Hi everyone, I’m so sorry to have been awol lately. I know I’ve been missing to you and mostly, I know I’ve MISSED YOU. You all are kinda my only friends anymore.
I just wanted to post a quick update. We completed my daughter’s out-of-state 2 week rehabilitation program and she is still dizzy. So no improvement in her condition at all.
I’m very disappointed that she still feels unwell, but I’m happy that they studied her so intensively while we were there. That’s exactly what I’ve been looking for a doctor to do this whole time and I couldn’t find one that would do it.
They were able to eliminate alot of the most common causes for her dizziness – most of which my daughter’s previous specialists had already been prescribing her medications for. They were able to rule-out inner-ear issues, dysautonomia issues (her body not regulating blood pressure correctly), vestibular migraine issues, etc.
I’m very upset that we wasted alot of time (MONTHS) with her other specialists that kept PUSHING treatments and drugs on us without thoroughly verifying that this was her problem. Like, why is it ok to prescribe blood pressure medication to a CHILD without verifying that she has a blood pressure issue first?! It’s not ok. When we told her first cardiologist that this medication wasn’t helping her dizziness, he offered to DOUBLE her dose before questioning whether this was the correct treatment. Obviously I didn’t go along with that because it didn’t make sense to me.
We had another doctor prescribe her anti-seizure medication to treat her dizziness. Obviously that medication didn’t improve anything for my daughter and even made her feel WORSE. When we reported that back to the doctor, he also offered to increase the dosage without additional evaluation. Absolutely not.
But at this rehab, they thoroughly evaluated her for everything. More so than any of her “specialists” did. And that’s exactly what I needed.
They’ve been able to pin-point several issues contributing to my daughter’s dizziness and it involves mostly her right eye and the right side of her neck. They found that she has vertical nystagmus and convergence spasms in her right eye. They found that the right side of her face is starting to droop (I did start to notice that on my own), and they found that she LEANS her face and body to the right side too. I didn’t notice that until they pointed it out to me, and yes she does. And they found that she has huge muscle knots on the right side of her neck. They said that those knots are probably contributing to compression on nerves and bloodflow to her brain-stem.
Dang. We noticed those knots on her neck before. We first saw them before covid – so maybe 3 YEARS ago. We were worried that it was the c-word (you know, bc we thought they were swollen lymph nodes) and we took her to 2 different pediatricians at 2 different practices just to be safe. Both those doctors told us not to worry about it. “Oh, it’s not the c-word. Just keep an eye on them and if they don’t get bigger then don’t worry about it.”
Well, they didn’t get bigger and my daughter didn’t have any other symptoms at the time, so we did kind of forget about them.
This rehab told us that her dizziness issue now may be due to a build-up over several years of her nerves/bloodflow being compressed to her brainstem on the right side – which matches with the issues she’s experiencing now with her right eye and the right side of her face/body leaning and drooping. And shoot – when you ask my daughter to describe her dizziness, this is how she describes it:
Doctor: “Are YOU spinning or is the room spinning?”
My daughter: “The room is spinning.”
Doctor: “Which way is the room spinning?”
My daughter: “To the right.”
I’m so ticked-off that I believed these earlier doctors that told me not to worry about it. I SHOULD HAVE BEEN WORRIED and I should’ve been pursuing answers 3 years ago! I just feel so betrayed by doctors. I feel like they all just dropped the ball. And we’ve been to a TON of doctors. All of them!
Anyhow, the rehab started physical therapy treatments to improve the eye issues and to release the muscle knots in her neck. They’re also ordering an MRI of her neck to see if there is a structural issue there that needs to be treated.
And that’s where we are now. She’s not yet feeling any better, and that’s all I want.