Ear infections = ER
Ok, so maybe I'm being a little melodramatic, but it's the truth. Ear infections, now, are a matter of life and death for Toby. Sending us straight to the emergency room with complications his feeble parents can't control. And I'm having a hard time accepting that for the rest of his tiny childhood, I'll be nervous wreck it will happen. Again.On Saturday I attempted the zoo with the kids, husband and my mother. We lasted a good 2 hours before calling it, and heading home for naps. I don't know how you people do it, but going out in public places with my two children is an instant headache. Not to mention I'm immediately pissed at their father, for no apparent reason. So, we try to avoid these real life situations, and stick to learning from books, and games, and God forbid - Super Why. Maybe in another year we'll try again.
That day, we had picked up Toby's eyeglasses. I was eager to get home and try them out, and was shocked when he put them on and didn't immediately chuck them across the room. I had heard from other parents that this was the case, but sure as hell didn't believe them. They were right. Finally, he could see, and why would he not want to wear these adorable fashion statements?
The first time he watched TV with them on, it was like a glorious shining down from heaven. Monsters, and he could actually see them. Wow- TV! he exclaimed. Again, one of those moments I need to remember.
That night, he woke up in the middle of the night, twice. Screaming crying, he hadn't had a nightmare like this in a while. Both times I consoled him and put him back to bed, the later time, changing his fleece jammies because he was burning up. In hindsight, I'm sure he had a raging fever, and I didn't catch it. Toby 1, Mom 0.
Sunday was no better. Whining all day and all night, I finally got him to drink 2 oz of Pediasure with Tylenol in it before his nap. That lasted two hours before he was up, and inconsolable. 30 minutes he screamed and kicked. He held his stomach, then his head. I couldn't touch him or the most devilish noises spewed out of him. I was worried, and so was Parker. Hoping they would find something causing his pain and his loss of appetite, I headed to the urgent care Sunday night. After getting an ear infection diagnosis, we headed home. Too late to hit any pharmacies near us, I made a plan to get his medicine in the morning, and douse him with Advil when we got home. It didn't work, he threw it up, but he went to bed with a bottle, and I hoped and prayed he'd drink it through the night. I was mainly concerned with his blood sugar. Not eating meant no added sugar, and your body only stores so much. I was right to worry, he ran out.
Monday morning we woke to him screaming, sitting in a pile of his vomit in bed. Parker, cleaned him up and laid him in bed with me to calm down. He was pale, sickly and pissed off. I took his blood and his sugar read 55, far from the 70 he should be at minimum. He would not drink juice or a bottle, so I squeezed gel icing in his mouth, scurried in the car, and headed off to the children's ER. Calling his endocrinologist on the way, it was too early for the office to be open, so I spoke to the fellow on call. Toby was not responding to me in the car, after I repeatedly called out his name. The doctor was too concerned for me to make the trek downtown, and asked for me to stop off at Good Sam ER which was closer by, on my way. I agreed, and just as I was pulling in the lot, Toby started vomiting again in the back seat, confused, fussy and incoherent. I ran inside and they took me back to a room to get his vital signs. They made a plan to get him some meds to help him feel better, in hopes that would make him want to eat. Obviously, they had no idea who this child was. That said, I was happy with the nursing staff, who quickly gave him a suppository of Tylenol, anti nausea medicine, and an injection of antibiotics to kick-start the battle with his ear infection.
Not one time did they check his blood sugar - even after hearing his whole history.
WHY DON'T PEOPLE LISTEN. WHY DON'T THEY BELIEVE OR TRUST ME?
I was checking it every hour, it had jumped up to 78 after the icing, but fell back down to 60 as we were being discharged from Good Sam. I packed him back in the car, and headed to Children's ER - my endo having called ahead to let them know we were coming, and how he should be monitored. Luckily, Toby drank 4 oz of Pediasure on the way there, feeling better from the meds he'd recieved at the first ER, I presume. This got his sugar back up to a normal level, and thank GOD, it stayed that way for the hours we were monitored there and discharged.
Why does Toby's body work the way it does?
I've spent a good part of an entry sharing with you what Hypoglycemia is, and how it has a terrible affect on his body, but I'm not sure I've told you a lot about the reason WHY he's hypoglycemic. So, Here Goes. Remember me telling you that where Toby's pituitary gland should be in his MRI, there was empty space? This is a result of it being deformed - completely missing the front (or anterior) portion. The pituitary gland is responsible for a whole bunch of really important things***:
| Where is the hormone produced? | Hormone(s) Secreted | Hormone Function |
| Pituitary Gland | GH (growth hormone) | Affects growth and development; stimulates protein production |
| Pituitary Gland | TSH (thyroid-stimulating hormone) | Stimulates the production and secretion of thyroid hormones |
| Pituitary Gland | ACTH (adrenocorticotropic hormone) | Controls adrenal production of cortisol which acts as an anti-inflammatory; maintains blood sugar levels and blood pressure. The most likely hormone, if deficient, to place a child in a life threatening situation. |
| Pituitary Gland | LH (luteinzing hormone) FSH (follicle-stimulating hormone) | Controls reproductive functioning and sexual characteristics |
| Pituitary Gland | Prolactin | Initiates and maintains milk production in breasts |
During Toby's hospital stays, it was concluded that his pituitary gland was producing an adequate supply of TSH and ACTH, however, was not producing enough GH. As a toddler, he shouldn't be producing a lot of reproductive hormones, and as a male, no prolactin. He is diagnosed with Isolated Growth Hormone Deficiency. Every year he will have to have labs drawn to be sure the other levels are functioning normally. If not, it would require additional hormone therapy.
So what is GHD?
Basically, growth hormone is secreted by the pituitary gland (often referred to as the Master Gland). The pituitary Gland is about the size of a pea! It is in a bony cave like area at the base of the brain. GH is the key to all cell growth and reproduction. It helps the body maintain a healthy immune system, helps balance other hormones and body functions, helps to maintain muscle tissue (including the heart and lungs), it is essential for the body to be able to use up and get rid of fats instead of storing them, and helps the bones regenerate cells to stay healthy and strong as well as grow.The anterior section of the pituitary gland has cells called somatotrophs. These cells make, synthesize and store growth hormone (a protein hormone comprised of about 191 amino acids). These are what Toby is missing, and why he's not producing GH.
The real problem with a growth hormone deficient child is not what we can see - Ie. Short Stature or low weight. It is what we cannot see. His height and weight are lowest of priority when treating his deficiency, even though as he matures, this will probably be of most importance to him.
- Because GH stimulates the pancreas and liver to cooperate with leveling blood sugar, lack of GH slows down this process and causes patients to be hypoglycemic.
- Untreated Growth hormone deficient children have a higher risk of cardiovascular (heart) problems leading to cardiac death in adulthood.
- Untreated growth hormone deficient patients as adults, have more fat, less muscle, higher risk of osteoporosis , cannot tolerate exercise well, and cannot metabolize (get rid of) fats causing heart and other problems.
- The majority of children are identified with growth hormone deficiency around the age of 5 (when first starting school) or early puberty years when the gaps between these kids and their classmates become really noticeable.
- We are so lucky we found this so early, and were able to start treatment as early as medically appropriate.
If I knew then what I know now.....
From this point on, now knowing what we know, anytime Toby is sick and not eating, he's at risk of another hypoglycemic episode - as his body's natural defense to prevent his from happening doesn't work. He was sick so many times as a baby, so many instances of him bottoming out, and I had no idea. I can't even begin to explain the gratitude I have to the Lord for watching over my son, protecting him, and preventing the worse possible outcome from happening.Yes, I now live a life where I'm constantly worried that even the slightest illness will send us spiraling out of control. But I'm taking these setbacks in stride, and using them as learning experiences for our future. I'm focusing on the positive. My son's exuberant love for me - shouting as mightily as he can when he sees me. Or the moment when he saw, clearly, for the first time. These are the things, try as I might, that I will focus on.
Thank you for following, and
Thank you for Listening.
Lindsey
***Medical information courtesy of the Magic Foundation. www.magicfoundation.org
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