Lisa Dear.... I never felt you or Deb were being "hard on me" or criticizing me in the least and I truly am thankful for all of the responses from you and others.  

It has helped me time and time again to set new game plans, develop new ideas or ways of thinking, to grow in knowledge, and they have given me the courage to move on.  

Your words, nor Debs, were not "too strong" at all.... They were words I would have said to someone had it not been me writing my last post about Brie.  It is always difficult to "read between the lines" when reading things in print for there is no way of knowing the other details or history behind what is written in print at that time or why people made the choices that they did at that time  That is the only reason I felt I needed to explain things in more detail.  

So I am asking all of you to please continue to send me your views, input, knowledge, advice, etc and to not be afraid that I will be offended.  I NEED these things as they are what keeps my mind and energy in full gear for battle plan number ???? (probably like #33 at this point in time).      

As far as the Dr. situation it is a very sad ordeal.  It makes receiving proper care while in the hospital almost impossible!  I have heard of "nightmare" stories that have occurred with patients care because of this.  The saddest part of it Lisa is that it is not due to any new laws or anybody (other than the Dr.'s themself) enforcing this!  Yes.... you heard me right.... the Dr.'s themself have chosen this alternative way of care for their patients!  This started in our town about 2 years ago.  Apparently the Dr.'s are tired of their "long hours" and "lack of a family life" and they no longer want to provide around the clock care of their patients.  To offset this problem and lack of Dr.'s to make rounds on patients at the hospital the Hospital now hires  "Hospitalists."  They are the ones who have shifts at the hospital to round on all hospitalized patients.... so the patients Dr.'s who are the only ones who really know them can have "office hours and time with their family."  These Dr.'s have all suspended their admitting privileges and without these privileges they can not round on their patients when hospitalized.  This scares the bejeebers right out of me!  And that is why I take my kids to their local Dr.'s office whenever possible versus ER.

                                                  I Love You All!   Kim

Kim,

If I were you, I'd very seriously consider putting a for sale sign on your house and that of your mom's and MOVING!!   MOVE TO BOSTON!  I don't see any advantage for you in staying there and since you're a nurse, I'll bet you could get a job in the Boston area in a blink!!!

MOVE, KIM!  GO EAST YOUNG WOMAN!!   GO EAST!

HURRAY FOR DR. STELZE!!!!!!    HIP HIP HURRAY!!!!!   THAT MAN DESERVES A HUGE PAT ON THE BACK FOR KEEPING AN OPEN MIND AND RECOGNIZING THAT NOT ALL OF US FIT INTO THE SMALL BOX!!   YEAH!!!!!


Kim, you tell him for us that WE ARE ALL VERY, VERY PLEASED to hear about his decisions and his hard work and that of finally recognizing that not all of us will react and fit into the small box that so many doctors want to put us into!!!   We so badly depend upon our doctors and if the are not OPEN MINDED, they will totally miss the boat and then we are stuck to either fend for ourselves or to totally give us and quit.    Thanks for not being a quitter, Kim, for your daughter has only had you to fight for her!!!   I can't tell you how pleased I am that you've been so constantly pushing and pushing and that finally it's paying off!  

If you had not taking the time to finally get about researching her symptoms and pushing for understanding and coming to conclusions you would not have been able to present to her doctor the possibilities of a mast cell disorder.  Without that, the doctors would never have looked in this direction!   GOOD FOR YOU KIM!!!   YOU SHOULD BE PROUD OF YOURSELF!!       I'm very, very proud of you and your doctor!

So, thankfully he's recognized that he needs to rely upon the HEAVY ARTILLERY!   GREAT!   That's good for I think he's going to need the help and support of at least one of the three if not two of them for Brie is most definitely a tough case = as tough if not tougher than mind, Kim!!    

Please keep us updated not only as to how this doctor situation develops but I want to know how she does with her tests please!!  

Kim, now, I'm going to give you a piece of advice.   YOU NEED TO CELEBRATE THIS VICTORY WITH YOUR KIDS!!  Tomorrow, do something special to commemorate the victory.  I'd make a movie night as a way to celebrate - I'd break out a coke, make a ton of popcorn and get a movie that we all could enjoy together and then celebrate with some cupcakes or a cake.  Don't let this victory slip by for it's a landmark victory for you and especially Brie!!!

 THIS IS JUST TREMENDOUS NEWS!!!!!!!!!!!!       I just couldn't be more pleased!!!   Thanks so very much for making my day Kim, this is TERRIFIC!!!!!!!!!!!!!!!!!!!!!!!!

I did not have the courage to ask this question until I Deb Mc has been describing the difficulties that her son deals with.  Thank you Deb!  

For any of you with any type of "cognitive impairment" have you ever experienced anything that sounds close to "hallucinations?"  

I know that many Dr's already feel that many of you are a "psychiatric case" from what your testimonies have described and I know that some of Brie's Dr's have probably felt the same of me.  I honestly can say that with some of Brie's symptoms over the last few months I truly worry that when I take her in to see them they will in turn call DSS and report me as a Munchhausen by Proxy case as many of her symptoms are so bizarre!  

From the posts from this forum (or others) I have not come across many testimonials that relate to the psychiatric nature that may or may not be related to this disease so I realize that I may be opening up a can of worms here.... or maybe that this is such a rare occurrence.

Also, it may be that this is such a "delicate" issue that people may not even be comfortable discussing this publicly and I have total respect for this.

I am going to "step out on a limb here"..... Brieann has always been a "normal" child in development and such.  She is a very bright and intelligent girl who has struggled academically due to what appears to be "brain fog."  This has become MUCH MORE EXTREME since Oct. 2010 in which her teachers state she "can't stay focused, can't concentrate, "sits in a fog", and can't retain information she already knew or just learned."  We just got her on an IEP for this and hope that this helps.

But my BIGGEST cognitive concern has been occurring since Dec 2010.  She has been displaying "irrational fears."  Normal kids of this age are often afraid of the dark, etc. and Brie has had these "normal" fears for the most part.  But since Dec 2010  her fears have escalated to daytime hours, etc.  It wasn't until shortly before Christmas of 2010 that she began to "hear noises" that others did not hear.  This escalated to the point that she began to periodically hear voices telling her "to come over here", etc.  She told me  that these voices were "Angels talking to her and that they watch over her."  Now in the last couple weeks she often hears "growls" "that are angry", etc. and that she feels "someone is following her and growling at her from behind."  She said tonight "I know that the devil can talk to us too and I feel that it is him."  Needless to say I am VERY concerned over this.

I am aware that long term steroids can contribute to a type of psychosis and Brie has been on them now for 10 months.  We have tried 3 different times to get her off of these and have been unsuccessful.  Now that we have started Gastrocrom it is our hopes that this will be a successful medication for her and we can then wean her off the steroid.  

I am truly concerned for her mental health and I am not sure if it is truly related to the steroid or possible neurological issues related to  Mast Cell Disorders.  

I am asking any of you who have experienced any psychiatric symptoms to please let me know your experience.  I understand if you are not comfortable posting it for everyone to view and wonder if you would consider a "private message"... I would hold your confidentiality with the utmost respect!

Thank you for any help or perspective with this issue.

                                                      Kim

Kim, you know how to get a response out of me!!!!!  

I am ECSTACTIC!!!!!   And yes, insensed at the crime that is going on there!    But, at least your doctor is as incensed as I am and she has the right point of view over it all!!!!  She's been ROBBED of her rights as a doctor and they need to start threatening some law suits to regain their rights!  They've been relegated to being nothing more than nurses in truth and although that sounds rough and as though it's a put down, within the medical heirarchy we all know that the doctor is on the top of the pile and has the weight of the responsibility to go with it.  When they are deprived of their right to call the medical shots over their patients, they've been stripped of their ability to perform their jobs and have been relegated to being nothing more than office workers and that's a crime!  In truth, they are not doctors then and anybody can pretty much do their job!  

How WONDERFUL and oh what a RELIEF that FINALLY! FINALLY! FINALLY!  SOMEONE IS SEEING IT BESIDES YOU AND BEST, DOING SOMETHING ABOUT IT!!!   That is a real answer to prayer and I'm very happy to hear it!!

Keep at it, Kim, but I'm going to give you one piece of advice.  Now that you've got doctors on your side and fighting for Brie, ask that THEY find the other doctors she needs to see.  Have them call up their cardiologist and neurologist colleagues, etc, and get them to speak with those doctors FIRST asking those colleagues to open up a spot in their schedules to fit you in and see Brie.  This is really the very best thing and it will avoid taking Brie to a bunch of doctors who don't see it.  

This is a techinique I've used once I began getting doctor support and boy does it work so much better than just going on your own.  It saves you a great deal of grief for the doctors who take you based upon a colleagues intervention don't question you as to whether or not something is wrong.  They already know that there is something wrong and they take you very seriously!!  They've had the situation explained and they are ready to deal with it, even if they don't right know what to do!!

So, this is my suggestion.  See if this last woman doctor can do it for she's upset and incensed and this is great, she'll be very firm as to her convictions and this will make those doctors she speaks to determined to do what they can to support her.

I'll be here praying and waiting to hear how it goes!

Hugs to you and Brie!!!

Deb Mc;

    Thank you for those links to the articles.  I can't wait to read them. I have recently searched the Internet for neurological affects of Masto/MCAD and have found little.  Lisa sent me a great article on this too.  

    I am not ashamed or embarrassed by this issue but know that some may be, or that others want this to be kept a private issue, and I was not sure how people would respond if I asked them for any of their personal experiences so I can better understand how this may be related to Masto/MCAD or medications used for these.

    I have actually been a Psychiatric Nurse for 25 years and thus I am quite familiar with psychiatric issues/diseases.  And due to this I am very confused about what Brie has been reporting as she in no way has the "Typical" behaviors/affect/demeanor, etc as someone with a Psychiatric Illness.  She has experienced short, one time episodes, of hearing things about a dozen times in the last 2 months. It does not continue day to day or for the entire day, etc.

    We actually went through a year from H____ about 6 years ago with my son (middle child) in which he experienced severe headaches, vomiting, stomachaches and severe periods of psychosis/hallucinations.  Every Dr. I took him to (except one - I fired him needless to say) agreed with me that he also did not have the "typical" features of a psychotic illness.  I fought for a year to try to find answers for him and low and behold his tonsils were 3+ (4 would mean they were touching) and his adenoids were so enlarged they were closed off!!!! And it took a YEAR for Dr's to find this! Thus.... he was SEVERELY oxygen deprived and THIS is what caused his symptoms.  He had his tonsils and adenoids removed and he has never had another problem with this from the day of his surgery! Brie had her tonsils and adenoids removed at 11 months of age (the youngest patient for this that our local Dr's and hospital has ever done! - yet another clue that something wasn't right from way back?!?!)  She has had x-rays done to rule out that they have not grown back so this is not the issue.

    That is what makes me think that something else is "at play" here with Brie.  I initially thought that she was interpreting noises differently than they actually were (Example: Our animated / moving Christmas ornaments that we have had up every year since before she was even born have never scared her in the past but this year she would quickly startle, stop, turn around and look at them with a scared affect.  They do make a "clicking" sound when they move so I felt it was this sound being misinterpreted.  But she later told me she heard voices telling her to come over by them, etc).  She at times hears someone call her name (and it is just her and I here and she is close to me and can see that it was not me calling her).  There are a few others but they are also pretty non-specific.  I then felt that she was maybe having these as a response to the worsening of her symptoms over the last several months and that it was dealing with this that was causing her stress and anxiety (although she hides her stress and anxiety pretty well as she really doesn't seem to have much but I know it IS there).  I just comfort her and assure her that I will keep her safe and do everything that I can to help her.  It was "out of the blue" almost 2 weeks ago that she told me "I know it is guardian angels talking to me when I hear those voices as they watch over me."  This was her way of explaining the reason for what she is hearing and this was comforting to her (and me).  But since she told me that, she has had 3 occasions that terrify her as the voices are now "angry growls" "as if something is behind her and coming after her."  The last one occurred when her and I were alone walking down a long hall at my Mothers apartment building. That is when she told me that she "knows the devil can talk to us too and she thinks it is him." Due to the situations in which these have most recently occurred I do not feel they are a part of an overactive imagination or misinterpreting other sounds around her and I have started giving more "credit" to her reports of these.  Yes they could still be just related to stress and anxiety, or they could be a side affect from her medications or I question if they could be a symptom of Masto/MCAD with neurological affects.  There is little info out there on this and both Dr. Castell's and Dr. Escribano have confirmed that there is little research in this area and that is why I was looking into the personal experiences with this.

    Thank you so much for your input and your links to further information!
                             I Appreciate all of you!   Kim

Interesting, Kim!  I am seeing more and more similiarities between your daughter and my son, who's now 28. My son's tonsils and adenoids hypertrophied at a very early age, as well.  He was exceptionally bright and articulate yet suffered developmental regression from age 3 - 5 - didn't grow an inch or gain a pound during that time and to this date has short stature.

Despite all his medical problems, my son made Nat'l Honor Society every year at the college prep academy he attended.  He graduated HS with 30 or 40 community credit hours and made Dean's honor roll there every semester as well.  He was awarded an academic scholarship to attend state university, based on his exceptional performance in HS, and was in his Junior year when his life came tumbling down and stopped.  

According to his HS principal, my son was "a powerful writer and poet". He played on the school's basketball team, was active in computer club and played classical guitar, even composed his own original pieces.  He played beautifully!

Sadly, my son now, at age 28, can't remember how to read music, let alone play it. He requires around the clock care and supervision due to severe cognitive deterioration. His memory is shot e.g. at times he cannot even remember his current phone# or address, albeit we've been here at this home for nearly 10 years.  

Today, however, he's doing much better.  We cut back on his intake of meat to almost zilch and he's coming around, coming back to life again.  It's that dang histamine.  He had fresh chicken thighs, no additives or seasoning, last night as part of the elimination diet challenge and within minutes of eating the meat, he became nauseous and had onset of phlegm - a subtle but telling symptom that he's having a reaction to something.  

Never stop turning over rocks.  Never give up hope.  Never say never.

Deb Mc