For those who have done PEX...

[1tiredmama]

I have reason to believe that my ds may actually get a PEX this month! I have had to fight tooth and nail for coverage, and I'm sure we'll only get one shot. IVIG is not covered, so as far as the "big guns" go, this is it. You've probably already heard me describe how devastated ds18 has been by this nearly, life-long illness.

 

I am wondering about keeping him away from the public for a period of time after PEX to keep his immune system calm. I've been given three different answers during each of three appts. Once, I was told two weeks (and maybe homeschool,) then someone else said he could go right back to school, then I was told on another occasion no school for months! I'm really confused! Which is it?

 

I can't see sending him back to school this semester, he is physically barely making it anyway. He is nauseous, losing weight, weak, and exhausted all the time. At the very least, I think his body needs time to heal. I think I'd like to keep him out of all public places for months. I won't know his baseline if I don't give him the opportunity to heal his way to it.

 

This is his senior year. He has missed most of high school due to PANDAS. He really wants to be with the other kids, and I want so much for him to have that, but this is his LIFE we are talking about.

 

Did you keep your child(ren) home for a period of time? If so, how long? And, what keeps their immune system from over-reacting again? Ds will be on Augmentin, but his bloodwork never did tell us anything--maybe strep sets him off, but it could be another offending agent, so the Augmentin does not provide me with peace of mind.

 

Thank you for your thoughts...

[LaurenK]

I wouldn't let him get behind in school. I'd send him back and just use antibiotics 2 or 3 times a week to protect against any further problems.

[beeskneesmommy]

I would keep him home for a few weeks at least. PEX is tough on the system anyway and giving him some time to recover might be a good thing. Happy that you have gotten coverage. You don't by chance have Cigna do you? We have been denied x 2 and we are going into IVig next week out of pocket (ouch).

[PowPow]

we got right back into life.( after a few days) we already homeschool, but we certainly do,not cocoon. I think some people misunderstand pex and how it works. He will not be immunosupressed. Please ask the hem/onc doctors or the plasmapheresis nurse (when you get to three hospital) to explain to you how it does and does not affect the immune system. It will clear alot up for you. I would get him home, let the site heal, and then go back mid week for half day and then get back into life. pex took a month to work for one of my kids, though it took only a week for another.

Edited September 9, 2012 by PowPow

[1tiredmama]

I know that PEX won't strip him of immunity, but what if he goes to school and is exposed to illlness? What is in place, to keep his body from not only attacking those germs, but his brain, too? He will be on Augmentin, but what if myco sets his system off and Augmentin won't cover him?

 

The stakes are so high. PowPow, your suggestion of discussing this with the hospital staff is a good one. I know they can answer all my questions re PEX. Are they also well-versed in PANDAS?

 

Bees, I have CIGNA NALC (federal.) They use Care Allies to determine eligibity for admissions.

Edited September 9, 2012 by 1tiredmama

[PowPow]

they will refer to dr l about pandas. they made it clear that she is the pandas expert.

i know this will not cover everything, but what about taking zithro also? my teen is on zithro 500mg qd and augmentin 1000 xr bid.

ask dr l. this was.usf.recommendations, but dr l went along with it.

[DeterminedMomVA]

1tiredmama -- PM'd you regarding NALC insurance

[1tiredmama]

Thanks, PowPow! Adding Zithro would make me feel a bit better. Dr. L has dd on both Augmentin and Zithro, so I think she'd be fine with that request.

[PowPow]

make sure you get a large enough dose. originally my child was on 250mg QD. USF felt that was too small, but who knows?? I wish there was some kind of flow chart to deal with this. it us all a crap shoot it seems. I feel for you. I am getting ready to take #3 in for a follow up. she is heading downhill fast( again, mostly movements so far). 3 steroid months have helped over the part two years, but now we need to do something else. ivig not covered (cannot afford it), pex coverage ending soon and I am out of ideas. Hoping Dr has some tricks up her sleeve to try something else! thinking of you and hope it all works out!

[dcmom]

I wanted to second what pow pow said about pex. It doesn't make you immunodeficient. It clears the antibodies currently in the system, but if exposed to illness, B cells have a memory- so they immediately make new antibodies- hence, no cure.

 

I also sent my kids back to school within a week. They need about two days for the wound to heal, and they are a little tired. I kept mine out as long as they would bear- but my kiddos were eager to get back to school and I just couldn't disappoint them. I am a firm believer of not making them live in a bubble. We KNOW they will get sick, will be exposed- we cannot figure that out- what we (as pandas parents) need to figure out is how to most aggressively and efficiently fix it when this happens.

 

Subsequent illness and exposure will most likely be a problem. But, if pex brings your child to baseline- it will be easy for you to see the start of a flare up, and jump on it.

 

Good luck!!!

 

pow pow- SO sorry to hear about your little one. Maybe Dr L would consider IV steroids (it worked better than oral steroids for us). Ugh. I will shoot you an email soon. Hope YOU and everyone else are well.