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

[JTsMom]

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]

36 views and not one response- I take it it's just us? lol

[wellyes]

How discouraging that must be - I'm sorry.

[elliput]

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.

[Gena]

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. It's really hard.

[MichelleRC]

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]

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]

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]

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]

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...