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Meltdown Revelation (revolution).
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
Filed under Blog, Conditions and Diseases, Medications and Treatment Options, Tiff by
Comments on Meltdown Revelation (revolution). »
Alicia @ Experiencing Each Moment @ 5:38 pm
That is fascinating and so good to learn sooner rather than later! I can't wait to hear about the disappearance of meltdown week!
Ellen S. @ 10:25 pm
That sounds like one serious load off your mind! How wonderful for all of you.
Tammy and Parker @ 12:26 pm
Tiff,
This is a cut and paste of a comment I received in regards to your post:
Site: 5 Minutes for Special Needs
From: Mark in Cleveland
Email: lev@consultant.com
Phone:
I'm surprised to hear you are on Intragam. It's not FDA approved in the US.
Since you think the IgA may be presenting a problem, have you considered one of the lower IGA products and hope for less side effect.
Gammaguard S/D has less than 2.2 μg/mL of IgA in a 5% solution.
Are you working with the IDF, immune deficiency foundation?
Know that Parker and I are serious Ivy fans.
Michelle @ 1:35 pm
I'm so excited to hear that you may have found the solution to "meltdown week"! Lots of prayers that your next round is meltdown free. Hug the twinners for me
~Michelle
TiffandIvy @ 4:33 pm
Hi Mark,
Thanks for the comment and the questions.
We don't have Gammaguard approved in Australia. We don't have sub Q available either. The National Blood authority only approves two products. One locally made, called Intragam P, where the IgA is negligible anyway and is the product that Ivy receives and Octagam, which, I understand is the only imported IVIG. The reaction is probably more to the fact that Ivy is going in with the low IgG trough and then has a huge spike afterwards.
Ivy's IVIG was not easily approved either. We had to present to the board three times in appeal before she was given a six month trial. Because of high demand and low supply we have to have review every six months. I am a member of the Australian Immune Deficiency Foundation (which is only just finding its feet) and I know that there are many people, who have been receiving IVIG, who are now haviing to trial off it. It's a scary prospect and we are thankful for each cycle ivy can have her medication. It has changed her life.