I'm officially devastated

[peglem]

Had our follow up Rheumy appointment today....here's the thread about the 1st appt. just so I don't have to repeat all that.

http://www.latitudes.org/forums/index.php?showtopic=5835

 

Bottom line, "I can't offer you treatment." Which translates to "I'm not willing to take a risk since your child is so severe, its probably not worth it."

He explained that he had lengthy conversations with both Dr.s Cunningham and Latimer, who were both very "impressed" with her CamK #'s (rather high-242%, not in exacerbation).

 

Anyway, HE is not "comfortable" treating this. If something went wrong with PEX, he could lose his license....blah, blah, blah. He's sorry to dissapoint us, but he just CAN'T (emphasis his) treat this with plasmapheresis. But, hey, he found us a neurologist who would be willing to treat her. "Who?" I asked. "Dr. Latimer" he said, as though he searched the country for this novel idea! I explained that we have no money and she doesn't take our insurance. "Oh," he said, a little deflated, "you've already checked?" I gather referring me to somebody else was part of his "burden of care" before he booted me out the door. Then he said we may be able to find a neurologist locally who would treat...not under a PANDAS dx though. I asked under what dx? He said there are doctors out there treating autism with plasmapheresis and IVIG...though he couldn't name a single one, and said its "our job" (implying not his) to find somebody.

 

I didn't cry until after we left- aren't you proud of me? I feel like an anvil has been dropped on my chest.

 

So, tomorrow, when I'm done crying, I'm going to call the insurance company and let them know that he recommended an out of network neurologist with special expertise (he did say he doesn't have enough expertise in this area) and see if they will approve our seeing Dr. Latimer...I figure its worth a shot.

[ajcire]

BIG HUGS to you! I don't really know what PEX is... why would it be more dangerous to treat your child than another child with it? What is he afraid could happen?

 

 

 

 

Had our follow up Rheumy appointment today....here's the thread about the 1st appt. just so I don't have to repeat all that.

http://www.latitudes.org/forums/index.php?showtopic=5835

 

Bottom line, "I can't offer you treatment." Which translates to "I'm not willing to take a risk since your child is so severe, its probably not worth it."

He explained that he had lengthy conversations with both Dr.s Cunningham and Latimer, who were both very "impressed" with her CamK #'s (rather high-242%, not in exacerbation).

 

Anyway, HE is not "comfortable" treating this. If something went wrong with PEX, he could lose his license....blah, blah, blah. He's sorry to dissapoint us, but he just CAN'T (emphasis his) treat this with plasmapheresis. But, hey, he found us a neurologist who would be willing to treat her. "Who?" I asked. "Dr. Latimer" he said, as though he searched the country for this novel idea! I explained that we have no money and she doesn't take our insurance. "Oh," he said, a little deflated, "you've already checked?" I gather referring me to somebody else was part of his "burden of care" before he booted me out the door. Then he said we may be able to find a neurologist locally who would treat...not under a PANDAS dx though. I asked under what dx? He said there are doctors out there treating autism with plasmapheresis and IVIG...though he couldn't name a single one, and said its "our job" (implying not his) to find somebody.

 

I didn't cry until after we left- aren't you proud of me? I feel like an anvil has been dropped on my chest.

 

So, tomorrow, when I'm done crying, I'm going to call the insurance company and let them know that he recommended an out of network neurologist with special expertise (he did say he doesn't have enough expertise in this area) and see if they will approve our seeing Dr. Latimer...I figure its worth a shot.

[dcmom]

Peglem- Although Dr latimer doesn't take any insurance, Georgetown was in my network, which meant all of their doctors were. You will only need to see Dr Latimer for probably one appt- if you can bring records from Cunningham, plus med records showing abx, etc. You then go to the Gtown docs, and really don't need to see latimer again...

 

I wish you luck- try not to take no for an answer

[peglem]

Peglem- Although Dr latimer doesn't take any insurance, Georgetown was in my network, which meant all of their doctors were. You will only need to see Dr Latimer for probably one appt- if you can bring records from Cunningham, plus med records showing abx, etc. You then go to the Gtown docs, and really don't need to see latimer again...

 

I wish you luck- try not to take no for an answer

I don't know anything about "Georgetown." Is that a research facility, or what? We could swing the cost of a couple of appointments-just not the plasmapheresis or IVIG. Guess I need to contact Dr. Latimer. Is email or phone best?

[bronxmom2]

I was going to say the same thing-- money is also a HUGE concern for us--

 

I felt like I was taking a gamble on Dr. Latimer, because I knew I'd have to pay the $580 to consult with her, but I hoped that, once I had done that, she would be able to get the treatment itself covered by insurance-- and I was right!

 

The only expenses I have had are the $580, and the travel expenses (we came down from NYC and had to put my mom up in a hotel for 3 nights to watch my baby). We took two trips to DC, one for my appt. with Dr. Latimer... the second for the PEX.

 

The trick for you is going to be squeezing this into one trip. You'll need everyone's cooperation for that. You may need to see Dr. L on a Friday and plan to begin treatment on a Monday, and stay over the weekend.

 

I find that emails to Dr. Latimer sometimes get lost in an abyss, so you should call their office and explain everything to Andrea.

 

301-530-9200

[lss]

Peglem- Although Dr latimer doesn't take any insurance, Georgetown was in my network, which meant all of their doctors were. You will only need to see Dr Latimer for probably one appt- if you can bring records from Cunningham, plus med records showing abx, etc. You then go to the Gtown docs, and really don't need to see latimer again...

 

I wish you luck- try not to take no for an answer

I don't know anything about "Georgetown." Is that a research facility, or what? We could swing the cost of a couple of appointments-just not the plasmapheresis or IVIG. Guess I need to contact Dr. Latimer. Is email or phone best?

 

 

Where do you live? Are you in DC or anywhere close to NY or NJ?

 

Linda

[smartyjones]

So, tomorrow, when I'm done crying, I'm going to call the insurance company and let them know that he recommended an out of network neurologist with special expertise (he did say he doesn't have enough expertise in this area) and see if they will approve our seeing Dr. Latimer...I figure its worth a shot.

 

peglem - i know it's really difficult right now - but this could be a silver lining. i've been talking a lot with our insurance co(cigna) b/c it's open enrollment and i want to make the right decisions. in our current policy, nothing of latimer would be covered for us - however, they offered up to me that if i can't find appropriate treatment w/i 25 miles, i'd likely get the dr covered in network. it may be a good thing that drs are telling you she is the only one to help b/c then the insur may be more likely to cover her as innetwork b/c they can't offer you treatment in network. of course, it wouldn't be her entire bill but may make it more reasonable for you.

 

i used to work in sales - i think the best approach is to be really nice, tell them your frustrated - you're just trying to get treatment for your child - and ask for them to tell you what you should do to get help from them. i usually find if i approach someone asking for help and advice they're more likely to help. I'd use their name and say something like, "XXX, i'm hoping you can help me b/c i'm extrememly frustrated. i'm trying to get treatment for my sick child and i seem to be reaching dead ends." think about it - they deal with people argueing and yelling at them all day - if you're nice and truly asking for advice, they'll notice.

good luck!

[peglem]

Peglem- Although Dr latimer doesn't take any insurance, Georgetown was in my network, which meant all of their doctors were. You will only need to see Dr Latimer for probably one appt- if you can bring records from Cunningham, plus med records showing abx, etc. You then go to the Gtown docs, and really don't need to see latimer again...

 

I wish you luck- try not to take no for an answer

I don't know anything about "Georgetown." Is that a research facility, or what? We could swing the cost of a couple of appointments-just not the plasmapheresis or IVIG. Guess I need to contact Dr. Latimer. Is email or phone best?

 

 

Where do you live? Are you in DC or anywhere close to NY or NJ?

 

Linda

Nope, I'm all the way over in Arizona. We'll have to travel by car...no way to get this kiddo on an airplane.

 

I'm sure my pediatrician will work with her- he could preorder all the labs she wants done, so we could come with labs completed..

 

You guys have no idea how relieved I feel already! Gee, 1/2 hour ago I was sobbing in a fetal position!!! Thank you so much!

[matis_mom]

Peglem- Although Dr latimer doesn't take any insurance, Georgetown was in my network, which meant all of their doctors were. You will only need to see Dr Latimer for probably one appt- if you can bring records from Cunningham, plus med records showing abx, etc. You then go to the Gtown docs, and really don't need to see latimer again...

 

I wish you luck- try not to take no for an answer

I don't know anything about "Georgetown." Is that a research facility, or what? We could swing the cost of a couple of appointments-just not the plasmapheresis or IVIG. Guess I need to contact Dr. Latimer. Is email or phone best?

 

 

Where do you live? Are you in DC or anywhere close to NY or NJ?

 

Linda

Nope, I'm all the way over in Arizona. We'll have to travel by car...no way to get this kiddo on an airplane.

 

I'm sure my pediatrician will work with her- he could preorder all the labs she wants done, so we could come with labs completed..

 

You guys have no idea how relieved I feel already! Gee, 1/2 hour ago I was sobbing in a fetal position!!! Thank you so much!

Peglem,

Wow, driving all the way from Arizona! My husband did it with his dad when his dad moved down there from this area, it's a long trip!

Is there any way you could do a phone consult with Dr. Latimer, and then get the procedure done closer to home? Maybe some of the people in this forum can recommend someone closer? Anyone?

About the insurance, try talking to them and see what you can get, and like someone else mentioned, this is the time of year to switch plans, maybe you can opt for a plan that covers more out-of-network. We have Cigna Open Access and they have been covering 70% of out-of-network doctors, and most of the labs.

 

Hang in there, when there's a will, there's a way.

 

Isabel

[peglem]

Our next year insurance plan is already locked in- process completed at my hub's job already. I've decided if I have to raid my retirement, I will...just have to die early, I guess! I had to quit my job 5 years ago to take care of my daughter- gramma couldn't manage her anymore, and well, you know how tough it is to find somebody who can deal with these behaviors (and not kill your child!)...So that left us living on about $42,000/year. I'm good at living poor! My baby needs this chance.

[FallingApart]

Peglem,

 

We just did PEX with Dr. L. We traveled from Seattle to do it. We did it in 2 trips. It was quite the ordeal, but we menaged it. We have also drivien cross country with our PANDAS child and I might have some tips for you on attempting to fly. The 3 day trip might be worse than getting it over with in 8 hours of flying time traveling.

 

Dr. L did imply that she would get PEX worked out with the insurance company. I think other posters are correct in saying that your possible only expense would be the $580 consult. Plus all the travel expenses. We had to take my mom as well. We also had to fly my husband and other daughter to Ohio to deal with his termanilly ill father but all told, the 2 trips cost around $10k. We also flew our pediatrician and paid for her stay. So it might have been closer to $8500 without that. All said, it was a huge undertaking.

[lss]

Our next year insurance plan is already locked in- process completed at my hub's job already. I've decided if I have to raid my retirement, I will...just have to die early, I guess! I had to quit my job 5 years ago to take care of my daughter- gramma couldn't manage her anymore, and well, you know how tough it is to find somebody who can deal with these behaviors (and not kill your child!)...So that left us living on about $42,000/year. I'm good at living poor! My baby needs this chance.

 

 

I spoke with another Pandas mom from Arizona and she gave me the name of Dr. Robrt Hellmers who is treating her Pandas child. He has offices in Chandler, Mesa and Phoenix. 480-897-6992-Chandler, 480-346-4680-Mesa and Phoenix-602-266-4114.

 

There s also Dr. Dines Talwar out of the University Medical Center in Tucson, he i a neurologist treating Pandas patients.

 

Linda

[peglem]

Peglem,

 

We just did PEX with Dr. L. We traveled from Seattle to do it. We did it in 2 trips. It was quite the ordeal, but we menaged it. We have also drivien cross country with our PANDAS child and I might have some tips for you on attempting to fly. The 3 day trip might be worse than getting it over with in 8 hours of flying time traveling.

 

Dr. L did imply that she would get PEX worked out with the insurance company. I think other posters are correct in saying that your possible only expense would be the $580 consult. Plus all the travel expenses. We had to take my mom as well. We also had to fly my husband and other daughter to Ohio to deal with his termanilly ill father but all told, the 2 trips cost around $10k. We also flew our pediatrician and paid for her stay. So it might have been closer to $8500 without that. All said, it was a huge undertaking.

Wow, Seattle! I just really don't see how to fly with this kid...maybe it would go okay, but I doubt it. Just a trip to the grocery store is a 50/50 proposition, but at least there you can "abort mission" if necessary! We have taken road trips with her, so we know that is doable, and we know how to manage her on those.

[mom md]

Before we went we looked and Georgetown takes most insurance plans. Dr. Latimer we had to pay for but we applied it to our out of network deductable. We have BCBS of NC and they covered the PEX and all other hospital expenses. Definitely worth some investigation. I think the doctors know not to code it with PANDAS, but to code it with an immunodeficiency or autoimmune code diagnosis. Good luck.

[Suzan]

I wanted to add my sincere hugs to you. I am so sorry this has happened. I know you are crushed and worried and tired. I hope that tomorrow things will somehow look better and more managable.

 

Susan