Trying to find help with Diagnosis

[MaryJ]

I am new to these forums. I have a 15 year old daughter who has FG Syndrome (variety of anomilies)...her blood counts have been dropping for about 8 years now but only within the last 3 years has it caught the attention of the doctors. She has had two Bone Marrow Biopsies that have not revealed anything very conclusive. She began suffering from symptoms of anemia (dizziness, fatigue, cold hands/feet) so she was put on iron which has helped to a degree. I am assuming that MDS is a progressive thing and in the beginning stages of it, it might not be clear what it is exactly....has that been others experience? Our local hem/oc has been very unhelpful! They do not seem to be interested in discussing with us any possibilities of what we are dealing with. We sent her BMB slides and reports to a Dr. at Cincinnati Children's and then to Texas Children's. Both places feel that she has mild AA or MDS but insurance has been unwilling to refer us out of the system...we are very frustrated! Just wanting to know what other's experiences have been through the diagnosis process.

Thank you

[Hopeful]

Hi MaryJ,

MDS is very rare in children. You definitely want to get a second opinion if this is being thrown around as a diagnosis. I'd recommend consulting with the doctors at Stanford, as it is not that far away from you. Dr. Jason Gotlib is an MDS expert and also is very knowlegable about related genetic diseases. I don't know if he will see a pediatric patient, but he could probably refer you to someone at their Pediatric Center of Excellence if he doesn't. It is worth a phone call to check this out.

Where are you now? Do you have an HMO? I found that with some phone calls, my HMO approved a one-time-second-opinion consult outside their network. After that, I paid out of pocket for my expert consults while having all the labs, BMBs, etc done at my local doctor.

[MaryJ]

Hopeful,

Thank you for the reply....we actually don't live that far from Stanford....we have already gone to UCSF Children's Hemotology Clinic for an outside of network opinion a couple of years ago which our insurance (yes-HMO) gladly paid for, the Dr. there did not feel there was anything to be alarmed about since we were mainly looking at Severe Neutropenia at the time, her other blood lines had dropping counts but they still felt it was within acceptable limits even though they were dropping.

Her last BMB was reviewed by one of the hem/oc docs in our local group, he said to me that our daughter was a ticking time bomb but still refused to refer us out of the system. We tried to go through our immunologist, which resulted in a ridiculous back and forth between him and our "case manager", then we received a certified letter from our insurance saying our request to go out of system had been denied.

We have two of the top Drs. in pediatric hematology in the country looking at our daughter's BMB slides and reports and medical history and they want to see her and feel she is headed toward bone marrow failure, yet the Drs. locally feel that there is nothing wrong with her, just low counts. It's all making me a little crazy!

Thank you, we will consider Stanford if we can convince the insurance company to allow us other opinion.

[Sally C]

Hi Mary,
You may want to look into clinical trials as well. Surely there are some close to where you live. My husband is in a clinical trial in Bethesda, Md. at The National Institutes of Health. Anything they do is free to us as it comes under research. It took 6 months for us to get a diagnosis for my husband's MDS. Only when we went to NIH did we finally get the diagnosis. Our insurance covers the blood work done at home - even that which is sent to NIH.
Good luck and God Bless,
Sally

[annmonster]

I recently phoned one of the Patient Educators here on this site..... she had some suggestions for dealing with insurance companies..... there are a couple of non-profit organizations who assist patients ..... of course, I can't remember their names..... but might be worth a call. I found Patient Educator VERY helpful : )

[MaryJ]

Thank you both for your replies, SallyC and Ann, I will look into both options. I really do need some information on how to deal with our insurance company, it's sad that it seems we have to play games to get health care!

[cheri]

Annmonster~

I'd like to find out more about those Patient Educators...you said you found them on this site? Can you be more specific? Thanks.....

[annmonster]

Hi !!

Go to the " home " page and then click on " Support and Community : ..... a bar will appear.... and I think a phone number as well ....... Let me know if that doesn't work .... : )

BTW, I've been going in insurance circles today as well..... so NOT FUN !! Been passed from one person to the next just to try to schedule an appt. at a regional cancer hospital ( and I already have the authorization ) . Sorry .... just had to blow off some stream !! AAAAAARRRRRRGGGGGHHHHH ! There, I feel better now .

[Neil Cuadra]

Originally Posted by annmonster

Go to the " home " page and then click on " Support and Community : ..... a bar will appear.... and I think a phone number as well ....... Let me know if that doesn't work .... : )

Here's a shortcut link: Contact a Patient Educator