1 step forward, 2 steps back- how common is it?

[Gena]

Lori - I was think about you guys today. How are things going?

[JTsMom]

Hey Gena,
Thanks for thinking of us!

Things are looking a little brighter. I did decide to discontinue the GFCF diet, and have seen no negative changes. Things seem SO much more manageable to me with that aspect gone, I can't adequately express it. Jason has been so happy to see some of his favorites back on his plate, it has literally brought tears to my eyes. That probably sounds silly, but sometimes little things can be huge.

We've continued with the 5-HTP, but discontinued some of the other supplements. No negative changes there either. I can definitely tell a big difference if we skip the 5-HTP though, so that won't be going anywhere for the time being.

I decided to hold off on trying any type of Rx meds until some more time passes after the diet switch.

The disrespectful behavior has continued, but I'd say he has toned it down a little. I haven't discussed it with any pros yet, b/c I'm afraid of adding an ODD dx to the mix (I don't think it's severe enough to warrant it), so I'm trying to tease out how much of it is personality, how much is anxiety, and how much of it is just... whatever. I actually popped in here to post about this very issue.

I think that he might have some type of anxiety-related script running in the background of his brain at all times that makes him feel like he's constantly being attacked. It's like he has to argue, even if he doesn't disagree with whatever I'm saying.

For example, I can say something like, "Jason, please go get your toothbrush." He'll say, "You can't make me!" in a really snotty tone as he's walking to get it. When I handed him his dinner, it was still pretty hot. He mentioned it was too hot, I said, "Just give it a minute and it will cool down." and he replied, "Nooooooooo!" in the same tone, then mumbled some other stuff to himself. I know all kids do some of this type of thing, but this is 75% of our interactions these days.

Sometimes he'll just come up to me, and out of nowhere he'll say something like, "You can't make me ride my bike." (which he enjoys doing, and which hasn't been mentioned at all that day), or "You'll never break my toys", "You WILL take care of me!" or "You may NEVER do X". It's always something that he seems to pluck out of thin air, but that he must be thinking about, kwim?

I've tried explaining that some of these things are rude to say, that I understand his worry brain might be telling him X, but that it will never happen, etc., I've tried having him re-phrase- nothing seems to stop it. Some of it seems to be more anxiety related, and some of it seems to just be defiance for the sake of it.

I'm reading this right now, and hoping to pick up some clues from it.
http://www.amazon.com/Freeing-Your-C...d+from+anxiety

[egoldber]

Lori, I just saw this.

A lot of what you describe him saying sounds a lot like anxiety. The fact that he is responding to the 5HTP would reinforce that for me. I know that *I* feel much more anxious when I don't take it.

But if his anxiety is more than mild, 5HTP is not a long term solution. And from what you describe of the scripts he has running in his head (which is how older DD used to describe it as well) I think that his anxiety level is probably more than mild. What they actually tell you about it always just the tip of the iceberg in terms of the full scope of the worries.

Before she started medication, older DD told us "it was like she had racing thoughts that she couldn't control". She also used to have a lot of defiant like behavior that I realized in retrospect was an anxiety panic response. Both CBT therapy and medication have really transformed her.

How have the docs wanted to treat anxiety? With meds or in a combo with CBT therapy? The best treatment for anxiety typically involves both meds and therapy. Unfortunately, without the meds it can be difficult for them to implement the coping strategies they learn in therapy. We saw some improvement with older DD with just therapy, but it was when we started her on the medication that we saw real results. Unfortunately, finding the right meds and the right dosages can be trial and error.

[JTsMom]

Thanks for chiming in Beth. I appreciate your insight.

Interesting about the scripts. That was more of a guess on my part, but your DD describing it that way too makes me think I might be on the right track with it. I also wonder what else he doesn't/can't tell me. He has a really hard time verbalizing more abstract things, so I can only imagine what is really going on his brain. I've always felt like he had PTSD after his surgery at 3 months. He had extremely strong reactions to things that several people told me they'd never seen before. To this day, he has extreme fears about certain medical things- like EKG's or anything sticky. It makes me sick to even think about it.

The new thing today is every time I say anything with the least bit of correction in it, he says, "So you don't love me any more?" I'm horrified that he's asking that, and I'm praying that it's just an attention-seeking thing, but I'm not confident that it is. Sometimes I think so, but my gut says he really is worried about that a little on some level. I think he's starting to realize how much some of his behavior bothers other people, and he's feeling self-conscious about it. He's mentioned worrying about people laughing at him before.

The developmental ped. is the one who offered to try to treat the anxiety with meds if we wanted to- specifically Buspar. She did say that some of what I described sounded like they had more of an OCD component though. When we originally talked about it, one of his main fears was red lights on electronic pieces- our DVR has a red light when it records. He also used to be very afraid of a certain noise the washer made. Lately, it's been volcanoes, undersea storms and jellyfish (thanks Octonauts!). ETA: And bandits. His word. He's also had other OCD symptoms. He went through a phase of obsessing about nails (finger and toe- not hardware). He couldn't stop himself from touching other peoples'- even people he'd never met. When we started Feingold, that instantly disappeared- like someone had flipped a switch.

We did talk briefly about CBT, but I had no luck finding anyone who uses it who accepts our insurance and is within a reasonable distance. Now that it's worsening though, I might have to try to find someone in the city and just do the drive.

Would you let the dev. ped. just write the script, or see a psychiatrist or psychologist first? I want to make sure that we're targeting the right thing, and I get the impression that the dev. ped. doesn't have a ton of expertise in this area. She didn't sound too confident when we were tossing about possibilities.

[Gena]

It's like he has to argue, even if he doesn't disagree with whatever I'm saying.

For example, I can say something like, "Jason, please go get your toothbrush." He'll say, "You can't make me!" in a really snotty tone as he's walking to get it. When I handed him his dinner, it was still pretty hot. He mentioned it was too hot, I said, "Just give it a minute and it will cool down." and he replied, "Nooooooooo!" in the same tone, then mumbled some other stuff to himself. I know all kids do some of this type of thing, but this is 75% of our interactions these days.

Sometimes he'll just come up to me, and out of nowhere he'll say something like, "You can't make me ride my bike." (which he enjoys doing, and which hasn't been mentioned at all that day), or "You'll never break my toys", "You WILL take care of me!" or "You may NEVER do X". It's always something that he seems to pluck out of thin air, but that he must be thinking about, kwim?

DS goes through periods of anxiety where he says these types of things too: negating adults just for the sake of doing it and picking fights that make no sense. It's frustrating. And it is difficult to know what he's really after in these conversations. I also wonder how much of it is just the age.

DS's psychologist has told me that many children with autism experience anxiety, so it is something we are watchful of. Right now we try to aleviate his anxiety by controlling his environment and his sensory diet. But I know the time may come when that is not enough.

We had a minor setback in behavior when he switched to his summer program, but things seem to be settling down for now. School starts in 3 weeks, so the routine will change again.

[egoldber]

Would you let the dev. ped. just write the script, or see a psychiatrist or psychologist first?

A psychologist cannot write a scrip, he'll have to see the dev ped or a psychiatrist. I would see whoever is most convenient, because you may need to see them often and you will need to see them every few weeks initially. Older DD had a disastrous reaction to the first med we tried and it really took us about 6 months of tweaking the second one to get the dose right. But ever since we did, life has been so great.

OCD is a form of anxiety and I think that CBT is used to treat that as well. I have not found anyone near us who takes our insurance who will even call us back or they have a several month wait for new patients. We end up going out of network and getting reimbursed at the out of network rate, which is 60% for mental health visits for us.

The new thing today is every time I say anything with the least bit of correction in it, he says, "So you don't love me any more?"

You kniw, just before we tweaked her meds the last time, older DD was going through a phase like this. She was completely overreacting to things and saying, when corrected in a very mild way for minor infractions, "I'm such a terrible person! I'm horrible!" In talking to her therapist, we agreed that this was probably a combo of some depression (which typically goes along with anxiety to at least some extent) and also attention seeking behavior.

The therapist encouraged DH and I not to overreact to this, but to gently remind her, "No, you're not a terrible person, you just made a poor choice" and then to move on and not engage her about this. This helped, but I have to say this was the primary impetus for us to increase her med dosage. We had been reluctant since we saw a lot of improvement at the lower dose she had been on, but on this higher dose she has really become a different kid. So much happier and more easy going.

[MamaKath]

I think that he might have some type of anxiety-related script running in the background of his brain at all times that makes him feel like he's constantly being attacked. It's like he has to argue, even if he doesn't disagree with whatever I'm saying.

This sounds like my ds so much. Dh and I were talking tonight and realizing that one of the issues with Adhd is often an anxiety track. For ds that sometimes manifests as a feeling of things are being done intentionally to that individual to hurt them rather than just being dumb choices on another person's part. We also deal with scripts.

Beth gave you great advice, she definitely has a more successful outcome than we have had.

Thinking of you as you continue to work through it. I am going to check out that book as well!

[JTsMom]

A psychologist cannot write a scrip, he'll have to see the dev ped or a psychiatrist. I would see whoever is most convenient, because you may need to see them often and you will need to see them every few weeks initially.

That I knew, but I was wondering if I should jump right into meds or have him talk with someone else first to see if the agree that it is anxiety, or if there is another diagnosis that fits better. Nobody is going to be convenient, unfortunately, unless I get his regular ped to do it. The dev. ped. is an hour and a half away. We do have one counseling center that is in-network in our little town, but it isn't the best match for us (religion-based).

[JTsMom]

This sounds like my ds so much. Dh and I were talking tonight and realizing that one of the issues with Adhd is often an anxiety track. For ds that sometimes manifests as a feeling of things are being done intentionally to that individual to hurt them rather than just being dumb choices on another person's part. We also deal with scripts.

Beth gave you great advice, she definitely has a more successful outcome than we have had.

Thinking of you as you continue to work through it. I am going to check out that book as well!

So far, I really like it. Hope you will too.

The "So you don't love me?" thing hasn't come up today even once, so here's hoping it was a fluke. He has been crazy hyper though. We just finished school last week, and haven't done anything structured. I think I need to set up something for him.

[egoldber]

We do have one counseling center that is in-network in our little town, but it isn't the best match for us (religion-based).

Many faith based counseling centers provide therapy that is not faith specific. Especially something like CBT (if someone there practices in that mode) could easily be done without even needing to bring faith into the session. For example, I know many people who get services through Jewish Social Services and are not Jewish. But therapy is an integral part of the services that they provide. This group may of course be different in its approach, but I would investigate (if you haven't already ) before dismissing.

However, I would certainly consult a therapist before going to meds. Even with meds, a therapist will provide a framework of tools and techniques that will be helpful. I also really appreciate having the therapist as a sounding board when situations arise. Especially as the kids get older and have to navigate the social arena and the difficulties that arise there.

Also I would be pretty reluctant to have a regular ped prescribe anxiety meds. I would want someone who is experienced in dealing with anxiety meds and with your son's issues. Is the dev ped comfortable prescribing and making med changes/tweaks without seeing him? Since he is the most familiar, that may be the best choice.