Preparing for Plasmapheresis

[Tenacity]

Plasmapheresis coming up for our son!

 

I am scouring the forum archives, and finding a lot of information. But any stories, ideas, or tips any of you might have would be WELCOME!

 

Tenacity

[PhillyPA]

I know that DCMom has experience with this. I believe both of her daughters had plasmapherisis. You might want to pm her. Good luck!

[Alex]

Hi,

 

My son had Plasma Exchange in August 09. We saw great results but they didn't last long for us, with a relapse coinciding with a bad tooth infection. At the time, his doctor only prescribed a very low dose antibiotic for the strep prophylaxis following the procedure. In hindsight, we wish we'd had his teeth checked prior to the PEX and also would have absolutely used full strength antibiotcs leading up to, during, and for a considerable length of time following PEX. I think that particular doctor now prescribes full strength antibiotics after PEX but not 100% sure. Probably the same doc since few, if any, others do PEX for PANDAS.

 

So, my advice, for what it's worth:

 

 

1. Prior to PEX, do as much as you can to insure your child does not have any ongoing infections such as sinus, tooth, mycoplasma, lyme, strep in tonsils/adenoids.

 

2. Check to see if other family members are strep carriers and treat if they are.

 

3. Full strength antibiotics going into the procedure and for an extended time following.

 

4. Respond to any relapse after PEX quickly and agressively by determing what the cause of the relapse is, increasing or changing the antibiotic and using prednisone to knock down the immune response.

 

4. The worst part of the actual procedure for my son was when the adhesive tape holding the catheter in place was removed once all three rounds of plasma exchange were complete. The physician who removed the tape thought my son was over reacting, but other parents posted the exact same thing, that the tape removal was the worst part. Supposedly they have a cream or something that loosens the adhesive before they remove the tape. Make sure they use it and consider sedation prior to the tape removal. I know it sounds crazy that that was the worst part, but it was.

 

Good luck, Alex

[forjpj]

I pm'd you a little info. Ditto on the tape thing. Lucky we had a very understanding nurse. Of course I was just dying to step in and rip it off all at once, but maybe I'm bad!!

[dcmom]

Tenacity

 

I pm'd you my email....

 

I agree with everything Alex said- we have followed those rules, and me kids are doing well.

 

Alex- I have been thinking about your family- how are things?

[bronxmom2]

Our was done October 09.

Ditto on the tape thing and the catheter removal... insensitive doctor who thought my son was overreacting... but the nurses were AMAZING.

It was also hard (for me) to be in the pediatric ICU and see some very sick little ones. My son is pretty sensitive and I didn't let him out of the room for that reason.

One someone's good advice I bought my son roomy boxers to wear during the three days.

good luck--

[Tenacity]

THANKS TO ALL OF YOU!!!

 

What a big help you are! I will watch teeth, tape, and antibiotics like a hawk!

 

I've begun to explain to my son what to expect and to be ready for. If there's one more problem a PANDAS kid DOES NOT NEED on top of everything else, it's to feel ambushed!

 

THANK YOU!!!

 

Tenacity

[NancyD]

Make sure your son is VERY calm during the consult with the outpatient hematology/oncology clinic the day before he is admitted!! You don't want to have to go through what we did in August. Best of luck!

Edited September 26, 2010 by NancyD

[Tenacity]

Make sure your son is VERY calm during the consult with the outpatient hematology/oncology clinic the day before he is admitted!! You don't want to have to go through what we did in August. Best of luck!

 

 

Thanks, Nancy.

 

I read your description of what happened at your pre-plasmapheresis consultation. Appalling.

 

I'm preparing my son the best I can ... and will have my dukes up....

 

Tenacity