Thursday

Wow, what a night! I have no clue what is wrong with her, but Lauren had an awful night. This was the first night we didn't have to get up and go to the infusion center for tests so I was hoping for a good night of rest for Lauren. Instead what she had was a night full of pain, crying and quite a bit of panic on her part. For some reason she had this weird pain/burning all through her chest. She had a lot of trouble describing it to me as it was not something she'd experienced before. I never did figure out what was wrong. She tried laying on both sides, sitting up, standing up...well, we tried everything. I still don't really have a good grasp on what the pain felt like because she couldn't describe it and was too upset to really try. Ugh. It was NOT fun.

She finally fell asleep around four this morning and has slept well (I have been up watching her like a hawk). My guess is that the dexamethosone that they have her on for tomorrow's stim test is causing this pain. If that is the case it is going to be a very long day and night. She has to continue taking the dex all day today and through the night. Gosh, if made her that sick after the first two doses I am afraid of what seven will do.

Anyway, back to the actual update. We did meet with Dr. Ludlam last night. We didn't leave his office until after six. I can't say he was the friendliest or most encouraging man in the world, but he seems to really know his stuff and that is all that matters. He said we are assuming this is Cushing's Disease and will continue testing until we prove it (which is the only way to get clearance for surgery). He didn't have any of her test results back yet from this week and said he'd call in two weeks after everything was in so he would have the 'big picture' before he talked to us. We were given a kit of home testing stuff (poor Dr. Finley is going to be a busy man) and he told us to expect to be testing a lot because that's how things went with diagnosing cyclic Cushings. The trick is to figure out your cycle. We will be charting every symptom she has while we test. Then we get her 'highs' back, we go back and look at her symptoms. From that point on we try just testing when she has the same symptoms again. This will ensure more 'highs' and makes things easier with the insurance company.

Okay, now for the rest of my news. Remember when I said Dr. Ludlam didn't have any results back from the lab yet? Well I do! I went down to medical records and asked the nice man that works there to pull up anything the lab had entered into the computer and he printed what they've finished so far off for me. Yay! (Shhhh. Don't tell Dr. Ludlam. I don't want to make him angry. I just want to know what's wrong with my baby and two weeks is a looonnnnggg time to a worried mom). Really the only thing back from the round the clock draws is the Cortisol levels...well, some of them. Here is where I will get a tad technical and do a terrible job of explaining things:

Cortisol is high during the day and non-existent at night for most people. It should be <1 at the 12:30 a.m. and midnight draws. Dr. Ludlam considers anything over 1 to be high and anything over 5 to be highly suggestive of Cushings. Lauren had FOUR that were over five in just two nights of late night draws. Her really low numbers showed up during the daytime. This is also suggestive of Cushings because people with this disease have diurnal rhythms that are out of whack (out of whack is a medical term...let me know if you need translation).

Also her prolactin level was very high. This is the hormone that tells your boobs that it is time to become milk factories when you have a baby. This should not be high for Lauren. She isn't expecting a baby and plans to be a vet, not a factory worker. The cause of high prolactin is almost always a pituitary tumor. (Lauren doesn't have milk production yet, but she complains of extremely itchy boobs ALL the time).

Everything I wrote above was just my motherly take on things. I am not a doctor and I have no idea how Dr. Ludlam will interpret those results. Also if you are reading this because of a google search on Cushings or something...seriously, I am NOT an expert or a doctor, just a worried mom that's done a lot of research. So please remember that only your doctor can explain this stuff to you properly.

End disclaimer.

Anywho- today is Lauren's MRI and CT scan. I am hoping that if the tumor really is back that it shows it's ugly mug as plain as the circles under my sleepless eyes (that's really plain folks).

I think that's all for now. I need to get back to staring at my kid.

Hugs and love to you all!