Is Plasmapheresis a cure?

[FallingApart]

Hello,

 

For those who have done it or those who know a lot about it, is Plasmapheresis a cure? Our DD has done IVIG twice. At 34 days past the first IVIG she relapsed. Today is 34 days past the second IVIG and she is relapsing again. I am going in for a consult with the ped in a few hours. I spoke with the ped very briefly this morning and our ped spoke with Dr. Latimer. It appears Latimer is recommending Plasmapheresis for DD. I think I am ok with this route because I really don't want to be doing IVIG monthly. I don't have any details yet because I haven't met with the ped yet to hear what she has to say. But for those who have done it can you tell me your thoughts?

 

Also, is there anyone on this board who has done IVIG and then went the Plasmapheresis route? Can you tell me about that? I would love to hear anything you have before I go to meet with our ped. She mentioned that we might be going to Georgetown this week. Of ocurse I will update this after we meet. Thanks so much!

[nevergiveup]

Falling apart I cannot remember how old your daughter is? Or what her Cam Kinase is? My daughter also had IVIG and hasn't actually relapsed but her Cam Kinase is increasing again post 5 months IVIG. My daughter says IVIG really helped her and she wants another and we are currently trying to figure out what to do also. Although she says IVIG helped her "turning back of the pages " were concerning. Did IVIG produce sysmptom remission for a while???

 

 

 

Hello,

 

For those who have done it or those who know a lot about it, is Plasmapheresis a cure? Our DD has done IVIG twice. At 34 days past the first IVIG she relapsed. Today is 34 days past the second IVIG and she is relapsing again. I am going in for a consult with the ped in a few hours. I spoke with the ped very briefly this morning and our ped spoke with Dr. Latimer. It appears Latimer is recommending Plasmapheresis for DD. I think I am ok with this route because I really don't want to be doing IVIG monthly. I don't have any details yet because I haven't met with the ped yet to hear what she has to say. But for those who have done it can you tell me your thoughts?

 

Also, is there anyone on this board who has done IVIG and then went the Plasmapheresis route? Can you tell me about that? I would love to hear anything you have before I go to meet with our ped. She mentioned that we might be going to Georgetown this week. Of ocurse I will update this after we meet. Thanks so much!

[FallingApart]

Hi there,

 

My DD is 3 years old. The IVIG was a miracle for us. Both IVIGs were 2 day doses and each time DD showed signs of improvement after the end of the first dose - so only half way through. She definitely does great on OVIG, it just seems her effects don't last.

We haven't yet gotten her CamKinase numbers because we ran out of blood. We didn't know about the test the first time and then ran out of blood the second time. We will certainly get it this time!!!

[KeithandElizabeth]

Fallingapart:

 

How are your daughters T and B cells? How about her IGG levels? Have you emailed Dr. K? He definitely responds to emails. It is just so amazing that she is so dramatically improved so very quickly from IVIG and then drops so quickly. It seems that her body just "sucks it right up." I wonder if she is in desperate need of it and you may need to do it monthly. Does Dr. Latimer feel that PEX will only be needed one time and then no more IVIG's?

 

Elizabeth

[nevergiveup]

She is so young. At three years old what kind of symptoms does she have? Get the Cam Kinase and if she is very high go take them out. I would then monitor her immune markers for any immune deficiency and maybe consider IVIG at lower doses to fix her immune system if necessary which may prevent relapses. If her cam kinase is low, maybe wait it out, my daughter also had trouble 40 days post. It resolved within 3 weeks. And she did pretty well then 4 month post. However now she is having some intrusive thoughts and her Cam Kinase is going up again. Anyway just an opinion from a mom, not a doctor. Get her blood work in to Kathy Alvarez ASAP she is running another group on Wednesday, if you mail in Monday you may make the cut. Otherwise it may take a couple more weeks.

 

 

 

 

quote name='FallingApart' date='Oct 10 2009, 12:15 PM' post='40629']

Hi there,

 

My DD is 3 years old. The IVIG was a miracle for us. Both IVIGs were 2 day doses and each time DD showed signs of improvement after the end of the first dose - so only half way through. She definitely does great on OVIG, it just seems her effects don't last.

We haven't yet gotten her CamKinase numbers because we ran out of blood. We didn't know about the test the first time and then ran out of blood the second time. We will certainly get it this time!!!

[bmom]

Do you guys pay out of pocket and have the Cunningham test run frequently? Just curious. My son is having some slips lately and I was thinking of trying to set up a phone consult with Dr. Latimer to discuss PEX vs. IVIG. Anyone have info. on her thoughts on PEX for children that present PANDAS with mainly tics?