Sadly, meds are needed-Please share med experiences

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I have attempted to help my daughter without resorting to medication. We have attempted SSRI's in the past with poor results (OCD side effects). Now I have come to the conclusion that we are going to HAVE to resort to medication. My daughter is having 3-4 massive meltdowns each week now. She is self abusive during the meltdowns and violent towards me. Last night she was begging me to "make it stop". I have been very hesitant to go on heavy meds with her but at this point I think it would be abusive of me to NOT try to help her in any way possible. She is so miserable and her dev pediatrician has referred me to a ped psychiatrist to discuss "options". I am looking for stories from other parents who have children with AS who have had violent episodes and what meds have been effective. I do not want to sedate her. I also do not want to hear from posters with negative attitudes towards meds or blame me for this! I have changed her diet, we have a strict structured schedule, I have eliminated all stressors, now I do not know what other options I have.

Thanks for anything you can share with me.

My 8th grade 14 year old AS son has been using Risperdal for about the past 3 years. While I can't say it's a miracle drug, it does help in controlling rage and meltdowns. His meltdowns and particularly rage became severe as puberty set in. We somewhat expected as my oldest NT son became agressive as he entered puberty. However in our AS son, the AS seemed to magnify typical teenage anger. Since using Risperdal, our AS son is much more well-adjusted, yes there is still that teenage anger, but it is much more age typical and we take it in stride.

The worst side effect coming from the Risperdal is weight gain. Our son has gained a fair amount of weight during use and this is starting to be a concern for us. However, our son is also much happier with himself than he was at the beginning of middle school. He's also starting to enjoy a bit of a social life. If only there were other meds that would soothe his anger without weight gain. That would be a double win.

Hello, I understand you may find it a challenge to put your daughter on medication and also distressing at the same time to see her having meltdowns

Your paediatric psychiatrist should know better than anyone else what medicine would be best for your daughter, also ask if there is anything else you can do to support her when shes having a meltdown.

What do you mean by OCD side effects with the SSRI antidepressants [and how was your daugher affected], the one that is licensed in children is Fluoxetine though specialist doctors will start whatever they feel is most appropriate.

Possible stressors are school eg homework, friends and peer pressure.

Main things I would reccommend would be spending a lot of time with your daughter and really get to know her and how shes feeling - do things together like reading or playing with her toys and things she likes.

Cut out

1. Stress [as much as possible, during summer holidays she wont have school or homework and hence there shouldnt be any possibility your daughter would be stressed]
2. Aspartame, MSG [both Excitotoxins] and also sodium cyclamate - main one to cut out is Aspartame, it is found in diet soft drinks and some yoghurts. Cutting it out from your diet and your daughter is one of the best things you can do] - See documentary sweet misery, on Google videos.

make sure your daughter isnt taking anything with caffeine in it or any non-prescription pills

3. Adopt a low Glycaemic Index diet, this should keep sugar levels fairly constant and avoid sugar rushes and the horrible feeling when it ends
so snack on low GI foods, replace white bread with brown bread etc as a start

I'm currently on meds for really bad anxiety, and it has worked wonders. I'm currently taking 50mg sertraline, within days of taking the drug it has improved my anxiety soooo much! I've gone from having almost no quality of life to going out miles away on my own and I've generally just got some normality back into my life. I should've started taking them earlier, they are brilliant!

I don't think your a bad person because you are looking into medication. I will admit that I used to be more anti-medication when I was younger, but experience has shown me that medication is not an inherently bad thing. It just needs to be applied properly.

You have already identified the problem as best as you can. Your daughter is simply feeling overwhelmed, and this overwhelmed, overstressed feeling is out of proportion to the difficulty that she faces.

Furthermore, you have attempted to solve the problem by being understanding, compassionate, and caring to your daughter's struggles. And you have put considerable effort into finding a non-medication solution.

And furthermore, you aren't just medicating blindly and hoping that things get better. You clearly have an idea of what you want the medication to do, and you are willing to do the research to find out which medication works best.

And you are also not using medication as a cover to ignore a problem that you don't want to deal with.

All that said, it is my 'professional' opinion that you are indeed pursuing medication properly and with all due caution. If somebody says otherwise, or judges you harshly, then they don't understand the difficulty that you are facing, and the work you have already put into finding a solution. And you shouldn't give much credence to those who refuse to consider your position before judging you. So don't feel bad about trying to help your daughter, because as far as I am concerned you are just doing what you feel to be in her best interest.

All that to say, I am afraid I don't have much practical medical advice or experience. I can only recommend that you start at as low a dose as possible and work your way up. If you don't see any improvements within a reasonable time period, or the side effects outweigh the benefits, then don't hesitate to bring it up with your doctor and consider a different medication.

The reason there are dozens of anti-anxiety medications on the market is because not every medication works well for everybody. Sometimes you need to try a couple medications before you find one that really helps.

And make sure you get a doctor who respects what you have to say. If they aren't willing to listen and consider your input, then they aren't qualified to prescribe medication to your child.

What changes did you make? As with medications, some dietary changes won't work as well as others.

Mama

What Tracker said^ and (((((big hugs))))) to you. I know you have been really struggling to find ways to help your daughter. I hope you two find a path that provides you both some much needed relief.

She has been on a "diet" for a year now. She does not ingest any artificial colors or flavors, preservatives, or artificial sweeteners. Her sugar intake is very low. She eats a healthy balanced diet made from scratch from whole ingredients (natural). She has very little dairy or gluten. We do have some homemade pasta. She eats plenty of vegetables and fruits and very little meats-if we do have meats they are from a local free range butcher and not national meat plants. Practically everything she eats is organic and not processed.

Thank you everyone. I have made several phone calls today all being dead ends. Her dev pedi says these issues are beyong her scope and that she needs a ped psych. I called several ped psychs and all have around 6 month wait lists. They did refer me to some inpatient places but I will not even think of that-we are not to that level of need.

SO...
I need to figure out how to diffuse these violent outburts in some way until I can get her meds. At OT today the therapist stated she tried to hit her. She was also nonresponsive and mute-unwilling to work.

For you adult aspies out there-is she just really angry? I guess you can't tell from where you are. What can I say to her??? It seems any attempt by me to engage her in conversation about her being angry just makes her angrier. Could this be a developmental phase? Is she just going through something she won't talk about? This has been going on for about a month now. Her speech is "different", she seems manic at times. She can get overstimulated almost with no provocation. This has happened before-she has had periods where it just seems as though her skin is crawling-she's just so irritable and angry.

She says she "doesn't feel right" and that she "feels bad". But these have always been regular complaints of hers. The docs say there is nothing "physically" wrong.

I guess we are just going to have to get through this until we can get an appointment.

What can you say to her? Nothing. Engaging her about being angry IS going to make her angrier because she doesn't understand this herself. I think it's all internal and nothing to do with you at all. She may be lashing out at you simply because you're mom. She trusts you and she is needing you to help her.

When she's angry like that (my son has similar episodes) use as little language as possible. My son knows to go into his closet and play nintendo now. If he forgets, I hand him his game and direct him. This was pre-planned. I might have mentioned this already. We had him involved in painting a mural inside. We added a little touch lamp and Thai chair so it's nice and cozy. It's semi-dark and small so it helps with the calming process. You HAVE to talk with her about a plan for when she IS in the anger zone. We use colour codes. Green zone is where we all want to be in (happy, content, ready) Red zone is high energy (anger, excitement). Black zone is the explosive .. everything is hard zone. I hate the black zone. Blue zone is low energy (sick, tired, in pain). My son understands the zones very well. His most recent 3-week Black zone was tough .. but it's not as tough as when he was on medication (hate to say it). When he came out of it, he surprisingly noticed without realizing it himself. En route to school he told me he was actually excited to go to school. He had just come out of the Black 2 days before (Saturday). I mentioned how I noticed he wasn't in the Black zone anymore .. and explained further about all that. He was quite interested in it.

Anyway, I don't know if this will work for your daughter.. but something like having a problem solving strip:
(example)
When I'm in the Black zone, I can sit in my closet (or confined space) and _________. When I'm in the green zone, I am ready to ________.

Have you read the book, "The Explosive Child"? Good book. Highly recommend that for you.

As for the medication, my son was on stimulants, anti-psychotics, SSRI's and honestly, he was worse off. The Black zone grew, the Green zone shrunk and I was under a lot of stress I wasn't managing him well at all. I finally decided to take him off all medications, and found he did a lot better. I'm not trying to discourage you but please don't go into this thinking it's a cure. Keep an open mind. It may do wonders for your child. I hope it does. I don't think you're a bad mom at all. In fact, you sound a lot like me.. someone willing to try just about anything in order to help your child. It takes a lot of strength and patience and love to do what we do. Hang in there. You'll find a solution! xo

I have been in same boat with my 14 year old son. Puberty made everything worse. I put off any meds for as long as I could, but at 12 we started with Prozac, and now with all the increased puberty issues he now takes Abilify and Lexapro. I wanted to try the Abilify over the Resperdol(sp?) because it was supposed to have less chance of weight gain. Unfortunately he has gained weight, but it has helped. At first we thought he traded the intense anger for sadness. He cried more when he got upset, but there were far less intense meltdowns. His dr. added the Lexapro later for the sadness. Your lucky you have such a healthy eater. My son is very picky and limited in his choices. I have tried to get him to eat more lean chicken and fruit since vegetables are almost impossible. Good luck with the meds. I know it is a difficult decision, but after all the therapy there is only so much we can live with. I just got a letter from his psychiatrist saying she can not see him anymore. No explanation, just dropped him. Now off to start the search for a new one. I hope I don't come across the long wait time you are experiencing. Good luck!! !!

I can vouch for Lexapro. My 15 year old is taking it for anxiety issues, and things have greatly improved. I hope you can find a med, and a therapist, who will help your daughter.

ASDMom, we have tried the calm down corner. She actually used this quite effectively for a while. Now, when these meltdowns occur she will refuse to go. She becomes quite tyrannical and will follow me around the house crying and screaming at me. I absolutely DON'T engage her when she is "in the storm" of a meltdown. I was talking about talking to her in the calm times-but she is even resistent to that. She will not talk about her behavior afterwards nor will she acknowledge it at all. She just wants to forget it ever happened. This makes it quite difficult to determine what might help.

When she is irritable anything I do seems to "rub her the wrong way". My only option is to withdraw and let her get through it on her own. In a mild irritation she will ask for tight hugs or "snuggles" as she calls it. She doesn't want to feel this way-that much I KNOW is true! Tonight I have been doing tons of "happy" stuff with her and she is doing fine. It's almost like she needs a personal aide at all times to keep her "in check". It is exhausting for me but I know that is a mom's job.

Mama_to_grace, I just wanted to say that I'm sorry your daughter has been having a rough time, and I also wanted to let you know that I have complete confidence that you are making the best decision for your unique situation. I've posted with you long enough to know that you HAVE tried everything, and you make no decisions lightly or ill-informed. If you say it is so, I trust that it is so.

Since it sounds like you have a delay ahead, I would suggest trying to see if there is any way to calm her life down further, make things more comfortable, spend more time in "safe" places and at safe functions. Most likely it (the need to slow down) is temporary, so if slowing things down means she misses something she might have worked on or learned, it will be OK. There will be tomorrow, when maybe she can handle a little more.

Best of luck. I'm sure it's been super stressful for you and I hope you will be able to make things better soon.

I can relate! When my son was on meds, he used to follow me around the house too .. throwing things at me. I was told to make myself "busy" instead of trying to "get away" from him because that would put him in control of the situation. So I started taking baths. For one, he assumes I can't hear him over the running water. He didn't try to bang on the door for too long. Second, the fact I was "busy" calmed him down. Maybe you can try that instead?

As for refusing to talk about it later .. ya, hear ya. There was a situation that happened after school today and when I tried talking about it, he refused. Lots of avoidance behaviours: barking, clawing, silly noises over my words. I was trying to help him problem solve. He also got angry with me because it involved another boy pushing him to the ground over something my son had done to him .. poke, provoke (from the sounds of it). He didnt want to talk about his involvement AT ALL. He kept redirecting the situation about what the boy did to HIM. Anyway .. I guess I don't have much to offer you either.

DW, I really appreciate your comments. You always seem to be the voice of reason.

Of course there is always tomorrow, and regression is not the end of the world. Thank you for reminding me of that!