Medicating for Autism spectrum disorder?

[Lisa1970]

I really did not want to medicate, but my son is clearly miserable. We have moved him to mostly organic foods and no dyes and things like that. We give him vitamins and B6, B12, Folic acid. But he is continuing to go downhill. He spends much of his day crying and seems miserable. I feel so awful for him. Last night, he was so upset, he was throwing things upstairs while our younger son's 1st birthday party was going on. He was not jealous or anything, he was just melting down.

I was on a lot of antidepressants while pregnant with him and I have many times felt like that is the cause of his problems. This is because he acts like someone who is on serious withdrawal from antidepressants, only, he is not getting better. I got pregnant with him right after having a son at 24 weeks who then died. I was very depressed due to my baby dying and was on antidepressants. I just keep feeling like the antidepressants while pregnant, and I was on high doses, caused this.

Anyway, I hate to see my precious little boy so sad. It is like he cannot cope with anything and he cannot enjoy life anymore. Times of clarity with him are becoming fewer and further apart. He will be 9 this month.

What do you think? I am going to go ahead and make him an appointment. Anyone have any better ideas? Or at least advice on this? Or encouragement? Thank you.

[Linda on the move]

Originally Posted by Lisa1970

I was on a lot of antidepressants while pregnant with him and I have many times felt like that is the cause of his problems.

You didn't cause this. My DD is also on the spectrum and I didn't take any drugs at all while pregnant. It's just one of those things and it isn't your fault.

Can you link to a thread about your son, what sorts of therapies he's in, what his school situation is, etc. I hate for you to type all that up again since it's most likely in here some where.

What sort of meds are you considering?

I'm a fan of trying to fix the situation as much as possible rather than medicating, but would put my DD on anti-depressants if nothing else worked. She's spent time in cognitive behavior therapy and had a social skills class, and changed schools this year. All those things have really helped.

Is he seeing a counselor or social worker or some one?

[Emmeline II]

We had a year of different discipline strategies, behavior charts, etc. in school, in addition to what we had tried in the past. Once ds was on appropriate medication (diagnosed ADHD and possibly Asperger's) life got SO much better for everyone, in addition to a change in schools which is very supportive. Ds was never a "sad" person but ALWAYS being in trouble beat him down.

I would make an appointment with a psychiatrist but I would also try to get him in to see a developmental pediatrician.

[Lisa1970]

He was already diagnosed with PDD-NOS so he does not need a new psychologist to diagnose him. He will not be eligible for a re-eval for another year either. He does not see a therapist, as I do not know who he would see, what kind of therapist, where to even go for this. He used to received services through the public school, but they were more harm than good. He had a therapist there 4 times a year. But, when he actually had issues, they would shut him in an empty conference room. He was not physical back then. I think the extreme, and imho, abusive, punishments led to him acting out like he does now. Even the therapist from the school confided in me that she was not comfortable with how he was being treated by the staff at the school. He would simply not talk when asked a question, and they would physically grab him and carry him out of the room and lock him in the conference room for hours. He would miss lunch and everything.

I have homeschooled in the past and decided that homeschooling would be the far better environment for him at this point. But, we found that the hippo-therapist we were referred to seems to be a scam. After looking in to it in depth, we found that they do tons of fundraisers, but seem to have no clients. They seem to be just a place where the people want to have their own ranch so they use hippotherapy as an excuse for the fundraisers. They seem to raise a lot of money too. I did call the news and told them about it in hopes they would run a story about the scam, investigate it themselves and run a story and all. Don't know what will come of that.

But back to his help, this is it. I cut off the public schools and cannot find any private resources. The psychiatrist he was referred to ONLY does medication. She does not do therapy. So that is it. That is all we have been given referal to.

[Lilypie32]

Guilt is a terrible feeling isn't it? I too feel the guilt. I let his pediatrician vaccinate him with 6 vaccines at once while he was ill and it all went downhill from there. I know what caused his autism and it isn't genetics. But, guilt won't fix it. It only hurts us in the end. It is best to try and get past the guilt. We can't change it now. It is time for acceptance and acceptance is hard.

I have finally decided to try a medication for my son because we are both miserable. I am taking him to a specialist this next Wednesday and will likely start something then. I'd be happy to share what he is going to try after we go.

Have you tried any type of biomedical approaches like chelation or the like? I just cannot afford it right now. I am willing to try anything now as my son's behaviors escalate and life gets worse and worse for us both.

As for the school secluding him, it just angers me to no end when schools do this. Have you tried putting him in a better school more suited to his needs? I would also put in his IEP no restraints/seclusions as well. My son has been in a special needs school for 4 years now and it has helped so much. He went from basically nonverbal to speaking in 2-3 word sentences. Have you checked out wrightslaw.com for info on your child's legal right to FAPE (free appropriate public education) and info on IDEA? If not, please do so. I urge you to call your school district and get info on what programs are available in your area for kids with autism.

With regard to therapy, my son does equine therapy, speech, OT, PT, behavioral, and social skills. He has speech, OT, and PT written into his IEP and the school must provide it.

You should be able to seek out a counselor (not psychiatrist) for him to do therapy with. There are lots of therapists willing to come to the home and provide therapy as well. That is the route we take as it works best for us.

I hope things get better soon for you guys.

[heatherdeg]

If you were taking Paxil or Wellbutrin, Google to find out about the pending lawsuits. I'm not sure if this would even fall under that, but it's worth looking into.

That being said, I had none of that and my son was dx'd with PDD-NOS and that was at 3yo after 2years of Early Intervention and coming out of a more fully autistic presentation.

We were under the care of a neuro that was with Kennedy Krieger Institute in Baltimore and he was medicating for children in the spectrum in the hopes of "rewiring" their brains. We declined; and 4 years later, we often wonder if it was the right thing to do. Our son is 6-1/2, his PDD-NOS dx was lifted but he was flagged for re-eval at 8yo for Asperger's and dx'd with wicked ADHD. He's a VERY moody, sensitive, tends-to-the-sad/negative kind of kid. I often wonder if he'd be this difficult to deal with and/or this unhappy if we'd have medicated him.

You mentioned that you don't do food dyes and I think this is a reference to Feingold; but Feingold is not just about food dyes & preservatives. It's also about a naturally occurring substance (even in fresh, organic food) called salicylates. So if you heard about removing dyes/additives from someone and thought you were following Feingold, I just wanted to let you know that there's more to it. Among other things, Feingold removes apples, peaches and tomatoes for a period of time to "test" for sensitivity to salicylates. Just putting that out there.

[Emmeline II]

Originally Posted by Lisa1970

But back to his help, this is it. I cut off the public schools and cannot find any private resources. The psychiatrist he was referred to ONLY does medication. She does not do therapy. So that is it. That is all we have been given referal to.

Our ds psychiatrist doesn't do therapy either, she diagnoses, evaluates, and medicates (we asked, she wasn't pushy).

She suggested we also get him "psychotherapy." We didn't feel ds was benefiting from the family therapist we had been seeing so we asked for a recommendation and she recommended a therapist in her building. This therapist does CBT; we met with her last week and ds will be meeting with her today; the therapist and the psychiatrist will be communicating with each other concerning ds.

[Linda on the move]

Originally Posted by Lisa1970

The psychiatrist he was referred to ONLY does medication. She does not do therapy. So that is it. That is all we have been given referal to.

A talk therapist is different than a psychiatrist. Depending on your insurance, you may not need a referral. If you don't have mental health coverage, check into resources in your city because MANY cities have agencies that provide counseling on a sliding scale.

[QueenOfTheMeadow]

;hug Ds1 had talk therapy, physical therapy, occupational therapy, speach therapy, play therapy, acupuncture. He's on all the supplements you mentioned plus many more. We are currently doing chelation because he has high lead and mercury in his system. He's on a gluten diary egg free diet, plus no dyes since he tested sensitive to them. And I'm sure there are many other things that I'm not remembering off the top of my head.

Then last summer he started to fly into rages, followed by severe regret. I couldn't leave him alone with his younger brothers because we were never sure what would throw him into a rage. As for the regret, we're talking hours of crying and saying he was sorry. It was awful. We were both exhausted and crying by the end of every.single.day.

Then school started. He's in a class for kids with emotional and behavioral challanges. His teacher was one of the most amazing woman's I've ever known. We talked every week and met with his team every month.

But when I got a call from the school saying I needed to come pick him up, I knew things had gone past where we could handle things the way I had wanted to. He wouldn't leave classroom and they had had to remove the other children. He was pacing like a wild animal put in a cage that was too small for him. He was yelling at his teacher, the vice principal, the psycologist, the speach therepist who where all there to help calm him down. I walked into the room and he went wild. He said he wasn't leaving. It took me 15 minutes to just get him out of the room. And he shoved me on the way out of the door. I called my dh from the road and told him that I needed him to come home, because I didn't know who I was bringing home. But the time we got home, he was sobbing uncontrollably. He kept saying he didn't want to hurt anyone and he needed help. It broke my heart like you can't believe. Two weeks later, after 3 meeting with a pediatric psychiatrist, we had him on medication. He's on something that is actually a blood pressure med that seems to help kids with impulse control and reigidity.

It's been amazing. I can't say we still don't have some hard times. But I can say that this summer was wonderful. Maybe a meltdown a week? He's happier because he's more in control. He's doing so much better in school because he's more able to pay attention to what he's learning and not so anxious.

It's hard though. It's not the way I wanted to go. I also feel guilty about somethings during my pregnancy, because I was on the pill and didn't get my period on the pill. I was 4 months pregnant before I figured it out. But the fact is, I will never know why. I can only move on from here. I can do what is best for our family and our child from a place of strength and not one of guilt. Not to say there aren't days when I have those guilty feelings, but they are much easier to deal with as time has gone on.

OK, that was a whole wordy post. But you're not alone.

[ExpatMum]

We started our 5yo son on Risperdal (risperidone) six weeks ago and it has turned our family around. If you find Bisou's post regarding her son, it was IDENTICAL to our journey - eerily so.

FIve years ago I never, ever would have imagined putting my child on a medication to modify his behavior. However, his life is sooooo much better for it and our house is a much better place as well.

Do what is best for your family and try not to feel too guilty about it

[Kristine233]

First of all, don't blame yourself. Moms have enough guilt in their lives to be saddling even more blame on themselves. We feel guilty over EVERYTHING. Nothing you did caused this.

As far as medications, you generally medicate for accompanying things like ADHD or Anxiety. There isn't an "Autism Medication", yeah, people actually ask me that still. lol. It really depends on the child and the family, but sometimes if you can help with one of the sub-issues then the over all health and well being of the Autistic child (or any child) can improve because its one less thing to struggle with. My son takes anti-anxiety meds and I was very anti-meds for years. But we found that when he's on them and not dealing with the anxiety, everything else is easier for him. So we medicate for the anxiety so everything else we do can actually help him and he can focus on other things. (BTW, his meds are a med for high blood pressure too, but are used as an anti-anxiety medication... you see that a lot)

[SilverLace]

My DSS was diagnosed with AS and AHDH 3 years ago. Two years ago he started on Tenex and it has helped all of us.

He was much like others describe...meltdowns all the time (sometimes more than one a day), total rigidity, unpleasant, and impulsive.

The Tenex has basically turned the volume down. It didn't make any of the behaviors go away but it did reduce them so that we could all function.

In addition to Tenex he gets therapy (used to be weekly for years, now every other week), social skills groups (at school and an Austism center), one on one social skills coaching. Honestly I think he needs some more biological supports (dietary, vitamins, chelation) but I'm the step mom and neither of his parents think that way about it or want to approach it that way.

I was super anti-med before but we were all too miserable.

[mrsfru]

I think you are blaming yourself unnecessarily and can let yourself off the hook. Without meds, you would have been very ill and unable to care for this wonderful child you've been blessed with. There's much evidence that a mother's untreated depression during pregnancy and early childhood is actually more likely to cause problems w/infants and children than medication. Your docs wouldn't have kept you on something while you were pregnant that was terrible for a pregnancy.

As for your son...here's our story....I resisted for months...my son was only 3 and 4 yrs old and crying daily, totally withdrawn, unhappy. He was deeply sad and overwhelmed, and he could tell me that he was sad. He was very anxious (his current dx is "anxiety", but he's in therapies for things related to mild autism or Aspergers and that's what they think his dx will eventually be). At any rate, we started zoloft for anxiety 4 mos ago, and he is a brand new kid. He laughs, he giggles, he sings (constantly!), and he's gained some new skills that he was way behind on. He has started trying to do things he couldn't do at all. I really regret waiting as long as I did to try it--we wasted almost 9 mos or so. As my husband put it--"What's the worst that will happen? Maybe he'll have some bothersome side effects, and if so, we'll take him off of it and try something else. But if it works, it would be great!" It's been a great decision for him. I don't necessarily like giving him strong medication, esp b/c he already needs allergy and asthma meds, but it's been worthwhile.

One of the things the developmental ped pointed out to me that helped to convince me to try the meds was that when depression or anxiety is ongoing for a really long time, it creates very strong neural pathways in the brain that are hard to undo later. It's like the brain is practicing depression constantly and getting very, very good at it. Meds can help stop that from happening and help retrain the brain. She also said that it doesn't have to be forever--our main focus is to get him through this crisis and help teach him better coping skills.

hths Best wishes w/a tough decision!

mrsfru