Does plasmapheresis help - or hurt - a child with PANS, CVID, and Lyme?

[Vbakersimon]

Hi everyone,

 

My 9 year old DS has been treated for the past 2+ years at Stanford Children's Hospital for CVID and PANS, and by another local MD for congenital tick-borne infections (ehrlichia, babesia, and borrelia - aka Lyme). After monthly rounds of IVIG 'maintenance' doses for the past 2+ years to treat CVID and 5+ years of antibiotics to treat the tick infections, he's improved overall but had new symptoms appear that led me to ask Dr Theinemman at Stanford to consider plasmapheresis for my son during our appointment today. Those symptoms include:

- self injurious behavior and aggression towards me (jumping on me and pulling me by my hair when upset/raging)

- severe OCD to the point of being life threatening (obsession with public restrooms and flushing toilets - he'll race across busy streets if he sees a Starbucks where he knows there's an easily accessible bathroom, run into strangers' houses to get into their bathrooms, etc.)

- severely restricted eating (no protein since sometime in late 2015)

 

Dr Theinneman is 'on the fence' about plasmapheresis for him due to some of his underlying infections potentially still being active and causing inflammation. She is going to discuss with Dr. Frankovich and call me in a couple of days with a decision.

 

My questions for you are this:

- if your child has undergone plasmapheresis, did s/he have an active/underlying infection at the time? Did s/he also have CVID?

- what was your child's response to the pheresis? If s/he improved, how long did it take to notice improvement?

- if your child got worse, what symptoms got worse, and did s/he return to baseline after a period of time?

- if your child got worse after the pheresis, did you pursue any other treatment options? What were they? What was the outcome?

 

Lastly, a huge thank you for all of the prior postings on this topic! They have been very helpful :-) And, thanks in advance to those who will (hopefully) respond to this post of mine; my appreciation of the dedicated, exhausted parents and concern for their precious children cannot be adequately expressed in a post

 

[anonymous0121]

Hi, your child sounds exactly like my 16 year old son, I dont know how to PM you, could you PM me if you know how, would love to hear more about your experience with stanford and if you mind sharing what you have tried so far... my son is in very severe condition and we cant find any help for him

 

 

[sf_mom]

I sent you a PM with some local resources and information.

[Rachel]

My son does have lyme or cvid but did have high levels of basal ganglia antibodies. He tried IVIG for a few months but it did not help. We were not seeing any improvement.He started plasma exchange and did it 3 times a week for 3 weeks and saw major improvement. His doctor dropped him down to 2 treaments a week and after 3 weeks all major symptoms came back. We have no idea how long the antibodies had been in his system but his symptoms were quite severe and caused Postural OrthostaticTachycradia Syndrome symptoms to become much worse. His blood pressures were extremely low 61/43 with high dosages of Blood pressure medication to keep them up.

 

Since all the symptoms came back in full force, my son had to do plasma exchange 3 times a week 3 more months and then went down to 2 treatments a week for 4 months, and then to 1 treatment a week for 2 months and then 1 treatment every 2 weeks . He had a port and his treatment plan for PEX lasted a year. The treatment was worth it. Improvements came slowly and started seeing major improvements after 4 months.