Hi everyone!
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!
Iām glad you might finally have an answer
Thank you Tater! š
Oh goodness! Good luck with the surgery. When you started talking about dizzy spells I thought immediately of vertigo.. Had a bag bout of it a few years ago!! All the best and I’m sure you’ll keep us updated!! ā¤ļøšŖš
Thank you Bosssybabe! Shoot, I’m sorry you experienced issues with vertigo yourself… it seems very uncomfortable and intolerable. I hope all that is behind you now. š
What a strange journey you have been on! Thanks for the update. I hope she will be well soon!
Thank you so much Saymber! I appreciate you saying that. š
Yay!! For answers. Boo!! Scary answers. Hopefully she heals as quickly from surgery as I have and her body can get back to normal. Seeing our kids sick is heart wrenching
Thank you so much Kristie! The surgery seems to be scaring me alot more than her at this point. š
((Hugs)) The first surgery will be scary. The 2nd is a breeze because you know what to expect.
Oh gosh I hope that’s the case! š
Oh my gosh, what a series of confusing experiences!! I’m so sorry you are going through this and seeing your kid in pain. Great that you got to see a cardiologist and be informed with specific answer and treatment.
Covid has brought so much pain to many and the effects of it are varied and awful.
Hang tight and praying for safe surgery and peace of mind.
Thank you so much for the prayers, I’ll take all of them I can get! š
Prayers get us through a lot!! Hugs ~
Wow! I learned a lot from this post! You donāt realize how much information you grasp going through life until you recap it for someone who is new to it ;). Praying for you both!
Thank you so much Mamalava! I appreciate you! š
I was wondering if it was an inner ear issue when you mentioned neurological. Iām glad that you are getting some answers finally. Sheās so young to be dealing with fluctuating BP but hopefully the medications help regulate it. Make sure she stays hydrated as dehydration can make the dizzy spells worse. Does your daughter experience a quick drop in BP when she sits or stands up? Iām curious to know if it could be related to orthostatic hypotension. I would also suggest getting a Blood pressure cuff so you can check her BP at home.
What kind of foot surgery is she getting if you donāt mind me asking?
Hi Hilary! You sound really well-versed with some of these issues, have you experienced something similar? Yes, she’s having orthostatic hypotension issues (blood pressure dropping when she’s sitting-up or standing) and her cardiologist thinks it’s due to an autonomic nervous system issue. š I haven’t heard of anything like this before, so I haven’t yet met anyone that’s experienced the same. I’m hoping they’re doing well with it. That’s a good idea about the blood pressure cuff at home. I’ve had one at home because I have high blood pressure issues – but I can’t seem to keep the cuffs calibrated correctly so they don’t give accurate readings. What am I doing wrong? She’s having her accessory navicular bone removed in each of her feet; and the surgery is called the Kidner procedure. š
Hi Pepper Valentine! I have tinnitus in my right ear and suffer from deafness in that ear. Itās been ongoing since I was 13. I now occasionally get dizzy spells and have had 2-3 Transient Ischemic Attacks (TIAs) where one of them landed me in the ER. Itās like a stroke but without the stroke (same symptoms but not actually a stroke). Iām high risk for an actual stroke, scary stuff. My great grandmother died from a stroke. Iām always researching things which can be bad because I often rely on Dr. Google and end up convincing myself that I have cancerā¦..
In terms of medical conditions, I deal with patients with orthostatic hypotension and cardiological issues. Iām a registered nurse (RN) but It feels weird saying that since I feel like an impostor haha #imposter-syndrome is real, man. Iām not a medical Dr and will always tell my patients to their doctors first rather than take my advice/recommendations.
I donāt personally know anyone with this issue and the textbook alludes to ppl being paraplegics prior to experiencing what your daughter is dealing with. But your daughter isnāt disabled ā she plays sports, runs etc. so Iām here scratching my head wondering why itās affecting herā¦ Does she feel any numbness in her legs? I wonder if certain things could be triggering the autonomic response ā like dehydration for example. I donāt want to worry you or anything. I just wonder if thereās an underlying thing thatās triggering these bigger, more concerning things. The human body is very complex and interconnected in so many ways.
You arenāt doing anything wrong, Pepper. My daughter has a physical disability where she is blind in her left eye. She was born with a genetic condition where the retina completely detached in utero, so I carried a lot of guilt. It took us 3.5 years to learn that I passed on the gene to her (Iām asymptomatic and itās a dominant gene). I blamed myself for her condition and had a hard time bonding with her when she was a baby. But weāre doing better with bonding these days. I also stopped blaming myself. Sometimes $hit happens that we canāt control and sometimes our bodies do things that we canāt control. I think itās a mom thing to want to control everything and wanting things to go our way! š
No way you are an imposter! You’re actually SPOT-ON with more accuracy than several DOCTORS that physically examined my daughter! She saw several doctors and specialists before we found the one that suggested exactly what you did – the orthostatic hypotension. And you never even examined her. That’s pretty darn impressive to me and I want you to know that I think you are amazing, and I would prefer you taking care of my daughter over many of the doctors she’s seen in the last few months! You’re a rockstar in my eyes. And to many of your patients too, I would bet.
And again, you’re spot-on with your question about what would trigger this. Her cardiologist suggested that this could be triggered by many things – he thinks it may be due to her de-conditioning from sports (she quit everything active and became quite sedentary in June), but he said if her hormones are changing in her body right now then that could be a trigger too. Or there could be a combination of triggers, so we’re not exactly sure.
Ah, hang in there with your daughter. It sounds like you are wonderfully loving about her and I imagine that’s an unbearable amount of fear and worry to carry. I’m glad you both are doing better with bonding and that you’re not blaming yourself anymore. You’re so right about not having control and needing to make peace with that. I’ll be thinking about you both! I want to hug you! š
I hope things get betterā¦ that must be frustrating š¦
Thank you so much Greg for the well wishes! š
Sounds like an awful time. Great to read that your daughter is getting proper medical help now. Hope she’s feeling OK and that you’re doing well too. It’s horrible when it’s a problem with your children. Hopefully there’s a happy ending in sight soon!
Thank you so much! I appreciate you saying that. š
Wow! I’ve never heard of that condition. I’m so glad you might finally have an actual diagnosis. Hoping the foot surgeries go as planned and fixes everything up.
Thank you so much! š
Oh I’m so glad to hear you’ve managed to get someone to sit down, think hard, and propose not only a diagnosis but a treatment. I hope her meds make a difference soon. Hugs x
Thank you so much Smelly Socks! š
Things will get better soon…
The girl is gonna rock it again ā¤
Aw thanks for saying so, I hope! š
Best wishes for you and your daughter.
That sounds like a good explanationā¦ I hope sheās back to herself soon š