Slow death...is how I feel. - CHADD's ADHD Pare...

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Slow death...is how I feel.

Sk8te profile image
Sk8te

My 6.5 yr old was diagnosed w severe ADHD at 5. Behavior pediatrician in a well educated area Silicon Valley. Treated him for maybe 7/8 months. Gave him 13/14 different meds/meds combo. NOTHING WORKED. Sent him to a psychiatrist to further treat. She also diagnosed w ADHD along w anxiety. Started more meds. Compounded meds. Micro doses meds. NOTHING WORKED. Now she diagnosed depression. More meds. Nothing is working. For the last 2 years my family has turned upside down. My kid is a mess and I’ve nearly lost all hope. We see highly educated therapists w no real results for him. I just spent 6K on a neuro psych eval for some kind of an answer. The results came today. My son DOES NOT have ADHD or any sign of depression. He’s been diagnosed w social anxiety. So two years of living hell on 20 plus meds for something he doesnt have. I am numb and don’t know who to believe or proceed. Who is more qualified to diagnose here??? 😭

8 Replies

Of course nothing I say can make your son's situation better.

What I will say is " if it works..

It will be working" so the fact that the family of medications he took didn't work, it may feel better that he doesn't have ADHD.

I wonder when other families say medication doesn't work if they might have the wrong diagnosises.

So sorry for all you have been through. Now with the correct diagnosis you can get the right help..

Thanks for being here to share your expiration, we all learn from each other.

Best to you and your son.

Hi there I can feel your pain, upset and hopeless because I was feeling hopeless and upsetting when I moved to a new place I couldn’t get help for my daughter. Everywhere we tried they put us in waiting list.

I saw you said about diagnosed and medication. Did he get help from therapist such ABA, OT ? When did they diagnosed him at 5 years old, did they put him in IEP program so that he can get special education and extra help in his classroom.

I am glad that he doesn’t have ADHD. I think he may need a therapist such as ABA to help him keep up and get social contact in daily basics.

Medication just help them to calm, sometimes they look like a zombie with medication, but keep up with them, teach and guidance them with every basic skills that may help. This is how it works with my daughter.

Then they grow up, their hormones will change and their behaviors change too, so they may turn out be good behavior. I saw many positive post in here when the kid are growing up and they change completely.

I believe in God, and praying for every kids Good luck with this journey.

Hello Sk8te, so sorry your family is going through this stressful time. Sometimes the more different people look at a patient the more diagnoses you get! Think Officer Krupke...I’m in the UK and things would be done differently here as our health service is not at all the same.

My thoughts are- have you looked into sensitivity to food? Is it a possibility that your son is on the Autistic spectrum? The anxiety could be explained by that.

I imagine you are all pretty anxious now.

If several professionals have flagged up anxiety I would focus on this and work hard to help with his anxiety.

Even without a clear diagnosis you can try some strategies and if they work that’s all for the good.

I would look online at various communities and try some things that other people have found helpful.

Definitely make sure his diet is excellent and cut out anything that could cause or aggravate his condition whatever it may be.

You have said he’s “a mess” but not given any specific symptoms- would be helpful if you could untangle all of the confusion and pull out the specific things which he can’t manage. You will find that there are some positives in there too- sometimes we have to look hard for them but they are there.

I have two boys with adhd the eldest is now an adult and I agree that things change as they grow ( for the better) even if we do nothing to intervene.

Feel free to pm me

Keep going - and make sure you take time for yourself when you can to recharge your own batteries.

Xx

I am very sorry you are experiencing this. I would think the Neuropsych is likely the best person to diagnose. What specific symptoms does your child exhibit that lead to the initial ADHD diagnosis? What symptoms do you see today?

I am sorry you’re going through this. I remember the years before getting a diagnosis were the hardest as the diagnosis often drives treatment. It also makes it harder to find your parent support group because those are often diagnosis based! I can tell you that it does get better—truly. As kids age they reach new developmental milestones—or not. As the milestones gradually start to add up, a diagnosis becomes easier.

We didn’t get diagnosed until kindergarten. And it was a battle getting there with many, many prior “experts” saying our son was typical. While we were trying to find the diagnosis we decided—heck with this—let’s just take him to the treatment providers and gave him evaluated there for any need he might have or not—speech, OT, behavior. He ended up getting the therapy before we got the diagnosis because the need was there.

Last note. In public schools, if there are behavioral issues, a functional behavioral assessment is supposed to occur. It looks at causes of behavior and what is reinforcing them or stopping them. It is an ABA based principle. Coming from an education background, I sought out an eval from someone with a reputation for being very positive and middle of the line in their approach, with background in ABA to help us with issues we were having.

With a lot of practice on our part, it really changed things for us. We never “did” ABA for ASD (despite later getting that diagnosis). We, as parents, got excellent, ongoing advice and training in ABA based principles (think positive parenting). What I’m trying to say is that ABA has gotten a reputation as being only for kids on the spectrum and only for kids who need 20 hours a week of in home training. While it may come in that format for some, the more general positive parenting ideas it teaches can help others without the diagnosis and the hours.

Last, last note. Another reason to go straight to therapy providers is the parents you will meet in the waiting room lol. You need to find your team. Your kid is pulling you into a new world where you will be dealing with teachers, therapists, insurance, play date behavior issues, etc. regardless of diagnosis. This isn’t the world you signed up for, but it can be a very beautiful world too. And there are many other parents in that world, most like you and feeling like you. You need your tribe. Until you start meeting others in person, keep coming here and also check out Tilt Parenting at tiltparenting.com/recommend....

Hello, I agree with the other advice. My 6 yr old daughter was diagnosed with ADHD at 5 and we tried every med available but nothing worked. She switched daycares like part time job and only stayed at most schools for about 6 months. I discussed in detail her behaviors with our pediatrician and she recommended that she get tested for autism. We got the results and my daughter is high functioning, she can speak, read, write, and is independent but struggles with social interaction and compliance. We have started ABA therapy and it has truly changed our lives and I am already seeing significant improvement in my daughter.

I suggest talking to your doctor about an autism assessment.

Glad you got a diagnosis in the end- it’s such bad a stressful process. But once you have it you can target the things which work. Glad your daughter is doing well now x

Hi, Seems like you are where I was 4 years ago. My daughter was the same years after meds and therapy things got worse. She is 11 and now diagnosed with mood disorder. Even with an IEP it’s extremely difficult.

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