Ryan - My two year old that suffered a stroke.

[AnitaH]

Hi,

I'm just a Mom that is confused by conflicting statements between Optometrists and Ophthalmologists. My son had a stroke in utero. Along with a host of other issues he has a visual impairment - he has an exetropia sp? His ophthalmologist says we need to wait until the measurements are consistent. His Optometrist prescribed glasses and we feel they are definitely helping; however, the Ophalmologist said his eyes had improved by 50% (the best so far) but don't use the glasses. They don't really help. Two Optometrists have told us to avoid eye surgery at all cost.

Not having a medical background makes the conflicting information very frustrating. :hammer: We do have an appointment with Storm Eye Clinic at MUSC this week and from what I understand they have begun studies on visual therapy for stroke or brain trauma patients. We want to do EVERYTHING possible to help our child. Is there something that you can see we are missing or something we should request at Storm? Also, any thoughts on Visually Evokes Response tests? Thank you so much for taking the time to read this!!

Anita

[Dave Nelson]

your questions are not appropriate for this forum. I do sympathize, and I admire you determination to do whats best for your child. Seek the services of the most highly regarded pediatric ophthalmologist in the largest urban center nearest to you and go from there. Good luck.

[rbaker]

Anita - I second David's message.

[AnitaH]

Sorry, I guess I just made the "stupidest question" list. Which I have to say doesn't increase my comfort level with the profession. It's hard to understand how that question falls within the scope of appropriate. Take care.

[chip anderson]

Anita:

You didn't ask a stupid question and our heart goes out to you. But you asked us. We are a bunch of optical technicians who do what optometrists and ophthalmologist tell us to do. We make glasses, fit contacts and perform other menial tasks and tests. We are not brain surgeons, we are not eye surgeons, physicians or diagnosticians. Therefore it's not appropriate to ask us such questions. Any answers we gave you would be pure speculation. You need a physician and a very good highly specialized one at that.

Chip

[AnitaH]

Thank you Chip and Dave. I'm sorry, obviously I have frustrations that go beyond this message board. Thank you for your time!!

[Johns]

AnitaH

Just because we can't help you in this forum, don't think that we don't care, or are not interested. Please take the advice of the others by getting the most competent help availble, but then, I'd invite you to keep us posted as to what is happening with your son's condition. While we can't give you advice, we could all learn a lot from this.

[chip anderson]

Anita:

I shall ask the Optiboard members the best Physician for his help and intervention for your son.

God help you all.

Chip

[Jubilee]

While I may not be able to answer your question right now, I do want you to know your son and family are in my thoughts and prayers.

On Monday, I will contact one of the most respected Pediatric Eye MDs here and see who he would recommend there.


Cassandra

[harry a saake]

Anita,m try contacting Dr. Erin Goshorn in Charlotte, north Carolina, i dont have her number handy , but its in the book and if your in SC, your not far away

[rep]

If Atlanta is closer, Please feel free to contact

ZANE F. POLLARD, M.D.

Specialty

Pediatric Ophthalmology



Board Certified

American Board of Ophthalmology, 1975

Eye Consultants Office Served



Children’s Healthcare of Atlanta at Scottish Rite, Atlanta, Ga.

Honors

Best Doctors in Atlanta, Atlanta Magazine, 1998, 1999, 2000, 2001.

Best Doctors in the U.S.A., 2001.

Authored more than 75 scientific papers on a variety of pediatric ophthalmology topics, including publishing the first paper in the English literature on a blood test for ocular toxocara (a parasitic infection of the eye); the first paper concerned with the surgical treatment of secondary angle closure glaucoma in newborns with retinopathy of prematurity; papers discussing tear duct obstructions in newborns; and papers discussing the rehabilitation of children with congenital cataracts.

American Association for Pediatric Ophthalmology and Strabismus, honor award, 1997

AmericanAcademy of Ophthalmology, honor award, 1998

Medical Memberships
& Affiliations:

AmericanAcademy of Ophthalmology

American Association for Pediatric Ophthalmology and Strabismus

American Ophthalmological Society

Georgia Society of Ophthalmology

Medical Association of Atlanta and Georgia



Community Service

JamesHallEyeCenter fellowship in Pediatric Ophthalmology, Atlanta, Ga., director, 1979-2002. This program trains two fellows each year; Dr. Pollard has trained 28 fellows.

Ophthalmologists from California, Texas, New York, Tennessee, Alabama, Florida, Pennsylvania, Indiana, South Carolina, Virginia, Louisiana, Arizona, Wisconsin, Illinois, Colorado and Montana have come to train in pediatric ophthalmology with Dr. Pollard.



Fellowship

WillsEyeHospital, Philadelphia, Pa.

Pediatric ophthalmology, 1974.



Residency

University of Southern California, Los Angeles, Calif. Ophthalmology, 1973



University of California, San Francisco, Calif. General surgery, 1968

Internship

University of Southern California, Los Angeles, Calif., 1967

MedicalSchool

TulaneUniversitySchool of Medicine, New Orleans, La., M.D., 1966

Honors: Alpha Omega Alpha national medical honor society

Undergraduate

Northwestern University, Evanston, Ill.




I have know him for over 20 years and if it were my child this is who I would go to.

Take Care,

Rep

[AnitaH]

Thank you all so much for your recommendations and especially your prayers!! I'm getting my list of questions ready for Storm at MUSC where we'll be going Thursday. They have started the Nova Vision Therapy for neurological sight problems. It's also called VRT (Visual Response Therapy or Training). If they will not consider this program for Ryan then I will be going to other doctors until I find someone that will do something other than wait for surgery. I'm willing to put in the work of doing the one hour daily therapy and the FDA has said that it is non-invasive so why not.

I do hope that Storm works out since that is where Ryan's wonderful neurologist is. If there ends up being surgery I would feel better if he were close to neuro due to his seizures, which are under control with medicine. If Storm doesn't work out his neuro has promised to be on call for the surgeon.

Thank you again for your patience and understanding!!!! For those that have asked to be updated I will post the results of Thursday's appointment and let you know how that goes. God bless!!

Anita

[Stopper]

As with many things, the answer sometimes lies in the middle. It doesn't have to be Vision Therapy vs Surgery. It may need to be both. I think vision therapy is a good place to start. find a good pediatric optometrist who specializes in VT(sounds like you already have). If VT doesn't solve all the issues, then surgery may be pursued. If surgery is needed you will be more likely to have a better outcome if you have already done the VT. I hope this info helps and good luck to you and your family.

Cheers

[Dave Nelson]

This person is already confused by the differing opinions between optometrists and ophthalmologists. I'm not "optometry bashing" but optometrists are not MDs, ophthalmologists are. There may very well be a place for optometry in the treatment plan for this child, but it should be through referral from the M.D. who has assumed responsibility for the treatment- not by the patients mother seeking such assistance independently.

[Stopper]

This person is already confused by the differing opinions between optometrists and ophthalmologists. I'm not "optometry bashing" but optometrists are not MDs, ophthalmologists are. There may very well be a place for optometry in the treatment plan for this child, but it should be through referral from the M.D. who has assumed responsibility for the treatment- not by the patients mother seeking such assistance independently.

The point I was making is that the therapy they are doing is an important first step if surgery is eventually needed (no matter who does it MD or OD). But VT has traditionlly been the domain of ODs (full discloser- I don't do VT).

[drk]

I do know that if you are not getting a stable measurement, there would be no good way to operate.

An optometrist saying "avoid surgery at all costs" is irresponsible.

While it's important not to waste time, there is still time at age two.

Most visual therapy at age two is difficult/impossible to perform.

VT is very helpful in surgical cases.

VT can replace surgery in limited cases.

Glasses may not help, but they may not hurt either: that's frequently up for discussion.

It's better to choose a professional as "boss" and follow their treatment plan, VS. playing the two off each other. Dave is right. Choose the Dr. you feel is best qualified to be primary.

Usually sub-specialist MD's have OD's they work with in some manner, and you may want everyone "on the same team".

[AnitaH]

Why Dave, I thought this was an inappropriate question. Just to clarify - I realize that I am his mother and not a medical professional. I wouldn’t independently complete any type of therapy nor will I just accept anything an MD tells me without answers to my questions. So far, the ophthalmologist (not all but the one that we’ve seen and many we‘ve heard about) completely dismisses anything that follows, “the optometrist said….” without even hearing me out. It scares me to trust my child’s health to someone that thinks they are above learning something new. That doesn’t mean I’ll write-off all ophthalmologists, just that I’ll keep looking for a better MD.

Everyone agrees that surgery won’t work right now due to continual improvements in his measurements - thankfully. And we have had more significant improvements since we’ve started therapy - simple things like adding the glasses, working on tracking side to side as well as objects moving away from and towards him. He self patches with his fist when he gets tired - pretty smart to figure that out. Maybe he’ll be an MD/OD all in one some day.

I do agree that it was not professional to say, “Avoid surgery at all costs.” But if we can avoid it by continuing to change those measurements I’ll definitely continue to try. One optometrist told me that she worked with an ophthalmologist that completely dismissed her - until his child’s vision was in trouble. Then he suddenly wanted to look into her therapy. She did tell me that we want to avoid therapy if possible but if he had to have surgery then the therapy would help the surgery to be more successful. With his seizures, we have more at stake than others when it comes to surgery.

Thank you all of your advice and concern. Your advice is helping get my list of questions ready for Thursday’s appointment - with an MD.

[orangezero]

AnitaH, you have stumlbed upon a very unfortunate side of eye care.

I am an optometrist, so take that for what its worth.

My concern with surgery is that it is permanent, for good or bad. Very generally, from what I have seen opthalmologists are very talented people with great understanding of disease, anatomy, and surgery. I'm not as confident in their ability to understand how the visual system works and develops as we age. Its unfortunate the public (and those in the optical industry apparently) sees surgical specialists as the last and best hope in visual development.

I am the first to admit, the difficulty is getting good evidence based science to backup claims of vision therapy successes. Ophthalmologists are trained to view VT as quakery because of the limited evidence, as are most medical docs, nurses, school teachers, etc.. However, I know many people that have been helped from VT. One of the docs I interned with had a VT heavy practice, and I visited several others in the area that were VT only, and the parents of those patients loved them and really saw life altering changes. I have an optometrist in town that does VT and helped my sister greatly. He was the reason I wanted to learn more about how eyes work.. I don't currently practice VT because of my practice setting.

I wish you luck in your son's development. I will say, I have a suspicion that some of VT's success is do to the fact that people actually are doing something active to help the situation. It needs to be a guided approach, but actually using the visual system in a constructive manner is better than nothing at all.

I hope this explains a bit about why you are getting differing opinions, and I didn't confuse you more.

[AnitaH]

Thank you Orangezero! You are exactly right about the "life altering changes." Every bit of Ryan's development is impacted by his visual impairment. Can you imagine walking when all you can see are blobs moving around with no real understanding of how or speaking without clearly seeing the lips on the blobs? Oiy!

"Quakery" was the attitude we received from Storm today. He did think the glasses were helpful. He said any type of visual training or visual therapy was a waste of time and money. I asked if it could harmful and he said, "No, just a waste of your time and money." Fortunately, it's my time, my money, and my child. I fully intend to continue working with him on the therapy the optometrist gives us.

Logically, what he is saying makes NO sense. Ryan has hypotonia (muscle weakness) from his stroke and his muscles need strengthening. He sees physical and occupational therapists to strengthen his body muscles and speech to help him use the muscles in his mouth - then why in the world wouldn't it make sense that the he needs help in strengthening and using his eye muscles?

I'll be talking with his pediatrician and neurologist in the next couple of weeks to see if they can help to clarify. I've also heard that there is an ophthalmologist that started out as an optotmetrist. It would be interesting to hear his view point. I would love to hear a live debate between the two professions.

As always - thank you all for listening and for your encouragement and advice!!

God Bless!!
Anita

[Cindy Hamlin]

Hello Everyone,

This is a friendly reminder to keep the thread on our prayers and good wishes for Anita and her son. Not to attempt to diagnose or offer up therapies to assist.

We have never seen nor do we know his history aside from the heartbreaking information that Anita has shared. She has told us that she keeps seeking other OD and OMD opinions and we should let them, who know all the facts make the best choices and suggestions for him.

Anita, I know at times it is frustrating and that you must feel powerless and your mind must be spinning as your heart is breaking, but we would be remiss if we offered any further "answers" for your son.

I wish you the best of luck and if the OB members wish to offer up more MD and OD names for her to consult, great. However, and it kills me to say this, we cannot recommend any further for her.

Anita, please keep us updated on your son's progress as I am certain with a fighter of a mom like you it will be triumphs! Every kid deserves a Mom just like you and what a phenomenal world we would have if that were the case.

Have you checked into support groups? Maybe it would help some of the hopelessness you are feeling to share with some like minded parents. I am sure you have a lot you need to share. I Googled pediatric strokes and found this site: http://www.pediatricstrokenetwork.com/. Here is a link to the on-line support group: http://www.pediatricstrokenetwork.com/joinpsn.html

All the best for you and your son!

[eyegirl]

I just wanted to say how happy I am to see you actively searching for information for your son. Ryan is very lucky to have you for his Mommy.

I cannot tell you about surgery or glasses, as I think that is more the area of your Ophthalmologist.

Do you see a difference in the way Ryan responds when he is wearing glasses?
Visually Impaired children do learn, just differently. I would encourage you to do google on Lilli Nielsen. She has a different approach to learning that I think you will find interesting. Her books are available but are hard to find. One of her books is named "Are You Blind?" She has about 5 or more books that I know of, and I think you would really benefit from learning about her methods.
This website is not really related to your situation, but you might find some resources that would help.... www.ropard.org
I wish you well with your appointment and please keep us posted! We will be thinking about you.


just curious? Has anyone done a Visual Function Battery? The reason why I ask is usually Visual Evoked Responses are done to see the brains response to visual stimuli, that is not otherwise detected in office.

[AnitaH]

Thanks Cindy and Eyegirl. I am a member of PSN. Ryan has had quite a few tests but I don't think he has had the visual function battery. We really do have a pretty good idea based on his responses what he is seeing. However, it does fluctuate so I would imagine that we could get different results on different days. We definitely can tell a difference when he is not wearing his glasses.

He is a complicated little guy. For a while we thought the seizure medicine (depakote) was making him listless, tired, and visually unfocused. We later realized by missing a few doses of zantac that it was the culprit. We changed from zantac (for reflux) to reglin and prevacid. Both of those can also cause drowsiness and dizziness. His vision is being affected by so many things - the stroke, seizures (thankfully they're gone), medicine, and common colds and viruses.

There is moderate nerve damage in his eyes but the ophthalmologist said that he had seen adults with the same level of damage end up with 20/20 vision.

Little man is tired so I had better run. As always, thank you!!! Please know that anyone that has been gracious enough to post advice that it will be used in talking with Ryan's doctors not to make rash decisions on my own. Please keep him on your prayer lists and I will most definitely be posting praise reports one day!!

God Bless!!!
Anita