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My daughter's story (Read 91104 times)
Kim
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Re: My daughter's story
Reply #270 - 12/08/13 at 07:06:34
 
Todd, Thank you for your post. I started telling Brie's story in hopes of finding answers to her medical issues and then it took a turn and was more to keep the friends I've made on here updated on her status and also to try to correspond with others in a similar situation. I also always hoped it may help some parent who may be going through the same with their child and to encourage them to push along with the medical system until a diagnosis or helpful treatment regime improved their health and life. Due to Brie being pretty stable for over 2 years and other obstacles in our lives I have not been able to be on this site much but always appreciate hearing from people who do, how they are doing, and to know that Brie's story has not gone unheard. Just a quick update on her.....  she has started to decompensate over the last couple of months and reasons for this are unknown. Best guess would be that she is starting to mature. Her Addrenal Insufficiency remains stable and it's been a long time since she's had an episode of NEH but her mast cells seem to be kicking up a little storm.  Skin issues, diarrhea, stomach and headaches have increased significantly, and bone pain is back.... especially in the back and legs.  Took her into one of her local Dr.'s for a follow-up for this and he doubled her Loratadine and this has curbed the symptoms a little bit. He repeated some of the basic labs for MCAD and again her Tryptase was normal. So once again we do not have a definitive diagnosis for MCAD. According to Dr. Castle's Brie meets 3 of the 4 needed criteria for a definite diagnosis of MCAD and the one that is missing is the elevated Tryptase. I will do my best to keep   her story updated as things change. Thanks again for your time and interest in her story and of others dealing with this.
Kim
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Lisa
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Re: My daughter's story
Reply #271 - 12/15/13 at 22:59:30
 
I'm really hoping that Dr. Castells will begin to study these kids, Kim!!  According to Dr. Escribano, they are very rare!   We have two that we know of here in Brazil, my son and another boy who sounds to me a LOT like Brie.  Thankfully the doctors here look at the symptoms and don't pay way too much attention to the criteria in that they are recognizing that these kids do indeed exist and need attention desperately!!!!  If they would publish a case history, of which Brie would be an excellent case, this would help open up the way for other kids like her!!!  

Speak with your doctors about this Kim for it would be a tremendous benefit to other parents around the world whose kids defy the rules of masto!!!

Give Brie my kisses!!!!  They go double for you!!!! Kiss Kiss Kiss Kiss Kiss Kiss

LISA
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Donīt forget, there is so much more to life than being sick!
 
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Kim
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Re: My daughter's story
Reply #272 - 12/16/13 at 13:25:00
 
Thank you Lisa for your message and kind words.  She would be a great subject for a case study as meets all criteria other than the elevated labs.  Missing you and sending you and your family hugs and wishes for Happy Holidays!     Kim
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Kim
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Re: My daughter's story
Reply #273 - 03/26/15 at 17:05:13
 
WOW!  Has it really been more than a year since I've posted to this site? Time and life has gotten away from me.....  many critical illnesses in the family etc has contributed to this I suppose. Anyway, I just wanted to say that I see many more posts on here regarding children. And I don't want to minimize the effect this disease has on adult lives... but need to say that I am so Thankful that parents have found this site and so they can find helpful information to try to diagnose and treat their kiddos.  This disease, although rare, is even more rare in children and this site has been a blessing to me and I only hope that other parents find the same outcome!  Lisa I am so glad to see you are still here as you have been, and always will be the guardian Angel that helped me get Brieann the diagnosis and the treatment she so needed to improve her life. Hugs Smiley
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Lisa
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Re: My daughter's story
Reply #274 - 03/27/15 at 01:30:16
 
Yes, Kim, time does fly doesnīt it?   And Brieann must be getting to be a big girl by now!!!  I hope she is doing well and has gained some stability and normalcy in her life.  I really have a small role, Kim.  The majority of the fight has been yours and you, as her mom, are an inspiration and example for ALL parents independant of the form of masto their child has.  Your constant pushing and insisting on answers is what has given to Bri the break she so badly needed!   You should be proud of yourself!!!

Iīm sorry for all the difficulties you have been facing this past year and Iīm sorry youīre not on her more yourself.   You have such a valid voice as a mother and have learned a great deal about masto that you can really help other parents in dealing with their childīs illness.  Donīt think that just because Bri is "spotless" that you canīt have anything to say to parents whose child has spots.  The disease is almost the same and even though most of the UP kids donīt go through what Bri does, the fears the parents have and the challenges in being able to identify the triggers remains the same.  

So please, consider being more here to support the parents, your voice is incredibly valuable!!!


All my very best Kim!!!!!!!!  Kiss Kiss Kiss


Lisa
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Kim
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Re: My daughter's story
Reply #275 - 11/09/15 at 21:18:32
 
Hoping this post finds you all doing better with health and life. I really do miss my interaction with all of you and this wonderful site. Just can't seem to balance life's  challenges and my updated posts for this site. Come here when I get the chance to read others stories and to try to help Brie but so far just lingering day to day. She has reached puberty and things have again increased....... not to the level they were before being heavily medicated. But still.... or again......   pretty somatic.  Being so far away from any mast cell specialist continues to make things very difficult. We give her "extra" doses of her meds when needed but she is resistant at times (more often than not) due to the sedation of them.  I admire her strength for "wanting to stay awake to learn in class" but when this all alters her health when she doesn't have her needed meds what do you do as it is a rapid moving snowball rolling downhill as many of you understand. Also wondering what if any female issues are related to this disease as Brieann is already experiencing several ovarian cysts...... the last one ruptured giving a ruptured appendix scare to myself and the ER Dr's.
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Kim
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Re: My daughter's story
Reply #276 - 11/09/15 at 21:31:37
 
One more important piece of information is that Brie's most life changing medication has been the Gastrocrom. And her local Dr.'s have contacted Dr. Castell's about her more recent worsening symptoms and were told she is on the max dose or the Gastrocrom and they do  not have any further suggestions...........
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Joan
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Re: My daughter's story
Reply #277 - 11/10/15 at 14:35:21
 
Kim,

I can't remember whether or not Brie has been confirmed with SM or MCAS.  Regardless, some mast cell doctors are giving MCAS patients Gleevec, and there is about to be a med approved that is going to be used to help lower the mature mast cell burden in patients with the c-kit mutation.  Whether either of those would be helpful or advisable on someone of her age, I don't know.  If you want more info about either of those, PM me.  Apparently, Gleevec is something people can go on and off if they need or want to.
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Joan
 
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Kim
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Re: My daughter's story
Reply #278 - 11/10/15 at 15:44:50
 
Sent you a PM Joan.... Thank you!
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Kim
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Re: My daughter's story
Reply #279 - 11/11/15 at 17:40:23
 
Oooops Sad  Brie asked me to update her picture last night and so tonight I tried and somehow deleted her pic all together and for the life of me can't figure out how to upload a new one. Can anyone send me the steps to do this?  Thanks!
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