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

11/17/01 | SarahW

[SarahW]

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.

[dandelion]

Dear Sarah, I am praying with you tonight. Father, I lift up my sister to you; your hand is upon her and her beloved Andy. I lift him up to your healing, your hand strong to save. You are God - I believe in You.

Help us to see your face even in the darkness, Father!! - In Jesus name...

[SarahW]

Thank you for your prayer.
Thank you for helping Andy.

I told him there were many praying for him, his eyes grew wide..."for ME?" His eyes shined - he was gratified, humbled and awed, and was
very grateful. He's such a sweet child, gentle and friendly. I can not imagine anyone more deserving of prayers.

Prayers are helping his parents get through this time of uncertainty, as well.

Thanks and God bless you.

[TheCookMan]

Prayer bump

[BriarBey]

Prayers to you and your baby SarahW, may God strenghten and sustain you in this hour of need.

[bootless]

Sarah, thank you for the update. I continue to pray for you all. God bless you and keep you...

[jocon307]

"I'm praying alone right now."

This could be a long story, but let me just say, you are never praying alone, no matter how much it might feel that way. Some teenagers on a Brooklyn subway told me that years ago, and I have learned it is true.

[Pegita]

Heavenly Father, we return to give You thanks for the godly love You have given this Mom and Dad, as they weep and pray over their boy. We join them in petition, Lord, that You would touch Andy and restore his sight. There are so many horrendous possibilities as to cause, but I pray that the diagnosis would be the one that is the least threatening. Thank You for opening up a way for Andy to be seen quickly .. turn this time of fear and dread into hope and anticipation for all the many blessings You will bestow upon this family. Comfort their hearts, O God, I ask in the Name of Your Son, and for His Sake, Amen ...

[SarahW]

I would like to hear "the long story" ") if you ever get the chance.

I confess I did feel very alone in my prayers, but how quickly that feeling ended. The power of those prayers offered here has been a tangible force, its like a cushion of light, like the beating of angel wings holding us up.

I am so grateful to all who have aided my child, my whole family, with prayer.

Today Andrew sees the neurologist/neuro-opthamologist. The exam today will also have to be put in context with the imaging studies (MRI) that takes place tomorrow afternoon, and probably quite a few other tests.

Any information gained today, I will add to the thread.

[hapc]

You got it.

[SarahW]

We got back from the neurologists a little earlier this evening.

If possible, I am more in the dark and confused than ever.

The neurologist says I need to be referred to a retina specialist, because he sees something amiss with the macula in Andy's affected eye...the same macula the *first* doctor pronounced "perfect". (In surprise, almost.)

She looked and kept looking at his angiograph photos, and could find nothing wrong with the macula at all.

The glaucoma specialist didn't find anything remarkable, either; he was convinced Andy had a neuropathy.

The neurologist went as far as to tell me to cancel Andy's MRI !!!!

I'm not sure I want to, yet, however. I just finished reading that a leaking optic nerve can give a macula a raised or swollen appearance. I'n lebers exudates can show up on the macula.

I feel like a ping pong ball, one with a bad migraine. Will the next specialist be able to finally get to the bottom of this? Or will I just get bounced some more?

The prospect of Glaucoma still is stinking up the joint.
The resident didn't like it that the glaucoma specialist told me Andy's pressures might be normal (for him). Positively indignant about 23 being "very high." She said his neuroretinal rim was pink, but was thin, and that there was a pale excavation consistent with atrophy.

The neurologist who followed up said, conferring with the resident at his side, that he did not really see the pallor she was referring to. He did note that the macula was raised, an apparently had some sort of dots on it he would not explain to me, and he would not give me the names of any specific conditions it might be caused by.

He didn't seem to know as much about Leber's as I (secretly - GOd forbid I display any cheek on that front) do. He kept saying things about the "classic" presentation, which half the time aren't present at all, wrong ideas about the age people get it, and let on that he
had seen maybe four to six cases in his career. Which left me uneasy.

I'm confused, exhausted, and worried about what the macular condition could be. Some macular problems affect both eyes, starting with one, then the other. Is all hope of saving the other eye gone?

Is this a red herring? Does he have macular swelling from an optic nerve problem after all? Did he, a myope, get a detachment because the drops lowered the pressures and the vitreous pulled away? Did the nerve layer separate? Is this a new problem on top of other problems?

I have no peace, no rest, no understanding.
I don't think we're going to be able to keep thanksgiving with the family, how dissappointed he will be. If we can go, then it will be a huge last minute rush to get ready.
My washer is broken and I have no time for the laundromat.
I don't even have groceries to make our own meal, and I won't have time tomorrow to get any if I am able to get him seen by a retinal specialist in the morning, and go ahead with the MRI.

I thank God I have the resources to keep going till we get an answer. Thank God for all who pray. I think Andy is going to really need those prayers.

[Texas Termite]

Sarah, we are praying so hard for you and Andy and his dad. Please know that we will not stop being with you in prayer until this is resolved.

It is so frightening during the diagnosing period with something like this. It seems like nothing is being done!

We pray for Andy, for God's miracle to heal and restore his sight, and for strength for you and his dad during this terrible time for you. We pray for guidance for the medical specialist to find the cause quickly and treat it accordingly.

God bless you all.

Logan, Beth & Nana

[dead]

Oh my, that is just a horrible situation you are going through.

God bless you, and I hope everything works out for you, your son and your family.

[pax_et_bonum]

Heartfelt prayers still being sent your way

pax

[tiki]

Continued prayers.

[r9etb]

You and Andy remain in my prayers.

But I think you need to confer with some different docs.

Joe: see #350. I know it's not the same thing you've had to deal with, but I do remember your descriptions of how you went in search of doctors. Any advice for Sarah?

[SarahW]

First, Happy Thanksgiving. I give thanks for all of you and your prayers.

Still no diagnosis...

(long section of my bad attitude deleted)

The neurologist might be right that a macula problem caused vision loss, but the retina specialist could NOT confirm it today. He didn't see any optic pit on the nerve head, or elevation of the macula or detachment.

The neurologist was suspecting serous macular detachment secondary to the pit, perhaps due to congenital schisis or schisis like lesion. The pit would be a congenital abnormality. Actually only the resident saw a pit, per se. The neurologist said out loud (to her) that he didn't see it.

The retina specialist, if I understood him correctly, saw neither pit nor an abnormal macula. He thinks the macula looks normal. I'm not sure if he thinks the optic nerve head looks abnormal (just no "pit")
He's going to review the original angiogram and call if he spots an abnormality. He's ordered another type of scan for the macula that will give him more info, perhaps revealing an elevation of the macula, or other abnormality.

The only thing I know about that is that even experienced retina specialists can have trouble spotting certain subtle macular changes in a regular eye exam. So the test makes sense to me, even though the macula looked perfectly normal to him today. That test doesn't happen 'til next Wednesday afternoon

The back-and-forth has me confused and baffled. Plus the doctors are getting annoyed with me for asking so many questions.

Andy DID have his MRI,
the retina specialist thought he should (though he expects it will be normal). Even the neurologist said this morning that if he could get a retinal exam AND get the MRI today, to "go ahead" (not what I heard last night; I have a feeling he dones't want to step on any professional toes.)

So we did.

This time, I felt the presence of all those praying. You helped him get through the test.


Andrew was afraid of the machine, the tight space (it was an open sided machine but still quite tight) and the noise,
but he conquered his fears and was able to calm himself. I held his hand for the first 45 minutes.

He needed an injection of contrast medium for the last 10 mintues. I was apprehensive, as the nurse was having trouble finding a vein...she tried the other arm for a better "pick"...I prayed. I bowed m y head and silently asked God to hear all those praying, and to send angels to help them both and make it go easily.

Then it was in, Andrew didn't flinch. She pushed in the medium and he didn't complain = he gave me a thumbs up - He got through it like a trouper.

I have copies of the films, but I can't get a copy of the preliminary reading or transcripted reading unless the Doctor ok's it....monday afternoon at the earliest.
I peeked of course.

I can't see anything obviously wrong, like an arrow through his head, or a lost dog toy (about my level of skill)although there were some interesting asymmetrys that I wish I knew were normal.

I'll be relieved to get the results.

[T Wayne]

God Bless!

Added to prayer list!

[jwalsh07]

Sarah, my granddaughter and I lit some candles, a Catholic thing :-}, and said our prayers for you and your son.

We will keep Andy and your family in our prayers. God bless.

[Judith Anne]

May your son be blessed with perfect healing, in the name of Christ, I beg Him to grant this.

[Route66]

I'll also be praying for your son and your family.