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Precautions after PEX


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Hi there, Dd9 had PEX this week (3 exchanges over 3 days). For those of you that have had PEX I'm wondering what precautions were recommended afterwards. The pharesis nurse and hemonc dr said dd could return to school. Prescribing dr said she should be home from school for 8 weeks due to risk of exposure to others who are Ill. I'm going on the advice of prescribing dr because I'd rather be safe than sorry. Just curious as to others experience. Thanks!

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Hi NVAMom-- We had pex in early Nov. and the prescribing doctor said the same as the advice from the pheresis nurse and hemonc doctor you spoke with--that our d could go back to school immediately. May I ask who your prescribing doctor was and where did you have it done? Not Georgetown I presume--thanks, and I hope and pray you see some clear positive results soon.

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Hi T.mom, thanks for the reply. It actually was at Georgetown. Curious why you think it wasn't. Dr L was prescribing dr. Did you see results for your dd? If so what and how long before you noticed improvement? Did she return to school immediately? Thanks for your prayers! That is what we need:)

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We did Pex at the end of a summer. DS returned to school on the first day - about 3 wks after the Pex. However, since we live 8 hrs from DC, DS was exposed to the germs of I-95 rest stops and bathrooms the day of his release from the hospital. We were told by the hospital staff as well as Dr L that life could resume to normal immediately - just no physical exertion until the puncture wound from the central line healed. But this was 3 yrs ago - looks like Dr L's thoughts have changed on exposure risk.

 

For us, Pex improvement lasted about 2 months, but his relapse wasn't due to exposure, as we originally thought, but due to a chronic infection he had all along - lyme. So I don't think keeping him home would've made any difference for us. I will say that the tics - which were severe - only came back once in the past 3 years - and that was during a few weeks when we were aggressively killing the cyst form of lyme and he couldn't detox fast enough. So in some aspects, Pex had lasting effects, despite its not being a "cure" for us.

 

Good luck!

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I do not remember being told to keep my kids away from school or out of the community in particular. They do not go to school, however.

PANDAS doc was very insistent on checking all my kids for strep and wanted them all treated with Clndamycin & Rifampin. The PANDAS doc did contact my family doc to try to get them all treated in this way- but I never heard a follow up and I let it go. She did place the PANDAS children on clindamycin & rifampin.

 

We were also told by the doctor that IVIG should be followed one month post pex. When to came to actually scheduling it, we were told by scheduler it would be 6 weeks. When I checked at 5 weeks to confirm - we were not even scheduled. So Now we are 8 weeks out and hopefully getting it this week. That is very disappointing to me.

 

We saw improvement at one week for one daughter. We saw improvement for other daughter at 4-5 weeks and it lasted for about 2 weeks. This has happened twice. She is sliding back somewhat now- but we are still no where near square one.

Best wishes, NVA mom.

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Hi T.mom, thanks for the reply. It actually was at Georgetown. Curious why you think it wasn't. Dr L was prescribing dr. Did you see results for your dd? If so what and how long before you noticed improvement? Did she return to school immediately? Thanks for your prayers! That is what we need:)

 

Hi NVAmom-- I thought it may be some other place as Dr L is the only one I know of prescribing for Georgetown--Did your child have "other" symptoms which would necessitate keeping them home, or low immune response in bloodwork??? We just did pex about 8 weeks ago and it was my understanding we could go right back to school, etc. -- so I am wondering if your situation is somehow different for the doc. to suggest that?

 

Our d has had some low level improvement -- She says her OCD intrusive thoughts have gone away, so that is huge.

 

However, this episode had lapsed into severe anorexic issues (down 30 lbs, etc.) which were not entirely eradicated. Having now been in touch with an eating disorders team, I think the pex may not have been "as effective as possible" due to her brain being in a severely malnourished state. The whole re-feeding issue is critical it seems for recovery from anorexia, and so we wonder if that set her up essentially for not having as effective a response (ie., 100%...) though we DID see a good turn around in the intrusive thoughts--

 

so why do you think it was suggested that you stay home for two months post-pex? any thoughts on that? thanks.

Edited by T.Mom
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Dan went back to school 2days after the 5 exchanges. Dr didn't tell me otherwise.

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Thanks for all the replies. I'm sure there is a specific reason the dr had (and probably told me) but a i get overwhelmed with all the info when we go....especially since both dd and ds are seen back to back on the same day. So, i usually take someone with me (husband or my mom) but last time I went on my own. I plan on keeping her home. Was just curious about others.

 

I hope all of you see improvement soon.

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Hi there, Dd9 had PEX this week (3 exchanges over 3 days). For those of you that have had PEX I'm wondering what precautions were recommended afterwards. The pharesis nurse and hemonc dr said dd could return to school. Prescribing dr said she should be home from school for 8 weeks due to risk of exposure to others who are Ill. I'm going on the advice of prescribing dr because I'd rather be safe than sorry. Just curious as to others experience. Thanks!

 

No precautions other than 48 hours (I think) of staying off his feet, no exercise etc. allowing the leg to heal. Otherwise, right back to school.

 

bill

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