In February, we went to see Ivy’s immunologist.
The best news of the day was that Ivy was approved for more Intragam.
Another six months, before we have to present her case again but the immunologist felt that it really would not be an issue.
Over the course of the last six months, Ivy’s IgM and IgA levels have begun to drop away. Ig M antibodies are usually a first line of defence in fighting off infection and makes people who are deficient prone to pneumonias and other pneumococcal disease.
IgA deficiency is associated with upper respiratory tract infection, lung disease and gut disease, three things we have been struggling with for most of Ivy’s life.
The immunologist’s own words were that Ivy’s immune deficiency was ‘evolving’, so what was initially thought to be a transient immune deficiency, now looks as though it is going to stick around for good (or bad, really).
Known as Common Variable Immune Deficiency (CVID).
We also learnt that the low level of IgA may have something to do with her reactions after the infusions.
More likely though, is the fact that her IgG levels are still low by the end of the twenty eight days.
It’s why we are getting the meltdown week.
Essentially, she is eating through the infused antibodies faster than the her ‘allowance’.
High demand and not enough supply.
So, she starts to feel rundown, rotten, in pain and also becomes susceptable to infection.
The immunologist reasoned that it was why she is having such a bad reaction following the infusion, no matter how much we slow things down.
She comes into the treatment with low levels and gets a huge boost of (other people’s) antibodies, fairly quickly and her body just does not handle it well at all.
For me, it was like a light bulb moment.
The long and the short of all of this information is that Ivy will need the IVIG more frequently, probably every twenty one days, instead of twenty eight
and the meltdown week should be no more.
Also blogging at Three Ring Circus