I'm officially devastated

[dcmom]

peg- It is Georgetown University Hospital in DC. You and hubby could probably stay in the hospital with her. Dr Latimer's consult fee is pricey (same as all specialists in this area), but I also was able to get a good percentage reimbursed as out of network. Not many hospitals do the pex on peds so routinely, your daughter will be in good hands. I would push Dr Latimer on the possibility of pex with ivig. And then the option of follow up ivig's in your area. Dr T once mentioned to me that extreme cases he has seen, had both pex and ivig. If need be I would consult him, and have him and Latimer talk. If you are going to do this- you want it done right! PM me if you want my phone #, I live in DC...

 

Eileen

[bronxmom2]

could you sedate her?

[peglem]

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

Thanks, Susan! I feel better already- I've gotten such an outpouring of support and caring from everybody here. Dr. Latimer did tell the rheumy that she'd be willing to take on my daughter's case, and he said that she could probably get her in by December...so I think you've all very quickly helped me get a plan together that just might work! Maybe I'm bipolar? All the sudden I'm feeling blessed instead of devastated!

[Buster]

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.

 

 

I'm so sorry to hear the news. So is your doctor willing to say she needs PEX but can't preform it? That's something you could use...

 

I know you are going PEX to knock down the antibodies (and hopefully see a more immediate improvement than IVIG). Did your daughter have any improvement on pred?

 

[mama2alex]

Hi, I'm so sorry this happened! I don't know how some of these people get medical licenses, seriously.

 

I just got back from the pediatrician (DS has sore throat and PANDAS symptoms are amping, so we got a throat swab) and I saw your post and wanted to chime in.

 

I looked back at your other thread and wondered what happened with your local immunologist and trying to get IVIG based on Specific Antibody Deficiency or other immune deficiency diagnosis? Is that still a possibility?

 

And your not bipolar! Crying in fetal position sounds very familiar to me, and very normal for what you've been through.

 

Hang in there,

Jennifer

[Debbie1]

Hi peglem,

 

It's terrible that getting treatment has to be this rough.

 

Dr. Latimer is worth the trip (although we have not done PEX yet). Maybe she would be willing to work out a payment plan with you if you needed (given that you will also have travel expenses). I know of docs in the NYC area who do not take insurance that are willing to work out payment plans. It might be worth it for you to inquire.

 

We are thinking of you.

 

Debbie

[peglem]

Buster,

I know you are going PEX to knock down the antibodies (and hopefully see a more immediate improvement than IVIG). Did your daughter have any improvement on pred?

Yes, she even started verbalizing a bit on prednisone. She only had the 5 days, but even her teacher noticed how much better she was. On the 5th day, though, she started getting sick with fever and cough.

 

The doctor did not go so far as to say she needed PEX, just that he wasn't "comfortable" treating this and if he did the PEX and she developed problems from it, he might get into trouble...I don't know how much of his explanation was just stuff he was saying to try to get us to understand that he didn't deserve the looks on mine and Hubs faces or what...he was kind of stammering and defensive...I dunno. I don't think he's sure he's doing the right thing.

 

I looked back at your other thread and wondered what happened with your local immunologist and trying to get IVIG based on Specific Antibody Deficiency or other immune deficiency diagnosis? Is that still a possibility?

 

And your not bipolar! Crying in fetal position sounds very familiar to me, and very normal for what you've been through.

 

Hang in there,

Jennifer

The immunologist had someone call from his office (nurse? receptionist?) to give me lab results- everything normal (he's ignoring the IgG subclasses that the pediatrician ran, and the IgA) except the pneumoccocal titers were low again- the ones we did 2 vaxes a couple of years ago, so he could prove her immune system was working. He wanted to do that vax again. I asked what if I don't want to do the vax again. (I'm still talking to whoever is calling to tell me, not the doc) She said I could make an appointment to talk to the doc about it, which I did, for Dec. 1st. My feeling is (because that phone message was such a turn around from the visit on the 3rd) that he and the rheumy talked and decided not to treat...Maybe I'm wrong, but i don't think so. I'll go on the 1st- but I'm not expecting cooperation.

 

 

Debbie,

Dr. Latimer is worth the trip (although we have not done PEX yet). Maybe she would be willing to work out a payment plan with you if you needed (given that you will also have travel expenses). I know of docs in the NYC area who do not take insurance that are willing to work out payment plans. It might be worth it for you to inquire.

We can probably swing the trip and the fee to see Dr. Latimer. I'm quite certain my daughter's pediatrician will be willing to order any tests Dr. Latimer wants to run, and those will be covered by insurance. I think we can make this work.

[Buster]

I know you are going PEX to knock down the antibodies (and hopefully see a more immediate improvement than IVIG). Did your daughter have any improvement on pred?

Yes, she even started verbalizing a bit on prednisone. She only had the 5 days, but even her teacher noticed how much better she was. On the 5th day, though, she started getting sick with fever and cough.

 

 

I mostly wanted to let you know that we're thinking about you and wishing there was some way to help. Hugs first and then a couple questions ...

 

Are you thinking of doing PEX and then IVIG? or just PEX (if you can get it)?

 

The tricky part for your pediatrician/immunologist is if they did find PID then they could order the IVIG for that. It's the ordering of PEX (which isn't recommended for PID) that's probably problematic. They sort of have to find an autoimmune disorder (like PANDAS) to get PEX covered. It's probably worth talking with mom_md about how her's was done.

 

What I was wondering is whether your ped/immunologist was willing to do IVIG rather than PEX (I know in your case getting both is probably better) but was wondering if he was shying away from IVIG or just PEX.

 

We did end up just going for IVIG with good effect although not the immediate benefit I hear others had with PEX -- we had 2 weeks of turning back the pages. I think our CaM Kinase II numbers during exacerbation were similar to yours -- although it sounds like yours stay chronically high.

 

If you've already resolved on PEX, sounds like a road trip :-) Seems amazing there's no one closer who's studying this...

 

Buster

[peglem]

I know you are going PEX to knock down the antibodies (and hopefully see a more immediate improvement than IVIG). Did your daughter have any improvement on pred?

Yes, she even started verbalizing a bit on prednisone. She only had the 5 days, but even her teacher noticed how much better she was. On the 5th day, though, she started getting sick with fever and cough.

 

 

I mostly wanted to let you know that we're thinking about you and wishing there was some way to help. Hugs first and then a couple questions ...

 

Are you thinking of doing PEX and then IVIG? or just PEX (if you can get it)?

 

The tricky part for your pediatrician/immunologist is if they did find PID then they could order the IVIG for that. It's the ordering of PEX (which isn't recommended for PID) that's probably problematic. They sort of have to find an autoimmune disorder (like PANDAS) to get PEX covered. It's probably worth talking with mom_md about how her's was done.

 

What I was wondering is whether your ped/immunologist was willing to do IVIG rather than PEX (I know in your case getting both is probably better) but was wondering if he was shying away from IVIG or just PEX.

 

We did end up just going for IVIG with good effect although not the immediate benefit I hear others had with PEX -- we had 2 weeks of turning back the pages. I think our CaM Kinase II numbers during exacerbation were similar to yours -- although it sounds like yours stay chronically high.

 

If you've already resolved on PEX, sounds like a road trip :-) Seems amazing there's no one closer who's studying this...

 

Buster

I don't think the immunologist is going to try to look for immune deficiency. We still have a follow up appt w/ him on Dec. 1st and maybe he'll surprise me. His response to the labs he ran (did not look at complements, or IgG subclasses) was that the pneumoccocal titers are low again, and he wants us to do the vax AGAIN so he can measure immune response...this is the same thing he did 2 years ago...sounds like a brush off to me.

It was the rheumy that decided no PEX today, but he and the immuno have conferred....conspiracy?

I think the fact that my daughter's case is so severe works against us...they really don't think she can be helped enough to justify the treatment (unspoken, but I've met enough of those sorts of docs to read between their lines). And, of course they don't have to worry about what happens to her when I die!