My photo
wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne


The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Monday, February 15, 2010

MLWHAT?

So Ridge has MLT.  Multifocal Lymphangioendotheliomatosis with thrombocytopenia.  Yes. I spelled it right.

WHAT is it?  I don't know if I've gone into what Ridge has on the blog or not, but some dear students stopped by to drop off these the other day for the boys:
 
 and one of the students mentioned they knew Ridge HAD MLT but they didn't really know WHAT MLT was/is.  So here's my totally NON expert lesson on MLT.
MLT 101, so to speak.

Okay, so most every kid who has MLT has lesions on the skin that look like hemangiomas (you know, the red birthmarks lots of kids are born with that usually go away with age).  The way these types of "lesions" come about is because these kids have blood vessels that run too close to the surface of the skin.  I'm not sure why that makes a hemangioma/lesion/whatever.  ANYWAY, with MLT, not only do the blood vessels run too close to the surface of the skin, causing skin lesions that look sometimes like freckles, sometimes like hemangiomas, (Ridge has zero skin lesions, save for the possibility of MAYBE one on his eyelid but it is only there sometimes), but the blood vessels in their GI tract ALSO run too close to the surface.  This causes similar lesions within the GI tract/stomach.  These lesions proliferate, or multiply.  They are the entire thickness of the wall of the stomach/intestine/etc. often.  They bleed.  Platelets, which normally stop bleeding, become trapped in the blood vessels, bc the disease is a platelet trapping disease.  As the platelets become trapped in the blood vessels, the vessels grow, causing the lesions to bleed worse.  This is why Ridge almost never gets platelet transfusions, even if his platelets are low.  Normal platelets are 150K.  Ridge doesn't get platelets unless he is below 10K.  Many MLT kids have platelets in the 30K range, normally.  Ridge was at 36K in July when we were admitted to the hospital.  He has settled in from around 70K-100K, but that is a result, we think, of the steroids he is on.  So we are watching as we cut his steroids, to see where he settles. I figure it will be in the 30 or 40K range.  Maybe better.  This low platelet part of the disease could inhibit him later in life-- contact sports will probably not be where he excels, bc our doctors don't think he will be playing any contact sports.  If he always has low platelets, head injuries will be of extreme concern-- even moreso than with a "normal" child.  I am just repeating doctor info, so any of this could change, maybe it already has.  This is a disease that has no cure, and there is debate whether medicine even helps at all. I think it does, but I guess there is no way to know FOR SURE.  Data supports that children outgrow the worst part of the disease by age 1, but I know that is not true for every child with MLT.  I can only pray it is true for mine.  By age 3 or 4, it is believed that, while the lesions will still be present, the bleeding will no longer be there, the meds won't be needed (if they are even still needed up to that point), and transfusions won't be necessary.  However, this isn't ALWAYS true.  There is no set in stone with the disease.  That is why fiddling with meds is so scary to me.  He's doing so well right now, so changing things is necessary,  but scary.  A lot of times, MLT kids need parts of their stomach or intestines or whatever removed to help control the bleeding-- wherever the most lesions are, that area is removed.  Ridge has not needed that yet.  Hopefully he won't, but I don't know what is in our future.  I hope no more of this.  But I don't know that.  

I have so many things i haven't typed but between the three men in my living room, it has been nearly impossible to type this! :)  So if you have any questions, leave me a comment.  Or email me at seesawridgeproductions@yahoo.com

Soon I will post photos and/or video of checking Ridge's blood and of changing his medication daily (his IV med).

Have a good evening!

2 comments:

wrensmommy said...

thank you for posting this.. my google searches had not really turned up any valuable information. it's so encouraging that he can outgrow the worst of it! i never realized that.

i've been following the blog for months... we heard about you guys from the prayer list in hawaii.. it's so neat to see God's love and tenderness and the work he's been doing in your lives.

Corie said...

I agree with wrensmommy. Thanks so much for the post.

There was an error in this gadget