Post IVIG recovery path

[billn]

There is a foggy suggestion that IVIG for pandas takes time to work. I am guessing there is some data available which can be used to plan recovery after IVIG therapy. Someone working with this, such as the people doing the Yale IVIG trials, probably have compiled this information which would be useful to me advocating for my daughter with physians who lack expertise in this and well meaning bureaucrats.

 

I imagine a process overlap for the healing:

- Reduction of antibodies production.

- Die off of current antibodies doing damage (45 day half life?).

- Healing of lesions and inflammation in the brain (1-2 year?).

- Re-regulation of dopamine.

- Unlearning of bad OCD habits.

 

These processes occur at various rates depending on the person. There ought to be some slides per table summarizing current understanding for this process.

Edited September 2, 2015 by billn

[dcmom]

billn

 

My kids haven't had IVIG- so cannot comment to that specifically. I have heard improvement starts at 4-6 weeks post IVIG, and continual improvement can be seen for 6 mos to a year.

 

I will share our plasma pheresis timeline- for both of my kids (three times between the two of them) improvement started immediately, and both were almost 100% improved at 1 month's time.

So they really did not need 1-2 years of healing of inflammation, or time to unlearn bad ocd habits. It was literally almost like magic. They almost couldn't remember all the ocd things they went through and why, after the month.

 

So I would imagine once IVIG kicked in- you should see a fairly quick turnaround.

[dasu]

That would be great information but from what I have read we know little about this process and each child seems to have a different path for reasons not understood. Additionally external factors influence recovery, e.g. infections, allergies, stress.

 

I have read a few claims on antibody half life. This study http://www.ncbi.nlm.nih.gov/pubmed/2424931 (relating to immune deficiency) states that antibody life is a function of IgG levels and further states that

"The serum half-lives of IgG were highly variable, ranging from 22 to 96 days. The mean decreased from 43 days in the first to 33 days in the third and fourth studies...Patients with the highest serum IgG concentrations tended to have the longest half-lives, suggesting that intrinsic IgG production might falsely prolong the calculated half-life of IgG"

[billn]

There indeed seem to be very different ways in which the behaviors of pandas are evolved and devolved. In particular the experience of the flare being produced by contact in play with a child with strep. Rather than months or weeks the ramp up of symptoms is in hours and the ramp down is in a few days.

 

This suggests mechanisms similar to the changes that occur because of fever rather than swelling or lesions being involved.

 

 

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All my comments are general observations meant to draw the bounds of my question, they are not based on a knowledge beyond what one can read in these forums.

Edited September 4, 2015 by billn

[Anderson]

billn,

Dr. K used to say (and may still say, as my information is a couple of years old) that if the IVIG worked, some observable improvement was expected within the first 3 months. The improvement could take two forms: (A) the beginning of a gradual improvement in symptoms, or ( an almost sudden cessation of symptoms. In the case of (A), the time to full or nearly full recovery was not well-defined.

I appreciate your suggestion regarding there being a mechanism similar to fever rather than lesions. The basal ganglia apparently increases in volume with PANDAS. I've seen literature describing the antibodies as "attacking" the basal ganglia and some that say the anitbodies "interfere." Someone may have a good resource,
but I haven't read anything that specified exactly what the interaction of the antibodies was.

 

With Sydenham's chorea, there may be some damage to brain tissue that occurs, and it may linger after the antibodies have passed. But anecdotally, that doesn't seem like that's necessarily the same case for PANDAS. There are instances where a high dose steroid burst greatly alleviated symptoms in a very short (e.g., 48 hour) period, even after years of PANDAS. That doesn't suggest lesions, or at least, suggests they aren't main cause of symptoms.