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.

[SarahW]

Thanks for the reminder to keep a positive attitude. It's going to affect the way they treat my child.

[Lazamataz]

I pray that almighty G-d spare this child's sight and that no tumor is found.

[texson66]

My thoughts and prayers are for Andy, you and the rest of your family as well as the doctors, nurses, and lab techs attending Andy.

[MrConfettiMan]

I know they should do better, my son pays the price because they do not.

If you feel your son is not getting the care he DESERVES from one of his doctors, find another doctor. While I realize what a huge task that will be, at many levels, in the long run it will prove beneficial to everyone. Another piece of advice, if I may be so bold. Never look back on any decision you've made with regret. Don't play the "if only we'd done this differently" game. You can't change the past. Going there is only going to make you miserable.

I'm sure they aren't used to a parent who comes in asking about "telangectasia" and who knows that rhymes with "fantasia", or what to look for on the optic nerve head in order to rule certain disorders in or out. They clam up, in fact, and pretend I won't understand what they tell me.

I'm surprised to hear your doctors have calmed up when hearing how much you've learned in such a short period of time. While I'm obviously not a brain surgeon, I like to think I've amassed a pretty large amount of knowledge on brain tumors. My doctors are able to carry on a fairly intelligent conversation with me without having to explain every other word. I get the feeling they really appreciate it. That might send a few signals up about your son's doctors...in my opinion.

...so that insurance pressures never factored into any of the doctors decisions...

Do you know these types of factors are going into their decision making? I remember in your original reply that they wanted to do an MRI, possibly to rule out a brain tumor. I was VERY surprised when that wasn't done immediately. Did insurance come into play with that decision?

Depending on what his test shows today, and what I hear from the doctors today, we are going to go elsewhere for help, probably Johns Hopkins.

Might I gently suggest that regardless of what you hear today, you go somewhere--JHH is as good a place as any--for at least a second opinion. I'm a big fan of second opinions. In addition to my local doctors, I went to three other well respected establishments (JHH, Sloan Kettering, Brain Tumor Center @ Duke Univ) for other opinions.

Prayers continue. Joe (MCM)

[reagan_fanatic]

Don't give up hope!!

Prayers are going out for you both!

[lonestar]

I hope the best for you all.

[PGalt]

Thanks for the update on Andy's condition.

[Texas Mom]

Prayers for Andrew and for you. I know it must be frightening for everyone concerned...

[CaptainK]

Still praying for you. Second, and even third opinions, are always in order until the problem is solved.

[Texas Termite]

Prayers continuing for Andy and your entire family.

Please God, enable the doctors to find the answer to this young man's problems. Heal him, give him strength and give strength to those who love him so much. Bless this family and shower them with Your divine mercy.

Logan, Beth & Nana

[PoisedWoman]

Continuing prayers for Andy.

[TheCookMan]

Continued prayers

[SarahW]

I am very grateful for your continued prayers. Thank you for helping my child.

Today Andy sees the neurologist again. He was sceptical of the radiologists reading of the MRI films (she thought there was increased signal withing an enlarged optic nerve, the neurologist thinks that's due to Andrews head being tilted during the scan); I think he still suspects a retinal problem, though tests and examinations have not borne this out so far.

He's going to order mtDNA tests of Andy for LHON, a disease that could take the sight in Andrews remaining eye at any time, overnight. Leber's is rare, but all too possible for Andrew.
Knowing will help us prepare and plan in the worst case, maybe even give Andrew access to medicine that is being tested to delay or prevent loss of remaining sight;
and give us much more peace of mind in the best case of a negative test result.

We took Andy to the local Botanical gardens last night; it's decorated with a fantastic display of colored lights.
It was beautiful.

[countrydummy]

Prays are up!

[Texas Termite]

We continue to pray for Andy and for you and his dad.

*TT*, Beth & Nana

[M0sby]

We are still praying for you on this THREAD too! Thanks for the update!

 

Logan's Miracle Room

[68-69TonkinGulfYachtClub]

Continuing with my prayers.

[PoisedWoman]

Your trip to the botanical gardens sounds just perfect. I know your son appreciates all the positive things you are doing for him during these trying times.

I pray for Andy every day and for you, his dad, and his doctors. May the Great Physician heal and protect your son.

[Velveeta]

Praying for Andy daily.

[Texas Termite]

Andy remains in our prayers.

Any update?

Logan, Beth & Nana