Grace, update, plea for ideas...

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Sorry, I forgot to change the subject line... See below...

Jane

From: Jane Bigler <janemhar@...>infantile scoliosis treatment Sent: Mon, November 15, 2010 4:49:18 PMSubject: Re: - Wisconsin & Minneapolis

I again need the assistance/support of my fellow support board families...

In the last week, we have been through the ringer. First off what were were originally told about Grace qualifying for the Mitrofanoff procedure has been rescinded. In the words of the Urologist, "you must have heard me wrong". No, I don't believe so. I believe the system, what it is, stepped in and said to a brand new doctor, "what the heck do you think you are doing offering a very expensive procedure to a 4 yr old!" and he had to back down because he was new. I don't blame him, other than him not standing up for what is right.

His offer then was to have us try electrode therapy (using a TENS unit) to try to stimulate Grace to urinate "on demand". So he put in for it through Durable Medical Equipment. I received a denial a few days later with the reason being: "after a review of Grace's medical records, she does not suffer from chronic pain". We are not WANTING the unit for chronic pain. Grrr. Next it was suggested that we put in for assistance, through DME again, paying for pull-ups as she will most likely wear some type of incontinence pad the rest of her life. Again, we receive a denial citing: "convenience items are not covered". Yes, because urinating on yourself with or without the use of a pad/diaper is so "convenient". Grrrr....again. The doctor asked the social work department and they said that sadly, if someone is not covered by Medicaid, they have been

unsuccessful getting pull-ups/diapers covered.

Due to income (believe me, it isn't high!) we don't qualify for assistance such as SSI/SSDI, etc. I am at a loss of where to turn next. I do plan to appeal and my co-worker (an attorney) has offered to help me write the appeal letter.

Tomorrow we have another appointment at Shriner's. I'm going to ask if they have any resources for any/all of what we need, but since none of it is related to her scoliosis/orthopedic needs, I doubt there is anything they can do to help.

Any other suggestions? Thank you all for your help.

Jane

mommy to Grace, 4 yrs old, moderate Omphalocele fully repaired, congenital scoliosis (hemi-vert removed 9/09, followed by 4 casts and a brace for the last 6 mo), neurogenic bladder of unknown cause (bladder doesn't contract and she can't feel the urge to urinate)

and Grant, 8 years old (as of yesterday), chronic constipation, ADHD and ODD