I spent the morning going over old posts from the last 2 years. Gosh I can't believe how far we have come....And how far we have yet to go.
Tuesday morning we FINALLY meet with the Endocrinologist again regarding Bailey. Back in late 2010, there was a suspicion that Bailey had Cushings Disorder. A clinical observation and medical history taken back then pretty much gave a definitive answer...However the cortisol test was "inconclusive"....Which meant we had to wait a YEAR to test again...So here we are.
It's so easy to just get swept up in all that's going on.
There hasn't been a week, of not having to deal with something medical. Whether it be related to NF of not...It just never seems to end.
Despite all the medial issues...I am so proud of my family. We won't give up...and as ALWAYS...We will keep THRIVING!
Showing posts with label Cushing's Disorder. Show all posts
Showing posts with label Cushing's Disorder. Show all posts
Saturday, February 25, 2012
Monday, July 26, 2010
Doctor Knows Best.....
Last week was filled with many doctors appointments for Bailey.... We asked lots of questions and got lots of answers. An NF team came in to examin Bailey and were quite interested in her case.
Bailey has Neurofibromatosis, and a brain tumor that first appeared to be an Acustic Neuroma or Meningioma....but a further look into this, the doctors aren't so sure.
So what is it? No one can be sure, until it is removed....but now the doctors are thinking of NOT doing a surgery. Instead they may watch the tumor for growth. Now I know these guys have YEARS of experience and probably know what they are talking about, but this just doesn't seem right.
The drs in Spokane were all set to do surgery and get the tumor out of there...while the drs here are using the watch and wait approach. Who is right? And how do we know which direction to go?
So, while Bailey is away at camp, the doctors and I are forming a plan. The first thing we need to do is rule in or out Cushing's. This is necessary because if it IS Cushing's, we can find out if THIS will require surgery--possibly coordinate it with the brain tumor surgery.
Bailey will see Endocrinology next week and have some more tests....But for now, she is having a blast at camp. Living in the moment is where we are at right now.
Thursday, July 15, 2010
Bailey
Bailey and I saw Dr. Weiss in Arvada yesterday and I have to say....I was impressed from the moment I shook her hand. She noticed the bracelet on my arm, and asked about it. I told her it was for Neurofibromatosis Awareness. She was impressed with the fact we are a family who 'THRIVES with NEUROFIBROMATOSIS'.
Our visit consisted of the doctor taking a full history and asking many many questions about what Bailey is experiencing. (The brain tumor, the Cushings disorder, hearing loss, vision history, depression, weight gain) I felt both bad and good.....Bad because we had this huge list of medical issues, and good because this doctor was listening to me! She wasn't rushing me or making feel like I was just one of many.
Bailey had a full physical (head to toe)--and the doctor noted some concerns. First she feels that Bailey may have an estrogen deficiancy. I won't go into detail, as to respect my daughter, but there are definant signs that go along with a hormone imbalance. Next, she agrees with the diagnoses of Cushing's, although this has yet to be officially determined, she has a tenative diagnoses. Another thing... Bailey has experienced significant weight gain.....It is yet to be determined, if this is because of Cushing's or because of the hormone imbalance.
We left feeling really good. The dr. said she would call us back with names and numbers of all the drs we needed to be in contact with, and I was shocked when she actually called lastnight, ready to give me this list.
Another call back this morning and I was spinning with all this information that was being dropped in my lap. A few deep breaths and some notebook paper to organize my thoughts, and I had scheduled the Neurologist, Neurosurgeon and Endocrinologist, all for next week. The NF clinic evern called me, and we will be visiting them in September, after Bailey has healed up some from the surgery.
So after the appnts were set up, I got another call telling me that Bailey's insurance was not "active" yet. So all the appnts that were scheduled would have to be "out of pocket". NOT GOOD NEWS. :(
I spent another few hours, digging and calling so many people, trying to find out how we could make the insurance kick in, by the time we had to go to our appnts. I was tense and frustrated because I was getting no where!
One last call to make, I kept my tone sweet, but inside I was ready to break down. The lady on the other end was patiently listening to everything I had to say, even breaking in with sighs of sympathy.
She told me the same thing the others told me, except that she would make sure to look into it, and call me back........The call came just before closing for them, and she said Bailey should have her medical by tomorrow, and that SHE would call as soon as it was active.
A very up and down day today, that ended with a high!
Next week will prove to be one of our busiest weeks medically, that we have ever had. I am so happy to be on this road-though. Bailey is just going with the flow, and pretty mellow about things. I know she thinks about her brain tumor...and even gets scared about the surgery.....but she is so brave, and knows all that is involved with this.
Thank you all for the prayers and well wishes---it really means a lot to us, to have people thinking of Bailey....we are truly lucky to have so many loving and caring friends.
HUGS
Our visit consisted of the doctor taking a full history and asking many many questions about what Bailey is experiencing. (The brain tumor, the Cushings disorder, hearing loss, vision history, depression, weight gain) I felt both bad and good.....Bad because we had this huge list of medical issues, and good because this doctor was listening to me! She wasn't rushing me or making feel like I was just one of many.
Bailey had a full physical (head to toe)--and the doctor noted some concerns. First she feels that Bailey may have an estrogen deficiancy. I won't go into detail, as to respect my daughter, but there are definant signs that go along with a hormone imbalance. Next, she agrees with the diagnoses of Cushing's, although this has yet to be officially determined, she has a tenative diagnoses. Another thing... Bailey has experienced significant weight gain.....It is yet to be determined, if this is because of Cushing's or because of the hormone imbalance.
We left feeling really good. The dr. said she would call us back with names and numbers of all the drs we needed to be in contact with, and I was shocked when she actually called lastnight, ready to give me this list.
Another call back this morning and I was spinning with all this information that was being dropped in my lap. A few deep breaths and some notebook paper to organize my thoughts, and I had scheduled the Neurologist, Neurosurgeon and Endocrinologist, all for next week. The NF clinic evern called me, and we will be visiting them in September, after Bailey has healed up some from the surgery.
So after the appnts were set up, I got another call telling me that Bailey's insurance was not "active" yet. So all the appnts that were scheduled would have to be "out of pocket". NOT GOOD NEWS. :(
I spent another few hours, digging and calling so many people, trying to find out how we could make the insurance kick in, by the time we had to go to our appnts. I was tense and frustrated because I was getting no where!
One last call to make, I kept my tone sweet, but inside I was ready to break down. The lady on the other end was patiently listening to everything I had to say, even breaking in with sighs of sympathy.
She told me the same thing the others told me, except that she would make sure to look into it, and call me back........The call came just before closing for them, and she said Bailey should have her medical by tomorrow, and that SHE would call as soon as it was active.
A very up and down day today, that ended with a high!
Next week will prove to be one of our busiest weeks medically, that we have ever had. I am so happy to be on this road-though. Bailey is just going with the flow, and pretty mellow about things. I know she thinks about her brain tumor...and even gets scared about the surgery.....but she is so brave, and knows all that is involved with this.
Thank you all for the prayers and well wishes---it really means a lot to us, to have people thinking of Bailey....we are truly lucky to have so many loving and caring friends.
HUGS
Friday, June 18, 2010
More on Cushing's Disorder
I've wondered a long time about what was going on with Bailey.... never in a million years did I think to ask about Cushing's Disorder....but after researching extensively....this diagnoses fits.She's gained a remarkable amount of weight, even though she's active. She has the classic "buffalo hump" (That's a awful way to describe something on a human being), the upper body weight, long/thin legs and arms.
But Cushing's Disorder brings with it far more than physical affects. When we started putting this puzzle together, the pieces fit perfectly.
The exhaustion and the mood swings have been something we just attributed to hormones, or being a "teenager". But now we know that there is something much bigger going on.
Bailey will undergo a very easy test that measures the cortisol levels in her body. When someone has Cushing's, it is typically caused by a tumor or tumors on the pituitary gland or adrenal glands. This tumor causes the body to produce large amounts of ACTH (adrenocorticotropin). This excess ACTH causes the body to produce extra cortisol.
Cortisol performs vital tasks in the body. Cortisol helps:
- Maintain blood pressure and cardiovascular function
- Reduce the immune system's inflammatory response
- Balance the effects of insulin in breaking down sugar for energy
- Regulate the metabolism of proteins, carbohydrates, and fats
- Assist the body as it responds to stress.
When the amount of cortisol in the blood is adequate, the hypothalamus and pituitary release less CRH and ACTH. This ensures that the amount of cortisol released by the adrenal glands is precisely balanced to meet the body's daily needs. However, if something goes wrong with the adrenals (or with their regulating switches in the pituitary gland or the hypothalamus) the level of cortisol produced may be more or less than what the body needs.
When those levels are too high, the symptoms of Cushings begin to present themselves.
Since Bailey just had TWO MRI's, that showed no pituitary tumor, the Drs. are thinking that the tumors could be on her adrenal glands. Further testing and possible surgery is in store for Bailey, after our move to Denver.
This move has been particularly stressful for me....there is so much going on medically, with the kids, that I can hardly keep up. (Not to mention my own medical needs)
Packing is the easy part...keeping it packed and organized is a whole different story. The kids miss their "stuff"....the transition is hard for them.
I am ready to be done with this whole moving thing....I want to be in a place of stability. I want to feel secure that the kids will have their needs met...this includes basic things like medical insurance. It blows my mind that medical coverage is either 1) too expensive to have or 2) Not available because you happen to make a few dollars to much.
What kind of country do we live in, when those in prison, receive better health care, than the working American? I am livid, and hurt that the good people of this world, suffer endlessly.
All I can do is continue to fight. Continue to stand up and push back...and most of all, continue to THRIVE!!
Thursday, June 17, 2010
Thursday Vent
I talked with 2 drs, since our appointment yesterday. I read through Dr Giddings medical records of Bailey....and was shocked when I read a part describing Bailey as having Cushings Disorder. This was news to me, and I was upset that I had to read in in some notes the Dr gave me.
After doing some research about this disorder, I found it to fit Bailey exactly. My talks with the doctors have also given us a tentative diagnoses. We will get blood and further testing done next week, to confirm.
Honestly, I am feeling extremely overwhelmed. The house is a mess with boxes, and my mind is a mess with worry....and I can't do a darn thing about either of those. (Telling me to worry less, is like telling a fish not to swim)
On a good note...I am now down 22 pounds after almost a month on low carb.....at least I have that going for me--eh?
I can't wait to move....I just want it over and done with!
As for the Neurofibromatosis, brain surgery, urologist, ophthalmologist, blood tests and all the other medical stuff....It will just have to be on hold, until after the move.
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