eyesonelenka
Region: AU
Friday 31 July 2026 11:52:39 GMT
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Chasity :
Myasthenia Gravis..
2026-08-02 05:01:43
33
Maxine Uzumaki :
I literally work at an eye doctor's office. I will show whatever doctors are there tomorrow this video and see what they think, if you want!
2026-08-03 08:18:56
2049
Saro :
How is she 9 months? She looks 17 months
2026-08-02 12:58:31
573
Jane :
St. Jude’s if you can get in touch with them. They treat sick children free in the US
2026-08-02 16:04:25
396
eyesonelenka :
As a summary: Elena's tests so far: 4x MRI (including the most recent one specifically for the orbit muscles and 2x with contrast) - Lumbar Puncture - WES genetic testing - full body MRI and ultrasound - EMG performed - tested for Botulism - Liver and Kidney Functions plus several other blood tests to check for infections or any metabolic abnormalities - IVIG treatment to rule out Miller Fisher - Steroid/Pyrastigmine/Metabolic Cocktail/ Prednisolne/Fentolin trial - extensive ophthalmology eye structure health exam including pupil dilating drops (eye structure looks healthy) - Teller Acuity Cards Test to check vision - she has been seen by neurologists, ophthalmologists, neuro ophthalmologists, metabolic team - Her symptoms are: bilateral alternating ptosis and outward facing eyes with no range of movement, uneven dilated pupils with no reaction to light and nystagmus
2026-08-02 04:15:26
313
hopeinsecretplaces :
At 9mos she's got that many teeth and so much gorgeous hair?! 😳 We're still toothless and bald over here... 😕
2026-08-01 20:28:29
1096
_the_generalist :
Hey mama, we’re in Perth and my daughter also has an ultra rare neuro-ophthalmic condition, we can’t get any help for either. I can give you the email of a top NO who may be interested in helping. Good luck 🤞
2026-08-01 03:07:08
466
Grainne Bloggs :
try contacting moorfield eye clinic in Liverpool. they are world renowned and "enjoy" complex cases as a way to build further expertise. they developed the first cataract surgery for example which is now "routine"
2026-08-12 00:19:07
77
Sue B :
Some sort of neuromuscular weakness, Myasthenia
2026-08-01 04:37:04
9
jackielangwell :
Texas Children’s Hospital is the best in the World, plus there are 6 other world renowned hospitals with in blocks. The Texas Medical Center is the best place to be. Plus, they have the Ronald McDonald house which helps to provide temporary accommodations for families while seeking medical care there.
2026-08-01 18:15:42
69
sarahaltmann65 :
My son had/has ptsosis with limited eye movements and was diagnosed with Congenital myasthenia,could be a possibility.Good luck x
2026-08-03 07:13:27
37
pinkpapaya226 :
please look at chan's story, im no doctor but this looks similar to her
2026-07-31 20:41:49
74
Angela Seear :
There are some amazing eye doctors in New Zealand, you could try calling Auckland Eye (Auckladeye.co.nz)
2026-08-01 00:18:58
165
Gina :
she has glorious hair for 9 months old!
2026-08-01 04:31:36
67
codes97 :
Have you seen an Opthamologist? Please look into it, I think it may be Marcus Gunn Jaw-winking Syndrome, does the eye ever flinch or twitch when she stimulates the muscles in her jaw when drinking a bottle or sucking a dummy? Good luck finding an answer, that condition is when the CN V3 & CN III nerves are miswired on the side of the face causing one eye only to droop 🫶🏻
2026-08-02 07:59:10
9
St Daisy :
Also Australian. Maybe mould triggering an inflammatory response in the eyelids. Had this age 15, eyes completely swollen shut each morning when moved into a newly build extension of the house but wood beams exposed to rain during construction. Im sure you're trying everything and this seems dramatic but staying somewhere else and anti inflammatory food (e.g. no gluten or dairy. Goats milk formula or rice milk and goats cheese)
2026-08-03 08:25:45
9
Carrie Ann :
Have they checked her for Charge syndrome?
2026-08-25 07:44:50
0
Pink flowers :
My daughter had a rare eye cancer at the age of 10. Her Ophthalmologist from Auckland presented her case at the Australasian Ophthalmology Conference to see if any others could help diagnose it. Maybe that’s an option? All the best 🥰
2026-08-02 19:58:47
70
Milka :
God bless
2026-08-06 03:00:21
6
🌞 :
Maybe check out if tick paralysis could be a thing? theoretically a tick could have attached and then detached without anyone noticing (this is probably a weak theory but I'm just throwing it out there)
2026-08-02 15:20:17
44
francesmorgan750 :
Pretty and happy baby♥️♥️
2026-08-03 15:19:20
6
onthewei :
My kid has ocular myasthenia gravis, affecting the left eyelid muscle. Started at 6yrs old. Corrected with daily medication.
2026-08-01 08:46:35
62
user804199815071 shal :
Moor fields hospital London uk
2026-08-11 16:06:35
22
JennyLynn :
My nephew had something similar and it turned out the muscles collapsed and no known cause it just happens. It’s very rare.
2026-08-03 04:05:50
16
Carly Pyers :
Oh Mama this must be such a tricky journey for your family ❤️🩹 Your girl is gorgeous 🥰 We’re in QLD. My daughter was born with ptosis and had two surgeries in 3 years. Not suggesting our situation is similar to yours, just sharing some solidarity that there are other Aussie fams out there navigating eye challenges 🫶🏼
2026-08-03 10:06:39
10
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