Remember when I was really upset in November because my 10yr old daughter was severely sick and I was getting really frustrated by not having any answers despite visiting multiple doctors, specialists, hospitals, and even the Emergency Room?
Well… we MAY have an answer now so I wanted to post about it here so I’m not leaving all of you hanging.
My daughter started having serious dizzy spells that would last several days. The dizzy spells were so severe that she couldn’t sit up or stand up and she couldn’t attend school. The first time this happened was in August and we took her to the doctor and all they did was test her for Covid and when she had a negative result, they told us it was probably just another weird virus and she should rest it off.
It did go away by itself in about 3-4 days. So we figured it probably WAS a weird virus. Even though she never had a fever and I always thought viruses came with fevers. Hm…
Then it happened to her again in September. We took her back to the doctor and again, all they did was test her for Covid and when she had a negative result, they told us it was probably just that weird virus acting up again, that it probably never went fully away out of her system and it was just flaring-up again.
And it did go away by itself in about 3-4 days. So… we figured their explanation was plausible, but we were starting to doubt it.
Then it happened to her again in November. And this is when I started to freak out because there was no way I was believing this was a virus anymore. And she was completely non-functional during these bouts of dizziness, all she could do was lay around non-stop, and just broken-down by it all. Unable to do anything else. It was terrible to see your child like that.
We took her to the doctor again, and this time they referred her to a cardiologist specialist since they found that her blood pressures were dropping too low when she was sitting-up or standing-up. But the earliest appt I could get for the cardiologist was a month away! But who can wait that long when your child is seriously impaired and in distress?!
And this time she didn’t get better after 3-4 days. On day 7 with no improvement, I took her to an Urgent Care and the doctors there sent her to the Emergency Room.
Not much happened at the Emergency Room, except that they ran a bunch of tests and confirmed that she needed to see several specialists. They couldn’t get us a sooner appointment with a cardiologist, which ticked me off. But they did get me some sooner appointments with neurologists and ENTs to help rule-out other issues.
We had our appointments with the neurologists and the ENTs, and the best theories they had was that she may be experiencing migraines that present as dizzyness, or she might be having inner-ear issues. But none of those theories really made sense to me when I looked at her symptoms (kinda like the original “weird virus” didn’t make sense either).
And this time she was sick for a whopping 14 days in a row! So her issue was getting WORSE, not better.
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And just because it is necessary context, I’ll interrupt here with some background info you need to know.
My daughter was also previously a very successful athlete. She started gymnastics at 2 years old, and she started soccer at 3 years old. The last full year before Covid, she was on the #1 ranked competitive soccer team in our State for her age group. She was physically-active on a competitive level every single day of her life. Covid didn’t slow that down very much, because we live in a State that didn’t experience the strict lockdowns and her coaches were strict about the team’s performance.
But she started having serious pain in her feet in January 2021, which was being aggravated by the wear-and-tear of the competitive sports. By June last year, the pain in her feet was intolerable and she had to quit both gymnastics and soccer, per doctor’s orders. She’s been seeing a specialist for this as well, and they’ve found that she has an extra bone in both feet which is crowding out everything as it grows. It’s called the “accessory navicular” and they’ve tried everything to reduce the pain but at this point, there’s nothing left to try except surgical removal of the extra bone.
THEN, she started getting these dizzy-spells in August and we put all her foot-issue-stuff on hold.
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So we finally made it to her cardiologist appointment and here’s where we started to get some answers. He seemed pretty confident about this, and, his theory is also making alot of sense. He thinks she has a type of Dysautonomia, which is an issue with the autonomous nervous system and it’s affecting her blood pressure from being regulated correctly, especially when sitting-up or standing. It’s really scary to look-up online, so I don’t recommend it. But this doctor is doing a good job at keeping us pretty calm about it.
He thinks it’s been triggered by her sudden de-conditioning when she quit all her sports. And his treatment plan is to get her doing high-intensity exercise everyday again. She can’t physically do that right now with the pain in her feet, so we’ve resumed proceeding with her foot-surgery to get her up and running again. And, her first surgery is on Wednesday next week! They have to do one foot at a time unfortunately, to keep her out of a wheelchair during rehabilitation.
In the meantime, her cardiologist has her on some medication to help regulate her blood pressure until she can exercise again. But once she’s 100% active again, she should be able to stop the medication, which makes me really happy. I’m definitely adverse to her being on meds for the rest of her life, if we can prevent it.
So that’s the situation we’re in right now. I’m nervous about the surgery, but I see it as the light at the end of the tunnel. And I hope it does fix her pain in her feet!