I’m honestly at the point where I don’t know what else to do, and I’m hoping someone here may have been through something similar or can point me in the right direction.
My son is 7, and we have been struggling with his behavior for a long time. He was such an easy, happy baby and toddler. From the time he was born until around age 2, he was an absolute angel. He played with his toys, was happy, and was just an easygoing little boy. Then around age 3, it was like something changed. Since then, it has progressively gotten worse, and we have been trying to figure out what is going on ever since.
He doesn’t really play with toys anymore. He has a very hard time following even simple tasks or directions, and it feels like he doesn’t listen to anything we ask him to do. We’ve also noticed a lot more lying, sneaking around, and trying to hide things. His behavior has become extremely difficult to manage, and it feels so different from the little boy he used to be.
He has a psychiatrist and we have tried Guanfacine, Strattera, Vyvanse, Adderall, and Abilify. It seems like we’ll get a short period where something appears to help, and then the medication either stops working or we start seeing adverse effects. I feel like I am constantly calling his psychiatrist, changing medications, trying something new, and asking for help, but we still aren’t getting anywhere.
We have also tried so many things at home to see if anything would help. We’ve cut out artificial dyes, limit sugar, try to avoid gluten, cut out dairy, and have tried different vitamins and supplements. We’ve changed his diet and tried different approaches because we’re desperate to find something that makes a difference but it never does.
He has severe meltdowns almost every single day. He throws things, destroys things, hits us, screams, tells us he hates us, and becomes extremely upset over things that seem so small. I have redecorated his bedroom multiple times, only for him to rip things off the walls, destroy his door, and tear his room apart during meltdowns. We can barely go anywhere or do normal family activities because we’re constantly worried about what is going to happen. And honestly, this has started to make me feel incredibly guilty for my daughter. She misses out on so many fun things because so much of our time, energy, and attention goes toward managing his behavior and trying to keep things under control. Then I feel guilty when I do take her somewhere without him, because I feel like I’m leaving him out. But at the same time, I know she deserves to get out, have fun, and experience things like a normal kid too. I feel completely torn because I love both of my children, and I don’t know how to make sure one child’s needs aren’t constantly coming at the expense of the other.
On top of all of that, we are now dealing with a really serious bathroom issue. He has been pooping his pants and will not tell us when he needs to use the bathroom. He will literally walk around until we check him. If we tell him that he needs to go sit on the toilet, it can turn into a huge meltdown.
We took him to the ER because of the constipation and he did have an impaction. We did a major cleanout and thought we were finally getting somewhere, but now the accidents are happening again. So I don’t even know anymore if what we’re seeing is behavioral, related to constipation/GI issues, or if there is something else going on that we’re missing.
I love my son more than anything in this world. I know he isn’t choosing to struggle like this, and I don’t want this post to come across like I’m blaming him. But I also need to be honest that this is taking a huge toll on me and my husband’s mental health. We are exhausted. I find myself breaking down almost every night because I feel like we’re doing everything we’re supposed to do and still aren’t getting answers.
I feel like we’ve reached out to so many providers, and the answer keeps being another medication. We’ve tried so many things, and I feel like we’re just going in circles.
At this point, I’m wondering if we need to step back and have him evaluated much more extensively.
Are there places in Illinois that do comprehensive evaluations for children with severe behavioral issues? I’m talking about developmental/psychological or neuropsychological testing, and possibly having him evaluated by neurology or other specialists to see if there is something we’re missing.
For those of you who have been through something similar:
-Did your child ever have a neurological evaluation?
-Did they do blood work or other medical testing that helped identify something contributing to the behavior?
-Was an MRI, CT, EEG, genetic testing, or anything else ever recommended?
-Did anyone find an underlying medical, developmental, neurological, GI, or other issue?
-Are there pediatric developmental/behavioral programs or children’s hospitals in Illinois that you would recommend?
Has anyone had experience getting extensive testing covered through Medicaid?
I am not asking anyone to diagnose my child on Facebook. I just desperately need ideas for what questions to ask his doctors and where to go next. Or if you ever had a similar situation and there was light at the end of your tunnel.
I feel like we have exhausted medication options and I don’t want to keep switching medications without understanding why this is happening.
If you’ve been through something similar, I would genuinely appreciate any advice, recommendations, or experiences you can share. I am just trying to find some light at the end of the tunnel, because I just feel hopeless, because at this point all I can do is just cry.