worsening of symptoms after plasmapheresis?

[MOMOFTWINS_2]

Has anyone experienced worsening of OCD and rage symptoms after plasmapheresis? We had to cut our plasma exchange treatment short after my son reacted badly to sedative and pulled his IVs. His symptoms worsened the next week and he is now hospitalized for a change in meds. His OCD symptoms are debilitating - worse than they were pre-plasmapheresis.

[LNN]

We had a worsening, esp. at week 2, then we saw improvements over the next few weeks. The difference was that pre=pheresis, symptoms would ramp up like a bell curve - symptom 1, then add symptoms 2+3+4 then at peak, symptom 4 would go away, then 3, then 2 then 1.

 

Post-pheresis, it wasn't a bell curve. More like fire works. A half day of symptom 3, then quiet, then a flash of symptom, then a burst of symptom 4. It was random flashes, not the predictable pattern we used to know. So we could tell something was different, even tho things were initially worse. Once things started to get better in week 3, they continued to get better.

 

I hope things work out for you and your son. Any chance of trying it again or doing IVIG?

[dcmom]

momoftwins-

 

SO sorry. Is there any way to try the pex, or ivig again?

 

Certainly stress can worsen symptoms. I would imagine the procedure (or the thought of it) completely stressed your son out- and now he is probably depressed that he didn't get through it, and thinking he won't get better. All of this on top of the normal ocd and pandas issues.

 

How many treatments did he have?

[Fixit]

I'm sorry...but again....he didn't even finish the first round because he pulled out ivs???

 

are you sure it was a reaction to the sedative????? it could be, just asking....

can you try a different sedative?

 

 

Has anyone experienced worsening of OCD and rage symptoms after plasmapheresis? We had to cut our plasma exchange treatment short after my son reacted badly to sedative and pulled his IVs. His symptoms worsened the next week and he is now hospitalized for a change in meds. His OCD symptoms are debilitating - worse than they were pre-plasmapheresis.

[tpotter]

We had way worse tics (ended up in the ER by ambulance, because he couldn't breathe), for about 2 weeks after. Then, they gradually started easing up, and all symptoms got incredibly better...until now, when they're starting to get worse again. We need to repeat PEX. But, overall, the PEX really did the job. I'm wondering if getting him on IVIG at this point might be an option, since the PEX had to be stopped early? As the doc?

[dcmom]

Tpotter-

 

How long after pex did it take for all symptoms to improve? What happened to cause things to get worse again? How long has it been since your original pex? Have you tried steroids?

 

thanx