How Long Until Positive Signs Following Plasmapheresis?

[Tenacity]

A week after plasmapheresis, still waiting for some clear sign of beginning improvement in my very sick 11-year-old son. Any ideas as to just how long it can take for such a first unmistakable sign to appear?...

 

Tenacity

[tpotter]

Each child is different. My boys showed and felt differently almost immediately (within 1 -2 days,) and they do present differently.

[PhillyPA]

What did Dr. Latimer say? Did she give you any insight, from her experience, how long it would take to see signs of improvement?

[Tenacity]

What did Dr. Latimer say? Did she give you any insight, from her experience, how long it would take to see signs of improvement?

 

 

She said, "weeks," but we never really got to discuss how many weeks it might take at the outside, or what the first signs might look like.

[PhillyPA]

hang in there Tenacity! I know it feels like you are watching a plant grow. Painful, slow, and hard to notice the difference. Be patient.

[Tenacity]

hang in there Tenacity! I know it feels like you are watching a plant grow. Painful, slow, and hard to notice the difference. Be patient.

 

 

Thank you, my experienced, smart, understanding friend!

 

I'll be in touch soon!

 

Tenacity

[forjpj]

It was about 3 weeks for my son. Good Luck!!!

[Tenacity]

Each child is different. My boys showed and felt differently almost immediately (within 1 -2 days,) and they do present differently.

 

Thanks, tpotter. Wish we could have such luck!

[Tenacity]

It was about 3 weeks for my son. Good Luck!!!

 

Thanks, forjpj. This is what I need today -- another reminder to patient....

[RNmom]

How is your son today? I just saw this post. My ds14 had PEX last July. The first three weeks after the PEX were very rocky. I was very upset thinking, "this isn't going to work." But, very slowly he began to heal - so slowly that I cannot tell you exactly how long before I "saw" improvement. I do remember that at 4 weeks post PEX the whole family agreed that he was getting better. By 6 weeks post PEX the "family consensus opinion" was that he was 50% better. Now, at 13 weeks post PEX he is reliably 65% better on his worst day - that means even more on those "good days." His doctor is very happy and says that the PEX will continue to work on his brain and heal it for up to 6 months. That is a lot more time for improvement!

 

I'll add this bit just as an FYI: We began to suspect that another infectious process might also be at play in our son's situation when his post PEX progress sort of "slowed" at the 60% to 65% mark. I was following up, after PEX, with a Physician's Assistant (and licensed naturopath) who sees a lot of the PANDAS patients from the practice that is currently treating our son's PANDAS. I went to her to deal with the "yeast issue" as he would be on long term antibiotics. Thanks to all the hard work of many parents on this forum I also decided to look into the Lyme issue... I am so glad that we had him tested because it turns out that he has Lyme and Bartonella. In treating these infections his post PEX progress is starting to "speed up" again! I am very hopeful about his prognosis. I have not posted about it yet on this forum because I want to be really sure this is happening. If treating both PANDAS and Lyme in combination works I will post the whole story - for now I just watch, learn, and pray - a lot!

[PhillyPA]

RNMom I am so happy for you that you are on the right track! It seems as if your prayers are being answered!

 

Tenacity - I would highly, highly, highly doubt your son has Lyme. No disrespect, RNMOM, I know Tenacity's case. If your son has Lyme, I, personally, would spend the $3500.00 to see Ann Corson and get my own son tested for Lyme disease (for the fourth time). I have seen your son's DVD. THAT is not Lyme. It absolutely is NOT Lyme, Bartonella, or any other tick borne illness.

 

After reviewing this, I retract the above statement. I have absolutely no idea if it is Lyme or a tick borne illness. I am not a doctor.

Edited October 28, 2010 by PhillyPA

[Tenacity]

Thanks to RNmom and PhillyPA for your encouragement, information, tips...

 

We had actually scheduled an appointment with Dr. Corson -- then cancelled it, after we got the PANDAS diagnosis.

 

We were expecting when our son went into the hospital for plasmapheresis that there would be a CSF draw to test for various things, including Lyme disease and anti-NMDA-receptor antibodies, but either the doctor decided not to do it at this juncture, or somehow the ball was dropped. When we see the doctor again in a few weeks, we will ask about this and figure out what our next step should be.

 

In the meantime, THANKS for the moral support!

 

Tenacity

[PhillyPA]

So, are you saying that your son has never been tested for Lyme or has not had a lumbar puncture? After all this time, no doctor has ordered these tests?

[philamom]

Tenacity- I recommend using Igenex if you decide to test for lyme...Quest was negative in our case. A year later, we received a positive Igenex WB. Since then, we received positive co-infections thru Quest & Specialty Lab. I wish I would've known this info many months ago. Just throwing this out there.

My prayers are with your recovery!!!