Plasmapheresis

[cab40]

thank you!

Edited March 23, 2012 by cab40

[dcmom]

Both of my daughters had pex for pandas. Neither had ivig. We treated both, initially successfully with abx and steroids. When the abx and steroids a subsequent time failed to produce sustainable and full remission, they had pex. Swedo did 5 pex treatments over 10 days in the study, my girls had 3 treatments over 4 days. Both girls were classic pandas; no neuro or psych issues until ages 5 for youngest, and 9 for the oldest. Sudden onset of ocd with strep. Subsequent exacerbations with other illnesses. Both girls had high anti neurals on Cunningham's test. Neither has immune deficiency or any other test result of consequence. Both are physically healthy and do not get sick more than 1-2x per year.

 

Both were covered by insurance, after many appeals and assistance from my dh's HR dept. We actually prepaid for one, and the cost was $26k. Our insurance company's negotiated rate was $5k- that is all they had to pay. (we were reimbursed our $26k minus the percentage we were responsible for).

 

Both kids had immediate and long lasting results. PEX brought them both back to baseline within a month of the procedure- priceless! However, it is not a cure (for us). They have had subsequent episodes- we have handled those with steroids thus far. I would not hesitate for a minute to do pex again if needed. Also, it seems with the steroids it takes them quite a bit long, if they do at all, to get back to baseline. I think the pex is invaluable for this alone.

 

Considering the suffering they had prior to the procedure, and how thorough it was- the procedure itself was quite benign. I am not saying it wasn't a stressful week- it was- but it was okay, I did it with the second child, and I will do it again (and again) if needed.

 

The hardest part of the whole thing is getting a doc and hospital to do the procedure. Do you see Dr L?

 

Let me know if I can answer any other questions.

[melanie]

We just finished PEX. We did 5 exchanges in NYU. We were in the hospital so I'm sure it was expensive. I believe my insurance covered it. Haven't received any news other wise. I don't see anything great. Dr said could take upbto 4 weeks. So I'm still hopeful. We have been doing IVIG for 2 years every 21 days. Let us know.

 

Melanie

[beeskneesmommy]

Dr. Elia at CHOP does Plasmapheresis. It appears to be more invasive, requiring more sessions of treatment. However, aside from priming the machine, artificial product is used whereas blood product is used in IVig. Our son was not a candidate at age 4 because his "exit" vein was too small. He would have required a port for several weeks, increasing the risk of infection. So far we have treated him pretty successfully with abx, but if we need to consider it in the future, we will investigate both options and see if he is now a candidate for plasmapheresis.

[peglem]

I believe you will have a very difficult time getting anyone in Phoenix to consider PEX- harder to get than IVIG.

[cab40]

thank you!

Edited March 23, 2012 by cab40

[LNN]

Chris,

I would remove your phone number - if you google "plasmapheresis" it is very likely your post will come up in a public search and I don't think you meant for your cell # to be broadcast across the entire internet. Just log in, go to your post and hit "edit" to remove it.

 

I'm so sorry for your dilemma. If money were no object, I would tell you that pex is helpful. But if it is going to drain your last penny, I would not recommend it. IMO, it is not a "cure" and while beneficial, isn't worth spending your last dime on. Cigna did cover our pex but there was still cost - travel, hotel, meals, deductible...costs to see the doctor who ordered it. We were still out of pocket about $2K after we met our deductible.

 

A few months ago, Fxcfer was beside herself when she couldn't get pex for her son. She felt it was his last best shot. When that door closed, she went on to discover a much simpler solution that is giving her great results so far.

 

I'm not knocking pex. I was glad we did it. But in hindsight, it wasn't "the" solution and I now think simpler, less invasive options could actually be a better option for some kids. It's only my own personal opinion, but given your situation and location, I would contact Dr Weil's Center for Integrative Medicine http://integrativemedicine.arizona.edu/ They are trained to look at the whole body and I think this is the sort of approach that can help sick kids who've been dismissed by conventional medicine.

 

I hope you find help soon. Try not to get discouraged. I think there are affordable solutions that can help your kids.

[dcmom]

Chris-

 

Has your child ever had IVIG?

Was your child's symptom onset correlated with a strep infection?

 

My kids had sudden onset OCD, after years of a neurotypical childhood, coinciding with a strep infection. We were pretty clear they were pandas. PEX helped us dramatically, it is hard to even explain. But- it is not a cure. We were not in your financial situation. We have had issues since, and have continued to need financial resources.

 

So- I am somewhat in line with LLM in thinking there are things you should be trying that are less expensive, prior to pex. It is not that easy to get pex. You would have to travel to see (I am assuming you are thinking of Dr L) Dr L first, she will not want to go immediately to pex, but sensibly try some first line treatments. You will have to probably travel to DC twice, and then a third time for pex. The hospital will require you to pay up front if insurance isn't paying. For us it was $26k, and that included everything. We already had the procedure done on our first daughter, and it worked miracles, so we were somewhat confident it worked. There are some families on here for who pex did not work so well, who went on to find they were either dealing with much more than pandas or with something other than pandas. After pex follow up treatment of possibly therapy, and antibiotics will be needed- and there is a huge possibiltiy of a relapse.

 

I guess my advice for you is to calm down and slow down. If you are relatively sure this is pandas (btw the significance of failing pneumo titers without revaxing is really an unknown at this point)- then I would do the following: get him on a month of antibiotics- different from what you have tried in the past, maybe a combo of bactrim and amox? After a month- consider steroids. Have you done them before? We have found that high dose IV steroids work about 75% as well as pex for us. The results come more slowly- but steroids are easier to get, cheaper, etc. I would wait a month after that. Then if needed, I would pursue IVIG. I IVIG would cost around $10k.

 

If it is ocd you are dealing with, I would also get to USF for ERP therapy. And I would consider trying a low dose of an SSRI to see if you can get some relief.

 

I am not really sure of your childs history. This is so tough. My girls did have great luck with pex, as many others have, but there are some kids still here who it was not the magic bullet for.

 

Hang in there

[cab40]

thank you!

Edited March 23, 2012 by cab40

[cab40]

thank you!

Edited March 23, 2012 by cab40

[cab40]

thank you!

Edited March 23, 2012 by cab40

[dcmom]

C- If there is a possibility the strep is not cleared- I would try clindamycin. It is used for carriers, and I think several here have had luck of it clearing resistant strep.

 

If you think there are a lot of immune issues, why not IVIG?

 

I hope your new doc helps....

[Gingy]

DCMOM -- I am sorry to hear your children are still suffering. I am a PNP and have worked with a lot of PANS/PANDAS patients. The Cunningham Panel tests for 4 anti-neural antibodies and the Cam Kinase II. If the Cam Kinase II is elevated it means the autoimmune encephalitis was triggered by infection and the infection is still active. I am looking to find where it says in the literature to treat with antibiotics before during and after PEX (having a little trouble finding the source). If there is a high Cam Kinas II indicating an active infection, It is my impression that Dr. Cunningham believes you still need to continue to treat the infection before during and after PEX to prevent a relapse. I am unclear if Dr. Swedo agrees with this, but if your children are having relapses it might be something to look into. Hope this helps!