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Endocrinology

by Summerly Rowlands

Since Izzy’s labs on 11/20, she has gone back two more times (12/14 and 12/22). Both showed stable numbers, and although we are still giving meds, we have also been able to decrease the dose of her Calcium Carbonate after each draw! Izzy is scheduled for another round of bloodwork on 1/19/24 and her next endocrine appointment has been bumped up to February 26th. 💉

12/14/23
12/14/23
12/22/23
12/22/23

PS – She’s still blowing me away with her bravery at these blood draws! 🙌🏼

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On 11/16/23, Izzy had her regular endocrine visit and we learned that over the past year, she has gained 6 lbs and has grown 3.5 inches, which is amazing!

Unfortunately, with no reason as to why, Izzy also had a routine lab draw and her blood levels came back atypical. Her calcium presented low (which causes her seizures), her phosphorus was high, and her parathyroid was on the lower end, as well. Izzy’s endocrinologist called us right away when she got these results and ordered her to start Calcium Carbonate and Calcitriol immediately. Izzy’s levels have not been off since July 2021 when she was initially hospitalized and she hasn’t been on meds since October 2021 when her body proved it could stabilize on its own.

Following this, Izzy went in for a re-check lab on 11/20/23, and thankfully her calcium improved, but she will continue on the medicine and continue with frequent blood draws until we are told otherwise.

To be noted, Izzy was a freaking CHAMP for this lab visit – typically as soon as she sees the rubber band for the blood draw, she will use all of her power to resist and then gets herself into a hyperventilating panic. On this day, she didn’t cry once – instead she helped the phlebotomist, responded to her questions, and seemed to anticipate what was going to happen next. She was in the BEST spirits and proudly showed off her blue bandage, stickers, and toy car she received, and then requested to pose in front of the hospital Christmas tree. My sweet little doll baby 💗💗💗

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2 year old update: Izzy had another large blood draw on 7/7/23 to check the typical calcium, phosphorus, thyroid, and parathyroid hormone, but also for the first time she was ordered to have her growth proteins monitored. Growth protein levels are markers of growth hormone product in the body and the doctor wanted to check on these due to Izzy’s size. Everything came back in good range! (Phosphorus is likely high due to difficulty getting the blood which is frequently seen in young children so no concern!)

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Izzy had labs drawn on 3/13/23 to make sure she was okay to be sedated for her eye surgery. Her parathyroid hormone bumped up to 21, her calcium remained at 8.7, and her phosphorus showed a 6.4 which is a little high, but not enough for concern. All good to go!

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As of 8/8/22, Izzy’s parathyroid hormone (13 on a scale of 11-61), alkaline phosphatase aka vitamin D (174 on a scale of 134-315), calcium (8.9 on a scale of 7.6-11), phosphorus (6 on a scale of 3.4-6), and thyroid (1.71 on a scale of 0.7-6) are all in the normal range!

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1 year old update: Izzy’s calcium, phosphorus, and parathyroid hormone have all remained stable, so she’s still off of all meds!! She will continue with scheduled labs to monitor her blood levels and will also have her thyroid and Vitamin D checked in the near future as these need to be done once a year. Even with two slight hiccups in her immune system (February when she hit a 105 fever and April when she had flu-like symptoms), her numbers stayed well with calcium at 8.9 on a 7.6-11.0 scale, phosphorus at 4.8 on a 3.7-6.5 scale, and parathyroid hormone at 17 on a 4-61 scale.

Height, weight, and head circumference are all things that our endocrinologist will always keep an eye on as the 22q diagnosis causes Izzy to be of small stature, but as of her last appointment in May, our doctor is very pleased with her growth & absolutely adores our girl!

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As 2021 comes to an end, Izzy continues to trend in the right direction!

As of October 4th, she has been taken off all medications. As of October 11th, she was able to stop her prescription formula (PM 60/40) and switch to Similac Sensitive instead.

She has had 2 appointments with her endocrinologist and 11 blood draws since her discharge from Children’s on July 30th.

These labs have shown that her calcium levels are remaining stable and where they need to be without the help of medicine.

Her phosphorus levels still appear higher than they should, but her doctor eludes this to Izzy being a hard stick causing a difficult blood draw. She has been switched from heel pricks to venous blood draws in hopes that this will make it easier.

In regards to her parathyroid hormone, Izzy’s number remains on the lower end, but still in the normal range. It is a blessing in itself that her body produces any of this hormone at all.

Last endocrine appointment of the year was October 4th, last blood draw of the year was December 20th. Next appointments will start back up in January.