Transient monocular blindness 8 years old eds hypermobility type

[Marcy]

Trying to find some answers.

My son is having episodes of blindness in his right eye. He describes it as a curtain coming across his eye. It has only lasted about three minutes and then he can see. It happened four times in one week. He then had blurry vision in the same eye for about six hrs. At this point I took him to an ophthalmologist on call at the er who said he did not have any retinal damage he didn’t really say anything else as I told him my son had an appt with his own ophthalmologist in a few weeks.

So this Monday we went to his ophthalmologist, he assured me it is not his retina as if he went blind the vision would not return. He told me there is something going on vascular in the brain. So he would like to refer to children’s ophthalmologist.

I am hoping this is just a vasospasm, as he has had some pretty weird things happen, like his legs up to his groin turned Barney purple. It started in his toes and I watched as it moved all the way up his leg. With this episode he had felt faint and I was holding him on the floor, he had a massive headache and I could not move him. At his last paediatric cardiologist appt, the dr didn’t think it was a big deal, just said there is nothing wrong with his heart, that is a periphery issue. He has other autonomic dysfunction issues, including regulating his body temperature, and has fainted. He recently had a holter monitor and his results were normal.

When the blindness has occurred he has never gotten a headache or any flashes of light or anything that points to migraine. He just said it was a curtain lclosing.

Has anyone experienced this before?

Thanks

Marcy

[Barbara]

Hi,
Sorry I can’t help give you insight to the blindness issues, as the only ‘loss’ of sight as such, that I’ve experienced has been fading colour – I’ve had lots of other sight issues, like double vision, blurriness etc but no actual loss of sight.

Regarding your sons leg issues, I have had the purple legs, which led to being diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome). It came with much leg pain. I noticed my “Pulse Pressure” (which is the difference between the two BP figures, i.e. Systolic – Diastolic) was a related factor too, being very low when I had this ‘purple-leg’ symptom and pain.
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!

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