Family Troubles

[Guest guest]

My daughter, Kaitlyn, has been wearing her helmet since July 20th.

Today we went to my grandmas 80th birthday party and my brother was

annoyed that we would do such a thing to her. I took it off for a

little while because it was really hot and he even made the comment

that the helmet was making the shape of her head worse. The thing

is he hasn't seen her in a couple of months and her Plagiocephaly is

progressive and has changed quite a bit in that amount of time.

They saw her back in May and since then she has had flattening in

the back of her head that wasn't there before. She is now 16

months old and also has a metabolic bone disease so I think her

skull is shifting and flattening due to the softness of the bone.

She had a perfectly round head up until she was 9 months old and it

has just gotten worse every month since. So, I felt we needed to

intervene before it became a surgical issue. My brother just

doesn't understand why we have chosen to use a helmet. He said that

if it's not broke don't fix it. I guess he thinks it's just a

cosmetic issue which in Kaitlyn's case I don't believe it is. The

bone has shifted so much that it is causing problems with her tear

duct and her ear canal, she also has some swallowing difficulties.

I believe that if we can correct the Plagiocephaly then hopefully it

will correct some of those problems as well. We took her to the eye

Dr. because she has recurrent eye infections in her right eye and he

tried to do a procedure for a blocked tear duct but was unable to do

it as he could not insert the probe because there was bone in the

way due to her skull shifting. I'm usually extremely receptive of

other peoples opinions but this one just irked me, I can't believe

he would think that I would allow a treatment that would cause her

Plagiocephaly to become worse. It really was an ignorant statement

since he has not been to the Neurology appointments or read the CT

or MRI reports. I guess he just doesn't understand how progressive

her Plagio is. So far we haven't noticed any results but it

certainly has not become worse! I really don't expect to see

immediate results because of her age. Anyways, thanks for listening

I just needed to vent.

Thanks,

Naomi

[Guest guest]

Oh Naomi,

I'm so sorry! Family members can be so critical instead of

supportive. Try and shrug it off.

Natasha

>

> My daughter, Kaitlyn, has been wearing her helmet since July

20th.

> Today we went to my grandmas 80th birthday party and my brother

was

> annoyed that we would do such a thing to her. I took it off for a

> little while because it was really hot and he even made the

comment

> that the helmet was making the shape of her head worse. The thing

> is he hasn't seen her in a couple of months and her Plagiocephaly

is

> progressive and has changed quite a bit in that amount of time.

> They saw her back in May and since then she has had flattening in

> the back of her head that wasn't there before. She is now 16

> months old and also has a metabolic bone disease so I think her

> skull is shifting and flattening due to the softness of the

bone.

> She had a perfectly round head up until she was 9 months old and

it

> has just gotten worse every month since. So, I felt we needed to

> intervene before it became a surgical issue. My brother just

> doesn't understand why we have chosen to use a helmet. He said

that

> if it's not broke don't fix it. I guess he thinks it's just a

> cosmetic issue which in Kaitlyn's case I don't believe it is. The

> bone has shifted so much that it is causing problems with her tear

> duct and her ear canal, she also has some swallowing

difficulties.

> I believe that if we can correct the Plagiocephaly then hopefully

it

> will correct some of those problems as well. We took her to the

eye

> Dr. because she has recurrent eye infections in her right eye and

he

> tried to do a procedure for a blocked tear duct but was unable to

do

> it as he could not insert the probe because there was bone in the

> way due to her skull shifting. I'm usually extremely receptive

of

> other peoples opinions but this one just irked me, I can't believe

> he would think that I would allow a treatment that would cause her

> Plagiocephaly to become worse. It really was an ignorant

statement

> since he has not been to the Neurology appointments or read the CT

> or MRI reports. I guess he just doesn't understand how

progressive

> her Plagio is. So far we haven't noticed any results but it

> certainly has not become worse! I really don't expect to see

> immediate results because of her age. Anyways, thanks for

listening

> I just needed to vent.

>

> Thanks,

> Naomi

>

[Guest guest]

hi,

First of all , I am so sorry about what you are going through rite

now.I feel the same.

my daughter is 13months and we are in procedure of getting her into

a band.

Every thing looks so dissappointing rite now. I just wanted to ask

wat is metabollic bone syndrome and how did your daughter got

diagnosed with it?

-- In Plagiocephaly , " n_kbarringer "

<naomibarringer@...> wrote:

>

> My daughter, Kaitlyn, has been wearing her helmet since July

20th.

> Today we went to my grandmas 80th birthday party and my brother

was

> annoyed that we would do such a thing to her. I took it off for a

> little while because it was really hot and he even made the

comment

> that the helmet was making the shape of her head worse. The thing

> is he hasn't seen her in a couple of months and her Plagiocephaly

is

> progressive and has changed quite a bit in that amount of time.

> They saw her back in May and since then she has had flattening in

> the back of her head that wasn't there before. She is now 16

> months old and also has a metabolic bone disease so I think her

> skull is shifting and flattening due to the softness of the

bone.

> She had a perfectly round head up until she was 9 months old and

it

> has just gotten worse every month since. So, I felt we needed to

> intervene before it became a surgical issue. My brother just

> doesn't understand why we have chosen to use a helmet. He said

that

> if it's not broke don't fix it. I guess he thinks it's just a

> cosmetic issue which in Kaitlyn's case I don't believe it is. The

> bone has shifted so much that it is causing problems with her tear

> duct and her ear canal, she also has some swallowing

difficulties.

> I believe that if we can correct the Plagiocephaly then hopefully

it

> will correct some of those problems as well. We took her to the

eye

> Dr. because she has recurrent eye infections in her right eye and

he

> tried to do a procedure for a blocked tear duct but was unable to

do

> it as he could not insert the probe because there was bone in the

> way due to her skull shifting. I'm usually extremely receptive

of

> other peoples opinions but this one just irked me, I can't believe

> he would think that I would allow a treatment that would cause her

> Plagiocephaly to become worse. It really was an ignorant

statement

> since he has not been to the Neurology appointments or read the CT

> or MRI reports. I guess he just doesn't understand how

progressive

> her Plagio is. So far we haven't noticed any results but it

> certainly has not become worse! I really don't expect to see

> immediate results because of her age. Anyways, thanks for

listening

> I just needed to vent.

>

> Thanks,

> Naomi

>

[Guest guest]

hi,

First of all , I am so sorry about what you are going through rite

now.I feel the same.

my daughter is 13months and we are in procedure of getting her into

a band.

Every thing looks so dissappointing rite now. I just wanted to ask

wat is metabollic bone syndrome and how did your daughter got

diagnosed with it?

-- In Plagiocephaly , " n_kbarringer "

<naomibarringer@...> wrote:

>

> My daughter, Kaitlyn, has been wearing her helmet since July

20th.

> Today we went to my grandmas 80th birthday party and my brother

was

> annoyed that we would do such a thing to her. I took it off for a

> little while because it was really hot and he even made the

comment

> that the helmet was making the shape of her head worse. The thing

> is he hasn't seen her in a couple of months and her Plagiocephaly

is

> progressive and has changed quite a bit in that amount of time.

> They saw her back in May and since then she has had flattening in

> the back of her head that wasn't there before. She is now 16

> months old and also has a metabolic bone disease so I think her

> skull is shifting and flattening due to the softness of the

bone.

> She had a perfectly round head up until she was 9 months old and

it

> has just gotten worse every month since. So, I felt we needed to

> intervene before it became a surgical issue. My brother just

> doesn't understand why we have chosen to use a helmet. He said

that

> if it's not broke don't fix it. I guess he thinks it's just a

> cosmetic issue which in Kaitlyn's case I don't believe it is. The

> bone has shifted so much that it is causing problems with her tear

> duct and her ear canal, she also has some swallowing

difficulties.

> I believe that if we can correct the Plagiocephaly then hopefully

it

> will correct some of those problems as well. We took her to the

eye

> Dr. because she has recurrent eye infections in her right eye and

he

> tried to do a procedure for a blocked tear duct but was unable to

do

> it as he could not insert the probe because there was bone in the

> way due to her skull shifting. I'm usually extremely receptive

of

> other peoples opinions but this one just irked me, I can't believe

> he would think that I would allow a treatment that would cause her

> Plagiocephaly to become worse. It really was an ignorant

statement

> since he has not been to the Neurology appointments or read the CT

> or MRI reports. I guess he just doesn't understand how

progressive

> her Plagio is. So far we haven't noticed any results but it

> certainly has not become worse! I really don't expect to see

> immediate results because of her age. Anyways, thanks for

listening

> I just needed to vent.

>

> Thanks,

> Naomi

>

[Guest guest]

Kaitlyn has a mild variation of Osteogenesis Imperfecta (brittle bones) and

Hypophosphatasia (soft bones). During a routine ultrasound they found that

her femurs were short and referred us to a Perinatal Office. At 31 weeks

they found that her right femur was broken. When Kaitlyn was 6 weeks old

they did a skin biopsy which reveled an alteration in her type I collagen

but were unable to find the gene which lead to the diagnosis of a variation

of Osteogenesis Imperfecta. They also did a skeletal survey which reveled 8

rib fractures, periosteal reaction of the anterior iliac wings (hip

fractures), and fractures in the arms. In Jan 2006 we went to Omaha, NE to

see a Dr. who specializes in Osteogenesis Imperfecta. He did a metabolic

bone blood workup that came back with low alkaline phosphatase which is a

marker for Hypophosphatasia. An ALPL analysis (genetic testing for

Hypophosphatasia) reveled two distict mutations which lead to the diagnosis

of an atypical form of Hypophosphatasia. Her geneticist noticed some mild

signs of Cerebral Palsy when we went in for her 12 month old checkup and

ordered an MRI. The MRI reveled Periventricular Leukomalacia (The

Periventricular Leukomalacia (PVL) was likely due to a lack of oxygen during

the birthing process. And, the type of brain damage that PVL causes contains

the nerve fibers that carry messages from the brain to the body's muscles

which can lead to Cerebral Palsy), Chiari type I malformation (herniation of

the cerebellum through the large opening in the base of the skull into the

spinal canal), and right frontal Plagiocephaly. We were aware that her head

was becoming more an more misshapen but didn't have an actual name for it

until they did the MRI. We had mentioned using a helmet to our Neurosurgeon

when she was 12 months old but he said that we would just wait until the

shape of her head became grotesque and then we could correct it surgically.

We were blessed with a wonderful Dr. in Omaha and he has actually done

helmets in children with metabolic bone disease so we were able to obtain a

helmet through him. Since we were only seeing him every 6 months we didn't

have a chance to do her helmet until July. We've had a crazy first year but

Kaitlyn is my shinning star and I can't imagine life without her!!!

Is your daughter wearing a helmet currently? What age did she start to wear

it? And, at what age was she diagnosed?

Naomi

>From: " sana_naqvi13 " <sana_naqvi13@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Family Troubles

>Date: Tue, 08 Aug 2006 02:54:20 -0000

>

>hi,

>First of all , I am so sorry about what you are going through rite

>now.I feel the same.

>my daughter is 13months and we are in procedure of getting her into

>a band.

>Every thing looks so dissappointing rite now. I just wanted to ask

>wat is metabollic bone syndrome and how did your daughter got

>diagnosed with it?

>

>-- In Plagiocephaly , " n_kbarringer "

><naomibarringer@...> wrote:

> >

> > My daughter, Kaitlyn, has been wearing her helmet since July

>20th.

> > Today we went to my grandmas 80th birthday party and my brother

>was

> > annoyed that we would do such a thing to her. I took it off for a

> > little while because it was really hot and he even made the

>comment

> > that the helmet was making the shape of her head worse. The thing

> > is he hasn't seen her in a couple of months and her Plagiocephaly

>is

> > progressive and has changed quite a bit in that amount of time.

> > They saw her back in May and since then she has had flattening in

> > the back of her head that wasn't there before. She is now 16

> > months old and also has a metabolic bone disease so I think her

> > skull is shifting and flattening due to the softness of the

>bone.

> > She had a perfectly round head up until she was 9 months old and

>it

> > has just gotten worse every month since. So, I felt we needed to

> > intervene before it became a surgical issue. My brother just

> > doesn't understand why we have chosen to use a helmet. He said

>that

> > if it's not broke don't fix it. I guess he thinks it's just a

> > cosmetic issue which in Kaitlyn's case I don't believe it is. The

> > bone has shifted so much that it is causing problems with her tear

> > duct and her ear canal, she also has some swallowing

>difficulties.

> > I believe that if we can correct the Plagiocephaly then hopefully

>it

> > will correct some of those problems as well. We took her to the

>eye

> > Dr. because she has recurrent eye infections in her right eye and

>he

> > tried to do a procedure for a blocked tear duct but was unable to

>do

> > it as he could not insert the probe because there was bone in the

> > way due to her skull shifting. I'm usually extremely receptive

>of

> > other peoples opinions but this one just irked me, I can't believe

> > he would think that I would allow a treatment that would cause her

> > Plagiocephaly to become worse. It really was an ignorant

>statement

> > since he has not been to the Neurology appointments or read the CT

> > or MRI reports. I guess he just doesn't understand how

>progressive

> > her Plagio is. So far we haven't noticed any results but it

> > certainly has not become worse! I really don't expect to see

> > immediate results because of her age. Anyways, thanks for

>listening

> > I just needed to vent.

> >

> > Thanks,

> > Naomi

> >

>

>

>

>

>

_________________________________________________________________

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[Guest guest]

She is doing really well with her growth. Her height is in the 5th

percentile while her weight is in the 50th percentile. It is pretty likely

that she will be short stature but not definite. Her right leg is shorter

than the left because of the in-utero femur fracture and overall her right

side is different from head to toe. The Plagio is on the right and her

facial features are smaller on the right. Her right foot is a 3 while her

left is a 4 so finding shoes has not been exactly fun. She is a little

shorter than her peers but she really looks pretty normal. Most can't tell

that anything is wrong just by looking at her. She does have slightly blue

sclera which can be present in both Osteogenesis Imperfecta (OI) and

Hypophosphatasia (HPP). Here are some web sites on both OI and HPP;

http://www.oif.org/site/PageServer

http://www.oif.org/site/PageServer?pagename=Hypophosphatasia

http://www.homestead.com/hypophosphatasia/index.html

Please let me know if you need any further information, I will be more than

happy to share any info I have. Also, feel free to share my email with your

friend. I have also attached a photo of her.

Naomi

>From: " sana_naqvi13 " <sana_naqvi13@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: Family Troubles

>Date: Tue, 08 Aug 2006 13:42:41 -0000

>

>---

>oh, I am so sorry about it.

>Hvae faith in everything and hopefully everything will be fine.

>does she have any other problem regarding growth and stuff, I am

>sorry I am asking all this but I know someone whose son has soft

>bones and they dont know wat the prob is. So I thought may be I can

>get some info. Do you know soome web sites or links about this, if

>so please let me know

>it will be very helpful

>thanx

>

>In Plagiocephaly , " Naomi Barringer "

><naomibarringer@...> wrote:

> >

> > Kaitlyn has a mild variation of Osteogenesis Imperfecta (brittle

>bones) and

> > Hypophosphatasia (soft bones). During a routine ultrasound they

>found that

> > her femurs were short and referred us to a Perinatal Office. At

>31 weeks

> > they found that her right femur was broken. When Kaitlyn was 6

>weeks old

> > they did a skin biopsy which reveled an alteration in her type I

>collagen

> > but were unable to find the gene which lead to the diagnosis of a

>variation

> > of Osteogenesis Imperfecta. They also did a skeletal survey which

>reveled 8

> > rib fractures, periosteal reaction of the anterior iliac wings

>(hip

> > fractures), and fractures in the arms. In Jan 2006 we went to

>Omaha, NE to

> > see a Dr. who specializes in Osteogenesis Imperfecta. He did a

>metabolic

> > bone blood workup that came back with low alkaline phosphatase

>which is a

> > marker for Hypophosphatasia. An ALPL analysis (genetic testing

>for

> > Hypophosphatasia) reveled two distict mutations which lead to the

>diagnosis

> > of an atypical form of Hypophosphatasia. Her geneticist noticed

>some mild

> > signs of Cerebral Palsy when we went in for her 12 month old

>checkup and

> > ordered an MRI. The MRI reveled Periventricular Leukomalacia (The

> > Periventricular Leukomalacia (PVL) was likely due to a lack of

>oxygen during

> > the birthing process. And, the type of brain damage that PVL

>causes contains

> > the nerve fibers that carry messages from the brain to the body's

>muscles

> > which can lead to Cerebral Palsy), Chiari type I malformation

>(herniation of

> > the cerebellum through the large opening in the base of the skull

>into the

> > spinal canal), and right frontal Plagiocephaly. We were aware

>that her head

> > was becoming more an more misshapen but didn't have an actual name

>for it

> > until they did the MRI. We had mentioned using a helmet to our

>Neurosurgeon

> > when she was 12 months old but he said that we would just wait

>until the

> > shape of her head became grotesque and then we could correct it

>surgically.

> > We were blessed with a wonderful Dr. in Omaha and he has actually

>done

> > helmets in children with metabolic bone disease so we were able to

>obtain a

> > helmet through him. Since we were only seeing him every 6 months

>we didn't

> > have a chance to do her helmet until July. We've had a crazy

>first year but

> > Kaitlyn is my shinning star and I can't imagine life without her!!!

> >

> > Is your daughter wearing a helmet currently? What age did she

>start to wear

> > it? And, at what age was she diagnosed?

> >

> > Naomi

> >

> >

> >

> > >From: " sana_naqvi13 " <sana_naqvi13@...>

> > >Reply-Plagiocephaly

> > >Plagiocephaly

> > >Subject: Re: Family Troubles

> > >Date: Tue, 08 Aug 2006 02:54:20 -0000

> > >

> > >hi,

> > >First of all , I am so sorry about what you are going through rite

> > >now.I feel the same.

> > >my daughter is 13months and we are in procedure of getting her

>into

> > >a band.

> > >Every thing looks so dissappointing rite now. I just wanted to ask

> > >wat is metabollic bone syndrome and how did your daughter got

> > >diagnosed with it?

> > >

> > >-- In Plagiocephaly , " n_kbarringer "

> > ><naomibarringer@> wrote:

> > > >

> > > > My daughter, Kaitlyn, has been wearing her helmet since July

> > >20th.

> > > > Today we went to my grandmas 80th birthday party and my brother

> > >was

> > > > annoyed that we would do such a thing to her. I took it off

>for a

> > > > little while because it was really hot and he even made the

> > >comment

> > > > that the helmet was making the shape of her head worse. The

>thing

> > > > is he hasn't seen her in a couple of months and her

>Plagiocephaly

> > >is

> > > > progressive and has changed quite a bit in that amount of time.

> > > > They saw her back in May and since then she has had flattening

>in

> > > > the back of her head that wasn't there before. She is now 16

> > > > months old and also has a metabolic bone disease so I think her

> > > > skull is shifting and flattening due to the softness of the

> > >bone.

> > > > She had a perfectly round head up until she was 9 months old

>and

> > >it

> > > > has just gotten worse every month since. So, I felt we needed

>to

> > > > intervene before it became a surgical issue. My brother just

> > > > doesn't understand why we have chosen to use a helmet. He said

> > >that

> > > > if it's not broke don't fix it. I guess he thinks it's just a

> > > > cosmetic issue which in Kaitlyn's case I don't believe it is.

>The

> > > > bone has shifted so much that it is causing problems with her

>tear

> > > > duct and her ear canal, she also has some swallowing

> > >difficulties.

> > > > I believe that if we can correct the Plagiocephaly then

>hopefully

> > >it

> > > > will correct some of those problems as well. We took her to

>the

> > >eye

> > > > Dr. because she has recurrent eye infections in her right eye

>and

> > >he

> > > > tried to do a procedure for a blocked tear duct but was unable

>to

> > >do

> > > > it as he could not insert the probe because there was bone in

>the

> > > > way due to her skull shifting. I'm usually extremely

>receptive

> > >of

> > > > other peoples opinions but this one just irked me, I can't

>believe

> > > > he would think that I would allow a treatment that would cause

>her

> > > > Plagiocephaly to become worse. It really was an ignorant

> > >statement

> > > > since he has not been to the Neurology appointments or read

>the CT

> > > > or MRI reports. I guess he just doesn't understand how

> > >progressive

> > > > her Plagio is. So far we haven't noticed any results but it

> > > > certainly has not become worse! I really don't expect to see

> > > > immediate results because of her age. Anyways, thanks for

> > >listening

> > > > I just needed to vent.

> > > >

> > > > Thanks,

> > > > Naomi

> > > >

> > >

> > >

> > >

> > >

> > >

> >

> > _________________________________________________________________

> > Don't just search. Find. Check out the new MSN Search!

> > http://search.msn.click-url.com/go/onm00200636ave/direct/01/

> >

>

>

>

>

>

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[Guest guest]

has dealt with death on several occasions. We are a close family, and

even the death of a cousin is devastating. It's not easy for any of us, but

she deals with it, as do we all.

I am preparing her for my death, and we talk about it now and then. Just so

she will understand when the time comes, and what happens after that.

granny

On Mon, Sep 6, 2010 at 9:48 PM, Kathy Everett <kathyeverett27@...>wrote:

>

>

> Beth,

> We seem to have had some similar experiences the past few years. In the

> midst

> of moving, saw her father on a stretcher (after having attempted

> suicide). I didn't tell her anything about the suicide but believe me she

> knew.

> She still (2 years later) talks about Dad being sick. It has taken me a lot

> of

> time to help her understand that yes he was sick and now he is okay (he is

> doing

> well and goes to AA daily). He sees her sometimes at work for a few minutes

> but

> she calls him all the time. She has come to accept their relationship and

> the

> differences. She also had a hard time dealing with my sister's death. She

> still talks about it but I reassure her that most of the time, the doctors

> can

> help. I think he world was a little shaken with her Dad gone and her aunt

> dying. I talk to her in words she can understand and it is coming along but

> it

> does take time. Good luck.

> Kathy Everett

> 678 230-6985

> Kathy Everett Consulting

> www.KathyEverett.com

>

>