If At First You Don't Succeed...

Try, try again...

I'm not wanting to write the actual name of the drug, but you guys probably know what drug I'm talking about when I say "K." Anna tried IV "K" infusions in 2007 (outpatient) which really helped her head pain for a short period of time. Then she underwent some neurosurgeries, without any benefit. So I started thinking about "K" again for her.

Just to explain...outpatient is done in a clinic setting. Inpatient is done in a hospital.

Last May I took her to Dallas where she tried outpatient IV "K" infusions again. Bingo...they virtually erased her head pain until she flew home. Her intracranial pressure issues and airplane rides do not mix.

Back to the drawing board. What to do? Get more "K" infusions.

ALL her current doctors say "K" infusions are the way to go for her. But I cannot pay out-of-pocket for this (like I did in Dallas). Thus needing her insurances to pay for it...

And thus begins the big battle with her private insurance. They paid for the outpatient infusions in 2007. I paid cash for the outpatient infusions last year (because that doctor does not work with insurance).

Our insurance denied a prior authorization from Anna's local doctor for inpatient "K" infusions in our state. We appealed. Insurance denied again. We are still appealing, and it is at the state level now. We should know something in a couple of weeks on that appeal.

But meanwhile, I took Anna to a very well known HA clinic in another state which does inpatient "K" infusions. First they wanted her to try inpatient IV Lidocaine infusions. To my great surprise, the prior authorization on that went through right away. Anna tried it, and she had big problems with it (very bad nausea, vomiting, and dizziness). Did not help at all.

Came home and went back to this same clinic last Monday (a week ago). Prior authorization was sent to insurance to cover inpatient IV "K." On Friday our insurance denied it. We came home.

On Monday, head neuro (our neuro) at the HA clinic called our insurance for a peer to peer review (doctor to doctor phone call). He got it reversed. Yeah for him and his big influence! Our insurance will now cover inpatient IV infusions (in the state where the HA clinic is located). It is a YES!

We won at the insurance company level. We will soon hear at the state level regarding our appeal for infusions at home.

Medicaid approved inpatient infusions at home last week.

We are flying back to get inpatient IV "K" beginning next Monday. Then hopefully, Anna can get booster infusions at home, when that time comes.

Hope this makes sense. I just don't want to identify the drug or the name of the HA clinic.

We will come home via Amtrak.

Cheryl

So excited for Anna to finally be getting this much-needed treatment, Cheryl!

We won at the insurance company level. We will soon hear at the state level regarding our appeal for infusions at home.

YAY YAY YAY
Finally, whew, big relief for Anna and you!!

I am pretty sure a huge portion of this unrelenting fight and won, is thanks to you Cheryl - hats off to you!
But, also, big kudos to the doctor who make it possible, too!

yay yay yay a happy news :]

Risa

Cheryl, you amaze me. It is awesome what an angry Mom can get done. I am so happy for you both to finally get this treatment. You should write a book when Anna is feeling better!
Hugs,
Cindy

What a great idea! Cheryl would have a wealth of information, experience and contacts to help others. But first, we need Anna to feel better.

A little nugget to keep in the back of your mind for future, Cheryl.

Thanks, my friends. But I do have to say I don't ever get angry in a way that shows. Maybe I am angry inside, and that increases my determination. But I haven't yelled at anyone yet, LOL.,

Doctors usually like Anna. She comes across as believable and as someone who is suffering. She gets their sympathy. She is always polite and grateful. Some doctors have hated the opioids she used to be on, but they usually didn't take that out on her. So her personality helps, when we have to keep going to new doctors and keep telling this story over and over again.

I am stressing out today because when I called yesterday about her appeal, it could not be found. People are searching for it. There are deadlines for doing appeals. I have proof from USPS it was signed for in that building at the end of January. But I'm not sure if it got to the right office, although someone in that office told me last Thursday they had it in their hands. Yesterday, they could not find it at all.

Cheryl

Whew, the state office just called, and they found the appeal. It is being worked on. Our insurance company has a week or so to respond to it. The person working on it (who called) said he is going to try hard to win it for us.

I will be delighted if it ends up in our favor. I have worked so hard on all of this!

Cheryl

Cheryl, even as I was typing it, I knew angry wasnt the right word for you. But, my head has been bad for a week or so and I was too tired to correct it. Keep at it, hopefully you can rest soon. If only we all had a Cheryl in our corner....
Hugs,
Cindy

No problem, Cindy! Thanks for all the kind words!!! What helps is that I am not sick myself. I know several Chiari moms who have Chiari themselves and are sick. I don't know how they do it--fight for their kids! I have no excuse when I have such good health. I can't imagine myself being sick and going through all this with Anna.

Cheryl

I know - you are "A Most Determined Woman", Cheryl :]

I once read a book titled so, it was about this lady who was so fierce she overcome the most difficult obstacles
and become the head of shipping company in times when and where women hardly mattered.
http://www.amazon.com/Most-Determined-Woman-Emma-Blair/dp/075154762X


This is epitome of you, Cheryl. Polite and determined. A mighty, powerful force!


Risa

Cheryl,

So glad your persistence is paying off for Anna. She surely deserves the relief.

Cheryl, I know the scoop about Anna from the Caring Bridge,
but I though maybe the rest of The Fab would love an update, if it's okay to ask for?

Risa

So good to hear!

When we were in Philly last time, I was unable to post here on my iPad. But this morning when I tried, everything worked right. So here I am.

Anna was hospitalized on Monday evening, and the K infusion was started. On Tuesday she was happy and absolutely giddy. Her burning spine pain was gone, and her head pain was often at zero. Though it would come back in a flash and then disappear again. She could think, talk, and walk. She did need help getting around.

Some pretty bad nausea set in. There is a shortage of IV Zofran in the US, so the doctors decided to use IV Droperidol. That worked very well for her, and I was surprised and happy about that.

The K dose kept getting raised. Went from 10 mg per hour to 80 mg per hour. At 80, she got very quiet and her thinking was cloudy. I knew she was drifting off, but she was getting good pain relief.

But one thing that was not good was that she would not eat a thing nor was she able to sleep. I kept telling the nurses and doctors about this.

Friday morning the docs said they would be turning off the infusion at noon and she would be discharged later that day. Soon after, Anna had a grand mal seizure. I have seen hundreds of seizures working with the disabled. The nurses came running, and they said she was coding. A zillion medical people came running in the room and lining the halls. They decided she hadn't coded. They did some tests at her bedside and everything was normal.

They did not think it was the K nor the Droperidol. I was so worried they would blame it on the K and that Anna would never be able to get it again. But they felt it was not the K. They were going to move her to ICU, but there was no bed. So she stayed in her room.

I believe Anna's body retaliated because she wasn't sleeping nor eating. K and D are very sedating. Anna had the opposite reaction. Total insomnia. And she refused food at every meal. I could have purchased anything for her to eat outside the hospital, but her appetite was dead.

She was discharged late yesterday. I could not get her to eat last night, but she did fall asleep. She was somewhat like a zombie after the seizure. And still last night. She is sleeping now. Hopefully she will more like herself whe she wakes up. She did have quite the HA after the seizure

I believe she had a near death experience. The only lucid things she was telling me after the seizure was that she went to heaven and saw Jesus who was such a bright light. He asked her if she wanted to stay or go back to earth. She said she wanted to go back to me so I would not be alone. She said Jesus told her she was so loved and that I was loved also. And she kept mentioning that love all afternoon and evening.

Cheryl

all I can say is...WOW! I'm so glad she is "ok" now, though I'm sure in rough migraine shape. I hope she is doing ok. (((((hugs)))))

Cheryl,

What an amazing experience. You have indeed been blessed with a wonderful daughter. I hope and pray that she finds lasting relief from her challenges. So glad that the treatment helped her. I hope she able to do it again if that is the best route for her.

MG

Cheryl, this must have been really scary moment for you, Anna,
and your entire family, and I really feel for you.
I am very glad that a sweet, deep spiritual, reassuring experience nonetheless,
Anna is still with us and the worst have passed. I wish Anna continue on her road to her recovery,
as best as it can be.

I am concerned though, if despite what the doctors say, if it wasn't the drug combo that have overwhelmed Anna after all.
We must remember how fragile her body is, how little she can eat therefore how little nourishing she receives,
how little sleep, and everything which make her quite defenseless.
I really think the more they were increasing the dosage the more disoriented and sick Anna became,
it's clear to me from what you are describing.

I am not saying the drs are trying to deny any wrong doing or anything just that maybe they don't pay enough attention
to little details, which in Anna's case are of utmost importance.

If I wrote one word out of place I deeply apologize but everything I wrote comes from my love to you guys
and my greatest concern
for Anna's well being, and yours, too, Cheryl.

hugs

Risa

I'm pretty forgiving when things go wrong. It is a delicate balance though, and when you have various residents involved, things can get dicey. It is what you get, when you go to a teaching hospital.

Yes, mega powerful meds that were being infused, and I don't think they really "heard me" when I told them Anna was not sleeping.

We once had a neurosurgeon who did four surgeries on Anna in four months. He owned his practice, and he was the only neurosurgeon in the practice. He did have PA's, but mostly we dealt with him. It was good in that he always knew what was going on, and he was responsible for the whole thing. No residents!

Good points, Risa.

Anna is somewhat better, but she has a ways to go to become like the Anna she used to be. If that will even happen at all. Her pain is pretty bad, but K nasal spray helped some tonight. First time she has tried that.

Thanks to all.

Cheryl

Thank you for an update Cheryl.
I pray that Anna will recover to her old sweet self, no matter how long it takes. There is no rush.

hugs to you both

Risa

Cheryl, I am still praying for Anna to recover fully from the trauma she sustained. Whatever it was. I hope the news was encouraging from your Dr. at home.
Hugs,
Cindy

Ditto to everything Cindy have said.


Risa

I'm glad Anna is okay. And as a mom, I am feeling some empathetic post terror for you. I'm so very glad everything turned out alright and hope that Anna stays painfree.

KimbaK