Yesterday I got a phone call from Gideon’s endocrinologist office because they had gotten the results from Gideon’s blood work. Here is what she told me-
- Gideon’s ACTH levels were “high-ish”
- Gideon’s cortisol levels were “mid-normal.”
- Gideon is in what’s called “compensation phase.”
Basically this means that Gideon does not currently need daily medication but he will need what’s called a “stress dose” of cortef when he is extremely ill.
Can I just be honest? I’m still learning what all this means. I have a very basic knowledge of science in general and to make matters worse, I don’t research this stuff until absolutely necessary (which may or may not be a good idea).The parents on the PBD support page talk about these levels regarding their children so I know adrenal insufficiency is an issue for our PBD kiddos….but I don’t want to learn all about it until I absolutely have to. I saved this photo yesterday to my phone just to help me grasp some of these terms visually.
The statement “ignorance is bliss” is all too true when it comes to the progression of this disease regarding my son. I know the future looks bleak and I’m not ignorant to the fact that harder times are coming…. but I just want to enjoy today as best as I can. Otherwise I might waste every day worrying about the suffering my son might face tomorrow. And that’s not a healthy place for me.
So if you have lots of questions about what all this means, rest assure, I have more. I’m slowly taking in information and what the next 6 months to a year look like as the disorder progresses.
For now you’ll have to take your questions to Google. 😉
Well, as a PhE (Parent having Experience) with both PBD and adrenal insufficiency, let me chime in…
1. Adrenal insufficiency isn’t the end of the world. It is the one thing they can ‘fix’ in our population through the administration of hydrocortisone, which is naturally produced by humans.
2. It is good you have this information. When Gideon gets sick, they will prescribe you Cortef (branded hydrocortisone) to help him get through it. He will get well faster and with less risk of regression occurring from too much stress on his body.
3. Gideon is progressing… these are just things that come up, often with age. Adrenal insufficiency was rarely discussed prior to the GFPD. We knew it could happen, but we didn’t realize how often, to how many kids, and at such young ages. It used to be that they didn’t even start testing children with PBD until age 3. Now, we have kids that are being tested under one year of age. Knowledge is power, and a healthier life for our kids with sluggish adrenal function.
4. JFK had extreme adrenal insufficiency, also known as Addison’s Disease. Generally, kids with PBD aren’t on total steroid replacement, but a whiff to support a sluggish system. If your friends & family are interested, they can google “Addison’s Disease” to get some general knowledge – understanding that kids with PBD don’t typically need total replacement.
If I had a crystal ball, I couldn’t ever have imagined the life we’d have as Sam’s parents. Sam has shown his determined, warrior spirit throughout his lifetime, enduring not just PBD, but leukemia.
My suggestion is to put that picture away, and pull out the information when you need it… when Gideon gets sick. As this journey is often a lonely one, I am anxious for you to gather with all of us for the conference this summer so that the scientific mumbo jumbo makes a little more sense, but mostly, you feel the community of support you have from others facing many of the same struggles.
Sending you much love and support, my friend. I look forward to seeing you soon!
Shannon…I just love you. Thank you for always being my Web MD when it comes to this disease. I’m sorry that we have to know one another under these circumstances but I couldn’t have asked for a better friend to walk this road. We WILL see you this Summer…not sure how just yet…but God has provided thus far and I’m confident we will be able to get there one way or another. 🙂 Looking forward to fellowship with you and the other families soon. LOVE LOVE LOVE you!!! (PS: I’m going to copy and paste your response on my post, if you’re okay with that.)
MT SWEET BABY, I WILL TAKE MY TIME WITH MY BABY BOY ONE DAY AT A TIME ALSO ! PLUS LOVE HIM EXCESSIVELY ONE DAY AT A TIME. LOVE YOU HONEY !!!
Love you too!!
Praying for your sweet boy and family.
Thanks Jonelle!! 🙂
Praying that medical knowledge will not overwhelm and take any daily joy of having sweet Gideon in your life. Love that you take each day as it comes instead of worrying about what could be and when–sending love and hugs your way!
Thanks Melissa!! 🙂