Frustration, Any suggestions?

April 8, 2005

Loriann

it must be so frustrating.....any chance yo can ask for a loaner until the new chair arrives?...also, sometimes the pt places have equipment the can loan out. Best of luck with the insurance companies.

rosy

April 8, 2005

Yesterday was a very frustrating day. My son Lucas

who is 9 yrs old was just in the hospital last Feb.

with a 45 minute febrile seizure and Influenza A

(despite the flu shot). Since his seizure Lucas has

not totally returned to his baseline. His walking,

stamina, balance, posture and possibly his vision have

all been affected. We have been in the process for

over a year to make modifications to his wheelchair.

Anyways we just heard yesterday (after I called them

to find out our status) that the modifications were

questioned by Beckett and they will not

reimburse the wheelchair company for what it would

cost them to do it. We had received approval from our

primary insurance company last year that they would

pay a portion of it. Beckett will pay for buying

awhole new chair but will pay an absurd abnormally low

reimbursement amount to modify the chair. Now we

have to resubmit another request but go through our

new insurance who does not have the wheelchair company

as their preferred provider and therefore would be out

of network, wait for probably another 5-6 months,

having us to decide what chair would last him the next

5 yrs. and fortunately we were able to get in to see

the rehab dr. next week to make sure what chair we

pick out will be appropriate. In addition the

incurance company will be maxed out on equipment and

probably won't pay for the modification we need for

that. Lucas' kyphosis has worsened over the last 4-6

weeks alone and he whimpers or fights getting into his

wheelchair and or Rifton chair. We have a Rifton

toilet seat which was getting too small for him last

year. That too came back with further questions for

the guy who fits the equipment to answer. I really

don't know how long the denial was waiting at the

wheelchair company but I was the one who had to call.

We also were looking for modifications to his Rifton

chair that they were going to design themselves. When

I called she said that Beckett would not approve

an additional seating system for him. Why does it

take them 3 weeks to tell this to me? They were

supposed to call with any problems. You would assume

no news was good news but in this case it means let's

just wait until the family wants to know. It didn't

help yesterday to be told by school that Lucas had

about a 15 second seizure yesterday. I didn't totally

panic about that but it means that maybe he has

developed seizures unrelated to having a fever which

we thought his last one was due to. Next week starts

our follow-up appointments with us seeing in the next

2 months: rehab dr., pediatrician, neurologist, GI

dr., orthopedist, geneticist and endocrinologist. I

am interested in speaking with each of them due to the

changes he has encountered. We have never had a

confirmed mito diagnosis but in the last year we have

gotten a diagnosis on nonspecific mito as well as a

long-chain fatty acid oxidation disorder most likely

secondary to the mito. Does anyone have any

suggestions as to how to get our equipment faster so

as that we can prevent any further complications and

avoid any back surgery or bracing? Thanks for

reading.

Loriann -mom to and 12.5 yr old twins and

Lucas - 9 yrs old with nonspecific mito, LCHAD,

ataxia, global developmental delay, cortical visual

impairment, seizures, hypothyroid secondary to

pituitary malfunction, GERD, J-J tube fed, impaired

motility etc.

April 8, 2005

I can't be any help, I just wanted to write and sympathize with

what you're going through. How frustrating! I can't believe what

you're having to go through.

I can understand the worry about the onset of seizures, we think

Sheldon had seizures when he was vomiting and in the hospital. He's

only had febrile seizures in the past so I'm worried that this is

indication of mito progression.

Yesterday was a very frustrating

day. My son Lucas

who is 9 yrs old was just in the hospital last Feb.

with a 45 minute febrile seizure and Influenza A

(despite the flu shot). Since his seizure Lucas has

not totally returned to his baseline. His walking,

stamina, balance, posture and possibly his vision have

all been affected. We have been in the process for

over a year to make modifications to his wheelchair.

Anyways we just heard yesterday (after I called them

to find out our status) that the modifications were

questioned by Beckett and they will not

reimburse the wheelchair company for what it would

cost them to do it. We had received approval from our

primary insurance company last year that they would

pay a portion of it. Beckett will pay for buying

awhole new chair but will pay an absurd abnormally low

reimbursement amount to modify the chair. Now we

have to resubmit another request but go through our

new insurance who does not have the wheelchair company

as their preferred provider and therefore would be out

of network, wait for probably another 5-6 months,

having us to decide what chair would last him the next

5 yrs. and fortunately we were able to get in to see

the rehab dr. next week to make sure what chair we

pick out will be appropriate. In addition the

incurance company will be maxed out on equipment and

probably won't pay for the modification we need for

that. Lucas' kyphosis has worsened over the last 4-6

weeks alone and he whimpers or fights getting into his

wheelchair and or Rifton chair. We have a Rifton

toilet seat which was getting too small for him last

year. That too came back with further questions for

the guy who fits the equipment to answer. I really

don't know how long the denial was waiting at the

wheelchair company but I was the one who had to call.

We also were looking for modifications to his Rifton

chair that they were going to design themselves. When

I called she said that Beckett would not approve

an additional seating system for him. Why does

it

take them 3 weeks to tell this to me? They were

supposed to call with any problems. You would assume

no news was good news but in this case it means let's

just wait until the family wants to know. It didn't

help yesterday to be told by school that Lucas had

about a 15 second seizure yesterday. I didn't totally

panic about that but it means that maybe he has

developed seizures unrelated to having a fever which

we thought his last one was due to. Next week starts

our follow-up appointments with us seeing in the next

2 months: rehab dr., pediatrician, neurologist, GI

dr., orthopedist, geneticist and endocrinologist. I

am interested in speaking with each of them due to the

changes he has encountered. We have never had a

confirmed mito diagnosis but in the last year we have

gotten a diagnosis on nonspecific mito as well as a

long-chain fatty acid oxidation disorder most likely

secondary to the mito. Does anyone have any

suggestions as to how to get our equipment faster so

as that we can prevent any further complications and

avoid any back surgery or bracing? Thanks for

reading.

Loriann -mom to and 12.5 yr old twins and

Lucas - 9 yrs old with nonspecific mito, LCHAD,

ataxia, global developmental delay, cortical visual

impairment, seizures, hypothyroid secondary to

pituitary malfunction, GERD, J-J tube fed, impaired

motility etc.

Please contact mito-owner with any problems or

questions.

April 8, 2005

You would think they would rather spend less money to alter the current

wheelchair than to purchase a new one but sometimes Medicaid and other

governmental programs (waivers) just don't think the same way we do. They

might be thinking the older one won't last as long so why invest in it (even

if they are wrong). We are currently waiting approval from Medicaid for a

wheelchair for my foster son and hoping it doesn't take the 3+ months it

usually does for approval and then the added month to two months it takes to

order and make his wheelchair. For now he has been using Asenath's in the

house since she only uses hers on outings requiring her to walk a lot.

Thankfully we have this one! Hope you are able to get yours sooner rather

than later and get all this sorted out without tons of trouble.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Probable Mito, CNS Vasculitis, strokes, migraines, seizures,

G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting,

bladder issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Probable Mito, strokes, neuro-motor planning, SID,

GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant

subclavian artery, disautonomia, hypertonicity, migraines, possible

seizures, dumping syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)