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Damien's Update
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Damien
Crowe |
By Lauri Jean Crowe
Something wondrous and bizarre and promising has happened with Damien. And just in time, because this summer has been very trying for our 6-year-old son.
Among other things, he has endured multiple ER visits for albumin infusions and electrolyte imbalance correction, a two week stay at Mott Children’s Hospital to lose 20 pounds of edema and placement of a port for access to treatments and blood draws.
But please hear this, because sometimes amazing things happen.
There is no FSGS.
After the most recent biopsy, we are told Damien does not have renal biopsy presentation of FSGS. This is not what we expected.
Something wondrous has happened and Damien’s scarring and IgM deposits seem to have vanished. In their place is another challenge, but one with a potential means of control using cytoxan and mycophenolate.
Here is a quote from Damien’s recent discharge summary:
“Damien’s renal biopsy revealed glomerular and mesangial proliferation with very little scarring and no immune complex deposition.”
“No significant glomerular or tubular scarring was noted. There were some tubular changes seen consistent with previous use of calcineurin inhibitors.”
In lay terms, it means we have hope. It may also mean that a mother’s intuition that the calcineurin inhibitors (tacrolimus) had been doing more harm than good and to stop it was in some way correct.
We administered the first dose of cytoxan (for the glomerular and mesangial proliferation) before leaving the hospital. As to the how and why of the change in Damien’s kidney status, we leave that up to the two pathologists reviewing his biopsy and his team of nephrologists and a lot of deep thought on the part of all involved.
We just know that what has occurred with Damien just doesn’t happen, but that it somehow did. We await the next “Damienism,” as his doctor tends to call his medical surprises.
Is it the power of the worldwide prayer chain involving many faiths and belief systems that has evolved over the course five years of dealing with nephrotic syndrome?
Is it the supportive measures of Vitamin E, Omega 3, and Aloe Vera (which the nephrologists have asked us to stop due to the potassium load and laxative effects) or perhaps the oligoantigenic diet which allowed us to discover Damien’s reactivity to dairy and sensitivity to corn and especially high fructose corn syrups? We might never know, but one thing is for certain, as a family we will continue to strive to find new treatments that can complement those being studied. Our belief is that Damien, like each person with nephrotic syndrome or FSGS, is unique and that not all can be helped by the same blanket treatments.
For now, mom is rifling through online documents to try to find a link between Damien’s shift in status and potential treatments and hoping she has made the right decision to stay the course of 6 months of cytoxan/MMF therapy.
She is thinking about the new challenges that emerged with the most recent hospital admission - rectal prolapse, factor X and factor 2 deficiencies in his coagulopathy, plus a strange but common rash with no known causative factor called pityriasis rosea.
She is happily cheering her son on as he tells the rest of the family about his port and how it means now he won’t have to endure over 40 pokes in less than five days ever again (we hope). Mostly though, she is glad to have her son back home where he can hug his brother, and sleep in his own bed among his own comfort objects, free from the beeps and pokes and prods of hospital living. She replays over and over Damien saying that he just wants to be able to play and run again
Our struggle isn’t over yet, but at least we can once again see the beauty within that struggle. There is hope for healing, and the main message we would like to extend to you is to be strong, use your intuitive knowledge of your own body, and don’t be afraid to ask questions or for more data. It just may be the key to the great mystery of your own life and a step to saving it with your kidneys intact and the whole word opening before you. Imagine the thrill your family would have at hearing the words, “There is no sign of FSGS; this is not what we expected.”
So, expected the unexpected, and know that it can be achieved. Do we believe in miracles? We believe that anything can happen, and as we’ve said before, “wishes will always come true if you believe.”
We wish you well…
The LJCrowe Family – Damien, Donovan & Lauri Jean
The Crowe’s may be contacted at http://www.art4change.com
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