Reply from kgruba

Thanks Heather and Lisa!
    I typed my latest posts at 1:45 in the morning.  I would like to blame my "brain fog" onto that but the reality is I need to continually "think outside the box".... it is as simple as blocking the histamines and until this last week I never knew that.  Soooo.... my mind is still triggered to think "allergies".  Also thanks for the helpful link .  
                                                                                              Kim

Reply from kgruba
Thanks to all of you for your suggestions with Brie's meds.  She started the Zantac today and I now have liqued Benadryl on hand if needed. We had a productive day as  I checked with my Insurance Company today and Dr. Castell's and Dr. Akin are covered by my plan - YIPPEE!  Now if I can get them to respond to my email and get her an appointment I will start trying to figure out the financial end of getting her there.  I spoke to her Pediatric GI Dr today and he won't consider making any med changes until he re-evaluates her (first available time to get her into him is January).  I made a call to my son's Allergist / Immunologist to see if he knows anything about MCAD or if he has treated it, or wants to learn about it, or if her can make some recommendations of who may be familiar with it... haven't heard back from him yet but it is one more possible resource locally anyway.  Also starting to formulate my next email to her Pediatric Diagnostician at Mayo... hopefully get that out tonight or tomorrow.  Just want to send you all GREAT BIG HUGS for all of your wise suggestions, encouragement and support!!!!!  We Love you all.
                                                                                     Kim & Brie

Reply from lisathuler  

Great news Kim!   Atta Girl!  Keep knocking at those doors to see which ones are OPEN!!!    One of them most definitely WILL BE!    

As to your local doctors, remember, they are not comfortable with working with diseases that they don't know and as my dermatologist says,   Lisa, most doctors don't like masto!  They dont' know it and they don't like what they don't know!  So they aren't helpful!     So, Kim, don't toss a good doctor out just because he's not comfortable with the changing of the meds.  Once you can get Brie into the hands of EXPERTS the others will have to follow in their footsteps!!!

My doctors have openly admitted defeat with me!  The hematologist I saw on Tuesday has openly admitted to me as being totally LOST and not knowing what to do, but I've kept sending her information and she keeps reading it and with the recent MCAD diagnostic proposal paper, it explained enough what the forms were so that it gave her the confidence to say that she agrees with Dr. Castells and Dr. Escribano in that I must redo another bone marrow biopsy.  She knows we still need answers so she's willing to do it - gladly!  

So, if you've got doctors who recognize how sick Brie is and yet are being cautious, they are being so due to the fact that when there is someone who must sign on the dotted line, it's their name that is in play and so they are required to be cautious!   You know the responsibility, Kim, so be patient!   Don't worry too much about those meds.  If you feel any of them needs to be pulled back then do it on the anti-inflammatory for that's probably the only one which may be any real issue, but adding the Zantac and doubling the Allegra should bring about some really positive improvements!

Let us know how it goes!

Lisa

Reply from sandi

Kim, Jumping for joy that you ( she)  can see Dr Akin or Castells!!!!    

Reply from starflower
Hi Kim,

I think Dr. Akin and Dr. Castells prefer that you have a local doctor to work with on a regular basis, but I don't think a referral is necessary unless your insurance requires it... mine doesn't.

Heather

Reply from kgruba

Lisa;
Thank you so much for always going above and beyond to help everyone find the right Dr.'s, treatment, answers, etc.  You are truly an ANGEL.  I would love to have any information that you have on this Dr. if you think he sees Pediatric cases too.  You can PM me the info if you'd like.  
                                                                                                         Kim

Reply from kgruba

Sarah;
         Thank you so much for your post.  I appreciate you taking the time when it sounds like you are going through a very difficult time yourself.  I am so sorry that you are not doing well!
Are you taking the H1 and H2 blockers like most on this forum?  They have sure helped my daughter... but nothing has eliminated her symptoms.  I will definetaly look into the diagnosis that you mentioned... as we are still trying to find a unifying diagnosis for all of her symptoms. I hope you start to feel better and that we hear more from you when you do.  This is a wonderful forum and VERY EDUCATIONAL... maybe you can find some answers for yourself on here.

                                                                                                Kim

Reply from lisathuler

Sarah,

Have you heard of the Canadian Mastocytosis support site?   They have integrated themselves pretty well within the country and they can tell you who the doctors are who may be within your region.  You're needing some serious investigating, sweety, and they can help you work within your country's health system.  

Yet, please don't feel like you need to go leaving us, for the understanding of the disease!  We have a great group of people here and everybody, even our newest, feel comfortable and at home here.  Many of us are Americans, but we've got people here from the UK and Australia and I'm the loner from Brazil (although I am American).  Well ALL know how hard it is to find doctors however, and how important this is.  Yet we have only one Canadian who seems to drift amongst us, Manuella but she lives out in BC (gorgeous country that!).  But as one of the girls here said, many Canadian patients end up going to the doctors in Boston!  Manuella got her diagnosis through Dr. Castells and I'm sure that if she hadn't gone to her that she'd be without a diagnosis still!   One of the thing's I've noticed, and that my own masto specialist has told me, Sarah, is that each country has a tendancy to follow certain schools of thought on diseases and how they diagnose them.  Brazil seems to follow Europe's much more stringent attitudes and I suspect that the Canadian doctors do too, for a lot of Canadian patients struggle to get a diagnosis.  Yet, part of the same battle I go through as Canadian patients also go through is that there is no research center for Mastocytosis in Canada nor is there in Brazil.  A research center within a country helps to raise awareness amongst the medical community and this helps the doctors think along those lines.  Yet, Canada does have research going on in mast cells within other diseases and this is at least a help.  Brazil doesn't have any kind of research in mast cells going on and mastocytosis is a foreign word to them!   So, it's 3 times the struggle for me to get my doctors and my answers.  

But the key here for you Sarah, is to keep working with your doctors.  We have some excellent information here and we can also give you more that will help your doctors think masto. It may be that masto is the root of your problems, but without your doctors thinking masto and testing accordingly, then you'll stay without answers.  So, the thing to do is to get them thinking in the right direction.  Give us your email - PM any one of us, me or Heather or Ramona or Deb and any one of us can give you some great information for your doctors.  Print it out and ask them to read it and see what they think about this disease as a possibility.  This is what a LOT of us have to do for the majority of us don't have the priveledge of being in the hands of experts and our doctors are learning right along with us!!  

We're here to help you Sarah and we'll do what we can to help you find these answers!

Lisa