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  #1  
Old 02-06-2006, 08:20 PM
Aprilsmom Aprilsmom is offline
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Default insurance and MRI

I have a 5 month old daughter with a PWS on her right temple area and corner of eyelid. Just found out at 4 month check up because her 1st peditrician said it would go away(strawberry) but I knew better so I switched peditricians. My very good friend has a PWS on her cheek so I didn't believe 1st dr. She had laser 14 years ago when we were in high school.
I have been reading everything I can and wanted to know if anyone has dealt with Great-West health insurance? I live in Texas and my husband and I are trying to figure out if we are going to have to fight the insurance company or not. She isn't scheduled for her appt. with Texas childrens derm until March 28. So I am not sure what course of action we will be taking as for as treatment. I am assuming we would do the laser treatment. Do they normally do an MRI with it being on her temple? I want to make sure I am well informed before the 1st appt.

Thank you
Erika
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  #2  
Old 02-07-2006, 02:32 AM
hankbartenbach hankbartenbach is offline
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Location: Nebraska
Posts: 533
Default Re: insurance and MRI

Hi Erika,

My name is Hank I am 23 years old with PWS/SWS.

Have you had a clinic appointment with this dermatologist yet? If not, that is probably what you will be doing for your first appointment. If it is I would try to get the doctors office to write a letter to your insurance company saying why it is a must that your daughter receives this laser treatment because it could cause health issues in the future.

As far as the MRI. I would wait until the doctors appointment before trying to get a doctor to request the MRI's. There is a chance that your daughter could have some form of Sturge Weber Syndrome (SWS) which means she would have calsifcation on the brain the causes seizures. A MRI with and without would comfirm if SWS is present on the inside of the head.

Also, one other part of SWS is glaucoma. Even if she does not have SWS I would strongly recommend getting her eyes checked for glaucoma because the PWS is so close to the eye. If you have not seen an eye doctor you need to find a Opthmologist ASAP to make sure. Then I would get checked as regular as the Opthmologist recommends.

I agree the wait and see approch either way is not always the right way but most doctors are not trained to treat them.
The doctor you see will probably use the V-Beam Pulse Dye Laser made my candela because it is safe on infants. It is the best machine I have used yet in the eighteen years of doing laser treatment and I recommend it highly. It really depends on the doctor and how they set up the machine.
Also, if you want to check under the resource section at the top of the page under find a physican to see if the doctor you are going to is listed in your area of TX. If not and there is one in your area I would get an opinion with him/her as well.

I hope this helps and if you have any other questions please ask we are here for you.

Hank
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  #3  
Old 02-07-2006, 05:03 PM
Aprilsmom Aprilsmom is offline
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Default Re: insurance and MRI

She has her 1st Dermatology appt. on March 28 with Dr Denise Metry at Texas Cheldrens in houston. I saw her on the directory and she was recommended by our peditrician.

I was asking about the MRI because I thought they may want one and I wanted to warn my husband. I have been showing him pictures of what it might lok like after laser. He works alot and I want to make sure he is prepard for what is to come.

I will be making an appointment with an Ophtamologist. Thanks for the laser safety on infants. I am currently reading about that topic.

Thanks again for the help
Erika
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  #4  
Old 02-08-2006, 04:29 AM
hankbartenbach hankbartenbach is offline
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Location: Nebraska
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Default Re: insurance and MRI

Hi,

I would wait until you see the doctor before getting the MRI requested, unless a doctor you are seeing wants a MRI since one has to request it to get done.

Also, if you would like to see baby pictures or older of my birhtmark and see what laser treatment has done for me you can go to my website www.hankspws.com. You can email me any questions you might have of my pictures. Also, the link to Candela (maker of the V-Beam) is on this website and mine if you want to do more research on it.

Talk to you later.

Hank
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  #5  
Old 02-08-2006, 04:33 AM
juliemn juliemn is offline
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Posts: 95
Default Re: insurance and MRI

The dermatologist may have a standard procedure that they use with the insurance company. I've heard some to be very helpful...and some not. If you find yourself having to fight the insurance company, there are great resources on a couple of the frequented boards and newslists for birthmarks.

I think the eye exam is a good idea. As for an MRI, it depends on a lot of different things. Some doctors will order as a standard if there is upper eyelid or upper forehead involvement...some don't know to order it at all (really..not lying there)....some take a wait and see approach unless there is a symptom or reason to proceed with one on a small infant. MRI's are far more accurate after the age of 2 than they are in an infant.

If the eye exam is normal, and she doesn't experience any symptoms of underlying conditions....waiting until she gets a bit older might give you the best imaging to rule out any brain involvement. Just MHO of someone who's been there, even though I know from experience the waiting is horrible on the Mommy. If you have concerns I would definitely seek the advice of a neurologist. They would give your best advice on any choices to make in this situation.

Good luck with the derm!

Julie
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Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #6  
Old 02-08-2006, 04:33 AM
juliemn juliemn is offline
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Default Re: insurance and MRI

OT.....hi hank!
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Mom to Ben (multiple AVM's, PWS, SWS)
www.MeetBen.com
jshiggie@gmail.com
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  #7  
Old 02-08-2006, 09:32 PM
Aprilsmom Aprilsmom is offline
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Default Re: insurance and MRI

Julie thank you I think the waiting is definitely hard. I am not very patient when it comes to something like this. My grandmother told me yesterday it is because I can't control the situation and she is right. Luckily I also have a 3 year old and 18 month old to keep my mind occupied until the derm appt.

Hank thanks I went on your website. It was a big help. Your story is definitely helping me. I know she is only 5 months old but as a mother I worry about every aspect of her life this might effect and am trying to make sure my husband and I can guide her through. Your social issue section was helpful. So far no one has ever asked me about her PWS.

Thanks again.

Erika
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  #8  
Old 02-13-2006, 03:09 AM
kiddiemom3
 
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Default Re: insurance and MRI

Hi,

Just wanted to add that my daughter had an MRI done at about 10 months - the results were good. However, because of some development issues we had one done at age 2 - the results - she was diagnosed with sws. I would first see if a neurologist would want an MRI and wait until a little over a year as I have heard from others that under a year you won't necessarily get the right results since their so small.

Also be aware that many people are involved in an MRI (dr. that reads it, anesthesiologist, ....) they might not accept your insurance - just beware - I had a lot of insurance fighting to do.

If you have any additional questions about this issue or any other regarding pws, laser you can email me at kiddiemom3@yahoo.com

Sincerely,
Kiddiemom3
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  #9  
Old 02-14-2006, 09:27 PM
Aprilsmom Aprilsmom is offline
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Default Re: insurance and MRI

Kiddiemom3,

Thanks you for the info. on the MRI it sounds like waiting is best. I wasn't sure if the derm. would even suggest getting one. I fear that I will be fighting with my insurance over the laser treatment. It is hard to believe after all I have read in the last month that the insurance considers PWS treatment cosmetic.

Thanks again
Erika
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  #10  
Old 02-15-2006, 03:53 AM
kiddiemom3
 
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Default Re: insurance and MRI

Erika,

In my case, I live in NY, the county that I live in has a special program officially called "________ children's developmental program" (sounds scary) but they are there just in case my insurance doesn't kick in. It might be worthwhile to see if there is such a program in your state, county to use as a backup. (You don't have to be poor to be eligible and they consider pws a medical issue.) You physically and mentally have to prepare yourself for the insurance fight - but its a fight that can be won.

When my daughter was born we were ready to take all our money from savings to use it to get rid of her pws. As of now, we didn't yet have to use it. She has had about 17 - 18 treatments and it has been lightened immensely.
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