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Meltdown revelation (revolution).

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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.

Originally posted at 5 minutes for special needs.

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24 Responses to “Meltdown revelation (revolution).”

  • Blossom (88 comments.):

    poor sweet girl….poor mumma too….
    you know I was thinking just this the other night in bed……………

    3 weekly treatments sounds wonderful!

    more hugs

  • katef (193 comments.):

    ideas.. suggestions… maybe even answers? All has to be good right?
    I’ve emailed off this post to my lovely husband.. he is forever asking me how Ivy is doing and I think the people he works with really like to hear their work is helping someone…

  • Ness @ Drovers Run (15 comments.):

    It’s a lot to be dealing with, but I suppose at least they’re looking into ways of improving her reactions etc. Plus a ‘no meltdown week’ month is a good thing right?

  • Guera (151 comments.):

    I’m glad there’s good news about continuing IVIG and more frequently, but I’m sorry that this is looking like a permanent thing. :( I guess it’s positive that they are making plans and trying to stay on top of things, and it will be good to avoid the meltdown week. ((hugs))

  • hoppytoddle (36 comments.):

    All I can think of, from our perspective of normal, is sheesh. When your “happy” choice or outcome, with a 3 yo, is more needles more frequently, just yuck. I’m happy for you, in that shaking-my-head-at-what-this-really-means way. You can be all evolved & realist & there dealing with it. I’m still over here not happy that this the “good” news.

    Hugs, you Made O’ Granite lady, you.

  • HappyCampers (48 comments.):

    Answers are good….answers are good…hang in there…

  • I’m so happy to hear that there is a way to avoid meltdown week, but saddened that its more frequent infusions and that she will probably need the treatment forever. Hugs

  • jean:

    well, the way you have explained it, it certainly makes sense. I’m glad that she will be getting it more frequently if only to stop the bad week. A week is a very long time when you don’t feel well.

  • Trish (1 comments.):

    I’m sure it’s bittersweet to have the answer to the question of the meltdowns. Glad to hear there’s hope in sight for that issue, despite the bad news about her condition.

  • Marylin (184 comments.):

    I’m glad you’ve figured it out, that will be a relief to know she wont have her bad week any more!

    I cant help but wonder… will her antibody levels continue to drop, and so then she will technically need more of the IVIG as she gets older?

    Poor lil lady. xx

  • Jeanette (275 comments.):

    Hope it works!
    Does the 6 mths only include 6 treatments? If so, are you going to have to apply earlier because of the revised treatment timeline?

  • jeanie (226 comments.):

    When I went in to give my pint on Wednesday, there was a flyer about donations and how it could be used for things like – and it had Intragram – I thought I was so clever as I already knew about it from you!!

    If they give her the dosage with closer regularity, would it help her build her immunity better?

    Hugs to you and all your little ones.

  • Kathleen (26 comments.):

    Tiff – I wish I knew the words to comfort you. I know how hard all of this is on you and Ivy. I wish a miracle could happen for sweet Ivy, and she could live a normal and healthy life like other children. Poor baby, she is so brave — and so are you.

  • Jennifer (5 comments.):

    You and Ivy are in my prayers. I read your post, imagine you there with her as she receives the infusions, and imagine Monkey. I am so sorry that Ivy and you must endure this. The nurse at the hospital today told me about the infusion as we discussed Monkey’s health. I will wait and see if this is the path we are headed down. I think of you often. I see the grace in which you are handling this and know that I can face whatever is coming our way.

    I agree that answers are good. I often think the waiting is the hardest. I am always much better with a plan of attack. I am glad you can avoid the meltdown week, but very sorry she has to go more often.

  • Kat (90 comments.):

    Wow, Tiff! I hope that works to even things out!

  • river:

    This is great that they’re examining Ivy’s case much more closely and coming up with solutions. So much better than last year’s “blow offs”.

  • Veronica (703 comments.):

    Oh god, not having the meltdown week would be lovely for you guys!

  • lceel (355 comments.):

    Permanent? Really? Oh my Ivy.

  • Miss Ash (89 comments.):

    I’m saving all my prayers for you!!! Can’t wait to see how beautifully this works!

  • Hyphen Mama (316 comments.):

    I kept thinking “maybe more frequent infusions?” and then you answered that at the very end. I’m so glad they would do the 21 day infusion… that it could help even things out.

    In the back of my brain I keep thinking that one of the older twins had this same thing and outgrew it? I must be wrong.

  • Childlife (7 comments.):

    Keepin’ my fingers crossed for no more meltdown week!

  • Amy:

    Do the more frequent infusions help out with the initial reactions after the infusions? Like, if her antibodies haven’t completely pissed off altogether, does that mean the infusions wont be as traumatic?
    Gosh I hope this is something that makes it easier for you and Ivy. xx

  • Holly (100 comments.):

    Like Amy, I also wonder if it means the initial reaction to the IVIG will not be as bad each time.

    Although it is a good thing the melt-down week may well be a thing of the past, I know it is at a very high price – more needles, more frequently, and the possibility that the IVIG will not permanently ‘fix’ the whole immune issue thing.

  • Helena Dank:

    ohh I do hope Ivy feels much better at her next infusion!
    what a relief that will be!

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