Brie did ok with her Adrenal Stimulation Test today.  They admitted her to the Pediatric ICU so that made me feel more comfortable.  We are home now.  The only symptoms she had was some nausea and some small hives that would come and go for about an hour.  Nothing really scary.  I don't know how long it will take to get the results but I will let you all know once I hear something.  Thanks for keeping Brie in your thoughts.

                                                                  Stay Well, Kim

Lisa;

    Can you tell me if there could be a "delayed" reaction to the test?  I am trying to figure out if Brie had delayed symptoms or if things were just her normal symptoms.  ALL of her symptoms have been next to none (except for the flushing) for a week or more now.  But after leaving the hospital she got really nauseated and later a stomachache.  Then before bed she had a headache and some dizziness.  This morning she awoke with real puffy eyes and this evening a bad stomachache.  Her teacher reported she was VERY tired all day in school and kept laying her head down (although she had a good nights sleep last night).  The only symptoms she had during the test were some mild flushing and some mild small hives that would come and go for about 1 hour.  None of these symptoms are new for her... but they have been absent most of the last week or more so I am just curious.  And none of them seem extreme or much to get worked up about.... but once again - just curious.  Also  she did not get the sneezing, watery eyes and barkey / croupy cough that she had after anesthesia in the past.  

                                                       Thanks Hon,  Kim

Josie;

    Thank you so very much for your response and the explanation of the delayed reactions that you experience.  I just wonder if this is what Brie experienced as she has been pert near symptom free for a little over a week and then had 2 days of symptoms that actually started with the hives that would come and go during the test.  Brie's symptoms were not life threatening at all... nor were they anywhere near as severe as they can get. .. but it does have me wondering if "her bucket" was overfilled with the stress or other things involved with doing the test.  I was just curious if many others experience this.

                                                              Stay Well, Kim

Lisa;

  Thanks for your post.  My mind is toast at this point and I have done nothing but give myself a headache.   I do not yet know the results of the Adrenal Stimulation Test... but I do know that something came out as at least "slightly abnormal".  The nurse called me today with this information... and the Dr. will call me "once she has time to check into a few things."  Don't blame the nurse!    as it was I who pushed for the answers  ... as I always seem to do.  

   So now I sit and wonder just what this means.  Been scouring the internet and can not tie Adrenal deficiency to MCAD.  She DOES NOT have many of the symptoms of Adrenal deficiency... and yet some she does have.... but these seem to cross over with the symptom of MCAD.   And every symptom that she does have fits into MCAD. So if they come back and say it is all due to Adrenal Deficiency I will be discouraged.   And I am not sure I have the patience to wait another 3 months for answers from Dr. Castell's as far as MCAD.  

   Ok.   I am well aware that I am letting my fears get ahead of me hear and I need to take the back seat and let all of her Dr.'s figure this out...  but it is soooo hard!   And I just do not know what it all means to have low cortisol levels that I can not figure out a reason for.  She so far has tested negative for any Autoimmune disease... which could tie this and her MCAD symptoms together. So I am open for any input at this point.  Her Dr.'s are just as confused as I am and I hate to say this but I know more about MCAD than some of her Dr.'s do and I just want to make sure I am still going down the right road and can help them do the same.

                                                         Thanks to all of you,  Kim

Kim,

Don NOT get discouraged!  I fully understand your fears!  You're afraid that they're going to throw the baby out with the bathwater since they don't understand yet what is "baby" and what is "bathwater"!   DO NOT FEAR!!!    This obviously can NOT be blamed upon the adrenal situation only and if you're smart enough to figure that out, then it must be obvious to them as well.  If they really are as perceptive as they seem to be, then they're not going to leave it at that.  The treatments that are helping to improve Brie's condition speak a great deal for themselves - you do NOT treat and adrenal issue with GASTROCROM!   They know there is more going on here.  What they are doing is trying to separate and identify what all of the things are that are going on with Brie and in order to do this they've got to test in order to make exclusions and also pinpoint what each thing is that is going on with her.  

Kim, these imbalances can be part of her triggering system!  You've heard us talk about POTs, right?  Well, there is a hypertensive and hypotensive POTs and these things are really big triggers for us!  When I'm doing a lot of reacting, I can't stand in place for any length of time!  I had my pressure shoot up to 230/110 just because I had to stand waiting for my doctor to give me some paperwork one morning - I was in her office for about 5 or so minutes when just that standing in one place began to make me ill!  She was SHOCKED to say the least and had no idea that POTs could cause this hypertensive situation and when I sent her the information connecting it to mast cell activation, she was even more shocked!  She's an angiologist ant this is her area and even then, Kim, she's learned things with me that other diseases won't teach.  

Now, have they done an adrenal test on me?  No.  Should they?  Probably so.  Will they?  I've not the slightest!  I've had my cortosol off at times and yet nobody's thought to test it here.  Yet, I'll bet my cardiologist does this when he does an investigation into my syncope.

Kim, your fears are that they won't see the big picture, but I think you can be at peace about this, Kim.  This is why your doctors were hesitating before talking to Dr. Castells.   If the adrenal issues were the only ones, this would have been discovered by now.  

Yet, here's the beauty of your situation - nothing is going to stop you going to see Dr. Castells!  That's YOUR business and not theirs!  You've got the appointment, and it's your business if you want to go see her - they can't stop you, so don't worry about it.  Yet, thankfully you've still got room enough to find more understanding and therefore when you do see her, you've got more puzzle pieces in your hands to show her and she can put them together then!!

So, don't be impatient and don't worry.  They are doing their jobs FINALLY and they've seen that Brie's unstable and in trouble and they are trying hard to find out all of the pieces of her puzzle.  

I honestly think, Kim, that going to see Dr. Castells won't give you that magic wand to resolve all of Brie's issues.  But, what she will do for you is to give you and your doctors the confidence that they need as to where they are taking Brie, or more like, where Brie is taking them!!!  They're blind Kim and they are groping in the dark and they've only got the crumbs that Brie is throwing at them to lead them along and they are trying hard to follow those crumbs!  This is something totally new and foreign to them, my friend and now that they've learned to identify what is the crumb and what is not, this is what they are following.   Dr. Castells holds the flash light and she'll know what to do with those pieces and what belongs to the puzzle and what doesn't.  

So, again, take a deep breath and relax!  You've been on your guard for so long you don't know how to let it down anymore.  I fully understand it!!   But, trust me, Kim, even though I'm still pushing for further answers, there truly does come a time when the pressure begins to let up and you can come down a tad from that guard without fearing that your doctors are going to get totally lost again.    Don't let it down all the way, for there is always the possibility that they can lose the track of those crumbs.  But, I don't think so!!   My dermatologist had one of these periods too, but it was Dr. Castells who saved the day for me!!!

So, my dear, be at peace!!  They've caught the crumbs and have an idea of what it tastes like.  

As to the pushing, Kim, KEEP PUSHING!!   Don't feel bad about that.  You have to do this and you've seen the fruit of this constant pushing.  You're being a SQUEEKY WHEEL!!!   KEEP SQUEEKING!!!  

I think that if more of us did all that SQUEEKING, or more like SQUAWKING that this disease really requires that we do, many of us would have more answers and better care.   Those of us who seem to defy the WHO criteria for SM are truly up against the wall to find our answers!  We don't fit into the box and due to this our doctors don't know what to do with us.  If we don't push, we just won't find the answers.  It becomes a full time job, but it is one which reaps a lot of fruit!!   JUST KEEP PUSHING!  


Hugs Kim, and DO NOT GET DISCOURAGED, the finish line is in view, and then it's on to another phase!

Lisa

Hi Kim ,

My pleasure sweets . We have all been there in various ways

I understand the negative test results , your pleased , but increasingly frustrated as to what it is . Then bugger me , something comes up . The doctor is doing his job , making sure he has all the info when he speaks to you .  I also understand the waiting too . i had a letter yesterday saying I had to wait until October for my next appointment , put back from may     ............................................ Ah No . I rang the secretary , she is talking to the doctor on Monday and she will re appoint me from there .

hugs
Josie xxxxxxxxxxxxxxxxxxxxxxxxxx

Kim, one of the very HARDEST lessons we have is that of WALKING out our faith, not only in God but also in our doctors and others.   (No, people, I'm not preaching so please don't anybody get upset with me.)  This is especially hard when we see the goal and we want to RUN to get there!

Kim, I know I say this time and again but I do very much know just exactly the frustrations you are feeling for you're tired of beating your head up against the wall and also of seeing your baby suffering!!

But please, let me take you back several months to before you had found this one doctor who began to see what you've been telling him - the one who has really made such a difference in the life of you and Brie.  Remember how it was in the very beginning, going around from one doctor after another and the fact that they weren't taking any of this seriously!  Read back to your first posts and how hard it was back then just to get a doctor to listen to you!!

I'm thankful that your doctor is being cautious!!  This means she's not looking at your baby like a "project" just to make her name important.  Instead she's really caring and trying to protect her.  Although you are a nurse, Kim, have you ever seen anyone have a bad reaction to this exam?  I've not, but obviously your doctor has!  And for Dr. Castell's office to refuse to send the protocols, this make me feel very, very concerned!!   Don't feel frustrated, this door may have closed ON PURPOSE and you must see it as a protection instead of a "NO".  God will open doors and He will close others and you've got to learn to accept it without getting upset.

And I think that this definitely shows where your doctor is in regards to the MCAD diagnosis!  See, you didn't need to worry about it at all!  She's believing in it more than ever obviously!

Look Kim, if your doctor got rude with you, don't get offended.  I wouldn't be surprised, Kim, that it wasn't real rudeness, but more like she's frightened by what she's got on her hands!   People who are scared can come off as being rude to others.  And you may think it's odd for a doctor to be "afraid" of working with Brie, but this disease scares them due to the anaphylaxis we go through!!!   I consulted with an allergist, because I need a caretaker here in my town and it's not fair that my angiologist is who carries me!   The allergist blankly refused my case!  His eyes even bugged out!  The thing is that I get so nervous with doctors that it's insane and this ends up making me to react and this day was a bad day to begin with and sure enough I began having a crisis in his office.  When he saw me getting sick, his eyes began to bug out!  He beat the record for water fetchers so that I could take my medication!!!  But even after this, he openly refused my request and told me that he was afraid to work with me because he doesn't know the disease well enough!!!   He knew enough to decide that he didn't want masto patients!

So, be patient with your doctor.  She's most likely frightened out of her wits adn I wouldln't be surprised that someday, when she looks back, she'll say that Brie was her hardest patient!

The 3 months will FLY by Kim!!!  Just keep up with what you are doing and in no time you will be packing your bags for Boston!!!

Hugs!!!

Lisa

Hi Kim ,

Dr Castell's and her office are behaving responsibly in not issuing a protocol . They need to see brie and document her and her illness . They will then have a plan , which will include plans for procedures like this test .

In December I was very poorly with 3 shocks in a week . I was due to see DR Grattan , the UK masto specialist in January . He returned my call and spoke to my GP . But would not change any of my drugs or plans for me without seeing me . This is good medical practice .

When I have expressed concerns to doctors I have had some get uppity because they think I am questioning them . I am keeping myself safe .  I think she talked to Dr Castells office and they backed up your concerns and that they were more important at the current time than repeating the test immediately xxxxxx I agree with Lisa , that your doc has got a bit scared . I have seen my doctors go through this . they are happy to take me , then they see what I can do and get a bit scared . With mast cell conditions it is important doctors understand its quirks and often lack of logic . I am very pleased you have found her . She seems happy to take specialist advice .

Once Dr Castells has seen brie , they will remain her specialists forever . Your local doctor will be able to ask advice .

IF , they feel Brie's problems are not mast cell ( very very unlikely ) they will point a direction to move in

I hope Brie's symptoms are settling
hugs
josie