My son

He is my world. I love you kiddo - and this one's for you. You deserved better, sooner.
It is more clear than ever how lucky we were to leave that place. The one who knew I was critical of not letting us know about a moderate interaction with a different combo - but made sure to never mention in response where they oddly and immediately involved their lawyer.. They never mentioned that major interaction we were so clueless on. Until we got a copy of his tests and noticed something we were alarmed to see...
The medication interaction he was on and they increased...oh boy....

It must be good fortune when a parent complains about not being informed of a moderate drug interaction, and doesn't realize there was a major interaction that was so much worse.

Then all your discharge paperwork can focus on that, all responses can justify that...but acknowledge that "other one?" The one you increased? The one our new doctor caught day one but we came and left with your cocktail? No way. Let's attack mom's character. Let's make sure the ombudsman is compromised by spreading gossip to the AG.

We realized yesterday something new..and today we realized something absolutely devastating.

The danger was so much more .

All my advice, and I missed the worst thing of all.

His new doctor caught it right away and corrected it. We didn't know how bad it was but thank God he caught it.
To him we will always be so grateful. He not only changed everything - he may have saved my son.'a life. I am not a doctor, but I know now my kiddo was in danger.. And his worsening behavior is a known effect of this major interaction they increased. They increased! I almost vomited when the pieces fell into place.

At admission, the scary place didn't catch it... And as we waited to be admitted to the partial program they didn't catch it. Oh so simple... Send us to a pro..know your stuff. Get him off it! That was our new doctor's first thing to do. And everything got better-- but I didn't truly get the whole picture.

I am not a doctor, but now feel like I have to cross check every damn thing. Darn it.



In a note added who knows when, to a document we just got a copy of elsewhere, we found the worst story of our whole story. Almost a year later, we finally got it. and further paper trails make pretty darn clear we didn't .....but someone there did, and at some point there's a note that the mother,  (keep in mind the father was in attendance and wants to know why it's always me.. As I told him... I believe once I wrote the first complaint, I became the one to blame, smear and he became irrelevant) a note that the mother should be asked about behavior when this drug came into play. In their own discharge papers they say he was admitted for worsening behavior.

The mom that has complained to 3 agencies after the weird responses from them never brought up the most damning concern. My son had begun the journey after he had been prescribed a medication and it has a major interaction with his other med. Not the 3rd combo of moderate interaction. This is major.

We assessed and then sat and waited for their php and not a word.

Our new doctors first move was to get him off it. We left the bad place and from beginning to end he was not only on it, they increased it!

Near the end of our file it says we finally discussed a taper (but ignores putting in how damn threatening it was) and by the way, layman that I am.. That drug doesn't even need a taper because of a significant half life. And when it has a major interaction that could have hurt or killed him .. Let's just sit around and see how it goes... Wow. I am not a doctor so I can't pass medical judgment, but I am a parent and we  personally judge them as crappy care run by callous and horrible people. And I
Our opinion.
The trust they blew, makes me question it all.

The scariest most threatening drug interaction of all.. The one that was known to worsen behavior, potentially cause serotonin syndrome (a potentially fatal problem) we came and left with.

We waited for space to open while on it getting no other treatment than waiting...and they had the nerve to critique me for not increasing that interaction immediately when told because I knew it was based on false info. But I did not know my baby was in danger from his meds.

Admin... You live with this? No wonder..

Even from this blog, I have been babbling about over medicating, over treatment - but I never caught on to the most threatening issue of all. I was incredibly close... Uncomfortably close ?

But  mom finally got it. And my husband and I are devastated. Today, I was in sheer panic and have contacted agencies to start the process all over again. My file on this is unreal. And apparently never ends.

But this time we did something different and told our son.

We told him that there is a very real possibility all the hard times that led us to that nightmare before the new doctor saved him may not have been in his control to stop.

The autistic boy who was focused on a balloon and fixing the cable heard us.
And through the balloon bouncing we laid out a series of options, the challenges and more..
And we told him that we believe now it was all wrong. The unfocused boy with different ways  is kit a bad kiddo, and his immediate improvement reinforced that.

We wanted to take some of the pain he may  away...

So we asked him what he wanted to do. I do not think we are capable of putting them out of business as he suggested. But he did say "there is no amount of money that can make it right."

True enough kiddo. It's why we have taken a route to inform rather than litigate in the first place.

We are going forward with appropriate complaints, but still haven't retained an attorney.

No amount can fix what happened. And we can't make a chip in them anyway. They haven't shown an ounce of anything that shows they care to us.

But they knew. At what point I do not know. But through all the stonewalling and character attacks, they knew I was missing something much worse.

Kudos I guess. It took me a while. But I got it.

My son doesn't care about money, and as I talked to my husband today... We dreaded more of taking in Goliath. But this blog, our opinion and our story can do what our goal has always been- try to get the word out, so no family would live our experiences.

We didn't realize when we started the blog it was worse than we thought - but now we do.

And now you do as well.