It's confirmed

JillAly

UCSD is on the forefront of the disease in the research so if you are already connected to them, it sounds like Hadley is in good hands.  No mom wants to go through this and I'm sure it's already been so hard on you but kids are resilient.  Hadley is strong!

Have they started her on cysteamine?  Can they give it to her at her age?  I think they also give potassium right?  And cut down on carbs? The fact they know what it is so early is good- they can get her on the right drugs and monitor her before any renal damage happens.  She will have a good, long life ahead of her and while she'll need to be monitored, she will be able to do everything your older child can do.  Good luck!

sescms2004

I am so sorry you are facing this path.  But I know you must be somewhat relieved to know what you are dealing with, and it sounds like you are already making great strides into getting her healed and onto a path of recovery.  You are a strong mama and you and your little one will be in our thoughts & prayers.  HUGS.....

Daisy's mom

I'm so sorry to hear that, ((( hugs))) mama and Hadley. Thinking of your family.

amberleeb

I am sorry you have to go down this road but glad you have a diagnosis so you can get her the correct treatment.  Your doing a wonderful job Mama, hang in there.

newsbaby

Huge hugs and good luck going forward.

njdcgirl

epphd:

First off, I'm sorry. I know that this is a huge amount to absorb.  But I also suspect that the alternative would be even worse in a way because...what then?  I'm glad that you know what little Miss H is facing - and that is such a huge part of it.  You are all going to face this head on, kick ass and take cystinosis's name!  And in the meantime - what an ambassador you will be.  You didn't sign up for it, but you're going to be great regardless.  All of you will be.  HUGS.

beautifully said. ((hugs)) mama!

madhatter2003

Hugs. So much to take in, but it sounds like you have expert help and you'll be a great fighter.  Still, i can't imagine how you feel right now...we are here for you.

marcuej

JillAly:

UCSD is on the forefront of the disease in the research so if you are already connected to them, it sounds like Hadley is in good hands.  No mom wants to go through this and I'm sure it's already been so hard on you but kids are resilient.  Hadley is strong!

Have they started her on cysteamine?  Can they give it to her at her age?  I think they also give potassium right?  And cut down on carbs? The fact they know what it is so early is good- they can get her on the right drugs and monitor her before any renal damage happens.  She will have a good, long life ahead of her and while she'll need to be monitored, she will be able to do everything your older child can do.  Good luck!

Yes, we will begin Cystagon (cysteamine) right away.  It's absolutely necessary and will help prolong her life!  She has been on postassium citrate (Cytra-K) for 2 weeks now and it works well to combat her low postassium and bicarb levels.  They haven't said anything about cutting carbs.  She eats very little so they encourage her to eat whatever she wants.  Her sodium level is low so we are supposed to push salt.  It's part of the Fanconi Syndrome. 

Dragonfly1226

I just want to send (((((hugehugs))))).

dana316

(((Hugs))))

I'm so sorry that you guys have to deal with this...but I'm glad you finally have an answer...

Hang in there, Mama...

 

Imanurse03

I'm so sorry to hear about Hadley's diagnosis.  I know it must be so overwhelming and frightening.  I suppose you can only take one day at a time.  But hoping that this diagnosis will bring about a treatment plan for her.  Thinking of you all and so glad that you have been so proactive for Hadley!

EmilyAnne

((HUGS))  I'm so sorry you got this news.  But I'm sure it's somewhat of a relief know that you know what your facing and can start getting Hadley better.  Take care.

nicolita14w

You and your family and sweet little Hadley especially are in my prayers every day. I am so sorry that it turns out she has such a rare disease, but I am glad that at least now you have some answers and can begin treatment.

Take care of yourself too, mama. This is a lot to handle and I'm sure the stress is overwhelming. 

Big ((hugs)). 

LucyPevensie

Oh mama.  My heart goes out to you, I'm so sorry you and your family have to deal with this at all - but you know what to do and you are going to help your girl through this every step of the way. 

LisaMarisa

I'm so glad you finally got a diagnosis but I'm sorry that it was something that was hard to hear.  I hope her doctors can figure out how to make her feel better now!

mikeandangie

Just wanted to offer my support. I think it's good that they caught it now and she can begin treatment. It will be ok, (((hugs))).

meechrobi

Sorry I am late in responding. So sorry to hear this news. Glad you finally have some answers. You and Hadley will be in my thoughts and prayers. Hugs! 

perry7285

i'm so sorry to hear this but i'm glad that you finally have answers. we are here for you for whatever you need--sending hugs and prayers!

sweetpea18

Though you were expecting this, I'm sure it didn't make it any easier.  I'm so sorry.  But, you can now move foward with treatment for your girl.  Hang in there and remember to take care of yourself, too!

mel72

Oh no, I am SO sorry.  She is just a little younger than my Jakey and I can't even imagine what you are going through and your strength has been an inspiration through all of this.  I wish you and your LO the BEST, she is one tough little girl : )

MAK06

So so sorry you are going through this but glad you finally have some clear answers! Saying a prayer for you sweet baby girl and your whole family! 

happytracy

Big, Huge hugs to you and your family.  Hang in there momma.

emiannie

I know I'm late.  I didn't know what to say yesterday.  I researched it a bit to see what you're dealing with.  I am so sorry.  :-(  I'm glad you have an official diagnosis and can now move on from the "what if" stage onto the "let's fix this" stage.  Big hugs to you, your DH and little Hadley.

DeputiesWife

:hugs::