Am I crazy? Is it really nothing?

[speakup4kids]

I have posted previously about my daughter who is 12 and has had a headache since Jan. 22, non stop. We were seeing a neuro in Sac then after 2 MRI's 'supposedly' showed that she had a macroadenoma and the neurosurgeon we were referred to said it was just an enlarged pituitary I took her to Stanford. Here is where I get frustrated... apparently they agree. Except they can't explain why she feels the way she does, or why my thin girl is covered with stretch marks. She is getting more every day! All I hear is that her blood tests are fine. Well she isn't...

[horselip]

So glad to hear that you were able to get her into NIH! I know all too well the politics between the places that you mention, as I am dealing with this too since I moved back to Northern CA, ugh.

[rumpled]

Wonderful! Hopefully we will hear a diagnosis and soon treatment plan.

[speakup4kids]

Thank you for all of your support! I got a call from the NIH in Maryland today and they want to see my daughter. We go next month for testing and appts. :)

[rumpled]

I had Cushing's myself. I know of some parents of kids - and I also know the disease can be more subtle (as in not everyone gains weight, nor gains it the same way).

There are several good places to go in CA. For some odd reason - YES - diagnosis can get political (why!?) so you may have to travel. There are also places that are known to be very conservative in their views and diagnostic ways, and other places that will look at more of a whole picture and take care that other testing is done - like I had 10 hour urine testing done and that was spectacular for me as it spotlighted my highs as I was pretty much ONLY high at night, but low during the day, so my 24 hour tests were normal or barely high due to the averaging.

[4betterorworse]

You might try

http://www.massgeneral.org/neuroendocrine/services/treatmentprograms.aspx?id=1260

[speakup4kids]

Thank you for all of your responses. I am almost certain my daughter has Cushings however getting a diagnosis may kill me. Since my last post she has gotten more stretch marks, on her knees, under her armpits, and along the sides of her back. Because she was so thin to start with it was hard to see that she has gained weight but after comparing pictures of her 6 months ago and now it is obvious that her midsection and face are heavier. She is now crouched over where her posture was good before. Her back doesn't have a lump she just looks hunched over all the time. I got her 24 hr UFC back and all they told me was that her Dopamine was 500 and her creatinine was 1.9 which was higher than previously. That means nothing to me. I feel like I'm being cast as the crazy mother and ignored. I am trying to get her into UCSF but unfortunately the dr we saw at Stanford trained there and I'm dealing with a 'don't want to step on toes' issue. Honestly it's ridiculous...

[rumpled]

My stretch marks were caused my Cushing's disease. My tests were all over the place. Time of testing is critical (was it 8am fasting for blood?) and lab handling as well as patient handling of say, urine tests is also a factor - jugs must be kept cold at all times even with preservative. ACTH testing is super fussy. My diagnosis was held up for years (as in a decade +) due to ineptness of labs and docs - even supposed experts.

I would make sure you go for opinions. Read up in the health pages, and ask questions. An enlarged pit often means a lurking tumor - and in a child that can be even more nasty as it can impair growth.

The magic foundation may also be a resource for you.

[horselip]

Hey,
Why not take ur daughter to UCSF for a second opinion? They also have a pituitary program and may have other insights.

You should always go with ur gut feeling.

Horselip

[LivingInHope]

No, you're not crazy, you care about your daughter.  

You might be interested to see other causes of stretch marks here:
http://www.mayoclinic.com/health/stretch-marks/DS01081/DSECTION=causes

And consider whether if cortisol testing is repeatedly fine, whether she might have something else.  

For example, take a look at this on Medhelp in regards to Marfan syndrome:
http://www.medhelp.org/posts/Migraines--Headaches/Marfan-syndrome-whats-it-to-do-with-headaches/show/1233784

And according to medicinenet, many who have Marfan syndrome exhibit skin stretch marks, even with no weight change.  They are also slender.

http://www.medicinenet.com/marfan_syndrome/page2.htm#what_are_the_symptoms_of_marfan_syndrome

And another cause Mayo Clinic lists for stretch marks is Ehlers-Danlos syndrome.  The National Institute of Health indicates headache can be a symptom of it as well:
http://www.ncbi.nlm.nih.gov/pubmed/10595288

So, what you may need to do is keep searching for answers for your daughter and advocating for her.  Keep hunting!

I hope too that since they think your daughter's pituitary is enlarged they plan to follow up with regular dynamically done pituitary MRIs with and without contrast to keep on eye on things there.