Support for Those Living with Adrenal Insufficiency

One of a Kind

One of a Kind

Hello! My name is Karen, this is my son Nathaniel, aka Goober-Fish, or Nate, as he now calls himself.

naterhatNate who is almost 5, is the only known person in the USA with POMC.  He has a list of health issues and Adrenal Insufficiency or “A.I.” for short is just one of them. 
A.I. is something I as a mom am VERY aware of every day. He cannot tell me fully what is going on with himself and so I have to go by visual clues and his attitude…This is VITAL because A.I. is a life threatening disorder/disease, call it what you will, it is SCARY!!!!

  • Today, is a ‘good’ day…I just got Nate down the stairs…which sometimes in itself can take 5 or more minutes because of his OCD/ Sensory issues. *whew and as we wait on the porch for his ride to the Medical Daycare center he starts stressing out about something that is in the car but he cannot tell me what it is, he calls it ‘chalk’ but when I show him chalk he shakes his head and cries! NO..and points to the car..Poor guy, mommy does not know what he is trying to tell her.
  • I have his bag ready, he has his emergency kit= the Solu-Cortef® injection, the needle, the instructions on ‘how to’ and his medical information sheet with Dr. name and number.This goes with him where ever he goes he has one in his bag, I have one in my purse and there is one at the Medical Center.
  • I am now having to send his cooling-vest with him because one of his other issues is that he has Hypothalamic Disorder and cannot control his body temp. (we live in sunny Florida) He gets heatstroke. and guess what?! Heat stroke can trigger an ADRENAL CRISIS in him, getting too warm can make Nate sick, and can send him to the hospital.
  • And Monday he showed me that he is getting his big bottom teeth, and guess what, that can be stressful..do you remember what that was like? the constant little jabs in the mouth as your tooth got looser and the not knowing when or in his case he has no idea that the are going to fall out! what a shock that is going to be for him!! and so because of this added stress he is grumpy. and we will be adding a little extra H.C. (that is the hormone that the adrenal gland should make for him but does not)
  • Today was the start of an increase of this Thyroid medication (he has Hypothyroidism) his levels are still very low. BUT. he has shown to be allergic to his medication and so we have to watch for signs, because …guess what?! an allergic reaction causes ADRENAL CRISIS …which sends Nate to the hospital.
  • As he gets up onto the bus he really starts crying and pointing more to the car and stressing out. I am sad that the aid ( a nice woman) does not even attempt to sooth him. she does not understand that my little man is using up his adrenaline …you see..that is one of the things OTHER PEOPLE take for granted. you get sad or scared or excited and your body produces the right about of adrenaline…Nate’s DOES NOT.

NateminimattAfter he is done crying he will crash, he will be depleted of adrenaline. If he has a big meltdown or huge stress it will take him that much longer to re-coup.

I call ahead to the Center and speak to his nurse. She will increase his H.C. for me. I am grateful that I found this Medical Daycare center with its great Nursing staff…but Mommay needs to know her little man is OK.

April is Adrenal Insufficiency Awareness Month…recognizing AI and being able to treat a CRISIS means LIFE for my little man. PLEASE share our story.

Karen

Learn more about Nater and POMC 

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