HELP in NJ...medicaid question

[Guest guest]

OK...after 10 months of being in idle mode after my daughters

diagnosis, i am now moving forward with a vengeance.

Brief

history...last spring she was having drop attacks. Went through 3

different hospitals (1 was an ER visit, the other 2 hospitals she had

a weeks stay in each all within a 3 week period).

Her primary

diagnosis was " epilepsy " (which i do not think she has...she portrays

more chiari symptoms than epilepsy). ER visit to 1st hospital..they

had no idea what was wrong with her and suggested we push for an MRI

with pediatrician and shipped us home. Next day, went to Childrens

Hospital and after a week there of many different tests and so on,

the neurologist comes in the last day says it's epilepsy, here's your

meds, a helmet so she doesn't hurt her head when she falls,

goodbye.

We were left high and dry with our heads in a total spin.

2 days later ended up at another childrens hospital where we spent

yet another week. The neurologist kept saying he wasn't convinced it

was seizures. He said it just didn't add up. He said he had a

couple things in mind that it may be...after testing, he determined

it wasn't any of those other things as the tests were negative.

After days of him fighting pne facility he finally

got our daughters reports from them. Our neurologist said he read

the records over and said i guess it call comes down to Epilepsy. It

was as if he didn't believe it, but that's what the hospital said so he was

going with that diagnosis. He then said " oh...i see the hospital diagnosed

her with a chiari malformation " . I said " excuse me?? a wha?? " He

said " you didn't know about this? " Ahhhh.......NO!! So they

(neurologist and nsg and 2nd childrens hospital) lead me to believe

that Epilepsy was the primary diagnosis and the chiari-1 malformation

was nothing to be concerned of and all they do is monitor it.

You

know the drill with that story as we've all been there...yada, yada,

yada. For 10 months now we've been to specialist after specialist

that the neurologist and nsg sent us to and for testing. The tests

she had were regular MRI's (of the cervical, thoracic and lumbar

spine), ct's of the brain, eeg, ekg, ultrasound of the heart, gait

lab (which they picked up she has an abnormal gait), rotary chair.

She has NOT had anymore MRI's repeated, which makes me wonder if she

should have had more MRI's done by now to check the size of the CM

and to check the CSF.

We have had numerous (wasted, might i add)

visits to the nsg. He said the same thing over and over " we'll just

monitor it and she doesn't have the main symptoms of a chiari

malformation " . As for the neurologist...i had asked him several

times what type of seizures she has and he stated C saysin their

records that it's " partial complex seizures " from the right temporal

lobe. I have researched all this time on seizures and she does not

portray any of the symptoms of partial complex seizures. If it turns

out they are in deed really seizures, i would have to question the

type because if anything, she portrays symptoms of absence seizures.

I keep a VERY detailed log of everything when she has her drop

attacks, and the only main common trigger in each event is that

heat/being overheated played a role. Her last visit to the

neurologist was in January. It was *that visit that we were to find

out when she was going back into the hospital for more MRI's and a 72

hour EEG. At that visit, the neurologist said that since she's doing

so well and hasn't had many drop attacks, her bloodwork came back

perfect and that he was pleased she was just admitted to the TAG

program at school, we'd skip the tests and hold off till summer so

her daily schedule wasn't disrupted and she didn't have to miss

school. I thought that was odd. On one hand i was happy to hear

this because he made me feel things were going to be ok, but after

hearing the next bit of news, i'm now skeptical. Next came the bad

news...he was leaving that hospital at the end of the month. He said

if he stays in the area he'd be in touch or we could pick from

another neurologist in the group. Haven't heard a word from him and

no one seems to know where he went. Makes me wonder! So...at that

point, we had already made the decision we were NOT going back to the

worthless nsg. that we had and we discover we have no neurologist.

Back to square one all over again!! I was sick over not having a

specialist to call so i started researching for another neurologist

in the group. Found one...he specializes in Epilepsy and EEG

readings. I liked what i read about him and hopefully he can be the

one to help us determine if this really is epilepsy or the chiari. I

know in my heart that what she is going through is from the chiari

malformation. If they are seizures...i'm convinced it's the chairi

causing it. I have said that from day one. I was convinced it was

either the chiari causing it OR a lack of blood/oxygen to the brain.

I think that briefly (yeah...that is the short version LOL) brings me

to date.

Two weeks ago she started with some new symptoms. Her NORMAL

symptoms prior were drop attacks. She'd get dizzy, drop to the floor

and pass out and be right back up in about 5 seconds. She would have

minor head pain for a couple seconds. She has always been a toe

walker. She is very clumbsy and getting worse. She complains of

double and blurred vision, leg pain at times, sometimes minor back

pain. Her episodes of passing out only happened when she was

standing still (not running, not active) or sitting straight up in a

chiar (NOT leaning back with no support from the back of a chair).

That is it...never occured in her sleep or while moving. That was it

up until a couple weeks ago. She was in school, doing an errand for

the teacher and she had blacked out ON the stairwell. She also had a

drop attack that same day while walking back to class from the

bathroom. So, they are changing in nature...they are happening while

she is physically moving/active now. She started to complain of

tingling in her hands and feet. She said it wasn't bad, just

annoying. With all this said and with my leap forward to get her to

TCI soon, this brings me to my reason for writing:

I applied in the fall for SSI for her. We were so bad off with her

medical bills that toilet paper had become a luxury!! We were

scraping change for gas that's how bad things became. I found out we

were denied for SSI and i was LIVID. I contacted a congressman over

this and i JUST this past week got a call back and have been playing

phone tag with them since. NOW...my next thing is...people have been

encouraging me to apply for medicaid for her. I have spent 2 days

now trying to figure out medicaid and i just don't understand it and

i cannot find the forms online that i need to fill out for her. I

have found long term care for like nursing homes, etc. but i can't

seem to find the info i need that pertains to our daughters

situation. Anyone here from NJ that has filed for medicaid? I

recall talking to the Epilepsy foundation and they told me of a

loophole called " medically needy " to apply for if we got denied, but

after getting denied for SSI, i was kind of set back and put back

into idle mode because i felt like nothing was going to work for us.

I am now very determined to get her covered and find out what i need

to do to do this. I have the number and address to where i need to

go, but can i fill this out online and submit it?? I am at the

beginning phase of trying to get her the extra help i need to do to

get her medical expenses covered. At this point, just driving there

and finding a place to stay will hit us hard in the pockets so i need

to exhaust all things she may be eligible for to keep us from coming

close to losing everything we own all over again. Any info? Any

advice? Sorry this was so long but i never really did post my

introductory post of her situation. Thanks all for listening. I'm

confident you all will have just the right answers for me. Just

reading all of the posts on here, i've learned more in a week than i

have in 10 months and for that i THANK YOU ALL. : )

Robin,

Mom to Olivia, age 8, CM (13mm), Epilepsy (?)

carepage: OmitOliviasObstacles