Re: Muscle tone/head tilt

[Guest guest]

My Micah also has very low muscle tone - facial and

full body. I guess a good way to explain that would

be body wise he is VERY flexible. OVERLY flexible.

In some children you might notice they can move their

legs any which direction and it looks like they are

very flexible, but that is really low muscle tone and

is not necessarily a good thing - most physical

therapists work to correct that.

Facially, Micah used to drool a lot and that can be a

sign of low muscle tone in the face as well. I asked

our doctors if that is common in bleph patients but no

one seemed to know. I have been working on exercises

with him to strengthen his little body. Gymnastics

classes for the body - lots of chewing gum and chewy

foods to work on facial muscles. It seems to be

helping a lot. Micah is also completely double

jointed - he can bend his elbows, knees, fingers

backwards and thinks it is very funny. LOL!

I saw some posts recently about the head tilt. I can

tell you in the videos of Micah before his sling

surgery he seemed " clumsy " . He tilted his head back

so far to see that he was limiting his periferal

vision and therefore bumping into things or knocking

things over. This corrected immediately after his

sling surgery. Another difference I noticed was in

fine motor skills. In a video where he was trying to

manipulate a small toy, it was hard for him to tilt

back far enough to see it and still look DOWN to play

with it. Since his surgery I have noticed a huge

difference in small motor skills, especially drawing

and coloring.

Just our experiences, of course. But I know the

slings in particular made a huge difference in Micah's

life. Also, our doctor here told us waiting to do the

surgery can lead to a " lazy eye " . Does anyone else

have info on that?

Best to all of you,

April Eisele

--- Beth Mullane <srmrmm@...> wrote:

> Dear Leah,

> Hello, my name is Beth. My son is 2 years old.

> He had his 1st surgery at 5 months. Your note

> caught my eye because of your mention of Ethan's

> lazy eye and muscle tone. Its hard to tell so soon

> in 's 2 years but he just feels different than

> his sister with regard to muscle tone. Could you

> please explain what in particular you mean when you

> say low muscle tone? Also, has a lazy eye like

> Ethan. His Ped Opth Guy had us put a patch on his

> " good " eye just recently. All day every day for the

> last 2 weeks. One week to go then we check his

> vision in the lazy eye again to see if the vision

> has improved. Whats next? Who knows. We will see

> at his Oct. 4 visit.

> I look forward to hearing from you soon.

> Beth

>

> leah Forsyth <leahs_male@...> wrote:

> HI all .. tis Leah here from Hastings , NewZealand..

> I have Ethan with BPES whose 6, he had his surgery

> at 2 years. I found a msjor problem with him having

> to tilt his head to see because they are seeing that

> eye level stuff they cannot also see the ground

> where they are walking as well and continually trip

> over anything left on the ground. I also agree that

> it MUST sooner or later affect their neck etc and

> not to mention that it poses more of a self

> conscious look when in the company of other

> children. I thinkyou should be pushing for the

> surgery to be done within the first 5 years if you

> can especially before your darling starts school. I

> havent posted a note for ages but read all the posts

> every day. Ethan still has his problem with low

> muscle tone and is still in nappies which i am

> finding VERY tiresome. He had a little accident also

> yesterday whilst in the care of his Dad. His Dad was

> swinging a plastic bat to hit a swingball and copped

> Ethan fair and square in the right eye. So

> he has a cut down the side of his eye, cannot open

> the eye which is swollen up like a golf ball, so

> today we went for xrays to see if any damage has

> been done to the eye, hopefully when we get the

> xrays back from the specialist all will be ok. But

> it makes life rather hard for him trying to just use

> the one eye, which is also his lazy eye!!! the only

> benefit is that hopefully it will strngthen the lazy

> eye somewot. Life is fun here!!!

> Well must away. You are a great network of support

> for each other and i feel very proud to belong to

> such a caring, kind group.

> Re: blepharophimosis Re: Daughter with

> BPES

>

>

> Tilting there heads back for so long ....WILL LEAD

> TO MAJOR BACK AND NECK PROBLEMS IN THE FUTURE...seek

> other advice on that.

>

> bethgordon03 <bethgordon03@...> wrote: I live

> in VA. My daughter is 14 months, I am 35.

>

> Tilting the head back is really hard to " unlearn " .

>

>

>

> > I've been reading the posts since my daughter was

> born in March

> > 2005. She did not open her eyes at all until she

> was about a week

> > old. We took her to a Pediatric Opth. and he

> didn't tell us much

> > except that she had blepharophimosis which was a

> fancy word for

> small

> > eye openings. I immediately went home and

> starting searching on

> the

> > internet and have learned a lot since then. We

> took her back when

> > she was 5mths and I went with a copy of an article

> on BPES and

> > asked " Does she have this " . Of course he said yes,

> but he actually

> > recommends no treatment until she is 12 or 13 yrs

> old. He basically

> > said as long as she can learn to tilt her head

> back, which she can,

> > she will be fine. As of now, her vision seems

> fine. She does open

> > one eye more that the other. I'd like to get a

> second opinion and

> > would be willing to take her anywhere there is a

> MD who specializes

> > in BPES, or is more familiar with it. We live in

> East TN. Is

> there

> > anyone in the group who has a MD in TN, KY, GA,

> NC, or SC?

> > I have learned a lot from this group, read the

> posts almost every

> > day. I appreciate your support you all have for

> each other. It is

> > really difficult to deal with this some days. She

> is the first in

> our

> > family. She is a beautiful little girl, so happy

> and developing

> > fine. She is our little miracle as it took us 3

> years to have her!

> I

> > just want to do all that I can for her.

> > Thanks a lot!

>

>

>

>

>

[Guest guest]

We were also told that waiting on surgery could lead to lazy eye (50-50 chance) - one more reason we decided it was in Rowan's best interest to have the surgery sooner rather than later.

Kim

--------- Re: blepharophimosis Re: Daughter with> BPES> > > Tilting there heads back for so long ....WILL LEAD> TO MAJOR BACK AND NECK PROBLEMS IN THE FUTURE...seek> other advice on that. > > bethgordon03 <bethgordon03@...> wrote: I live> in VA. My daughter is 14 months, I am 35. > > Tilting the head back is really hard to "unlearn".> > > > > I've been reading the posts since my daughter was> born in March > > 2005. She did not open her eyes at all until she> was about a week > > old. We took her to a Pediatric Opth. and he> didn't tell us much > > except that she had blepharophimosis which was a> fancy word for > small > > eye openings. I immediately went home and> starting searching on > the > > internet and have learned a lot since then. We> took her back when > > she was 5mths and I went with a copy of an article> on BPES and > > asked "Does she have this". Of course he said yes,> but he actually > > recommends no treatment until she is 12 or 13 yrs> old. He basically > > said as long as she can learn to tilt her head> back, which she can, > > she will be fine. As of now, her vision seems> fine. She does open > > one eye more that the other. I'd like to get a> second opinion and > > would be willing to take her anywhere there is a> MD who specializes > > in BPES, or is more familiar with it. We live in> East TN. Is > there > > anyone in the group who has a MD in TN, KY, GA,> NC, or SC?> > I have learned a lot from this group, read the> posts almost every > > day. I appreciate your support you all have for> each other. It is > > really difficult to deal with this some days. She> is the first in > our > > family. She is a beautiful little girl, so happy> and developing > > fine. She is our little miracle as it took us 3> years to have her! > I > > just want to do all that I can for her.> > Thanks a lot!> > > > >

[Guest guest]

Thank you April Eisele.

Bethapril Eisele <aprileisele@...> wrote:

My Micah also has very low muscle tone - facial andfull body. I guess a good way to explain that wouldbe body wise he is VERY flexible. OVERLY flexible. In some children you might notice they can move theirlegs any which direction and it looks like they arevery flexible, but that is really low muscle tone andis not necessarily a good thing - most physicaltherapists work to correct that. Facially, Micah used to drool a lot and that can be asign of low muscle tone in the face as well. I askedour doctors if that is common in bleph patients but noone seemed to know. I have been working on exerciseswith him to strengthen his little body. Gymnasticsclasses for the body - lots of chewing gum and chewyfoods to work on facial muscles. It seems to behelping a lot. Micah is also

completely doublejointed - he can bend his elbows, knees, fingersbackwards and thinks it is very funny. LOL!I saw some posts recently about the head tilt. I cantell you in the videos of Micah before his slingsurgery he seemed "clumsy". He tilted his head backso far to see that he was limiting his periferalvision and therefore bumping into things or knockingthings over. This corrected immediately after hissling surgery. Another difference I noticed was infine motor skills. In a video where he was trying tomanipulate a small toy, it was hard for him to tiltback far enough to see it and still look DOWN to playwith it. Since his surgery I have noticed a hugedifference in small motor skills, especially drawingand coloring.Just our experiences, of course. But I know theslings in particular made a huge difference in Micah'slife. Also, our doctor here told us

waiting to do thesurgery can lead to a "lazy eye". Does anyone elsehave info on that? Best to all of you, April Eisele--- Beth Mullane <srmrmm@...> wrote:> Dear Leah,> Hello, my name is Beth. My son is 2 years old.> He had his 1st surgery at 5 months. Your note> caught my eye because of your mention of Ethan's> lazy eye and muscle tone. Its hard to tell so soon> in 's 2 years but he just feels different than> his sister with regard to muscle tone. Could you> please explain what in particular you mean when you> say low muscle tone? Also, has a lazy eye like> Ethan. His Ped Opth Guy had us put a patch on his> "good" eye just recently. All day every day for the> last 2 weeks. One week to go then we check his> vision in the lazy eye again to see if the vision> has

improved. Whats next? Who knows. We will see> at his Oct. 4 visit. > I look forward to hearing from you soon.> Beth> > leah Forsyth <leahs_male@...> wrote:> HI all .. tis Leah here from Hastings , NewZealand..> I have Ethan with BPES whose 6, he had his surgery> at 2 years. I found a msjor problem with him having> to tilt his head to see because they are seeing that> eye level stuff they cannot also see the ground> where they are walking as well and continually trip> over anything left on the ground. I also agree that> it MUST sooner or later affect their neck etc and> not to mention that it poses more of a self> conscious look when in the company of other> children. I thinkyou should be pushing for the> surgery to be done within the first 5 years if you> can especially before your darling starts school. I> havent

posted a note for ages but read all the posts> every day. Ethan still has his problem with low> muscle tone and is still in nappies which i am> finding VERY tiresome. He had a little accident also> yesterday whilst in the care of his Dad. His Dad was> swinging a plastic bat to hit a swingball and copped> Ethan fair and square in the right eye. So> he has a cut down the side of his eye, cannot open> the eye which is swollen up like a golf ball, so> today we went for xrays to see if any damage has> been done to the eye, hopefully when we get the> xrays back from the specialist all will be ok. But> it makes life rather hard for him trying to just use> the one eye, which is also his lazy eye!!! the only> benefit is that hopefully it will strngthen the lazy> eye somewot. Life is fun here!!!> Well must away. You are a great network of support> for each other and i

feel very proud to belong to> such a caring, kind group.> Re: blepharophimosis Re: Daughter with> BPES> > > Tilting there heads back for so long ....WILL LEAD> TO MAJOR BACK AND NECK PROBLEMS IN THE FUTURE...seek> other advice on that. > > bethgordon03 <bethgordon03@...> wrote: I live> in VA. My daughter is 14 months, I am 35. > > Tilting the head back is really hard to "unlearn".> > > > > I've been reading the posts since my daughter was> born in March > > 2005. She did not open her eyes at all until she> was about a week > > old. We took her to

a Pediatric Opth. and he> didn't tell us much > > except that she had blepharophimosis which was a> fancy word for > small > > eye openings. I immediately went home and> starting searching on > the > > internet and have learned a lot since then. We> took her back when > > she was 5mths and I went with a copy of an article> on BPES and > > asked "Does she have this". Of course he said yes,> but he actually > > recommends no treatment until she is 12 or 13 yrs> old. He basically > > said as long as she can learn to tilt her head> back, which she can, > > she will be fine. As of now, her vision seems> fine. She does open > > one eye more that the other. I'd like to get a> second opinion and > > would be willing to take her anywhere there is a> MD who specializes >

> in BPES, or is more familiar with it. We live in> East TN. Is > there > > anyone in the group who has a MD in TN, KY, GA,> NC, or SC?> > I have learned a lot from this group, read the> posts almost every > > day. I appreciate your support you all have for> each other. It is > > really difficult to deal with this some days. She> is the first in > our > > family. She is a beautiful little girl, so happy> and developing > > fine. She is our little miracle as it took us 3> years to have her! > I > > just want to do all that I can for her.> > Thanks a lot!> > > > >

[Guest guest]

My daughter (now 7) had a head tilt from the beginning. We patched

one eye pretty consistently on a daily basis for her first two years to

combat lazy eye since one eye was barely open at all for the first two

months of her life. Children get lazy eye even when both eyes open, and

once they " get it " even the sling surgery won't help. You need to retrain

the unused eye by patching the strong one to strengthen the other.

had sling surgery at around age 5 (canthopexies first at age 4), and

the head tilt was immediately corrected. She has never had any neck or back

or head difficulties because of it, even though she tilted until age 5.

Just wanted to put my two cents in for those who worry that waiting might

cause neck/back problems. In 's case, it hasn't seemed to affect her

large or small motor coordination, either, though she did bump into things a

lot prior to both surgeries. Her peripheral vision was limited.

[Guest guest]

TIK THE FASTER THE BETTER DEPENDING ON HOW LOW THERE LIDS ARE AND HOW IT EFFECTS TEHRE VISION .. TAILYNN WAS 10 MTHS...

[Guest guest]

Hi friend,

How soon is soon on surgery, in your opion of course,no presure.

kk

[Guest guest]

I'm sorry, one more question, in your opion, do you think 4 or 5yrs. is a bit to late ? Thats the age my doctor wants to do Malenah's surgery. her picture is in our photo's on the sight.

thanks kk

[Guest guest]

If there is not any vision trouble, the later the surgery the best it is

>From: " mieritz7@... " <mieritz7@...>

>Reply-blepharophimosis

>blepharophimosis

>CC: blepharophimosis

>Subject: Re: blepharophimosis Muscle tone/head tilt

>Date: Tue, 27 Sep 2005 23:27:56 GMT

>

>Hi friend,

>How soon is soon on surgery, in your opion of course,no presure.

>kk

[Guest guest]

I think it all depends on the severity of your child BPES and the

decision on when your doctor will do it.... although ultimatly you are

boss.... my son Lynden had his 1st surgery at 5 weeks old and i tell

you it was not soon enough, again it depends on the severity and

Lynden was really bad, he could open his eyes but barely.... my advice

is to get as many opinions as you can, even if they have the same

outcome it will definatly help ease any doubts that you may have

always

Tonikka

> Hi friend,

> How soon is soon on surgery, in your opion of course,no presure.

> kk

[Guest guest]

Tonikka, Great words. and thank you to all of you who have given advice on Malenah's condition. I'm still learning. There is so much i need to understand. Not a lot if info out there. Even regarding the www. I feel like I need to keep pursuing.

thanks again, you all are awesome.

kk