Insurance...Martha

April 6, 2011

We had two insurances when I was working and what Carol wrote was true for me.

Once we filled both deductibles, very rarely did I see a bill for medical

services. Last year, because of surgery that my husband and myself had, we met

our max out of pocket and all bills were paid at 100%.

Kathy

Re: Intro to Group...Martha

PS If you have good insurance, are you sure that the $500 for the MRI

isn't just because you haven't met this year's deductible? It may be you have

for instance a $1000 deductible and all else will be covered after that.

Perhaps call your insurance or check on exactly what you have so you can

keep an eye on things and be sure not all of the MDs etc are billing you for

the deductible..it only has to be met once! randee

In a message dated 4/6/2011 7:22:15 A.M. Central Daylight Time,

Randeejae@... writes:

Hello and welcome, Martha. My dtr is now 20 and wasn't diagnosed until

age 14 and that was three different pediatricians! She had a very

noticeable

funny butt crack. Back then it was believed that if she were toilet

trained, one was home free. It shows us how rare this is and pediatritians

let

alone many nsg's are not up on the latest research. And it is changing

sooooo

quickly. It is a long and winding road but take it a step at a time,

breathe deeply...I think you said you are going to be at Duke with Dr.

Fuchs?

If we ever needed to see someone again, I would certainly consider him as

he has received rave reviews here. Remember please that for the most part,

only folks who have had trouble are on this group after the first surgery.

The majority of folks go on and recover and it all becomes a distant

memory so praying that is the case for you. Hugs from a Mom to a Mom,

Randee

In a message dated 4/5/2011 9:34:37 P.M. Central Daylight Time,

_corinnglover02@..._ (mailto:corinnglover02@...) writes:

Hi Martha

My name is Corinn and I have a now five and a half year old who wasn't

diagnosed until she was 2!! I live in Boston which is supposed to be the

Mecca

of all hospitals and yet although my daughter showed symptoms and had a

dimple no one even checked until she was 2.My daughter whose name is Amani

has undergone three untethering surgeries. Because of this delay she has

suffered some extensive permanent damage and I now take her to the world

famous

Dr. Ben Carson at s Hopkins hospital in land. I have become very

knowledgeable about this condition as it has over taken my daughter and my

life. I am very glad that you found a doctor who recognized this and your

daughter is receiving help!! Even if it was a by chance situation. your

daughter will be in pain after and will have to lay completely flat for

24-48

hours after but the pain medication will help with that and trust me she

won't

be addicted( the pain Meds are narcotics) she will then slowly sit up over

the coarse of a day or two increasing her level ten degrees every hour.

After that she will have to stand to put pressure on her feet and make

sure

all neurological function is in tact. Where Kennedy probably doesn't walk

yet they will probably take other measures rather than walking to make

sure

her movement is in tact. I know how frightening this can be and how

unsettled you feel but trust me kids are resilient and your baby girl will

recover

faster than you'll believe. Although she has to stay out of daycare for a

few weeks she won't be laid up it's just as a precaution for the incision.

I

hope this helped some and honestly if you have any questions what so ever

PLEASE feel free to ask me no matter what. I am more than willing to

answer

or help in anyway. I'm a single mom and I k ow how hard and frustrating as

well as scary all of this is. I'll be praying for you all and wish little

Kennedy a speedy recovery!!

On Apr 5, 2011, at 3:44 PM, " hollandmeh " <__hollandmeh@..._

(mailto:_hollandmeh@...) _

(mailto:_hollandmeh@..._ (mailto:hollandmeh@...) ) > wrote:

> Hi! My name is Martha and my 10 mos old daughter will be going in for

surgery for a tethered spinal cord at Duke on 4/18. We are very nervous

but

very hopeful too! I just wanted to tell you a little about her condition

and

our story and if anyone wants to chime in with info, advice, anything...

we would greatly appreciate it. It is nice to have support like this when

no

one I KNOW truly understands the situation at hand.

>

> Kennedy was born with a large, bright strawberry on her low spine. She

was in the special care unit when she was born because of a high

temperature

and low blood pressure likely because of a very long labor. I was able to

see her AFTER having manual removal of my placenta (ouch)! She stayed in

the special care unit until our discharges two days later. I asked her

nurses

and doctors about the spot but no one seemed concern. Later, at her

pediatrician appts, I often asked about the spot, only to be told it was a

hemangioma and would go away.

>

> I later noticed a hole (now to be known as the dimple). It was easily

seen if you just slightly pull on one cheek to separate the crack. I just

thought it was cute. I didn't know anything.

>

> Later, my husband got a new job in a new town and we got a new

pediatrician with the move. At her 9-month appt, she was immediately

concerned about

the strawberry because it had a slight fatty pouch. She quickly looked for

the other markers (dimple and deviated buttcrack) and referred us for a

MRI. In under a month, we found out she has a tethered spinal cord (both

lipomyelomeningocele and fatty filum terminale) and will be needing

surgery.

Dr. Fuchs at Duke Childrens Hospital is her physician.

>

> ***Sorry to be lengthy. We've been told to expect for her to stay in the

hospital 6-7 days after surgery because of her type of tether and likely

be out of daycare 2-3 weeks after.

>

> My frustration with the hospital pediatricians from her birth and her

first pediatrician in our old town and their lack of care in this matter

is

growing and I'm not sure if there's anything I can do. Additionally, I'm

VERY scared at the potential costs of this entire scenario. We have good

insurance but we already pay $600/mos for it and received $500 in bills

alone

last week from the MRI (with more to come I'm sure and many more after

surgery and our lengthy stay).

>

> Do children born with this condition qualify for anything financially

that can help us? Medicaid? SSI? My husband and I are both teachers and

see

that this might take us FOREVER to pay off. Is there any assistance out

there? How does the Mc House work?

>

> Is this condition something that we could see again if we want another

child in the future? Has anyone had this surgery at Duke and/or had Dr.

Fuchs? Any info anyone can provide to help us at this point would be MORE

than

appreciated. Thank you. *Martha & family

>

April 6, 2011

Martha.. there are 2 things- deductible and an out of pocket maximum.My

deductible is $300 and out of pocket $5000 (because I was " new " to plan " )They

start to pay after you meet your deductible- at a certain %, then after you meet

your out of pocket max 100%.

My bills were around $1200 (w/o deductible), and I was in the hospital for a few

extra days.