Update on Hailey w/PLGG

[u/Pure_Pen_2610]

My 14 y/o has a suspected PLGG on her superior cerebellar vermis. She also has had syncope episodes. This week she had the TILT table test and her doctor said it is suggestive of POTS but not diagnostic of POTS. Her heart rate rose from 80 to 160 when she moved from supine to tilted up. Then dropped but stabilized. I have heard this is pretty common in pediatric cases. Her doctor is going to refer her to a dysautonomia clinic which I think will be helpful for her. Her cardiologist did not start her on meds which upset me, because right now she is on homebound from school because she keeps fainting. My goal is to get her back to in-person school. I am hoping her pediatrician will or the dysautonomia doctor will, but the wait time for that doctor is like 6 months (ugh).

The day after her Tilt Table Test, she told me she had an earache for two days, so we went to the doctor, because our life is doctors now. And her regular doctor was not there. She has fluid behind her right ear - effusion and bilateral retracted eardrums. She hasn’t flown or anything and doesn’t appear to have sinusitis or any type of cold. I’m guessing this is from the pollen invasion in Charlotte. Not sure. Anyway, poor kid can’t catch a break!

Her next MRI is in June and she will have her braces off by then. They will see if the tumor has grown. It was ill-defined 1.5 cm and t2 hyperintense and nonenhancing and they did not biopsy it or anything since it was an incidental finding. My dad, who is a doctor, is pushing me toward getting a second opinion when we get the new MRI in June. I see nothing wrong with getting a second opinion, but if it differs greatly from the opinion of our local Neurosurgeon then we will have some decisions to make. Where her tumor is there is a chance of posterior fossa syndrome, so I do think with lack of symptoms and the small size, wait and watch was the right choice even though it took me awhile to get to that place (and a lot of anxiety). Plus, I have never been a helicopter mom, and I feel like one now. I am in touch with the Pediatric Brain Tumor Association and that has been helpful.

Lots of love to you all. ❤️

[u/Porencephaly]

At least you are getting some answers about her symptoms.

If you are with Wait/Van Poppel/Henegar then you are in very good hands. I've heard good things about Bohl but I just don't know him. Perhaps your dad could come (or be on facetime) for her next neurosurgery visit. That might do a lot of good and I am usually happy to have a "medical interpreter" in the patient's family.

A 1.5cm lesion in the vermis would be pretty unlikely to cause posterior fossa syndrome in my experience, although it's never impossible.

[u/Pure_Pen_2610 → u/Porencephaly]

Yeah—I think my dad will come up for the June MRI. They usually come up in June anyway so the timing is right.

Answers are helpful for my anxious brain. And now that we are further out from initially knowing I’m not as worried. I feel like we are in good hands, and I have heard good things about the neurosurgeons in the group she’s seeing from my sister’s friends (also doctors). It helps to have doctors in the family, because it makes me more knowledgeable but sometimes my dad, especially, makes me more anxious about things. So I always have to do independent research and remember just because something could happen doesn’t mean it will.

She’s pretty stable right now, besides the syncope, and so that’s good. And I’m watching her like a hawk, which is every 14 year olds dream. 😂