs. My guess is ds will be about 8 when that happens! Right now he is still under 50 lbs and he is 6. He is over 4 feet tall though and he eats like a horse - he just burns it all off by running around all day! I just worry about permanently altering brain chemistry when you are dealing with very young kids. However, I do know there are some younger kids who are such a danger to themselves (or others), everything else has been tried and medication is working to keep them safe. I certainly don't fault parents for doing what they need to in order to keep their child and everyone else safe. I hope those are the exceptioni, rather than the rule, though.

While most parents are VERY careful about medicating their child and do a lot of research and make the best decision for their family - there are some parents who just listen to the psych (or family doc) and go with what they say - which unfortunately is medication right away (without trying other things first). I know one child who has been on meds since he was 4. Now this child does have issues - but I think given all the other issues in the family they were desperate and couldn't really take the time to try other things. I just hope and pray not to be in that kind of situation...

Adam has been on meds since he was 7. We started with antianxiety meds first, then added Adderral, and finally Abilify. He has recently changed from Paxil to Prozac mostly because of severe weight gain. Both Paxil and Abilify can cause this. We thought long and hard before we started meds. However, Adam would not be functioning at the level he is without them. He was so anxious that he would not talk to anyone and basically had numerous "shut-downs" in a day. Kind of the stereotypical view of an austistic child. Just sitting in a corner rocking. He has come a long way.

However, as others have pointed out. We have a very reputable Child Psychiatrist. That has a lot of experience with autism and slower introduced the meds with Adam. We see her at least every three months. And now that he is entereing puberty and we are changing the meds we are seeing her more often.

I think each family has to face its issues individually. I am personally not opposed to medicating a child to make the whole family dynamic "work." Of course, that's presuming the meds are appropriate for the child and that it's not done just to make the child a "zombie.' But, frankly, I have never personally seen a child in that state in all the 14 years I've been in the autism community. However, I've seen plenty of families torn apart and plenty of kids get way behind in school because some parents stand on their "principles" about medication. I don't see too many parents of children with diabetes standing on their "principles" about insulin. Nor parents of kids with raging fevers who won't use Tylenol. The trick with ASD is to find out when medication is appropriate in order to help a child live a profitable life and when it's not. I have very, very often seen children suffer without medication and never have personally seen a child overmedicated. Doctors are way more sensitized to this than in the past. And medications available today are much more sophisticated than they were even 5 or 10 years ago. I've seen kids where finding the right medication has proven to be difficult, but that's a different issue. Using medication has to be a balance. Once the child is being harmed by his own issues, that's the time to seek advice about medication. No parent can be forced to try medication, but none of us should feel like failures because we feel the need to put our child on medication. None of our children asked to be autistic. I doubt any of them enjoys being autisitic. To the extent that autistic symptoms which can't be adjusted using behavioral techniques ARE adjusted with medication, we can oftentimes help our kids succeed. Just using academics as one example, I've seen countless kids who only learned to read or do math once they were on ADHD meds for focus. For years before that, they struggled and struggled and just thought they were dumb. Once on ADHD meds that worked for them, they caught up in a matter of months. Obviously, this doesn't happen in each and every case, but it happens A LOT. Bump...this is an excellent topic with comprehensive content and ample discussion of points on both sides of the fence and EVEN on the fence...

canadian mom.....GREAT resource....thanks !

After 18 months of debate with MYSELF I have started my daughter on meds. I am 100 % postitive that I exhausted all other options, she is folllowed closely by a behavirolist, we have a home trainer and i am in constant contact with her school staff.

Meds are an option that I HAD to try....not trying seemed like a dis-service to her....she deserves to have all options available to her and meds are a valid option for children who have no control of their nervous systems. It was a much thought out decision and a lot of tears, debates, and reading went into the decision.

I know this will bring up a wide range of opinions, but I feel that it's
important to hear all those views. I've been researching online as best I can
regarding medicines the psych has recommended, to either begin now or for
down the road. We meet w/ her neuro next to see what he thinks & what he
recommends.

I want to be as educated as I can going into that appt, as I really trust our
neuro's take on things. If he says let's go with a med(s), I want to know all I
can, so I can ask the right questions & make the best decision for dd. My
concerns are her age & of course, side-effects. I don't want to give her
meds, BUT having taken Prozac & similar meds myself as a teen, I know they
can be of GREAT benefit. So, this is open to tell your own experiences, give
opinions, etc. I'm all ears... My son is 10 and we have had him on meds since he was 6, it's the only way we can keep him safe and at home. At firsy it really bothered me and it still does sometimes, but everynight I see him in his bed at home where he belongs I know I've made the right decision.

I just posted in another thread about how hard it can be to find the right meds...it can be a long, slow process.

With Mason his mood swings were out of control...he was angry all the time and then he would get emotional and/or agressive...I was very hesitant about starting meds...you hear so much about children being over medicated or meds being the doctors first solution...but we tried so much, and nothing was helping him...I just wanted my son to smile and enjoy life and it wasn't happening...and his teacher commented regularily how he was a threat to himself and others...I just couldn't stand watching him be so miserable!

We tried 3 other meds before we found the one he is on now...zyprexa...it seems to be helping a lot! He still has his moments, but overall he is definitely getting better at controlling his moods and I have seen more smiles than not lately!! I was starting to get frustrated with not finding a med that was helping either, but I'm definitely glad I didn't give up.

I think it depends on your child. At this point, I do not see that ds needs any meds for anything. That may change in the future. I personally do not want to put ds on meds unless it is absolutely necessary - as I'm sure most parents are. My big concern is that meds are not tested on kids so we don't know what the long-term side effects are. In addition, some kids can develop tics from meds and they sometimes don't go away even once they stop taking the meds. And, you might have to experiment with meds a lot to figure out what the right medicine is and the right dosage. I just wonder what that does to the brain and does it do any permanent damage?

Anyway these are my thoughts. I'm not meaning to scare anyone - but these are the reasons I wish to keep ds off meds as long as possible. Right now, he is doing fine - that may change once he enters kindergarten or any other grade. Only time will tell...

What are the reasons you would want her on meds?

We came to the decision of meds after we tried natural routes first and after he started acting up at school. It is for safety reasons for others and himself. We started meds at 4y--for anxiety. They didn't work for him. Then at 5y--bipolar meds. At 6y--med wash. At 6.5y--we got down to the 100% necessary in order for him to learn and attend school. In kindergarten--he was not able to learn because of his behavior(but he also went to a school that hadn't a clue how to interact with him). Now at 7y and many years of trying to find the med combo----he has been on a combo of only risperdal (for aggression) and strattera (impulsiveness--jumping out of cars, etc). This has been the best year of his life!!! And ours!!!

If it wasn't 100% necessary to medicated him---I wouldn't had. If he wasn't a danger to others with his aggressiveness or in danger of himself by attempting to do crazy things--he wouldn't be on meds.

Thank you everyone for your personal & candid views/stories. I appreciate
all the info. We will see neuro in in 2 weeks--plenty of time for me to think,
think, & think. The first med the psych suggested is clonidine, which is
something that's been mentioned before to help w/ dd's sleep, but dd is
also on Trileptal for seizures, so not sure what implications that would have
(don't want dd to be a zombie). I don't think neuro would go into SSRI's or
stimulants (the next meds on list) at this point--and neither would we. We
are working on getting all of our visual cues/schedules & all made up, and
some other suggestions from docs/therapists and see how things go. I will
keep everyone posted. Thanks again!