PEX in PICU

[1tiredmama]

Was there a miscommunication at the doctor's office today, or will my son spend three days in the PICU for PEX? I thought this procedure only takes a few hours.

[Kiera]

Maybe you're confusing pex with ivig. Yes pex requires a hospital stay, usually ICU I believe, with central line and pex treatment either 3 times /wk or daily for 5 days. It is invasive and expensive. IVIG on the other hand is done out-patient, peripheral IV, HD is 1.5g/kg over 2days, usually 5-6hrs/day.

[1tiredmama]

Okay. Thank you, Kiera. So, that brings me to the next question, why in the ICU?

[Kiera]

Well because they're attached to a dialysis like machine that actually does the washing out of the antibodies and need a specialized nurse for that (probably dialysis nurse). The blood comes out of the body, runs through the machine and then back into the body, hence the need for the central line. Also need central line insertion equipment to put in line and this is readily available in the ICUs and frequently done there (I work in ICU, only adult though) Other reasons, probably just to monitor vital signs more closely during the procedure, floor nurses have many more patients and don't have enough time to spend with one patient.

[NVAmom]

Ds and dd were in PICU only for the insertion of the line. Once they woke up they were given thier own room in the pediatric hematology / oncology unit. The PEX took place within the that room. Feel free to PM me if you have more questions. Not sure where you are going. We were at Georgetown.

[1tiredmama]

Thank you, Kiera and NVA Mom. I understand now. Yes, we will be at Georgetown. He will have a tonsillectomy there, too. Can that be done during the PEX stay, or do they need to be separate for recovery purposes?

[Kiera]

I would highly expect different admits for each. Did Dr L want procedures done in any particular order?

[PowPow]

Pex is different depending which doc.

In DC, it is a three day stay in hospital not always ICU, with a central line. Three pex is only a few hours as day, for three days, but you stay in the hospital.

some docs do outpt pex, over a few weeks.

[Kimflow]

I have a question....not sure I want the answer......Does Dr. L do PEX on all her kids after she does IVIG????

 

She said PEX to me today and I just let it wash over me. I still have to face tonsillectomy and then IVIG with my son. TO think PEX yet......well, I was not ready to even think about that today.

[PowPow]

No, I do not think so. In fact, I think only a relative few get to pex. That could be due to insurance, though.

[Kiera]

[i have a question....not sure I want the answer......Does Dr. L do PEX on all her kids after she does IVIG????

 

She said PEX to me today and I just let it wash over me. I still have to face tonsillectomy and then IVIG with my son. TO think PEX yet......well, I was not ready to even think about that today. ] Doesn't make sense to do pex AFTER ivig as you'll only be washing out all the new antibodies you just infused with ivig (and paid so much for!). I have read about getting ivig after pex to give the body back some antibodies to fight with since pex removed them all. Not sure how common this is though. More than likely she mentioned it in relation to insurance cov though. my cigna policy for example will pay for the more expensive pex for pandas but not ivig. We chose ivig and paid OOP and am now appealing to get re-embursed. Another possibility is in case the ivig doesn't work, maybe pex could be tried? I would just call her office to clarify.

[PowPow]

The ivig antibodies only last a few weeks in the system. Pex only removes certain antibodies, so you are not compromised after, your immune system is still functioning. Honestly, pex was so helpful for my kids, compared to ivig, at least in immediate effect, do not be afraid of it.