Prayer request: My child suddenly lost sight in one eye, may lose the other

My husband (Patrickhenryinva) and I ask for you to pray for our dear child. He's 13.

He might have an unusually-presenting glaucoma. The alternatives are even worse. If it's LHNO, he could lose the other eye in similar fasion before Christmas. He might also have a brain tumor.

Glaucoma is suspected because His intraocular pressure is elevated, and he has optic nerve "cupping" that is typical of glaucoma.

He has completely lost the central visual field in his left eye, though the peripheral vision is completely intact. Usually, glaucoma knocks out the peripheral vision and spares the central vision. Visual losses from glaucoma usually creep up on a person. His happened virtually overnight.

He came to me Thurday afternoon, inquiring about what the cloud that had descended over his left eye, obscuring his vision, might be.

Friday morning at the opthamologists, I realized he could see nothing. Refraction didn't help at all.

(TWo months previously he had a mostly perfect routine exam. His pressures had actually been borderline high but there was nothing else "wrong". Drops are not usually started with pressures like he had then, and I wasn't referred to an opthamologist, or given special advice.)

If it's LHON, which doesn't usually get higher pressures, but can have cupping and sudden onset and central field defects and pop up in kids his age, then if his case is typical he will lose his other eye in time for the new year, perhaps christmas.

The prospect of this is utterly terrifying and devastating. Some kids/adults only have the one eye affected, though. Sometimes their vision even comes back, sometimes completely!!!

He's going to see a glaucoma specialist thursday, with an MRI for the first part of next week to rule out tumors that can mimic glaucoma.

Prayer is so needed for my child. Please pray for him. There is hope. I'm praying alone right now.

Thank you for continuing to pray for Andy.

We saw the glaucoma specialist yesterday.

There is little good news, although there is hope.
Much to be apprehensive about.

He essentially ruled out glaucoma as a cause of his sudden loss of vision. In fact, he thinks the large cup/disk ration wasn't glaucomatous cupping at all, but the large cups are physiologic (a variation of normal anatomy).

His pressures were down from the medicine. THe doc thinks not only is the vision loss not from the pressures, but Andy might not have glaucoma at all (although he will keep him on drops and monitor him for same, and will see him again in a month for this issue).

What is clear is that Andy has some sort of non-glautomatous optic neuropathy, His neuroretinal rims, in fact, all the visible back of the eye, looked normal.

The worst possibility, LHON (Leber's hereditary optic neuropathy) remains on the table. The doctor looked me square in the eye when I asked and said, "this could very well be Leber's." There are sometimes subtle changes in the back of the eye with Lebers, but they are not there to be seen in all patients, and hard to see when they are there.

This disease has the potential to leave Andy with profound visual loss in both eyes. One eye now, the other soon. There are cases of strictly unilateral Lebers, but commonly the patient will lose vision in the other eye weeks to months after the other.

Prognosis for recovery of vision ranges from a dismally low 4%, to a fair shot (about 50%) depending on the specific mitochondrial point mutation the patient has. Still, even the people in the least favorable category do sometimes get return of vision, even complete return. It helps to be young at age of onset. Andy would have that in his favor.

It could be some sort of optic neuritis. His vision would probably come back part way or all the way if this is the problem. Andy hasn't had any pain, though, and neuritis usually is associated with pain on eye movement.

The neuritis could be a hint of a demyelinating disease like MS or Charcot Marie Tooth to go with it; or get MS down the road.

The MRI scheduled for next week will help rule this in or out, although leber's patients can have MRI's that look like a patient with MS.

He could also have a compressive lesion, as in, brain tumor, though the doctor doubts - his scotoma is not typical for that, and there are no other suggestive signs or symptoms. This possibility will be ruled in or out by the MRI.

It's remotely possible that he has a paranasal sinus disorder, with polyps compressing the optic nerve. THis isn't likely but will be ruled out by a visit to the otolaryngologist on Monday

THe "glaucoma man" had to pull strings, because all the pediatric neurologists in town had waiting lists a mile long. He's arranged for the office of a really good neurologist who is also a neuro-opthamologist to set up an appointment for early next week.

THe only thing that rankled was that the glaucoma man decided to *wait* an let the Neuro guy do the blood work, etc that would be part of a comprehensive work-up. I want to know YESTERDAY if Andy has any of the mtDNA point mutations associated with Leber's. There are studies recruiting RIGHT NOW , to investigate the use of neuro-protective drops to delay or prevent the other eye from going blind. So in my mind, time is of the essense, I don't want any window closed.

But I have to wait, he won't order the tests. I suppose it's best not to do them scattershot, but if I could get them done myself I would.

PatrickhenryinVA, my DH, has an even temperament and a positive outlook most of the time. Last night I saw him agonized, unable to sleep or keep back all his tears.

There is hope, but hope lies so close to despair.

Please pray for Andy. Please pray for us all.

thank you for the update. I wish you had better news to relate, still it seems quite promising that you are getting into the specialist early next week.

You are obviously on top of research and medical details, which is all to the good for you and your family. But don't let unfavorable statistics rock your world. Your son is young and resilient and you have many praying for him. Prayer works, Sarah. We've seen miracle after miracle here at FR when we join hands to surround patients with love, prayer, and all our good intentions. Rest assured that Andy is now in the center of a circle of prayer warriors who will hold him in God's healing light for as long as it takes. And you too. I pray that you and your DH will come through this ordeal with easy hearts and more love beteewn you than ever.

God bless!

You are welcome for the prayer, dear heart. Our Father loves you and your boy unconditionally. IMHO we always have the right to ask for everything, but to show respect and humility to our Father, we need to surrender our requests to his perfect Will. He truly is our Father and will not give us a stone when we ask for bread. But sometimes, like children we ask for sweet rolls and ice cream when we really need broccoli and salad....and if we are patient and compliant, the sweet rolls and ice cream or something better will come later!

I give thanks every day for the brothers and sisters he has placed here in this world to be with me. He has granted us the great privilege to be able to pray for one another during the hard times. Thank you for letting us know about this situation so we could all have the opportunity to pray for you. Please keep us updated.

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