Lily has Adrenal Insufficiency. Fancy words for her adrenal glands don't work right. Some kids are born with the condition. Two years ago I was hoping for that diagnosis. Congenital Adrenal Hyperplasia, Addison's, Cushing's Syndrome-anything but a tumor. She now has no tumor, but no adrenal glands either. One was taken out, one was killed off by mitotane- a nasty little insecticide that they found helped dogs with adrenal problems- which for some reason is fairly common. Give it to kids, call it chemotherapy- but when it comes right down to it- toxic is toxic. When I started researching mitotane- I found all kinds of veterinary info on it.
We weren't prepared for the adrenal crises. Nights of throwing up, fevers, stomach pains. During chemo- you just attribute it to the nasty toxic side effects of the drugs. The doctors were very upfront with us- These drugs will cause nasty side effects- at times it will seem like we are doing more harm than good- but this is the best way available right now. The side effects were almost immediate. But we had no idea if it was the chem or the lack of adrenal gland- only one was taken out surgically- so looking back- the sicker she got , the better evidence of the mitotane doing it's job.
We weren't thinking ahead to what this meant for the future, because we just wanted Lily to have a future. Those are the tough decisions you make as a parent. Sometimes you don't understand other parent's decisions- but if you are a parent- you definitely understand how and why they got there. Your heart plays funny tricks on your mind. Watching your baby struggle is painful, even when your mind tells you it is necessary. Yesterday I took Lily in for her presedation physical and since we were there- stopped in to get Bella a flu shot. The older kids will get them at school. A mother with a 4 month old was in tears because her child just had to have immunizations and he cried. Welcome to the world. There is pain- and a lot of times the pain is necessary to prevent something worse. Until there's a better way- that's how it is. I wanted to tell her to suck it up, but I was actually glad she was there getting him vaccinated. Too many parents hide behind fear or religion to escape vaccines and epidemics are beginning again. I'm not saying there aren't government conspiracies and yeah they probably are injecting our children with mind controlling chemicals so that they can form them into an elite army later- I'm ok with that - I just wish they would give me the code so I can practice on them. I kid.
There are a couple of options for meds that Lily can take. Hydrocortisone is the most natural replacement- it performs the catch all functions of they myriad of steroid hormones that the adrenal gland. She also take Fludrocortisone which helps keep all the minerals in balance. She takes both in the morning and a 3/4 dose Hydrocortisone in the afternoon. If she gets sick- vomiting, fever- icky stuff- or hurt badly she needs extra cortisone because the adrenals would release extra cortisol. That is where the training comes in- I gotta know when this would be needed and respond accordingly. Now steroids have been in the news on and off for their performance enhancing capapbilities. I ahve seen this. Lily is a little hulk. She is big, she is sturdy and man does she dance angry. Now that I think about it- the Hulk is a perfect metaphor for how she acts. She can be sweet and caring and bubbly but can change on a dime. Then the roid rage sets in- the hitting, the tantrums. Not so appealing in an oversized 5 year old. We are learning the ins and outs of things. Mostly I am learning it's an imprecise science. The human body is a pretty amazing thing- it saddens me how badly some people treat it.
I am really grateful for the support groups I have found. MDJunction is a site that has tons of different groups for any condition you ever could have. It is run thread style so I have a very tough time finding specific information unless the discussion is titled that- and it is people's experiences which you ahve no references or background on. There is also a newly formed group for parents like me on Facebook. Parents of Adrenal Insufficient Kids. It's amazing how much better a person feels when you hear- I have experienced the same thing- you are not alone. No you are not going crazy- we went through that.
It's a cozy little group. I love that when I post a question, I get responses with in the day. If you know someone who may have a child with this rare condition- direct them our way. Lily presented with pre-pubertal changes but that was due to the tumor- general Addison's(adrenal insufficiency) is characterized by general fatigue, muscle weakness, loss of appetite and weight loss. There can also be a characteristic darkening of the skin. It's not a common disease, but can be fatal if left untreated. Seems like your body really needs that crazy gland on top of your kidney. With kids and their ever changing chemistry and bodies- and sickenesses there are many unique challenges we face.
http://www.facebook.com/home.php?#!/group.php?gid=108310522525740
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