Three Little Engines: No more Heparin

Thursday, June 25, 2009

No more Heparin

Sorry for the no photo posts. I'm sure you'd much rather see photos of the boys, than print to read.

I'm allergic to the Heparin. Laughable, really. Anyway, I'm now on Lovenox and I pray I won't be allergic to it too.

The other blood disorder I have is called MTHFR. Believe me, the full name is ridiculous and not worth posting. But if you are interested, here's some info on it. I'd certainly never heard of it before.

http://www.pregnancy-info.net/mthfr.html

http://ghr.nlm.nih.gov/gene=mthfr

1 comment:

The Vegas Veenendaal's said...: My goodness....
I remember Shalise talking about this condition. I had never heard of it until I heard her talking about it. Crazy stuff. I'm glad you have someone that is finally listening to you and hopefully giving you the treatment that you need to be safe and to get this little guy here safely.; June 29, 2009 at 12:21 AM

Okay, here's the thing:

For those who don't know already...

My oldest, Aidan, was diagnosed with a severe form of Epilepsy called Lennox-Gastaut Syndrome that is not treatable by the time he was 5yrs old. Then Jacen, with mild Cerebral Palsy w/seizure disorder, and Damon with Epilepsy. Later, after extensive testing, specialists said we are dealing with an untreatable neuro-degenerative genetic disorder that all three boys have. Genome sequencing results are still pending for mitochondrial forms that all testing and history points directly to. Heartbreakingly, Aidan passed away September 14, 2014.

All 3 have had varying degrees of developmental delays and regressions, but the same symptoms and in the same cycle. They are just at different stages of the disorder. The genome testing will hopefully provide an answer to the specific genetic markers causing all this so we can maybe, just maybe, make them a little more comfortable as they pass away. Jacen and Damon have now been diagnosed with LGS as well. And Jace is on Hospice. This is my journal.