The truth behind the new diagnosis

We've been quiet again... for a really long time...and here's why:  I don't know how to put into words that my heart and head have been telling me since last December that we were slowly watching Madilyn being taken from us.  Something was brewing and slowly taking over her little body and she was slowly fading away.  It's devastating and beyond any words that I had/have to explain what it's like to watch your child dying.  I gave only the little glimpses on Facebook of the good moments.  I didn't let new people in and shut out the others.  We moved to another state to be closer to her doctors in late July and progressively watched her deteriorate.  My child that LOVED people and shopping and busy places couldn't leave the house without major major anxiety attacks.  Walks in the stroller became our only out.  No loud noises, limited people and only outside or in our own home.  Even in our own home at times it was too much for her.  She became super aggressive and I started getting questioned by doctors and others about bruises and other marks on me, I would burst into tears any given moment and even went on antidepressants because it was so overwhelming.  She stopped sleeping, staying up for days at a time and when she did give in it was only for an hour or two... it was like living in hell.... a hell you don't want anyone else to know about simply because it's too hard to deal with the constant pity and questions.  You start to feel a little ridiculous constantly repeating "I don't know" when asked the reason for her decline.

In early September Madilyn ended up sick with croup... after that Decadron injection at the hospital it was a week or so of heaven.  She was sick but I could see Madilyn... my happy, non-aggressive, loving life child... which was weird because she was so sick.... fast forward 3 weeks and we end up inpatient.  Madilyn would have an anxiety attack at school or an outing and not tolerate her feeds, it would start vomiting and I couldn't transition her back.  It happened again the weekend before Halloween.   We had been struggling desperately to try to get back on track since she got sick in September and just couldn't do it.  I broke down to our Special Needs medical team that something was horribly wrong and that her doctor's were missing something.  It was the first time I spoke the words that no parent ever wants to speak.  I told them that my gut (and my mommy heart) told me that she was dying, slowly, painfully and all because they were missing something. (Not them directly but her entire medical team).  At this inpatient stay she was diagnosed with Cyclical Vomiting Syndrome.... I loudly disagreed with this diagnosis from the moment it was given... more meds were added and I argued that all they did was mask whatever the real problem was and they were wrong.... my shouts fell on deaf ears.... we were sent home.

After a day or two of being home Madilyn was the worst she's ever been and I posted pictures of her on Facebook... I gave the world a glimpse of just how sick she was and that glimpse saved her life.  A friend (and medical mom) messaged me and started asking questions... then I heard those words.. Adrenal Insufficiency.  I knew Madilyn was in a really really bad place and we had steroids here since we regularly use them for her respiratory issues.  Steroids are what is needed with adrenal insufficiency, I gave them to her.  Within hours it was like having a completely different child.  She went from completely lethargic and hazy to up and wanting attention, she gave us a glimpse of Madilyn.....the next morning I messaged our Care team demanding testing for Adrenal insufficiency... the day after that I messaged and calmly explained why I wanted it.... they contacted our Endocrine Dr. and the first test was scheduled.....when the Dr called with those results she said they were okay for a normal situation... then I explained that when the labs were drawn Madilyn was hysterical... to the point of vomiting everywhere hysterical... that's when she scheduled test #2, which Madilyn failed miserably.

The stim test that gave us our Adrenal Insufficiency diagnosis also pushed Madilyn's little body too far and we ended up inpatient.  It's amazing how quickly we could watch Madilyn reappear right before our eyes super quickly with the introduction of hydrocortisone on a routine basis.  Adrenal Insufficiency is the lack of the body's ability to produce cortisol, a steroid, that you cannot live without.  Every time you are sick, stressed, injured etc your cortisol production increases to combat whatever is going on.  Madilyn's body doesn't do that.  Her Endocrine very blatantly stated that Madilyn was only still alive because "for some reason or another some doctor has always thrown steroids at her when she's been sick and it's the only thing that has kept her alive".

Adrenal Insufficiency can be fatal and that's the first thing they repeat to you over and over... Madilyn now wears a medical ID bracelet and we carry an emergency injection with us everywhere we go.  She also receives oral steroids 3 times per day, every day and more when she's sick to compensate for what her body does not do naturally.

Adrenal Insufficiency actually gave us answers to every single unanswerable medical issue Madilyn has had since our very first med flight in February 2013.  It explains the vomit, feed intolerance, sleep issues, anxiety, aggression, her regression (it causes memory issues and brain fog), her hypoglycemia, the circles around her eyes...ABSOLUTELY EVERYTHING!  This diagnosis and proper treatment have given us our life back!  For the first time in years I feel like we can breathe... We have been out shopping... out to dinner at a super busy restaurant on a Friday evening and Madilyn has done awesome!  It shocks me how quickly steroid replacement therapy has given us our child back.



We have a lot to learn and when she gets sick we will need to be inpatient for IV help but that's ok, that's totally livable... for the first time in a long time we are starting to plan ahead a little... we are excited to return to school and to educated as we learn about Adrenal Insufficiency and how to live with it.  I'm thankful to my friend for reaching out to me and giving my child her life back.. I'm thankful that I can come back to the blog and keep you all updated on the sassy shenanigans of the Peanugga...  and I'm thankful that her medical ID bracelet is pink... just like her new pink shoes..:)