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 Post subject: Majax
PostPosted: Mon Sep 11, 2017 3:21 pm 
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Buddy this is definitely a thread with your name on it. ;-) Let me preface by saying that if something weren't up, I wouldn't recognize it as my own life. That said, this isn't about me personally. I would have put it in a PM but you never know who is reading 'out there' who might be in need of the same information. Here goes.


34 yo F, diagnosed with Kerataconus by optometrist. Told it was "a rare genetic condition". Is that true?

Options:

1. Do nothing. (Not an option)

2. Corneal linking: FDA approved April 2016. Non-invasive. B12 drops in eye to harden cornea. This is good? If the cornea hardens would the patient ever be a candidate for corneal transplant? Does this stop the progression forever? Is it a sure thing?

3. Cornea transplant. I know one person who has had this. It seemed relatively easy. Is it? What's best to do? Start with non-invasive and work toward transplant if that's an option?

patient wants to see at least 2 ophthalmologist at a large area eye center. That's what we have so far.

Comment please?

If you require a vow from me never to attack you ever again on this board so long as we both shall live, just let me know and you got it.

Thanks!

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 5:24 pm 
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Ok, this will take some thought.

Yes keratoconus is genetic. I wouldn't call it rare. I see plenty of people who are in different stages of keratoconus and I basically just work at a refraction mill.

Collagen cross-linking hasn't been proven effective enough to get insurance to pay for it, so as of now, it's out of pocket and around $2k per treatment. But as a corneal specialist once told me, if it's between that and having to face a corneal transplant later in life, it might be worth $2k/treatment to you.

I would recommend getting a reverse geometry rigid contact lens fit. Those aren't cheap and admittedly it's hard to find someone who will do them. That would be my recommendation for seeing better. Rigid contact lenses aren't comfortable but people can adjust to it given a couple weeks of committed determination. I doubt an ophthalmologist will have time to do this fit. If you give me an area I could ask my Facebook group for a referral to an optometrist who fits those lenses.

I would monitor the condition with an OD or MD who has a corneal topographer. If it gets bad enough, the cornea can actually rupture and the patient could lose the eye. So it needs to be monitored to know when a corneal transplant is necessary. Corneal transplant is still the last resort and you want to delay that as long as possible. They average about 8 years but I've seen plenty of unsuccessful transplants. That's assuming that you can even get a donor.

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 5:37 pm 
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Quote:
Collagen cross-linking hasn't been proven effective enough to get insurance to pay for it, so as of now, it's out of pocket and around $2k per treatment. But as a corneal specialist once told me, if it's between that and having to face a corneal transplant later in life, it might be worth $2k/treatment to you.


It is probably between this and a corneal transplant. I forgot about the lenses, that was discussed.

Do you have any idea how many treatments at 2K a pop it would take to remedy the situation? Can you ball park it with a range?

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 5:41 pm 
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They had an eye exam with an optometrist I'd say 6 years ago and told they had lazy eye. No mention of kerataconus. Can it develop that fast? Can it be easily missed?

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 6:10 pm 
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I really don't know on how many treatments and I don't think anyone knows for sure. But if it were me, that's what I would do as well as the Rigid gas permeable contacts.

How old is the patient. Sometimes it will improve after 40 yoa.

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 6:15 pm 
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Maxine Waters wrote:
I really don't know on how many treatments and I don't think anyone knows for sure. But if it were me, that's what I would do as well as the Rigid gas permeable contacts.

How old is the patient. Sometimes it will improve after 40 yoa.


34

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 6:37 pm 
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Another piece of information that I think may apply. This woman's eye was scratched about 5 years ago. It's the same eye that was scratched.

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 6:47 pm 
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One of the biggest risks of lasik being done on people who have corneas to thin to be good candidates for the surgery is corneal ectasia, which is basically keratoconus. I could see a scratch leaving the cornea thin and possibly allowing it to bulge. But the ophthalmologist who examines her would be able to make the best determination. The only other advice I could offer is to protect the good eye as much as possible. I know I'm stating the obvious but when other people get away with abusing contact lenses, saving a few dollars by refusing to change the lens or use proper solution, he/she needs to remember she has less chance of getting away with that. A small corneal scar on his/her good eye could be devastating. And make sure his/her glasses are made with polycarbonate lenses (something shatter proof).

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This liberal would be about socializing … uh, umm. … Would be about, basically, taking over, and the government running all of your companies.


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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 6:56 pm 
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Maxine Waters wrote:
One of the biggest risks of lasik being done on people who have corneas to thin to be good candidates for the surgery is corneal ectasia, which is basically keratoconus. I could see a scratch leaving the cornea thin and possibly allowing it to bulge. But the ophthalmologist who examines her would be able to make the best determination. The only other advice I could offer is to protect the good eye as much as possible. I know I'm stating the obvious but when other people get away with abusing contact lenses, saving a few dollars by refusing to change the lens or use proper solution, he/she needs to remember she has less chance of getting away with that. A small corneal scar on his/her good eye could be devastating. And make sure his/her glasses are made with polycarbonate lenses (something shatter proof).


Thank you. It's understood that a specialist is in order as well as the issue you raised about the appropriate type of contact lens. There won't be any cutting corners money-wise in this case. She'll have the best of whatever she needs.

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 7:12 pm 
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Majax,

When you posted about the safety rules for viewing the recent eclipse, no one could have been more surprised than me. For all the crap that gets thrown on you daily in this online community, you didn't need to do it. And yet, you did.

When this current issue came up, I knew exactly who to make inquiry to on this board. I appreciate the preliminary information that you have given me here. There is nothing more precious to me in my life than my people. You kindly gave me information freely that will help one of them, without expecting anything for it.

I'm going to give it you anyway because I have to do what seems right to me.

While I may attempt to argue points with you on this board, I will never again attack you here. That's forever. If you are ever in need of assistance sorting out behavioral or learning issues for a young child in your life, hit me up and I'll give you my best. Let me reciprocate in kind.

Thank you so much!

More than sincerely,
Jersey Girl

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 7:52 pm 
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Jersey Girl wrote:
Majax,

When you posted about the safety rules for viewing the recent eclipse, no one could have been more surprised than me. For all the crap that gets thrown on you daily in this online community, you didn't need to do it. And yet, you did.

When this current issue came up, I knew exactly who to make inquiry to on this board. I appreciate the preliminary information that you have given me here. There is nothing more precious to me in my life than my people. You kindly gave me information freely that will help one of them, without expecting anything for it.

I'm going to give it you anyway because I have to do what seems right to me.

While I may attempt to argue points with you on this board, I will never again attack you here. That's forever. If you are ever in need of assistance sorting out behavioral or learning issues for a young child in your life, hit me up and I'll give you my best. Let me reciprocate in kind.

Thank you so much!

More than sincerely,
Jersey Girl


Thanks Jersey Girl. And I'll absolutely need your help, I have a two year old who is starting her terrible twos now.

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This liberal would be about socializing … uh, umm. … Would be about, basically, taking over, and the government running all of your companies.


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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 7:52 pm 
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Maxine Waters wrote:
Thanks Jersey Girl. And I'll absolutely need your help, I have a two year old who is starting her terrible twos now.

Terrific twos!!!

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 8:14 pm 
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No parent can go wrong with the work of Dr. T. Berry Brazelton. Your baby was assessed using the Brazelton Neonatal Behavioral Assessment Scale at birth. I am trained by the Brazelton Institute.

Here's a good book recommend: https://www.amazon.com/Touchpoints-Birt ... +brazelton


Two years old thrives when sensory experiences are part of their every day life, particularly tactile sensory that calms and soothes, which helps to support emotional balance and provides much needed release of tension associated with frustration. Water above all else. Put cups and pitchers, cheap turkey basters with large bulbs that are easy to squeeze (Dollar Store) in the bath tub. Give her the garden hose, and let her water anything she wants, even herself. Fill small watering cans out of a bucket of water, show her how to do it herself (it'll take just one time) and let her water plants or whatever she wants. Give her an easy to squeeze spray bottle and a cheap mop from the Dollar Store to clean your kitchen floor, or a shower squeegee (Dollar Store) with the spray bottle of water (Walmart in the cosmetics section), and let her have at your windows or the refrigerator. Put small but sturdy buckets of water near the house or sidewalk, give her real house painting brushes (Dollar Store) to "paint" the house or the sidewalk with.

Water matters.
:-D

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 8:51 pm 
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I forgot that you asked for a location in reference to your Facebook group. I PM'd you some locations.

Thanks!!

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 10:04 pm 
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National Keratoconus Foundation Website

http://www.nkcf.org/

I requested a referral list for my state.

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 Post subject: Re: Majax
PostPosted: Mon Sep 11, 2017 11:40 pm 
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Jersey Girl wrote:
Majax,

When you posted about the safety rules for viewing the recent eclipse, no one could have been more surprised than me. For all the crap that gets thrown on you daily in this online community, you didn't need to do it. And yet, you did.

When this current issue came up, I knew exactly who to make inquiry to on this board. I appreciate the preliminary information that you have given me here. There is nothing more precious to me in my life than my people. You kindly gave me information freely that will help one of them, without expecting anything for it.

I'm going to give it you anyway because I have to do what seems right to me.

While I may attempt to argue points with you on this board, I will never again attack you here. That's forever. If you are ever in need of assistance sorting out behavioral or learning issues for a young child in your life, hit me up and I'll give you my best. Let me reciprocate in kind.

Thank you so much!

More than sincerely,
Jersey Girl

I am far from an admirer of Majax and most of his views, but I certainly agree with you that he deserves a lot of credit and thanks for his eclipse thread and the information he imparted to us on this thread. Good show, Majax!

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 Post subject: Re: Majax
PostPosted: Tue Sep 12, 2017 12:06 am 
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Gunnar wrote:
I am far from an admirer of Majax and most of his views, but I certainly agree with you that he deserves a lot of credit and thanks for his eclipse thread and the information he imparted to us on this thread. Good show, Majax!


You know what, I have learned to put myself "out there" in making inquiries such as this. You never know who is reading and thinking that something is wrong with their eye sight and maybe they'll look up this condition and get screened for it. I could have easily private messaged this to Majax but I chose otherwise.

I resigned my teaching position 4 years ago. I never stopped working. I work in 4 online medical support groups today 3 for adults and 1 for children. I started on those support groups from a patient perspective. I stayed because people helped me, they schooled me, and I knew I needed to give something back and that I could. I have a couple of little "specialties" that I address and otherwise offer emotional support. One thing I do is develop accommodations for learning experiences for young children in full and partial body casts. People want to know how to "entertain" their children, I show them how they can support their learning and also how to prepare children for surgery and casting. I love it!

That's why I put a post up like this. To get information for myself and so others can read it as well. I think it's important. This couldn't have happened without response from Majax! We might not share perspectives but all of us here have eyes.

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 Post subject: Re: Majax
PostPosted: Tue Sep 12, 2017 2:47 pm 
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Jersey Girl wrote:
Water above all else.

Well, you certainly could not have better timing. I have a toddler with a water obsession and I was just wondering about this. : )


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 Post subject: Re: Majax
PostPosted: Tue Sep 12, 2017 3:01 pm 
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canpakes wrote:
Jersey Girl wrote:
Water above all else.

Well, you certainly could not have better timing. I have a toddler with a water obsession and I was just wondering about this. : )


Mud is superb as well! Mud Puddles to stomp in, even better!! I've been known to give children the hose to create their own mud puddle. I highly recommend it and this:

https://www.amazon.com/Mud-Puddle-Munsc ... ert+munsch

If you can ever get the audio version, you won't be disappointed!

Older todds need a way to release the frustration and tension build up they feel when trying to learn how to function in this world. They are often limited in the ability to verbalize their wants, needs, desires and intentions. They aren't in a position to learn to negotiate (though I'd introduce it a bit but never make them share, they're not ready for it yet), they are overcome and so often overwhelmed by their own search for independence, they tire easily and then ultimately...they blow! <3

They literally cannot help themselves. Help them let off steam. Give them water and plenty of it. Let them go wild with it.

And go wild with them.

:-)

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Last edited by Jersey Girl on Tue Sep 12, 2017 3:05 pm, edited 1 time in total.

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 Post subject: Re: Majax
PostPosted: Tue Sep 12, 2017 3:04 pm 
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p.s. Take the word "no" out of your vocabulary. Instead of saying "No", figure out what's allowable or possible and say "You can do this!"

Always move in a positive direction and emphasize what "can" be done, not what can't be done.

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 Post subject: Re: Majax
PostPosted: Thu Nov 02, 2017 7:01 pm 
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I really felt compelled to bump this thread with an update.

You guys, I cannot tell you how much Majax's information (here and where you can't see it) helped in this situation. He did right by me, that's what I know.

The keratoconus journey is going to be long and not without stress or difficulty, however, these things were offered as solutions to the progress of this in both eyes.

Scleral lenses, corneal transplant, and possibly cross linking as an option. If cross linking isn't chosen, there will be 2 corneal transplants.

Majax supplied me with good information and a long list of resources and he wasted no time in doing so. I just wanted to acknowledge that publicly.

Because he did it.

Thank you, Majax!

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