Friday, April 4, 2008

Lauren

Some of you have been asking me how Lauren is doing and where things stand. The answer is I don't know really. After we went to Dallas our endo was fairly certain Lauren's tumor was back and her pituitary had gone haywire. I talked to him on the phone yesterday for a long time and he seems to still think that is the case, only the tumor can't be seen on the MRI (yet). It is probably there and just isn't visible yet. He said a very small regrowth could cause major problems with her endocrine system since the pituitary controls all the hormones. So the bottom line is that he needs a lot more tests. We will be starting those next week.

We are also considering taking her to MD Anderson in Houston this summer and letting them sort things out there. I personally think he was right about the Cushings Disease and about the tumor being back, but now we just have to find it and prove it via all these tests.


In case a google search leads someone here that has some insight about Cushings or pituitary issues here is a list of Lauren's symptoms:


spells where she feels very 'shaky' inside

tachycardia (during spells)

high blood pressure (during spells)

bright red cheeks (during spells)

headaches

fatigue

muscle weakness

muscle pain (the least little activity leaves her in pain for days)

bone pain (and early signs of vertebrae degeneration on bone scan)

precocious puberty (started puberty at age five)

weight gain

dark purple stretch marks on stomach (and now starting across her back)

anxiety attacks (having a BIG problem with this right now)

forgetfulness

starting to get hair on her face (this just started)

hair is starting to fall out (she has great hair...this is new too)

frequent dizzy spells

she does have the very round face and the 'buffalo hump' that is described in Cushing's patients too (only her Cortisol level was in the normal range on the last urine test so she either doesn't have it or it's cyclic...we think it's cyclic)

At times she has really dark, dark rusty looking areas on her knees and elbows. Those are gone right now.


I am sure there is more, but you get the general idea about what is going on here. As things develop I will let you guys know what's up. As always, thanks for the prayers!


And just because I am proud of her and like showing her off, here are a few of Lauren's recent photographs:








6 comments:

Anonymous said...

Wow. I love each of the photos and cannot pick a favorite. How old is Lauren?? She has a very mature eye and a real gift.

A couple of those symptoms alone would be enough, but to have all of them?! Poor kid. I will keep you all in my prayers...

Jax said...

As always her pictures are awesome! Lauren is such a good girl, I hate she is experiencing all those awful symptoms. Now I will have to go googling.....

Christy said...

half-past kissin' time- Thanks for the sweet comments about her pictures. I showed them to her and she was so tickled. Lauren is 13 and thanks so much for the prayers.

Jax- You are right, she is a very good girl. I've googled til I am blue in the fingers. Let me know if you figure anything out.

Jackie said...

THE CHURCH!! Isn't that the abandoned Catholic Church at Bomarton? All pictures are beautiful...

You and yours are in my prayers...

joyfuljourney said...

Oh, we love that church in Bomarton! Did you go inside? Neat place.

I love the flowers/fence pic the best!

No child deserves to experience these symptoms. But Lauren is so sweet & wonderful it just seems all the more unfair!

You are right, HPKT, Lauren is quite mature and very gifted with an adorable twinkle in her eye! A very special person who handles all this with grace.

Anonymous said...

You all handle your crises with such grace. What an example for the rest of us.

Lauren is an inspiration and a treasure.

Hope you are having some of these photos framed. She has a great eye.