reply

[Guest guest]

Hi Jani, Nice weather we have for RA here in Wa.? Huh! Al R.

Al :-))

>>

>>

>>>Hi Al,

>>>

>>>I've been watching your postings with interest and have now labelled

>>>you:-)))

>>>

>>>You're what we call here a 'snag.' It's a very elite group of men who are

>a

>>>very rare breed indeed and one that I hope is growing in strength.

>>>

>>>That you are a vet does not surprise me, it fits perfectly!! <smile>

>>>

>>>

>>>Incidentally, I am appalled at how easily the vets in this country dish

>out

>>>large doses of steorids at the hint of even the slightest probleml. I

know

>>>that cats in particular tolerate them much better than dogs but are they

>>>really necessary, it seems to me that the vets use them as doctors

>do......

>>>as soon as they don't know quite what the problem is in the hope that it

>>>will boost the appetite etc. <frown>

>>>

>>>I'm a great animal lover and would have loved to have been a vet. I think

>>>there is so much we could learn from the animals if we just took the time

>>to

>>>quietly observe. And I also think that they are often much nicer than

most

>>>human beings!! <grin>

>>>

>>>You're a neat guy !!

>>>Warm hug,

>>>lisbeth

>>>

>>>PS Ohhhh you want to know what a 'snag' is...................just thought

>>>I'd keep you guessing for a while!

>>>

>>>Sensitive New Age Guy !!!!

>>>

>>>

>>>

>>

>>

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[Guest guest]

Ray,

Thanks for the site, I'll check it out. Unfortunately, I can't afford to

go to an experienced AP doctor at this point. I live in Canada and our

health care system won't cover treatment for anything that they feel you

can get adequate treatment for here and they consider giving DMARDs and

NSAIDs as adequate treatment. There is a somewhat more supportive doctor

than mine in my city so I'm investigating trying to get her to take me on

but we have a shortage of doctors (most of the good ones have gone to the

States) so it takes time to get a new doctor. I did occasionally have mild

arthritis symptoms for a number of years prior to my first real flare last

August so I don't know if that qualifies me to need the clindamycin or not

but that's another reason I'm trying to get this new doctor. She is the

only doctor in my city who will prescribe oral clindamycin if you aren't

receiving good enough results after 6 months, which is the only form you

can get it here. The one doctor who was willing to prescribe IV

clindamycin was threatened with loss of her license so no one else is

willing to try it. As for stopping the Minocin, I'm not ready to do that

yet, unless I get a pretty compelling reason to go that route but I

appreciate the advice.

Thanks,

a

REPLY

a, some of the symptoms you describe could be from the minocn:

See this URL:

-----------------------------------------

Minocycline Hydrochloride - RxList Monographs

Address:http://www.rxlist.com/cgi/generic/minocycline.htm

---------------------------------------

If I were you I would consider the following:

1-stop the minocin to see if these symptoms stop

2-Consider taking you and your mother

to an experienced AP doctor..like Dr in Texas or Dr Franco in Ca

has a complete list.

3-how long before the diagnosis did you have RA, because rheumatic.org

calls

for clindamycin for severe and long term

disease.

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[Guest guest]

Maybe a lawsuit to Alberta Healthcare for the careless prescribing of DMARDs

that have not been proven effective in a study?

Donna

Ottawa, Canada

Scleroderma, Raynaud's 01/95, AP 10/97

(My Story) www.compmore.net/~donray

REPLY

>

>a, some of the symptoms you describe could be from the minocn:

>See this URL:

>-----------------------------------------

>Minocycline Hydrochloride - RxList Monographs

>Address:http://www.rxlist.com/cgi/generic/minocycline.htm

>---------------------------------------

>If I were you I would consider the following:

>1-stop the minocin to see if these symptoms stop

>2-Consider taking you and your mother

> to an experienced AP doctor..like Dr in Texas or Dr Franco in Ca

>has a complete list.

>3-how long before the diagnosis did you have RA, because rheumatic.org

>calls

>for clindamycin for severe and long term

>disease.

>

>

>----------------------------------------------------------------

>Get your free email from AltaVista at http://altavista.iname.com

>

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>Have you visited our new web site?

>

>Onelist: Helping to create Internet communities

>

[Guest guest]

Hi ....Leanne here, You said Alyssa goes every 3 months to the Dr, Ethan only goes every 6 months, and at first he said he would see him yearly!...We didn't appreciate that, so every 6 months, It's so hard to know if something could go wrong in that time with his eye sight??? And even at his 1 year old visit, he seemed so *non-shalont* sp?....about it really, took a digital photo of him, looked at it and said how you could see the reflection of light in is pupils, and how good it was, he had 2 others in the room looking at him, basically just looking!...then we gave him a long list of words-conditions that we got from the bleph site, and read through it and said he didn't have any of that, but our concern's like other's are that what if it turns into one of things listed!...that's what confusing...what things does your Dr do with alyssa? and do they suggest every 3 months in blephs cases for appts???...Leanne

-- blepharophimosis Reply

- do you know of an ophthalmologist in Akl called ? Apparently has an interest in eye problem genetics at Akl Hospital. s surgeon in Rotorua has written to her ( V) to enquire about the blood tests re potential infertility & bleph. My doc also is going to get me some contact at the Genetic Counselling Services in Akl. Have u heard of them

Hi Maree, Alyssa sees at the Eye Clinic approx every 3 months to monitor her sight etc. She also sees Sloan at the same clinic who is her surgeon for the "cosmetic" (hate that word) side of things. She sees another lady who monitors Aly's vision in connection with the Duanes Syndrome she has. Duane's has made things a little more complicated because it affects the muscles and nerves in the eyes. We also keep contact but not regularly, Dr Salim Afftimos at the Genetic's Clinic (lovely guy but I think he only deals with children). There is another lady there who is a Geneticist. Salim seem quite up with BPES and keeps check on Aly's Development and can refer her to various departments should she ever need any more medical workers. It was him that Diagnosed Alyssa at 3 weeks old. It's great how all her 'specialists' work together and keep each other informed.

It will be the Genetic Clinic that will arrange blood tests etc and give you all the details.

If you are planning to come to Auckland, I would love to meet with you, let me know. I'm happy to give you my mb number. Let me know how you get on.

Have you seen anyone in Ak in the past for you or your daughter? Has your Surgeon in Rotorua dealt with BPES before you and your daughter?

Our GP (lovely lady) knows nothing about BPES or Duanes. We have totally relied on the specialists at the Hospital and this group for information and support. I am wondering where you've gotten the medical help from in the past for you or your daughter with BPES?

Regards,

[Guest guest]

Hi Leanne, I think I gave you some time ago details of the Dr's in Auckland. I wondered if you followed anything up to see if you could get a 2nd opinion?

Aly's specialists do a whole variety of tests depending on who we see. As I've mentioned she is perhaps a more complicated case having 2 syndromes therefore they monitor her very closely. I do perhaps think that you would benefit from a 2nd opinion if for no other reason that to put your mind at rest. I do know that Auckland Hospital have some of the best specialists in the country. Some of them come from private practices in Auckland.

As for the digital pic, Dr dims the lights and uses a small torch to get the same effect, amongst other tests. Have they ever dialated his pupils to see the 'back' of his eye's? This apparantly checks their vision.

blepharophimosis Reply

- do you know of an ophthalmologist in Akl called ? Apparently has an interest in eye problem genetics at Akl Hospital. s surgeon in Rotorua has written to her ( V) to enquire about the blood tests re potential infertility & bleph. My doc also is going to get me some contact at the Genetic Counselling Services in Akl. Have u heard of them

Hi Maree, Alyssa sees at the Eye Clinic approx every 3 months to monitor her sight etc. She also sees Sloan at the same clinic who is her surgeon for the "cosmetic" (hate that word) side of things. She sees another lady who monitors Aly's vision in connection with the Duanes Syndrome she has. Duane's has made things a little more complicated because it affects the muscles and nerves in the eyes. We also keep contact but not regularly, Dr Salim Afftimos at the Genetic's Clinic (lovely guy but I think he only deals with children). There is another lady there who is a Geneticist. Salim seem quite up with BPES and keeps check on Aly's Development and can refer her to various departments should she ever need any more medical workers. It was him that Diagnosed Alyssa at 3 weeks old. It's great how all her 'specialists' work together and keep each other informed.

It will be the Genetic Clinic that will arrange blood tests etc and give you all the details.

If you are planning to come to Auckland, I would love to meet with you, let me know. I'm happy to give you my mb number. Let me know how you get on.

Have you seen anyone in Ak in the past for you or your daughter? Has your Surgeon in Rotorua dealt with BPES before you and your daughter?

Our GP (lovely lady) knows nothing about BPES or Duanes. We have totally relied on the specialists at the Hospital and this group for information and support. I am wondering where you've gotten the medical help from in the past for you or your daughter with BPES?

Regards,

[Guest guest]

Leanne,

It is my understanding that dialating the eye is the only way to see how good vision is in infants/babies as obviously they can't read a chart, unless someone can tell me different? It is the eye specialist Dr who monitors Aly's vision. She had this done at 3 months (I think) and again at 12 months old. Thats how we know she has 20/20 vision. She put some numbing drops in her eyes and then some special drops (which sting) to dialate her pupils to enable her to look at the back of the eye and test her vision.

I assumed that this was the 'normal' thing to do with any child who 'may' have vision impairment. Can anyone comment on this?

Regards,

[Guest guest]

...No, he has not had this done!...I wil DEFINATELY mention this at his 18 month check! thanks:)

-- blepharophimosis reply

Leanne,

It is my understanding that dialating the eye is the only way to see how good vision is in infants/babies as obviously they can't read a chart, unless someone can tell me different? It is the eye specialist Dr who monitors Aly's vision. She had this done at 3 months (I think) and again at 12 months old. Thats how we know she has 20/20 vision. She put some numbing drops in her eyes and then some special drops (which sting) to dialate her pupils to enable her to look at the back of the eye and test her vision.

I assumed that this was the 'normal' thing to do with any child who 'may' have vision impairment. Can anyone comment on this?

Regards,

[Guest guest]

,

Liliana's opthamologist dialated her eyes to check them as well, but

we also had her vision tested at University Medical Center here in

Tucson, AZ by the doctors holding up cards that had a square of

black and white sripes on one side and nothing on the other side.

It was actually part of a nation wide study that recently got a lot

of recognition. The focus of the study however, was really focused

on another condition which Liliana doesn't have, but we have a

relative who was involved in conducting the study. Anyways, if the

stripes were on the left and she looked to the left at them then

they knew she was seeing them. If she looked to the right then they

could tell that she wasn't seeing the stripes. At some point the

children do have a hard time deciphering the stripes from the solid

color because the stripes progressively got thinner and closer

together as the test went on. They can test both the monocular and

binocular vision this way and can award you a score so to speak

(similar to 20/20). So we'll see if this method of infant vision

testing catches on, but it was a great help to us! We alreadly knew

that Liliana was seeing great since she's constantly a curious

little one taking in everything, but it was great to know the

results that Lili see's on the high end of what her age range

typically does. Plus we as parents could see exacly what the

doctors were seeing as to results or reactions, so it really put our

minds at ease and we didn't question the diagnosis. The study was

part of a study at the University of Arizona by a Dr. Dobson. Just

some info for ya, maybe we'll see this becoming more common in the

future! Have a great week!

-Suzy

--- In blepharophimosis , " bobjnr " <bobjnr@s...>

wrote:

> Leanne,

> It is my understanding that dialating the eye is the only way to

see how good vision is in infants/babies as obviously they can't

read a chart, unless someone can tell me different? It is the eye

specialist Dr who monitors Aly's vision. She had this done

at 3 months (I think) and again at 12 months old. Thats how we know

she has 20/20 vision. She put some numbing drops in her eyes and

then some special drops (which sting) to dialate her pupils to

enable her to look at the back of the eye and test her vision.

> I assumed that this was the 'normal' thing to do with any child

who 'may' have vision impairment. Can anyone comment on this?

> Regards,

[Guest guest]

...There is definately no problem's with his eye-sight, Ethan will do the same, he will see a tiny spot of something and try pick it up:), so we don't have concern's, we always point to things, near and far, he spots them no problem luckily:)...but will mention the drops to the Dr before his 18 month check so he can have it there for the appointment!...Look forward to some recent photo's of Alyssa:)

Leanne.

-- Re: blepharophimosis Re: reply

Thanks Suzy, actually your mail reminds me of some similar tests they did on Aly only recently. Including a 3-D Test for small children where they can tell that Aly could see the underlying picture because she would point to it on the card. Do you know what the other condition was that the study was about? These tests they did on Aly, was more in connection with her Duanes Syndrome rather than BPES.

I also wanted to mention one day when in the garden with Aly, she followed an ant on the ground with her finger, thought it was great fun. This also helps to give us assurance of her vision and from what distance. Perhaps something you might try Leanne to give you some assurance before his 18 Month check. Just a thought. About the pic, I don't have any recent of Aly at the moment but am working on getting some soon to share.

Regards,

blepharophimosis Re: reply

,Liliana's opthamologist dialated her eyes to check them as well, but we also had her vision tested at University Medical Center here in Tucson, AZ by the doctors holding up cards that had a square of black and white sripes on one side and nothing on the other side. It was actually part of a nation wide study that recently got a lot of recognition. The focus of the study however, was really focused on another condition which Liliana doesn't have, but we have a relative who was involved in conducting the study. Anyways, if the stripes were on the left and she looked to the left at them then they knew she was seeing them. If she looked to the right then they could tell that she wasn't seeing the stripes. At some point the children do have a hard time deciphering the stripes from the solid color because the stripes progressively got thinner and closer together as the test went on. They can test both the monocular and binocular vision this way and can award you a score so to speak (similar to 20/20). So we'll see if this method of infant vision testing catches on, but it was a great help to us! We alreadly knew that Liliana was seeing great since she's constantly a curious little one taking in everything, but it was great to know the results that Lili see's on the high end of what her age range typically does. Plus we as parents could see exacly what the doctors were seeing as to results or reactions, so it really put our minds at ease and we didn't question the diagnosis. The study was part of a study at the University of Arizona by a Dr. Dobson. Just some info for ya, maybe we'll see this becoming more common in the future! Have a great week! -Suzy > Leanne,> It is my understanding that dialating the eye is the only way to see how good vision is in infants/babies as obviously they can't read a chart, unless someone can tell me different? It is the eye specialist Dr who monitors Aly's vision. She had this done at 3 months (I think) and again at 12 months old. Thats how we know she has 20/20 vision. She put some numbing drops in her eyes and then some special drops (which sting) to dialate her pupils to enable her to look at the back of the eye and test her vision.> I assumed that this was the 'normal' thing to do with any child who 'may' have vision impairment. Can anyone comment on this?> Regards,