Just how bad was it?

We know now there was a medication interaction concern.
We know with a new doc who dropped rather than increased it our child experienced the improvement we had been hoping for...Prairie Care did not.

We knew prior from the ombudsman there were documentation concerns not directly related to his care.

Concerns is an understatement.

This is what the ombudsman sent to them:

6)

After reviewing $&&$&$ chart, "several documentation concerns presented themselves.  In particular, incomplete forms, conflicting information in single event charting, duplication of charting notes for different days, and documentation indicating the use of restraint with no documentation available at all. "

She went on to call them 

"Serious concerns" that she would be following up

With that place about. 

Why we are just finding out it was serious now, I don't know. 

Restraints? What happened to my kiddo? 

When this blog was started, I felt they were pretty bad. 

Almost a year later, they were worse than I thought. 

Living it

As we have lived it, I have nothing but regrets for following a doctor's recommendation and bringing my kiddo to Prairie Care.

My regrets have only grown the more I deal with them. Painfully so.

But hopefully others will be helped by our experience. I have the opinion of them that  money in the pocket, is a bigger concern than due diligence. Bigger than care.

It's my opinion, but it is why we have dealt with them not only on care, but billing.

When you don't take responsibility, you never learn.

Are we the first parents to believe companies put money first?

Whether it's our gas tank, or our children, I believe the greed is the driver of some of these folk's intentions.

But with our children, we can never fix those precious moments in time.

As a parent of a high functioning autistic son, who was desperate for help..I know now Prairie Care was not for him. As I have gone to agencies and dealt with the blowback, insults, and sadly learned just how bad it really was..I wish so much we could rewind time. This despite being stronger as each agency did what they could.

Instead, we move forward.

  
And maybe another kiddo will be spared our experience.

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.

On hold

This has been removed from our title and replaced with we do not endorse them. 

we believe all parents are entitled to their own opinion and research and expect that some may find them a good fit. One size does not fit all.

Today, I have learned things about our case that have made me sad, scared and want to hold my son.

This blog is on hold as we deal with them.

We hope you take great diligence and your child is well. 

Good grief

Got some info, related  to care (we have had two separate but intertwined issues, billing and care) that was a real forehead slapper.

Sometimes, they make it too easy for me. Previously, you may recall I mentioned prairie care claimed things to the AG that their own voices directly refuted. It was my pleasure to send the AG a copy of their voicemails.

I am almost sure there's some mental health rationale when folks do things so blatant, it's almost like they are trying to get caught.

Although, I believe I do now understand the number one reason they apparently fear me so much.

From my first bringing their attention to a few issues, they immediately had their lawyer involved (as I could see when the attorney was included in a response to me.)

I always wondered why, what specific nerve did I hit ? I raised a few issues  from our painful stay.
Why were they so worried?? I have yet to retain an attorney.. Why so scared of a parent raising issues  for their attention that it became so escalated and they got so... Well, weird..

I think I now know..

I'll update the blog, but first, for the future families... I am going through proper channels. It's a thing I have....I can't turn my back if I feel others would suffer by my stepping back. I have always felt society's worst offenders are the ones who sit silently by - I am not the silent type.
Maybe it's an OCD ?  Although , I suspect I get a different nickname in a certain office.

------

On the  overcharge...

We feel we have proved our case to the public,  and gave them several opportunities to not behave like childish brats.

If they need such pittance so badly to make themselves feel better, so be it. That's a whole other mental health problem that prairie care should look at themselves  in the mirror before treating others. Petty hoarding.  We won that battle, even if they kept the money.  Our goal was to make sure parents would not face what we did - and we have won on the billing issue by showing their antics to the public.



They can act like children - my fear is the way they treat them .


I challenge them to donate the disputed, and I feel clearly shown to be overcharged funds, to a

non-profit supporting Autism that is  unrelated , and not working with their organization.

In other words, it should go to a group that helps children.