Neurofeedback - Rebecca's Story

[RobinN]

Can't believe it... she has strep throat

[joan]

You know thats par for the course!! oiy... Im so sorry to hear.
I hope it a mild case as shes better quickly.
joan*

[RobinN]

SCRATCH THAT.... it's Mono
The doctor at Urgent Care says she has been seeing a lot of this virus recently among her age group.

Surely explains the fatigue. However, mixed in with the reaction to the penicillin this made it rather confusing.

[Bernard]

Well, I'm glad that it was diagnosed! Hope Rebecca is feeling better soon.

[RobinN]

I do know that the Epstein Barr virus can be a rather nasty bug. It is even connected to MS in some of my reading.

We were told it could be 4-6 wks before she is feeling herself again.

[RobinN]

Wednesday

Rebecca was woken up to go to school, and she was complaining that she was too sore to move. So I slowly worked with her and got her into an epsom salts bath. She said that she was rather spacy, but I just concluded that is was due to the warm water, early morning, and the Glandular Fever (new name for mono).

I let her move slowly, as I wasn't even sure if I should perhaps let her stay home from school today. We got her there by 2nd period, and I headed out to get some work done. I barely started painting when I got a call from school that she had had a seizure, around 9:45. Fairly common time for her. I was about 20 min away, and then got a call that they had called the EMTs, so I put it in high gear. Then another call that she was being transported to the hospital. I think everyone is on pins and needles after the Travolta death. There are two hospitals that we can be taken to, and this was not what I have specified on her chart at school.

I am informed that her blood sugar was down around 30 something when the EMTs arrived. I filled out the paperwork. The ER doctor wanted her to have something to eat. He asked if she had any food issues. I told him she doesn't eat wheat or dairy. He rolled his eyes and said, well there isn't much else is there. Two hours go by and still no food. For two hours they have not looked for her chart, because when they do they can't find it. For two hours the ER doctor does not even make an attempt to contact her neurologist. When the food it brought to her, it is cold. It is wheat pasta, and cheese on the meat sauce. It is a 15% cranberry drink with HFCS- High Fructose Corn Syrup. I could go on....Thank goodness she is not extremely sensitive to the food, but what if she had been. This is a hospital.

I kept my cool, and said I really think she will be more comfortable in her own bed.

Just a bit... we need a fluid sample...
We were let go, and still her neurologist had not been called.

So...
Tomorrow we have an appt with the Primary Care Physician to get a referral for a glucose tolerance test.
Hmmmmm..... I requested this last spring and she told me that it wouldn't tell me anything. Gotcha!
I really do not understand conventional medicine these days.

[Bernard]

Get better soon Rebecca!

If she didn't have an unusual work out the day before, extreme soreness in the morning could be a strong sign that she had a tonic clonic during the night.

[RobinN]

She has mononucleosis Bernard. It has caused extreme fatigue and soreness for two weeks so far. I am told it could be up to 6 weeks.
I am now wondering if the extreme low blood sugar might have contributed to it as well.

[Bernard]

Right! Sorry, it's hard for me to remember everything that is happening to everyone. Besides, I'm getting old..

[joan]

Mono is very hard on the body and they say you just cant get out of bed. I give her credit for trying to get to school. Im sorry for her problem today and I understand your frustration. Im almost at the point where I travel with a "teenage" bag. Like my old baby bag days. Just filled with misc snacks, water, a book, pen. List of meds and Drs. Just some heck of a week this week.. Hang in there and I hope tomorrow better.

joan*

[RobinN]

Bernard, I thought you had a file on each of us to know who, what, where, when, why, and how. Come on, fess up, you have Stacy help you memorize it all each night.

That sounds like a good idea Joan. I should have one, just because this is earthquake country. It is suggested. So I might have to add that to my To Do, list

[Bernard]

Bernard, I thought you had a file on each of us to know who, what, where, when, why, and how.

I don't *always* take the time to use the search function.

[Molly97]

Robin,
Just catching up on Rebecca. I hope she recovers quickly. Six weeks to a teenager is forever, and to the teenager's mom, it's longer than an eternity.

[RobinN]

Thanks all,
She bounced back today with a smile on her face.
I do have to pull her out in a bit, to go see her pediatrician. Nice doctor, but she doesn't have much knowledge in gut / brain disorders.

I will keep you posted.

[RobinN]

Love may forgive all infirmities and love still in spite of them: but Love cannot cease to will their removal.
C.S. Lewis

[Ruth]

Hi RobinN

You say you live in Woodland Hills, CA. I have 2 sons that were asked to come for free to UCSF for free. They were studieng twins. They let me sleep there for free. Since you live in CA, maybe you could check out UCLA and Standford. They might be doing neurofeedback for free.

I am glad Rebecca is making good progress. I need it since my seizures are increasing. I cannot afford it. I have a good insurance plan but there is no way that they would approve it.

Where in CA are you going? I live in the central valley. I think you are in the LA area.

[Ruth]

Hi RobinN

I read your blog and found it very important. My comment was sent to google. I have an account there. I have 3 e-mail accounts. That way I will always get my letters. I hate the word e-mail. I hope more people read your blog and leave comments.

[RobinN]

I don't live in Woodland Hills but that is where the EEG Institute is, where Rebecca is treated for neurofeedback. I live near Pasadena.

We have gone to UCLA, but I was not pleased with their care there. Now she is treated at USC Neurology, and they are supportive of Neurofeedback. It is certainly worth asking if it might be covered by your insurance. Especially since your seizures are increasing.

Here is what EEG Info recommends:

Questions To Ask Your Insurance Company About Neurofeedback Coverage

Do you cover biofeedback?
If yes, is it under Medical or Psychological Services?

Will you cover biofeedback for (your symptom)?

What rate do you pay? (e.g. 80% of usual and customary vs.80% of billed amount)

If it is covered under Medical Services, do I need a prescription or letter from my MD to say it is medically necessary?
Do I need to send the letter before I see the biofeedback therapist or can it go in with the first bill?

How many sessions of biofeedback will you cover?
Per year?
Before I see the doctor again?

Is there a limit of total amount paid out? (e.g., pay for biofeedback only to $1500 in one year or 6 months)

Do you pay an out-of-network provider?
If so, do I need to see my primary care physician to make a referral to a biofeedback provider?

What is the licensing requirement of the provider?

Would it be helpful to have the biofeedback code?
If so, it is 90901 (biofeedback).

[Ruth]

Hi Robin

Thank you for the info. Thank you very much. I will check into it, since I am having more seizures.

[RobinN]

I just got an update on Rebecca's blood glucose tolerance test.

They lost the results, and then we were told that the lab was having some problems with the computer software involved.

Today the doctor called and said that her levels went down to 50 on the last draw. (they take 7)
It is suppose to be between 80-115.
After her last seizure the EMT test was at 30+
So definitely this is an issue with her. Now what the next step is will be discussed with the neurologist.