Out of Ideas - Warning, Rant Ahead

[Guest AMom2Many]

I have been lurking here for some time and I have really been amazed at the knowledge and insight that is shared on this board. As the title says, I am out of ideas:

 

My daughter SCREAMS. She throws huge tantrums and just shrieks. For the last 6 months or so, this is what she has spent the majority of her day doing. She did it before that, just not nearly as much. She is 11 and has a dx of Autism. On my path of advocating for her, I have gotten a masters in special education and now I am preparing to take the BCBA exam. At my job as a sped teacher and in previous behavioral therapy jobs, they always gave me the kids noone else can figure out/handle. And I do well with them!

 

But I can't help my own child. We've been from doctor to doctor to specialist to specialist. Each one we've seen refers her on to someone else because they don't know how to help her. Recently she went through 2 in home behavioral evaluations. One said flat that she couldn't help us. THe other came up with a behavior plan that we lock her in her room when she throws these tantrums, because sometimes (often lately) her tantrums can be aggressive. I am following this plan because I don't have a better plan. Every time I put her in this time out, it makes me sick. But I don't have a better plan. At least in there she can't hurt anyone.

 

These tantrums are bizare. It's like a switch flips in her brain and she falls to the floor and screams and convulses. It's almost like a seizure. Then, after a period of time, she will get up and say "I'm ok now" and life goes on. There is no definite function of this behavior. Sometimes it starts because she wants something or she wants to get out of doing something, but other times, there is nothing. Maybe she thought something that sent her over the edge?

 

Medication? We've tried medication. The side effects were un-believable. Focalin - great for the first 2-3 hours and then she would hide in a closet or under her bed for literally the rest of the day. And she stopped eating. She lost 15 pounds, quickly. And she only weighed 70 poinds to begin with. She had different doses and extended release. It was the same with all.

Intuniv - made her into a zombie and she stopped talking. She would sit on the couch all day and bite her toenails. If I tried to make her leave the house she would have a full blown panic attack, with more screaming.

Kapvay - made her aggressive

Vyvance - calmer but after she stayed awake for 72 hours (even with sleeping medicine) I took her off it.

Straterra - made her scream all day long every day.

Clonidine - during the day it made her irritable (more screaming). She is on it right now a night. That's the only way she will sleep. It knocks her out for 12 hours. Without it, she stays up literally all night long.

Prozac - she was on prozac for 8 months. At first, she was calmer. Bus after several months there was an increase in her behaviors. At that point, her behavioral ped referred us to someone else. I am still waiting for that appointment.

There were a few other meds, I can't think of the names off the top of my head.

 

Over the last 6 months or so her behavior has escallated to the point that she is being removed from her public school self contained classroom at school to a "trans-behavioral intervention program" which is the final step before contract services. My husband is ready to send her into residential treatment. I just want to cry!

 

She's had so many medical tests and everything comes back normal. The only medical thing that has come up is high ASO titers. I took her to a PANDAS specialist who said that she doesn't have it. Back to square one.

 

I feel so alone in dealing with this.

I feel like a failure that I can't help my own child.

If you read this far, thank you. I appreciate it.

[AmyontheFarm]

:grouphug: I can't imagine what you and your family are going through. I wish I could help. I can tell you that one day my autistic nephew was having a melt down and ran up to my sister and screamed "make them stop" over and over to her. Hours later when he finally collapsed and was falling asleep she quietly asked him "what did he want Mommy to do when he said "make them stop", he turned and told her that his arms and ears were on fire and he wanted her to make them stop burning.

 

The next day, when he was calm she brought up the conversation again and they decided that if his skin was burning he could talk a shower with cold water (he loves water). This has been very helpful for her and him. I hope and pray you can find a break through with your daughter that allows her to feel calmer and not aggressive and that you will find peace and answers through all this.

[Harriet Vane]

:grouphug:

[Lecka]

I'm so sorry.

 

I think you have tried everything I would think to recommend.

 

My little son has autism and at a support group I have been to, there is a couple who put their son in residential treatment. It is heartbreaking bc it is 2 hours away, although they see him every weekend.

 

But I believe them that he is doing better there than at home. He does well with the total predictability and structure, is my understanding.

 

I really don't know the ins and outs on that, but I don't think I would totally reject it as an option if my husband was at the point of thinking about it.

 

My son has been helped a lot working with his behavioral therapist and pre-school aide, I want to say thank you for your work. He also went to the aide who gets the "worst" kid and it means so much to me that she likes him, cares about him, and put up with a lot of behavior when he was starting.

 

http://www.thisamericanlife.org/radio-archives/episode/317/Unconditional-Love

 

I listened to this recently, and I didn't like a certain flip attitude from the people who put the interview together. But it is (for me) one of the only places I have heard people talking about a husband and wife disagreeing about whether a child should be in residential treatment. The husband wanted it earlier than the wife, but he still felt conflicted and guilty. Anyway I am glad I listened to it.

 

I hope someone else will have better advice.

 

I wonder if anyone will have an idea for what to do if it is puberty-related, or if she might grow out of it when her hormones are less wild. I don't know.

[Ottakee]

I am assuming she has had a 24 hour EEG done to rule out seizures, right? If not, I would pursue that.

 

The next thing is medication. Who do you have prescribing meds? Most of the meds you have tried are NOT indicated for use as first line meds if the child might have a mood disorder (the flipping a switch thing). If you don't have a TOP NOTCH pediatric psychiatrist or possibly neurologist prescribing the meds I would look there. 11 is also an age for hormone in girls and can be a rough time.

 

As to medications, have you tried Risperdal? It is a atypical antipsychotic used for mood disorders and aggression in autistic kids. Can be a life changing med for many kids. How about any mood stabilizers? Depakote, Tegretol, Lamictal, LIthium, etc? All but lithium are also seizure meds. If there is a mood disorder then stimulants and antidepressants (almost all the meds you listed are one or the other of these) are well known to make things WORSE.

 

Hope this helps. It took us a long time to find the right combo of meds but it was SOOOOOO worth it. They predicted my daughter would be in an out of home placement by school age and she is now my "easy" kid.....and she is not "drugged", just finally able to function well.

[chiguirre]

I agree with Ottakee. I was just about to post to see if you'd tried Risperdal and Depakote when I read her post. For GW, the add meds did nothing and Prozac sent him round the bend. The only meds that have helped have been mood stabilizers and anti-psychotics (and even then, Abilify and Geodon were disasters, so you really have to try a bunch to find a winner).

 

Another thing to consider are food triggers. For GW salicylates really do set off aggression. He can't have apple or grape juice or he flips out. We learned this the hard way. If your dd loves juice, I'd try switching to orange and see if it helps.

 

It could also be puberty. It's a rough time and many kids at GW's school have had a lot more behavioral issues at that time than before or after.

 

Good luck! I hope you can find a way through this time.

[Lecka]

I hope that is a good lead!!!!!!!

[Guest AMom2Many]

Thank you all for your ideas and support.

No, we have not yet tried anything in the antipsychotic class. Our behavioral Ped, who had been managing her meds, referred her on recently to a child psychiatrist. She said that the next med to try was risperdol but she didn't feel comfortable prescribing anything in that drug class. I'm waiting for that appointment. I believe it's in about 6 weeks.

DD has not been diagnosed with a mood disorder, but I am starting to wonder if that is what we are dealing with. I'd never heard before that add meds will make a mood disorder worse. If that's what it is, that makes perfect senseand is exactly what has happened to DD. I had been very apprehensive about moving into the antipsychotics because of all the horrible side effects that she has had in the past. I also didn't know that many of them were also anti seizure meds. That also makes perfect sense. Thank you for sharing that.

Also, no, she has not had a 24 hour EEG. The one that she had was just a couple hours and came back completely normal. However, she did not have a tantrum while she was being monitored. Interesting. I'm going to push to see if she can have that done before we see the child psychiatrist.

[Ottakee]

Seizures can go along with or mimic mood issues. Here we have both so it is great that one med covers both---but my dd is on 2 seizure meds, 1 antipsychotic, and a low dose stimulant (only AFTER stable with the others). A 24 hour EEG might be very helpful, esp. if she has a meltdown, etc. during it.

 

I know you are dealing with autistic behaviors as well but you might want to check out the book, THE BIPOLAR CHILD, and the websites www.bpkids.org and www.bipolarchild.com to see if anything there seems to fit. Also, check out http://www.bpchildren.org/files/Download/TreatmentGuidelines.pdf Print this off and highlight it if anything makes sense to you. It is an older article and since then Lamictal has proven to be much safer and effective then they knew about 9 years ago when this was written.

 

As to the meds, yes there can be side effects, but here the side effects of NO meds was MUCH worse than the side effects of the right meds. We have almost no side effects once we found the right combo of meds. It can be hard but oh, so worth it, esp. if they are considering an out of home placement.

 

I would call the psychiatrist office and ask to be put on a cancellation list if possible. Tell them they are considering an out of home placement and you need help NOW. Also, when you go, try to leave any other kids home and if at all possible, take another adult with you so that if needed they can watch your dd in the waiting room, etc. so that you can talk freely with the doctor and really focus on what they are saying.

[Guest angry birds mom]

Hi...I found this group when I was searching for a Therapeutic listening Program for my 9 yr old daughter who also has episodes of "she flips a switch"; I felt compelled to share what we have learned ... we removed SALICYLATES and limited AMINES and she is A LOT better...she can tolerate so much more...we no longer feel as if we are walking on eggshells...my daughter has CAPD,food allergies and vitamin/mineral deficiencys...salicylates are in all fruit at varying levels except peeled pears and bananas and in most veggies....search salicylate amine intolerance... we feed our daughter plain simple food with no additives .Also, Brain Allergies by William H. Philpott is a very helpful book...it explains so much .I hope she feels better soon.

[Pen]

:grouphug:

 

Hi...I found this group when I was searching for a Therapeutic listening Program for my 9 yr old daughter who also has episodes of "she flips a switch"; I felt compelled to share what we have learned ... we removed SALICYLATES and limited AMINES and she is A LOT better...she can tolerate so much more...we no longer feel as if we are walking on eggshells...my daughter has CAPD,food allergies and vitamin/mineral deficiencys...salicylates are in all fruit at varying levels except peeled pears and bananas and in most veggies....search salicylate amine intolerance... we feed our daughter plain simple food with no additives .Also, Brain Allergies by William H. Philpott is a very helpful book...it explains so much .I hope she feels better soon.

 

 

 

I also think something like this might be worth checking into, Doris Rapp, MD also has things about children with such problems, and at one point I was at an environmental health / allergy practice and saw things like sudden total extreme flipping out when someone was exposed to something that had not been suspected to be a trigger, such as cotton I recall in one case, and onions in another. There was a man with a teenage boy who was thought to be autistic, and he got well, not completely normal, but nearly so, when a bunch of triggers were discovered and reduced as much as possible. Flickering (but not noticeable to most people that they were flickering) lights were also creating troubles for some kids as I recall.

 

Checking into possible actual seizures also sounds like a good idea.

[chiguirre]

As to the meds, yes there can be side effects, but here the side effects of NO meds was MUCH worse than the side effects of the right meds. We have almost no side effects once we found the right combo of meds. It can be hard but oh, so worth it, esp. if they are considering an out of home placement.

 

I would call the psychiatrist office and ask to be put on a cancellation list if possible. Tell them they are considering an out of home placement and you need help NOW. Also, when you go, try to leave any other kids home and if at all possible, take another adult with you so that if needed they can watch your dd in the waiting room, etc. so that you can talk freely with the doctor and really focus on what they are saying.

 

 

For GW, Risperdal hasn't had any side effects. He's on a really large dose, but he's never gained weight (in fact, he's a really good athlete, tall and lean). That wasn't true of Abilify and Geodon, so even meds in the same class can act differently. As a bonus, Depakote has helped his language development imho. He's made a lot of strides since starting it a couple of years ago. Unfortunately you have to experiment with meds. Some work, some don't. I wouldn't worry about trying Risperdal though, it's well known as a treatment for aggression in people with asd. In fact, it's even labeled for use with asd.

 

Good luck!

[Alessandra]

First, my sympathies at what you are going through.

 

I have an IRL friend whose ds with autism had behavior quite similar to your dd's, and he was non-verbal. My friend has a masters in special education and many years of experience. After a lot of trial and error, she found the RDI program -- Relationship Development Intervention, even flying to another city to take the training. The difference in her son -- who now speaks a bit -- is night and day.

 

http://www.autismspeaks.org/what-autism/treatment/relationship-development-intervention-rdi

[jenncslp]

I am so sorry, my heart goes out to you! One thing that popped out of your post at me is that you said she wouldn't sleep without meds. Has she been tested for Smith Magenis Syndrome? Many times it's misdiagnosed as autism and features an inverted sleep cycle.

 

I wish I had some other advice, I will pray!