Peglem?

[dcmom]

Hoping that we haven't heard anything is good news, I am sure you have a lot to process....

[peglem]

Hmmm...not all that much to process. But, good news- no PEX, she thinks that Allie will be too difficult to manage, and will most likely pull out the (geez, I'm tired, can't think of the term) "thingy". She feels my daughter is a rather difficult case because it has been going on so long, and because development has been derailed from the get-go. But, she did give a PANDAS dx and recommended 6 months of monthly IVIG (which we will be able to get at home TG). She also recommended staying on zithromax prophylactically, and said it would be safe to go up from 500mg every other day to 500 mg/daily.

 

She said, while the CamK was rather high, she could not base treatment on that number since they are not sure yet what it means, but with the highly elevated anti-D2, it was clear she had anti-neuronal antibody that should not be there. She wondered why the immunologist would not treat based on her low (she thought very low) IgG. She also said she didn't know what to make of the pneumococcal titers...nobody is sure what those numbers should be. I told her those were drawn for baseline and then rechecked for response to vaccine. She said that made sense. Then quickly moved on.

 

Anyway, we're going to go ahead and see if we can move up our flight and go home before Thursday (like we scheduled, just in case).

[melanie]

Hmmm...not all that much to process. But, good news- no PEX, she thinks that Allie will be too difficult to manage, and will most likely pull out the (geez, I'm tired, can't think of the term) "thingy". She feels my daughter is a rather difficult case because it has been going on so long, and because development has been derailed from the get-go. But, she did give a PANDAS dx and recommended 6 months of monthly IVIG (which we will be able to get at home TG). She also recommended staying on zithromax prophylactically, and said it would be safe to go up from 500mg every other day to 500 mg/daily.

 

She said, while the CamK was rather high, she could not base treatment on that number since they are not sure yet what it means, but with the highly elevated anti-D2, it was clear she had anti-neuronal antibody that should not be there. She wondered why the immunologist would not treat based on her low (she thought very low) IgG. She also said she didn't know what to make of the pneumococcal titers...nobody is sure what those numbers should be. I told her those were drawn for baseline and then rechecked for response to vaccine. She said that made sense. Then quickly moved on.

 

Anyway, we're going to go ahead and see if we can move up our flight and go home before Thursday (like we scheduled, just in case).

 

 

Im glad everything went well Now the healing will begin....

 

Melanie

[thereishope]

It sounds like it went well. I hope the plane ride was okay. Did you get everything in hard copy re the IVIG or is she emailing the doc?

 

Hope the trip home goes well for you.

[peglem]

It sounds like it went well. I hope the plane ride was okay. Did you get everything in hard copy re the IVIG or is she emailing the doc?

 

Hope the trip home goes well for you.

We did not get a hard copy of the report, she did not have time to write it up, but said she would mail one to the pediatrician, one to the immunologist and one to us. The appointment lasted 2 hours. And it seemed little enough time to really go over 15 years of history. She did go though the MRI video and said her brain looks good!

I almost think the trip home may be harder, since we don't know this airport very well. Somebody will have to go scope it out 1st, so we can plan.

[KeithandElizabeth]

Peglem:

 

I am also surprised that your immunologist is not treating your daughter for the low IGG's? Some children are treated for much longer periods of time based on low IGG's. And your insurance should cover it!!!

 

Elizabeth

[FallingApart]

How are you feeling at this point? Happy that you don't have to go through the PEX or deflated that you traveled so far and didn't get to do it? I like that she recommended the 6 mos of IVIG. I hope this will work out for you. Is your ped easy to work with and will be able to help make this happen for you?

 

Good luck with the flights. I also agree that the flight home was harder than the flight there.

[peglem]

Peglem:

 

I am also surprised that your immunologist is not treating your daughter for the low IGG's? Some children are treated for much longer periods of time based on low IGG's. And your insurance should cover it!!!

 

Elizabeth

 

I think its really a case of doctors not wanting to take responsibility. My daughter has so many issues and is so hard to even examine, everyone wants to pass the buck. The immunologist says that if she really had an immune deficiency she would be ill all the time and sick enough to be hospitalized. I guess he felt that the clinical picture didn't match up to the labs.