Non-medical autism treatment--need help

[Rebecca2009]

Hi,

My little boy just turned 8 and he was diagnosed with autism almost 4 years ago.

Long story short, he has been on Risperidone for almost a year and a half.  We have been gradually lowering his dosage.  It's been rocky at each step down.  Today he's been having terrible bouts of screaming, his leg twitching, etc.  I wish we'd never put him on this med.!!  It is heartbreaking to watch him during these tantrums.  I have to hold him sometimes to keep him from hurting himself or hurting me.  He's also been breaking things and flipping over chairs, etc during the worst of it.  He has times in between where he seems happy but he is pretty hyper.

I am hoping to eventually get him off of this med. completely.  My son has also been on a gluten free diet for over a year and it has helped him tremendously.  He is not allergic to wheat but the gluten affects his brain chemistry very badly.

Does anyone here have experience with taking care of an autistic child without medical interventions?  I would love to hear what you are doing.  Thanks.  Also has anyone here been through med. withdrawals, either yourself or with your child? 

[sbgrace]

Hi!

We thought about Risperdol when my son was 3ish but ultimately decided not to do it. My son is still volatile but much safer and easier to manage than he was at 3 or even 4. Every child is so different, though. I know some kids really do need meds like that and benefit greatly. I'm not sure we qualify as no medical though as he has a metabolic condition and treating that definitely helps his spectrum "stuff" sort of like I imagine gluten free helped your son. Food was hurting mine too--just in a different way.

I hate to read of that withdrawal and to be seeing it as a parent..I can't imagine. I feel so badly for you and him both. How much longer does he have on tapering doses? I feel for you.

[Lollybrat]

Hi Rebecca & welcome!

My son is 6.5 and was on Risperdal for about 14 months. He has been off of it since August.

We originally put him on the medication becuase he was very aggressive and violent. After he gave me a concussion, we became seriously concerned that he would injure another child or himself. Other children were afraid of him and did not want to be around him. And you can't work on social skills if other kids refuse to come near you. It was heartbreaking. So we put him on a very low dose of Risperdal. This was one of the hardest decisions we ever made.

The medication took the "edge" off his temper and slowed down his frustrations. It was enough to allow us to teach him other ways of dealing with his emotions. For a full year we worked a lot on emotions and social interactions, anger and frustration. We also started giving him Gaba and an Omega suppliment with a high EPA/low DHA ratio. We noticed that DS was stimming more (and differently) while on the medication and showed some other anxiety behaviors.

Over the summer, DH and I decided to wean DS from the medication and see how he would do. Since his does was very small to start with, it didn't take much-stepping down. He had a hard time with more (intense) tantrums than usual for a couple of weeks. We were relieved to find that DS's agressive behaviors did not return, even in larger groups of children. And his new stims eventually stopped. (He still has the old ones.) He did develop sleeping problems after we stopped the Risperdal, but a little melatonin at night has helped with that.

I don't regret that we put DS on the Risperdal. It did exactly what we had hoped it would do: take the edge off DS's emotional outbursts enough that he could learn better ways of coping and not injure himself or someone else. And I'm glad that we were able to take him off the medication. DS still has behavioral issues, but DH and I feel that we can manage those with therapy and other techniques. We still keep him on the Omegas and Gaba.

I'm sorry to hear that your son is having a hard time with withdrawls. I hope it gets better soon.

[Rebecca2009]

Thanks so much to both of you for your replies!

We decided to try the medication in order to help him function too....he couldn't learn anything else if he was having meltdowns all the time.  I think for him the GF diet and the med. were both just as important.

He got on too high of a dose over this past summer.  Summer is hard for him with school ending, different schedule and also the first few weeks of heat really bother him. So we n(his dr. and myself ) increased his dose which helped at first, but after a month or so he was very zoned out.  To the point where the teachers and also his pediatrician suspected seizure activity.  But his EEGs were pretty much normal.  It wasn't until the neurologist heard about the increased in my son's med. that we learned, that was what was causing his odd behaviors.    He never should have been put on a higher dosage!! 

After stepping down his afternoon dose first (he gets it AM and early PM), my son brightened up right away.  Then we began to gradually lower his morning dose too.   And now he has become his old self  :-) ...... which means he is a handful, but so much better than having him be so lethargic, etc.

We are back now to the dose he had all last year (before the summer increase).  I was hoping to maybe reduce it even more but we will have to take it very slowly.  This last step down has been the hardest.

I know some of his tantrums yesterday were because he had gotten into quite a bit of foods he is not supposed to have, over the weekend.  He was grabbing things and stuffing them in his mouth before we could grab them back.  I am trying to explain to him that this is part of why he was feeling so bad yesterday.

It is hard to communicate with him because he is pretty much non verbal.  But he understands much more than he can say back to you.

[Kristine233]

The biggest thing for us has been to work on routines, visual cues and other ways to help reduce frustrations.  We also did a LOT of OT to help with his sensory needs and help him learn ways to get the physical stimulation to avoid feeling overwhelmed. He did a lot of social therapy groups (and still does) to help work through frustrations with others and himself.  It was hard at first and there were times I could only just sit with him in a bear hug for an hour because he was so destructive and violent, but we got past that and as he learned ways to cope and reduce frustrations it got a lot better.  He is on medication but its for anxiety.

Goodluck mama!

[Linda on the move]

My DD is on the high functioning end of the spectrum, but a proper sensory diet is really key for her. The Out of Sync Child was our bible when she was younger. Keeping her sensory issues at bay is the important part of helping her function.

[Rebecca2009]

Thank you very much for your replies!

I am taking one of my daughters to a naturopathic physician next week.  I think soon I will also take my son as well.  I am hopeful the different tests and therapies will be very beneficial to both of them.