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Back from plasapheresis! Results and Questions


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My son had plasmapheresis this past week at Georgetown. It was a fairly easy and only slightly painful process. His worst PANDAS symptom before treatment was involuntary vomiting associated with eating disorder. After the second day of treatment he stopped vomiting. It has been three days since second treatment and only one small vomiting episode. Crossing fingers that it will continue to stay good. His other PANDAS symptoms were not to bad before treatment so I cant tell if they are better yet.

 

I do want to see if anyone has thoughts on some of his blood work before and after treatment? They drew blood before treatment began, after first and ater second day but they did not draw after third.

 

16 year old male

 

 

 

Before treatment,....... after first day,...... after second day..............., ref range.............,blood draws from Dec 2011,

Eosinophil....6.7,...........4.6 ................. ..4.2...............................0-4%................ 8.5

 

MPV.........7.6............7.7 ................... 8.0...............................9.6-11.7 .................. 9.2

 

alk phos ......206..........not tested................... 73..............................38-126................307

 

AST ..........27........... not tested..................14 ............................3-34 ...................30

 

ALT..........14 ................. nt .................... 8 ...........................15-41 ................. 7

 

 

anybody have any thoughts on why these changed for the better with plasmapheresis?

 

Thanks

Melissa

Edited by missjo
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so glad to hear you have already seen improvement! I hope it keeps up. I cannot comment on the lab work, sorry.

 

we saw great improvement after one week post plasmapheresis for one child and about 4-5 weeks after for another child.

 

great, great news, missjo!

just remember : watch trending week by week not day by day (some of the most sanity-retaining PANDAS advice I have been given; courtesy of T.mom)- do not get discouraged if things slip a little...

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Glad all went well Missjo--and I hope you see some solid turn around now in the next weeks and months. We were in for pex for anorexia OCD issues too, and it is very scary. We saw OCD improvement (the leaving of intrusive thoughts) within the first month or so after pex...I do think it is week to week progress we should all be watching for, not day to day. The brain takes time to heal. May your son be well and healthy again and keep improving. (By the way, we found a AN psych that is quite effective--in helping, and willing to work with PANS issues.) PM me if you want her name.

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Hi. Where did they put the port. My son is 17. We had PEX in nov. 5 days. How many days did u have.?

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Hi. Where did they put the port. My son is 17. We had PEX in nov. 5 days. How many days did u have.?

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  • 5 weeks later...

I'm happy to read these comments. My 19 year old daughter finished Pex just 1 week ago. She had 5 treatments every other day. She has mainly large upper body twitches. No ocd. We haven't seen any real improvement yet. I was hoping for something right way but i guess I shouldn't get discouraged. The port was in her leg by the way. That seems to be healing nicely.

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Sorry for the delay in answering questions. His catheter was in his groin. We came home from Georgetown with my son doing well he was not throwing up as much. Unfortunately one of our younger kids had had strep before we left for Georgetown and I assumed he would be cleared when we returned home. WRONG! We tried to keep the PANDAS kid away from the strep kid but keeping him from being exposed was impossible. Camden(the PANDAS)kid did not get strep(he is on prophylactic antibiotics) but of course the exposure was there. He started throwing up again almost immediately and continues to throw up. The little strep guy would take antibiotics for 10 days look like he was rid of it and on day three after antibiotics were done he would wake up with fever and sore throat. This started middle of February and continued with 13 day cycles until last week when we had his tonsils and adenoids removed. We are praying this has gotten rid of the strep. BUTTTTTTTTT last Friday I came done with strep. Our 21 YO daughter who has PANDAS is scheduled for T&A next week.

 

I am not sure what the next step is going to be for Camden we will meet with Doc soon to look at treatment options but I feel he needs to start NG feeds again

as he is loosing more weight. He is down about 20 lbs from November. He has gone from 50 percentile height and weight to 50% height and 19% weight. It is scary and frustrating. I feel we are working so hard and making no progress.

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