HOUR 11 – E.R Odyssey Contiunes PART 3

Outside is a beautiful day …
Blue skies with puffy white clouds. The kind of clouds that make you want to sit back in a field and stare at the sky. While trying to name the shapes of the varous clouds. A bit of a breeze blowing to take the edge off the heat. Today would be the perfect beach day … enjoy the waves with your childern, family and friends. A great day to be on the boardwalk playing games, riding rides or eating ice cream. A glorious day to go claming in the bay – then enjoy the days catch with a surf and turf bbq with loved ones.

But none of that is for Keri and I. I will get a 5 min glimance of the outside when I can get a chance to have a cigarette. Keri is stuck in room 34 in the E.R. We have gone over the 24 hours of being here. We will now be working on 48 hours!

Currently, she is resting peacefully from a drug induced sleep. Keri had another meltdown. John was barely unable to hold her down. I had to call the nurse in. The Doctor gave her a shot of Ativan to calm her. These hospital’s psychiatrist doctor prescribed over the phone an increase of her current meds. Keri will now receive 3 times a day .1 mg of clonidine, 2 times a day 200 mg of tegretol. The abilify will remain the same of 10mg 2 times a day.

Before this meltdown, I finally was able to speak with her primary psychiatrist Dr. L and the CMO Case Manager. Dr. L told me that because Keri’s meds have been changed so much that she needs to go into a psych unit in order to have any additional med changes monitored. That also it is too dangerous to just discharge her after the hospital doctor sees Keri. Dr. L also stated that this emergency room has an obligation to keep her until a bed has been found at a psych unit. Her CMO Case Manager said the same thing.

A different Mental Health Administrator came in to speak with me. She was very nice and explained the situation to me. Currently, Keri is scheduled to see the hospital psychiatrist Dr. Z. He is contacted with the hospital on an on call situation. Dr. Z will not be able to see Keri until 8 or 9 pm tonight. From there he will pressure what whatever place to find a bed for her. Ms.A (the mental health administrator) is in the process of calling places in this state and other states to find a bed. Yes, a bed out of state since no other hospital wants to take her or has an open bed.

You read that correct – a bed out of state in an out of state psych unit because there are hospitals in this state that are REFUSING to take her!!! From what Ms.A explained, a psych unit can deny acceptence for any reason like:

•Low IQ
•Non-verbal or limited communication skills
•Wears a diaper
•Certian diagnosises – like Autism, Bipolar, etc.
•The unit thinks the patient will not benefit from therapies offered at the facility.
•There is an over flow of a certian diagnosis ie: to many people with autism.
•Age despite a hospital’s website says the work with kids 5 and up.
•Insurance
•Or pretty much any damn reason the deem fit at any given moment.

So pretty much Keri and I are screwed at this moment. We will camp here at the hospital until a bed opens up.

But wouldn’t this be a form of medical discrimination? If a psych unit has an open bed and a patient is in need of it…
As long as the patient fits the basic criteria of the program – a child in a program for mental illness that is designed for childern regardless of the above. The same would go for an adult. Or maybe this state needs to open more inpatient facilities for people who autism or bipolor or whatever. It is not fair to have them sit in the emergency room for days at a time while in crisis until the parent who is too fusturated, stressed and tired and says to hell with it. Then have to take an unstable person home with no other resources to help them.

I will not be that person. I will not allow my daughter to slip through the cracks because no one want to help a child with autism/bipolar. I will not allow her to continue to hurt herself or me or other people. I will not allow either of us to become a tragic news story. I WILL CONTINUE TO ADVOCATE FOR HER AND GET HER HELP.

HOUR 11 – Emergency Room Visit Part 2

I left off that paper work had been filled out by me for Hospital M. I was waiting on transporting information.

Come to find out that Hospital M had additional questions about Keri.  Once the answers had been recieved by the Doctor at this hospital – they refused to admit her.

The mental health administrator at the ER said that said Hospital M felt that Keri was not a good fit. Also that Hospital T (a different hospital which Keri had stayed at with her first hospitalization) had no beds available. Hospital K and other programs refused to take her. Why? I will get to that in a moment. 

This administratior wants her to see their child psychiatrist, fo a med change and send her home. WTF!!!?!? SEND KERI HOME???

Not at this moment in time when she is a danger to herself and to others. I will camp out here all week until something can be found for her if I have too.

So some of the programs refused her based on age and medical conditions (autism, adhd, bipolar, and mild intellectual disability). So who do I hold accountable if when discharged Keri goes completely of the deep end and tries to kill herself, majorly hurts herself, or someone else… since I cannot get help for her? And with this you may wonder why some parents go off the deep end along with their kids and make the news – this might be the reason why!!!

But let me contiune from the point of refusal from last night … John and Maggie were here with me last night. Since, Keri and I had no other option, we stayed the night at the hospital. John and Maggie left since Keri was asleep and there was nothing to be done at that time.

I tried to fall asleep with 2 chairs pushed together and sitting up using a pillow against the wall for my head. I could not get comfortable not fall alseep. I also had a serious case of numb butt. A kind nurse brought a gurney in for me to sleep on. Not super comfy, but better then the chairs. I was able to get 4 hours of sleep.

I woke up at 7am. Keri was awake and ok for 5 mins. She then started to act up and climb the bed and get out of the bed. She started to smack on the computer in the room. I had to call the nurse’s station for help. Keri kept breaking away from my grip. In came 3 security guards to hold her down for at least 10 – 20 mins. Keri then got the “mega meds” to calm her –  a shot right to her arm.

It basically made her like a little drunk person. Keri had her morning meds minus the abilify. She slept for a little and woke up about 10:30am. She finally got her pill at 11 am about 4 hours after getting her first meds

Between 8 am and 10 am, I was on the phone calling her primary psychiatrist, her case manager for CMO. I was leaving messaves and trying to get
human or a supervisor that could help.

I will continue this in a new post … part 3. We have now been here for over 24 hours. And many more hours to go. Many days more perhaps…

Fustration with finding GeneSight Testing

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GeneSight Testing Info

Songs of praise are being sung about Genesight Psychotropic (More info on GeneSight Psychotropic testing) by Keri’s in home behavioral therapist and the family support work. This test is a DNA test- swap the inside of the cheek and send the test back.This test helps to figure out what is the best medicine to use, use with caution, or not to Use at all for antidepressants or antipsychotics.

The family support work had the test done on his son. He said it was the best thing he could have done. His son has ASD, and it has helped this child out. He even gave me the name of a doctor who does the testing … since I have been having trouble locating a doctor who does this test.

Keri is on Depakote (500 mg in the am, 250 in the afternoon, and 500 mg in the pm) and Abilify (10mg in the am and 10mg in the pm). Recently, the bloodwork done, showed the Depakote levels being too high in her system. The doctor lowered the afternoon dose from 500 mg to 250mg – in hopes that the levels will decrease. If the Depakote levels are still too high, then the doctor wants to play guessing games with new medications.

Playing guessing games with medications upsets me. Keri in the past 3 years has been on so many different Meds. Rather then playing guessing games … is it not much more logical to do this test and see what may be a better match to her DNA? (At least I think it is )

However, Keri’s psychiatrist does not provide this test nor does her pratice. The doctor who does do this testing does not accept my insurance. He is VERY expensive!!! My daughter’s insurance company (Horizon NJ BCBS- Medicare) has told me that if the doctor’s office calls and requests a “nonparticipation provider authorization form” to explain why they are the only who can treat my daughter, then it will be covered 100%.

Sound easy right? Hell NO!!! The doctor’s office refuses to call the insurance company and ask for this form. I called the insurance company back and explained what was going on. I asked if I paid out of pocket if I sent bill into the insurance company , if I could be reimbursed. I was told by a very mean woman “no, you will not be reimbursed because you went out of network and Knew it!”

WTF!?! If this is a neurodevelopmental doctor AND he is the the Only doctor that provides this test, then what other choice do I have?

Trust me, I called the company who makes this test and they provided me with the numbers of people who might provide this test. I am running into the same issue as the other doctor. I have called doctors on my own and they do not offer this test.

Between getting set up ABA and this -everything is a struggle when you are just trying your best as a parent to help your child!