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View Full Version : 1 step forward, 2 steps back- how common is it?



JTsMom
06-06-2012, 10:34 AM
Jason turned 7 a few weeks ago. We started formal interventions for some of his issues around 3 yo, so we've been at this for 4 years, and I feel like we haven't really gotten anywhere yet. Sure, we've added a bunch of labels, we've tried and failed at a bunch of things, and we've ruled out stuff, but our everyday life is still pretty much the same.

We've avoided medicating, mainly b/c of his heart condition. At this point, we're doing GFCF plus Feingold and a bunch of supplements. I homeschool him so that I can cater to his needs.

Every time I think we're on the right track, and we see improvement that lasts for weeks to months at a time, we end up right back at this spot. When we started therapy, things got better for a while, then we slid back. When we started therapy at a new facility, things got better, then we slid back. Ditto for Feingold, fish oil, and our current supplements. Why does this keep happening? Is it just a surge of optimism on my part? Is it common for things to work short term b/c of some specific reason? I just can't make logical sense of it. I don't think it's my imagination b/c other people notice the same things.

This most recent change started about 2.5-3 weeks ago. Everything seemed to be clicking into place. School was going well, his behavior was good, his social skills were improving, his anxiety was much improved, and life was good. All of a sudden, it was like someone flipped a switch. Everything is back to the way it was. His impulse control is gone, he's being incredibly disrespectful and defiant, he's very hyper, and his attention span has disappeared.

We're running out of alternative things to try, and I guess I'm just trying to cross my t's and dot my i's here. Is there a reason that these slips keep happening, or is this the way it goes for a lot of people?

JTsMom
06-06-2012, 12:01 PM
36 views and not one response- I take it it's just us? lol

wellyes
06-06-2012, 12:58 PM
How discouraging that must be - I'm sorry.

elliput
06-06-2012, 01:02 PM
Oh, no! It's not just you. We have progress and regression here also. It seems that I get optimistic about the progress much sooner than I should and then when DD back-slides, I'm completely taken off guard. It is very frustrating to say the least.

:hug::hug::hug:

Gena
06-06-2012, 02:36 PM
We see this too sometimes. DS will make really great progress when we try something new and then after a while things will backslide. Usually after a while progress slowly creeps back up. We've learned to continue with the new intervention to see if we can "ride out" the backslide.

Or DS will make a lot of great progress in one environment, but his behavior deteriorates in all other environments. This usually happens when he is really stressed, like being somewhere new.

Hugs. :hug: It's really hard.

MichelleRC
06-06-2012, 05:28 PM
I hear ya.
We definitely have cyclical progress here.
We can have a good couple of weeks/months, and then a big backslide.
Like now for instance.
School is out, we just got back from a 4 day vacation and we are in the thunderstorm-every-afternoon months. So that means our schedule is not "normal", the weather causes daily panic attacks, he is not eating or sleeping well, and so on.
Sigh.

SummerBaby
06-06-2012, 06:41 PM
I feel your pain I've noticed the same thing with my DD, who has ADHD. She will be great for 3-4 weeks- so great the ADHD almost disappears. Then we will have 2 weeks of tantrums, total lack of impulse control, etc. Even the school psychologist, who has been observing her at school has noted an extreme inconsistency in her classroom behavior. No one has an explanation, and I can't figure out any specific triggers. I've chalked it up to it being the different way her brain is wired.

pinkmomagain
06-07-2012, 08:53 AM
Not sure what your child's issues are. DD2 is ADHD inattentive and anxiety. While symptoms do wax and wane, and some persist while others resolve, her overall trajectory is upward. I guess what stands out to me is that over four years of interventions you don't feel like you've moved forward. That must be super frustrating. I think sometimes we just get exasperated. If I were you I would go back to early documentation to remind yourself where you started. Sometimes I forget all the details from the beginning and when I really focus on them I feel like dd has come so very far. Also, at 7 your dc is still young. Many professionals won't even dx with something like ADHD until that age. It sounds as if you've been quite diligent with therapies and alternative approaches. Perhaps in the coming years, if the upward trend is still not there, medication may be something to consider. For our family, it has made a huge impact.

JTsMom
06-08-2012, 09:10 AM
Thanks for the input everyone. I was talking with another mom last weekend, and she mentioned noticing the same thing. A treatment would work for a few weeks or months, then stop, for no apparent reason. I was just wondering if there is a reason this happens. Could it be that their brains develop a "tolerance" for whatever the treatment is doing? Is it just b/c there is a novelty effect? Is it that I just want to believe it's helping?

Jason has several diagnoses including ADHD combined type (this was dx at around 5.5 yo- he is off the charts, so his dev ped felt comfortable diagnosing at a younger age than normal), anxiety, possible OCD, SPD, various developmental delays, speech and language delays, and a complex congenital heart condition.

Of course, he's four years older, and like any child, he's grown and changed. His language problems are much improved, for example, but I suspect that would have happened without any intervention at all.

His behavior is a nightmare. It has always been far from average, but the older he becomes, the more it stands out. Doing something simple like running short errands, or eating in a casual restaurant is still extremely difficult. We had a b-day party for him over the weekend, and he was totally out of control during some of it. He argues non-stop, about every little thing. He's having meltdowns and tantrums like he hasn't had in months. I could go on, but you get the picture.

I would do anything in the world if it helped, but as it stands right now, we're having all of the same issues, and life is much more difficult than it needs to be b/c of his diets, and we're spending an arm and a leg on supplements and special foods.

We saw the cardiologist this week (everything looks good with his heart), and he talked to us a lot about all of this. Behavior issues are very common in kids with complex heart conditions, and I think that is the primary reason for a lot of our issues, and possibly why some of the labels don't fit quite right. He wants us to be re-evaluated by the neuropsychologist again.

I'm not anti-meds by any means, but as soon as you say something like "cardiac related deaths" to me, I'm definitely terrified. At the same time, quality of life has to play a role here too. I feel like there's not good option for us, and I'm battle-weary at this point. We've done this cycle so many times, and we keep ending back up here. I feel like I'm blowing through too much time, and the longer I go without helping my baby, the more long-term the effects are going to be for him.

hbridge
06-08-2012, 10:53 AM
Hugs to you! You are a GREAT parent and doing the very best for your child!!!!

We have a grade school age child who struggles with "severe anxiety" (along with other things). The ONLY thing that seems to work is completely clearing DC's schedule. I was panicked to stop therapy, outside OT, social groups, ect. However, DC was begging to stop eveything! So DC chose one activity to keep and the rest we just took a break from. It's been about three months and we have seen MUCH improvement. Clearing the calendar seemed to help DC, however, who knows if it was just timing (the school implemented an IEP about the same time) or what. Now we are starting to add things back in as DC wants.

I don't know what your daily calendar looks like, but it might be worth a try.

Of course, my DC could also slip back into multilple daily meltdowns any minute...

Best of luck and hang in there...

JTsMom
06-08-2012, 11:23 AM
Hugs to you! You are a GREAT parent and doing the very best for your child!!!!

We have a grade school age child who struggles with "severe anxiety" (along with other things). The ONLY thing that seems to work is completely clearing DC's schedule. I was panicked to stop therapy, outside OT, social groups, ect. However, DC was begging to stop eveything! So DC chose one activity to keep and the rest we just took a break from. It's been about three months and we have seen MUCH improvement. Clearing the calendar seemed to help DC, however, who knows if it was just timing (the school implemented an IEP about the same time) or what. Now we are starting to add things back in as DC wants.

I don't know what your daily calendar looks like, but it might be worth a try.

Of course, my DC could also slip back into multilple daily meltdowns any minute...

Best of luck and hang in there...

Thanks. I'm glad something is working for you guys!

Our schedule is shockingly empty right now. We homeschool (b/c of all of these issues), so we can work around bad times/days. We're out of all types of therapy- we were discharged b/c we weren't making enough progress. We aren't doing an extra-curricular stuff b/c of the terrible behavior. We've tried in the past, but it never worked well, and caused so much stress it wasn't worthwhile.

We did have the big party, and I know that threw us off our schedule for a while, plus we had out of town company, and that always creates upheaval, but now that it's all over, things still aren't improving.

Before this latest backslide started, things were going so well that I was considering public school for 2nd grade, and was thinking about starting some activities for summer. Now, it's so bad, there's no way I'd consider either. It hasn't been this bad in a long time- probably 6 months or more.

brittone2
06-08-2012, 01:11 PM
Lori, no advice, but I wanted to say hi :hug: and let you know you've been missed around here!

pastrygirl
06-08-2012, 01:13 PM
My son seems to go through cycles, too. We don't have any formal diagnoses or plans in place yet, but I already see how he progresses and then regresses. I haven't figured out what makes him regress. He starts OT next week, with a focus on behavior. I really hope it helps.

Gena
06-08-2012, 02:10 PM
It hasn't been this bad in a long time- probably 6 months or more.

Just brainstorming, but could it be related to seasonal allergies? change in weather? or maybe a growth spurt? DS's behavior becomes more difficult just prior to a growth spurt, then seems to settle down afterwards.



His behavior is a nightmare. It has always been far from average, but the older he becomes, the more it stands out.

We have this too. Even when we see DS making good progress, he continues to look worse when compared to typical kids his age. Typical kids just develop at a much faster rate than DS does, so he starts behind and falls further behind. So when we just look at where he is compared to his peers, it looks like he keeps getting worse and his autism has become more obvious.

JTsMom
06-08-2012, 07:06 PM
Lori, no advice, but I wanted to say hi :hug: and let you know you've been missed around here!

Thanks Beth! :) I miss you guys too. I've been popping in here and there, but not really posting as much.


My son seems to go through cycles, too. We don't have any formal diagnoses or plans in place yet, but I already see how he progresses and then regresses. I haven't figured out what makes him regress. He starts OT next week, with a focus on behavior. I really hope it helps.


Good luck!



Just brainstorming, but could it be related to seasonal allergies? change in weather? or maybe a growth spurt? DS's behavior becomes more difficult just prior to a growth spurt, then seems to settle down afterwards.



We have this too. Even when we see DS making good progress, he continues to look worse when compared to typical kids his age. Typical kids just develop at a much faster rate than DS does, so he starts behind and falls further behind. So when we just look at where he is compared to his peers, it looks like he keeps getting worse and his autism has become more obvious.

Hmm.. all good thoughts, Gena. Maybe a growth spurt? But the fact that it's been going on for several weeks has me wondering if the current plan just isn't cutting it. When you've successfully ridden out the low points, how long would you estimate it has taken?

I really need to get him into his regular ped. She's the one who set up all of the supplements, so maybe she'll have some ideas.

pinkmomagain
06-08-2012, 10:28 PM
Lori, what is his sleep like? Does he get enough restful sleep? Also, does he eat well? I know that he has some restrictions with Feingold, but does he have a good appetite and eat until satisfied? Just brainstorming, as I am still shocked at my children's behavior and mood if tired or hungry. I remember that when dd2 was younger (3-8yo) she would often be hungry but not come out and say it or ask for food.

DrSally
06-08-2012, 10:31 PM
Hugs to you. I do think that behavior/emotions are sometimes cyclical and start for no good reason. I known that doesn't help much. I hope better days are on the horizon soon.

Gena
06-08-2012, 10:51 PM
Hmm.. all good thoughts, Gena. Maybe a growth spurt? But the fact that it's been going on for several weeks has me wondering if the current plan just isn't cutting it. When you've successfully ridden out the low points, how long would you estimate it has taken?

It varies. Sometimes weeks, sometimes months. The last setback lasted about 5 months. In that case it was due to the school's disastrous attempt to mainstream him. It took several months to get him moved back to the autism classroom. Even after the change in placement it took another two months or so to get his behavior back on track. But then he made some great progress right before the end of the school year. Environmental changes have a huge impact on DS, so I'm really anxious about how he will do at his summer program.

Finding the right balance of supplements is a challenge too. Every time I think I've got everything he needs in the right doses and timing, he will do really well for a while. And then things will start to deteriorate and his behavior falls apart again.

Unfortunately, I can't always separate out what is do to supplements and what is do to environment and what is simply due to DS's frustration with how hard it is for him to process the world around him.

JTsMom
06-08-2012, 11:53 PM
Lori, what is his sleep like? Does he get enough restful sleep? Also, does he eat well? I know that he has some restrictions with Feingold, but does he have a good appetite and eat until satisfied? Just brainstorming, as I am still shocked at my children's behavior and mood if tired or hungry. I remember that when dd2 was younger (3-8yo) she would often be hungry but not come out and say it or ask for food.

He seems to sleep pretty well. Sometimes it's hard to get him to go to sleep, but once he is asleep, he sleeps for about 11 hours or so. His eating is definitely less than ideal, which is one reason that I would like to eliminate at least the GFCF diet, if it's not helping. Feingold is easier to work around, imo. He definitely flips out when he's hungry, but this behavior is non-stop, every day, for weeks straight. He wakes up this way, and goes to sleep this way. He's much slimmer (he was about average before- more like 25th percentile now) now than he used to be, which is another reason I'd like to avoid stimulants if I can.


Hugs to you. I do think that behavior/emotions are sometimes cyclical and start for no good reason. I known that doesn't help much. I hope better days are on the horizon soon.

Thanks!


It varies. Sometimes weeks, sometimes months. The last setback lasted about 5 months. In that case it was due to the school's disastrous attempt to mainstream him. It took several months to get him moved back to the autism classroom. Even after the change in placement it took another two months or so to get his behavior back on track. But then he made some great progress right before the end of the school year. Environmental changes have a huge impact on DS, so I'm really anxious about how he will do at his summer program.

Finding the right balance of supplements is a challenge too. Every time I think I've got everything he needs in the right doses and timing, he will do really well for a while. And then things will start to deteriorate and his behavior falls apart again.

Unfortunately, I can't always separate out what is do to supplements and what is do to environment and what is simply due to DS's frustration with how hard it is for him to process the world around him.

The enviornmental stuff I could absolutely see causing a huge recovery time. The supplements are more confusing to me. I never know how long to try to wait things out.


One thing our dev. ped. had suggested as a possibility is treating the anxiety and seeing how far that would get us. A lot of times, it almost seems as though he's having a fight or flight response. He worries about a lot of random things- something he'd seen on a (preschool type) TV show, lights on his TV, etc. He'll often say things like, "You'll never take away X!", for no apparent reason.

I've talked to him about what anxiety is, so he knows a little about it, and sometimes he'll say, "I just can't make my brain stop thinking about X!"

One other reaching theory of mine is that he got a Leapster for his actual bday, which was within a day or 2 of when the behavior changed. You don't think that could cause this level of change, do you? Screen time does seem to affect him, but not like this, unless it's a crazy amount of it. I will say that with the party prep, he was getting more than usual, on top of the Leapster, plus we were doing less school on some days.

Thank goodness everything is settling down now- maybe I should just stay the course for another 2 weeks?

MamaKath
06-11-2012, 09:36 PM
Wanted to send hugs! So frustrating to deal with! We continue to deal with this trend, though it seems the older he gets, the more coping mechanisms seem to stick and we see more consistent progress. We have done lots with diet, with allergies and food sensitivities, etc. I will say if you think anxiety is a component, maybe delve further into that. We are finally dealing with ds's anxiety component through CBT and it is making a huge difference in his coping on a daily basis. This seems to be were we have seen the most improvement in recent years.

Side note, ds is on restriction which means no screen time for a bit. Huge positive change in behavior! He seems fine if he obsesses over a book, just not as much when he obsesses over a game or show. Unfortunately dh doesn't recognize this and so days when I work/he homeschools this is his standard reward and ds can't unwrap his brain from it.

Gena
07-19-2012, 11:15 AM
Lori - I was think about you guys today. How are things going?

JTsMom
07-20-2012, 06:38 PM
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-Child-Anxiety-Practical/dp/0767914929/ref=sr_1_1?ie=UTF8&qid=1342823867&sr=8-1&keywords=free+your+child+from+anxiety

egoldber
07-23-2012, 08:46 AM
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
07-23-2012, 04:22 PM
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
07-23-2012, 05:25 PM
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
07-23-2012, 06:48 PM
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. :o

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
07-23-2012, 11:24 PM
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
07-24-2012, 07:13 PM
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
07-24-2012, 07:16 PM
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
07-25-2012, 09:09 AM
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.

mctlaw
07-26-2012, 04:38 PM
Gosh, I'm so sorry you are going through this frustration Lori. I just checked in on this board as we are having a surge in anxiety with DS 1 ourselves. I am going to post it when I have time - I just started reading freeing your child from anxiety as well. If you are looking at coming to the city I will pm you a name that may or may not work for your insurance and needs.

BTW, what is 5-HTP?

JTsMom
07-27-2012, 09:15 AM
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.

I'm not sure how she'd feel about that. She tends to be pretty conservative though, so I kind of doubt it.


Gosh, I'm so sorry you are going through this frustration Lori. I just checked in on this board as we are having a surge in anxiety with DS 1 ourselves. I am going to post it when I have time - I just started reading freeing your child from anxiety as well. If you are looking at coming to the city I will pm you a name that may or may not work for your insurance and needs.

BTW, what is 5-HTP?

Thanks for the rec MC. Sorry that you guys are dealing with this as well. I remember going through a rough patch with Jason after Zach was born. He was happy, but I could see signs of anxiety popping up all over the place. Things stabilized after a few months. I'll bet it has been especially challenging with your adding physical issues. Things are probably very different than they were 6 months ago at your house. :hug:

5-HTP is an supplement our ped recommended for Jason. It's like a natural SSRI, and it's supposed to help with mild anxiety and depression. I've been opening capsules and mixing them in juice for Jason. He takes 150 mg every night. You start low and build up. It's similar to SAM-e.