Need your opinion

[Guest guest]

Hi Amy,

I understand your confusion. I looked at the pictures of your son. In

my opinion...just my opinion, he really can benefit from a

helmet/band. Especially since you've been repositioning for about 3

months and it hasn't helped. The younger you get your baby banded the

better and faster the results since their heads are growing fast at

that time.

Have you been working on excercises to help the torticollis? If not

maybe you can try that. That might help out with the repositioning.

If you have been doing that and it still hasn't helped if I were you

I'd go check out Cranial Technologies or another place that has

helmets. My son has been in one for about 3 weeks and let me tell you

it is more traumatic for me than it is for him. He could care less

that he has it on. It really doesn't bother him one bit. It doesn't

hurt to go to a specialist to get their opinion. Good luck!

Marcy & (6 months)

DOC band baby in NJ

Brachy/Plagio

> http://www.ofoto.com/I.jsp?c=13er70bf.comagy87 & x=0 & y=-ttipdg

>

> I need your opinion deparately. Please look at the above link and

> read my short but long story.

>

> Real long story, short. My 3 month old son was just diagnosed with

> Mild to moderate plagio and torticollis. He favors has right side

> since birth. SInce his 2 week pedi appointment we have been

> religiously repositioning him to no avail.

> Dr said he wont make a helmet mandatory because there is nothing

else

> wrong with him other than a " lop-sided, crooked head " . So he said

a

> helmet was optional and basically left it up to us to make the

> decision. I left there with a script and tons of info on both

> repositioning and helmet therapy.

> My mom came with me to the appointment and told me that there was

no

> reason we should put my son thru something this tramatic. I took

it

> as he wrote me script and left it up to me and my husband. My mom

> then replied that he wrote the script to humor me.

> I am torn what to do. Everyone has given me there opinion and its

> 50/50 so far.

> Help, please advise me in some direction.

> Thank you in advance for reading this and helping me.\

> Amy

[Guest guest]

Amy,

I too looked at the pictures of your son and in my opinion he would benefit from the band/helmet. He is at a great age to start band therapy. My older daughter, who is now 5, was 19 months old when she got into the band. I wish I had not listened to the doctors keep telling me it would correct on its own. I had been repositioning her for months and it still did not change. We started working on the steps to get the band at 12 months of age and when we were finally able to get it after starting the fight with insurance and then finally asking family members to help us out with payment while still fighting she was 19 months old. She graduated from the band at 21 months of age. She still has a little bit of a flat spot on the left side of her head but it is nothing like before she got into the band. We were very fortunate to get into the band as she hit a major growth spurt.

The band was more traumatizing to me than it was to my daughter. In fact, she loved wearing it. She hated the times it was off for cleaning.

I am now possibly going through having to get a band for my younger daughter who is 7 weeks old. We are trying repo first, but I have already started looking into where the closest place to go for the DOC band is and if insurance won't pay for it, how can we afford it.

Johanna mommy to Tatijana(DOC band grad 5/01) and lyse

>From: "emjsmum" <kaparent@...>

>Reply-Plagiocephaly >Plagiocephaly >Subject: Need your opinion >Date: Sun, 19 Sep 2004 23:50:39 -0000 > Check out Election 2004 for up-to-date election news, plus voter tools and more!

[Guest guest]

Hi Amy,

I completely understand where you are coming from. We agonized for month about what to do for 's Plagio. (He had tort as well). Many people would say that they did not notice anything wrong with his head, but I wasn't sure if they were just being nice, because it was so apparant to me. We tried repo, which help to keep it from getting worse, but really didn't dramatically improve it. Because of the tort, it was so hard to keep him off that side. The doctors kept saying it would round out on it's own, but it just wasn't doing it. And we didn't want Matt to come to us years later and say why didn't you do something when you had the chance.

One thing that helped us make our decision was to go for the free evaluation from Cranial Technologies. They are really nice; and there is no pressure to make a decision one way or the other; and they will really give you an honest opinion. We even told them up front that we were not planning on going there for treatment because it was too far away - although we did end up going there because we liked the service we go from them the best after investigating another place). When they were able to provide us 's measurements and degree of assymetry, we then compared it to Aetna's terms for coverage. I felt that if he was bad enough to meet the insurance companies' criteria for coverage, then it was bad enough for me to do something about it.

We were really concerned how he would react to the band, but he was fine. It didn't phase him at all. In fact, since he didn't get his until he was about 10 months old, it really saved him from a couple of nasty spills while he was learning to walk! We had a long drive for our appointments every 2 weeks, so we tried to look at them as an adventure. We decorated his helmet and put his name on it and it was a real conversation starter, and it gave me the opportunity to educate people about plagio.

We agonized over our decision for months, but I'll tell you as soon as we decided to go through with it, I could finally relax. It usually is much harder on the parents than on the babies. Most adjust very quickly to their helmets. And believe it or not, the time goes by pretty quickly.

Only you and your husband can make the decision that's right for your family. And whatever you decide will be the best for you. The earlier you band the babies the beter results you will have, but at 3 months you still have time to try repo and do some more research and see how it goes. Some advice I got from this board when I was trying to make my decision was to ask yourself whether or not you think you will regret not doing something, and then just follow you heart.

Good Luck,

and (DOCgrad, 10-7-03 to 2-13-04)

Warrington, PAemjsmum <kaparent@...> wrote:

http://www.ofoto.com/I.jsp?c=13er70bf.comagy87 & x=0 & y=-ttipdgI need your opinion deparately. Please look at the above link and read my short but long story. Real long story, short. My 3 month old son was just diagnosed with Mild to moderate plagio and torticollis. He favors has right side since birth. SInce his 2 week pedi appointment we have been religiously repositioning him to no avail. Dr said he wont make a helmet mandatory because there is nothing else wrong with him other than a "lop-sided, crooked head". So he said a helmet was optional and basically left it up to us to make the decision. I left there with a script and tons of info on both repositioning and helmet therapy. My mom

came with me to the appointment and told me that there was no reason we should put my son thru something this tramatic. I took it as he wrote me script and left it up to me and my husband. My mom then replied that he wrote the script to humor me. I am torn what to do. Everyone has given me there opinion and its 50/50 so far. Help, please advise me in some direction.Thank you in advance for reading this and helping me.\Amy For more plagio info

[Guest guest]

Hi Amy!

I just looked at your son's pictures. First and foremost... he's

adorable!! It's very apparent from the pictures that he would be an

excellent candidate for a band or helmet. When I was reading your

post something seemed to stick with me, and that is your mom's

comment about putting him through the torture of a helmet. I totally

understand where your/her thoughts are coming from. My husband and I

were very leary about how our son, Jack, would take to such a

device. It, honestly, took him about 15 minutes to adjust. Once it

went on his little head he shook it around a bit, then went onto to

other things. I've heard from so many other parents that their kids

adjusted beautifully, too. Please don't let the idea of it being a

horrible experience for him stop you from taking the next step and

generating more information. From his pictures, it is very clear

that he has plagio and would benefit greatly from a band or helmet.

I hope that everything works out well and keep us posted on your

progress/decision!!

Good luck!!!

Jodie

Jack's Mom

DocBanded 8/13

Resolved Tort and Plagio

> http://www.ofoto.com/I.jsp?c=13er70bf.comagy87 & x=0 & y=-ttipdg

>

> I need your opinion deparately. Please look at the above link and

> read my short but long story.

>

> Real long story, short. My 3 month old son was just diagnosed with

> Mild to moderate plagio and torticollis. He favors has right side

> since birth. SInce his 2 week pedi appointment we have been

> religiously repositioning him to no avail.

> Dr said he wont make a helmet mandatory because there is nothing

else

> wrong with him other than a " lop-sided, crooked head " . So he said

a

> helmet was optional and basically left it up to us to make the

> decision. I left there with a script and tons of info on both

> repositioning and helmet therapy.

> My mom came with me to the appointment and told me that there was

no

> reason we should put my son thru something this tramatic. I took

it

> as he wrote me script and left it up to me and my husband. My mom

> then replied that he wrote the script to humor me.

> I am torn what to do. Everyone has given me there opinion and its

> 50/50 so far.

> Help, please advise me in some direction.

> Thank you in advance for reading this and helping me.\

> Amy

[Guest guest]

Amy,

I definitely think your son would benefit from a band/helmet.

Everything I would suggest has been said repeatedly by other

members. They have offered excellent advice and have covered all

the bases. Just remember, bands are not traumatic for the child

and treatment generally lasts for only 3-4 months. My daughter has

been in her band for 1 week and has adjusted beautifully. I'm so

glad we decided to do this. Good luck with your decision.

Dianna

Mom to

DOC Band 9/13

plagio/brachy

Plagiocephaly , " wimmerje " <wolffmj@s...> wrote:

> Hi Amy!

>

> I just looked at your son's pictures. First and foremost... he's

> adorable!! It's very apparent from the pictures that he would be

an

> excellent candidate for a band or helmet. When I was reading your

> post something seemed to stick with me, and that is your mom's

> comment about putting him through the torture of a helmet. I

totally

> understand where your/her thoughts are coming from. My husband

and I

> were very leary about how our son, Jack, would take to such a

> device. It, honestly, took him about 15 minutes to adjust. Once

it

> went on his little head he shook it around a bit, then went onto

to

> other things. I've heard from so many other parents that their

kids

> adjusted beautifully, too. Please don't let the idea of it being

a

> horrible experience for him stop you from taking the next step and

> generating more information. From his pictures, it is very clear

> that he has plagio and would benefit greatly from a band or helmet.

>

> I hope that everything works out well and keep us posted on your

> progress/decision!!

>

> Good luck!!!

>

> Jodie

> Jack's Mom

> DocBanded 8/13

> Resolved Tort and Plagio

>

>

> --- In Plagiocephaly , " emjsmum " <kaparent@c...>

wrote:

> > http://www.ofoto.com/I.jsp?c=13er70bf.comagy87 & x=0 & y=-ttipdg

> >

> > I need your opinion deparately. Please look at the above link

and

> > read my short but long story.

> >

> > Real long story, short. My 3 month old son was just diagnosed

with

> > Mild to moderate plagio and torticollis. He favors has right

side

> > since birth. SInce his 2 week pedi appointment we have been

> > religiously repositioning him to no avail.

> > Dr said he wont make a helmet mandatory because there is nothing

> else

> > wrong with him other than a " lop-sided, crooked head " . So he

said

> a

> > helmet was optional and basically left it up to us to make the

> > decision. I left there with a script and tons of info on both

> > repositioning and helmet therapy.

> > My mom came with me to the appointment and told me that there

was

> no

> > reason we should put my son thru something this tramatic. I

took

> it

> > as he wrote me script and left it up to me and my husband. My

mom

> > then replied that he wrote the script to humor me.

> > I am torn what to do. Everyone has given me there opinion and

its

> > 50/50 so far.

> > Help, please advise me in some direction.

> > Thank you in advance for reading this and helping me.\

> > Amy

[Guest guest]

Hi Amy. I'm going to be blunt here because it's late and I'm tired

but I want to respond. When I saw your son's pictures, I said, " Oh my

goodness. " In my opinion his plagio is not mild. That's polite group-

speak for " Get him a helmet! " Research indicates that babies with

tort are very hard to reposition and their plagio usually does not

self-correct. In fact, it often gets worse.

Your son's grandma is in love with him, as she should be, and

probably simply cannot see any imperfections. But his head shape is

not normal and the faster you get him into a helmet, the bigger the

favor you are doing him. Pretend you are a teenager again and ignore

your mother.

I had to fight to get my son into a helmet and although he got lucky

and had some good growth spurts, he really missed out on the best

correction he could have received. I wish wish WISH I had been given

a prescription at three months! Count yer blessings, and get to the

nearest Cranial Tech center, or other center (I'm a teeny bit partial

to CT after all they did for my son) and don't you dare worry about

how he will react to the helmet. It is NOT traumatic to a baby. A lot

of moms tend to weep about it--it's a new, alarming experience--

unless their kid is 18 months old and starting to look a little

freaky. Then they are just happy.

Good luck to you and your son!

, 21 mos, DOC Grad 9/7

> http://www.ofoto.com/I.jsp?c=13er70bf.comagy87 & x=0 & y=-ttipdg

>

> I need your opinion deparately. Please look at the above link and

> read my short but long story.

>

> Real long story, short. My 3 month old son was just diagnosed with

> Mild to moderate plagio and torticollis. He favors has right side

> since birth. SInce his 2 week pedi appointment we have been

> religiously repositioning him to no avail.

> Dr said he wont make a helmet mandatory because there is nothing

else

> wrong with him other than a " lop-sided, crooked head " . So he said

a

> helmet was optional and basically left it up to us to make the

> decision. I left there with a script and tons of info on both

> repositioning and helmet therapy.

> My mom came with me to the appointment and told me that there was

no

> reason we should put my son thru something this tramatic. I took

it

> as he wrote me script and left it up to me and my husband. My mom

> then replied that he wrote the script to humor me.

> I am torn what to do. Everyone has given me there opinion and its

> 50/50 so far.

> Help, please advise me in some direction.

> Thank you in advance for reading this and helping me.\

> Amy

[Guest guest]

Hi Amy,

Welcome to the group - I'm so glad you found it! I too agree with

the others that 1) your baby is adorable and 2) he really needs to

get a helmet. I'm sorry to say it but you really won't regret it! I

thought my mom would be the same as your mom but she was like " do

whatever you have to do " to fix his head (and luckily our whole

family was supportive too). My son didn't mind the helmet one bit!

I'm serious.

Find out who is the expert in your area. Cranial Technologies have a

very good reputation but STARbands and other local helmets can be

just as good with an experienced orthotist making/adjusting them for

you. The sooner he is in it, the sooner he will be out of it for a

lifetime of a rounder, more symmetrical head! We will all help you

through this every step of the way. You honestly have nothing to

lose. I think that the parents of the " older " babies really helped

me to decide to do it, because it does not always " round out " as

nicely as you may like it to. I hope this helps you. I worried how

it would affect him too but honestly my son slept, ate, played JUST

as always. He was still the same happy smily baby boy and yours will

be too. Let us know if you need anything....

Sue

Colin F. 1 this Fri.

STARband grad 9/15/04

Buffalo, NY

> http://www.ofoto.com/I.jsp?c=13er70bf.comagy87 & x=0 & y=-ttipdg

>

> I need your opinion deparately. Please look at the above link and

> read my short but long story.

>

> Real long story, short. My 3 month old son was just diagnosed with

> Mild to moderate plagio and torticollis. He favors has right side

> since birth. SInce his 2 week pedi appointment we have been

> religiously repositioning him to no avail.

> Dr said he wont make a helmet mandatory because there is nothing

else

> wrong with him other than a " lop-sided, crooked head " . So he said

a

> helmet was optional and basically left it up to us to make the

> decision. I left there with a script and tons of info on both

> repositioning and helmet therapy.

> My mom came with me to the appointment and told me that there was

no

> reason we should put my son thru something this tramatic. I took

it

> as he wrote me script and left it up to me and my husband. My mom

> then replied that he wrote the script to humor me.

> I am torn what to do. Everyone has given me there opinion and its

> 50/50 so far.

> Help, please advise me in some direction.

> Thank you in advance for reading this and helping me.\

> Amy

[Guest guest]

Hi Amy, Deciding to band is a hard decition to make. I know in my

own experience I had family tell me that I was being a neurotic

first time mom.....now they totaly agree that my daughter has

a funky, lumpy, bumy head (she is soon to be banded). We went threw

all the pros and cons of banding. Basicaly what we came to was a few

months of being possibly uncomfterble would be better then a life

time of being made fun of for having a strange head. I'm sure you

have heard people say " your mom didn't love you enough to turn you

as a baby " .....Thats only mine and my husbands oppinion. Best thing

to do is sit down and look at all the pros and cons. Also at three

months you would be able to get realy good results with

repositioning. There are meny parents on this board that never

banded and they got awsom results. I started repoing at about

3 weeks old and gave my self a time limit...unfortunatly she never

rounded out like I had hoped, but she did get some improvment. Her

head would have been twice as bad had I not repoed. Then we decided

on banding. Best of luck to you on making your decition to band.

mom to S., CA

-Optic Nerve Hypoplasia.

-Central Hypotonia.

-Torticollis (resolved).

-Brachy/Plagio soon to be DOCbanded.

--- In Plagiocephaly , " emjsmum " <kaparent@c...>

wrote:

> http://www.ofoto.com/I.jsp?c=13er70bf.comagy87 & x=0 & y=-ttipdg

>

> I need your opinion deparately. Please look at the above link and

> read my short but long story.

>

> Real long story, short. My 3 month old son was just diagnosed

with

> Mild to moderate plagio and torticollis. He favors has right side

> since birth. SInce his 2 week pedi appointment we have been

> religiously repositioning him to no avail.

> Dr said he wont make a helmet mandatory because there is nothing

else

> wrong with him other than a " lop-sided, crooked head " . So he said

a

> helmet was optional and basically left it up to us to make the

> decision. I left there with a script and tons of info on both

> repositioning and helmet therapy.

> My mom came with me to the appointment and told me that there was

no

> reason we should put my son thru something this tramatic. I took

it

> as he wrote me script and left it up to me and my husband. My mom

> then replied that he wrote the script to humor me.

> I am torn what to do. Everyone has given me there opinion and its

> 50/50 so far.

> Help, please advise me in some direction.

> Thank you in advance for reading this and helping me.\

> Amy

[Guest guest]

Hi Amy,

Welcome to the group. I'm sorry you are not getting the support you desire from family and friends. First, helmet and band therapy is not traumatic to the infant. It is somewhat concerning to the parent - but that's our job to be concerned. Casting the infants head for a proper measure is not fun but I wouldn't classify it as traumatic and my daughter was casted 3 times! That being said I do think that your son would benefit from a helmet or band since you have been attempting repo with no improvement and because your son has tort. Repo is very difficult in tort babies. He is very young which would meen more improvement in less time.

Here are more links to repo help and tort help.

Repositioning Headquarters Detailed repo strategies and information, photos of repo ideas from our group members, and more. Check out the REPOSITIONING folder in the LINKS section of the group for a lot more information on and products for repositioning.

Torticollis Help Stretching tips and muscle location pics

Plagio is not a cosmetic issue. It has been shown to cause issues down the road - most namely TMJ, ear infections, eye problems, other ear issues, migraines, etc. I don't mean to scare you but some peds make you think it is just cosmetics.

Plagio Studies and Research Studies, research, guidelines, etc. on plagiocephaly. Check out the LINKS section, PLAGIOCEPHALY STUDIES AND RESEARCH folder for many more updated studies on plagiocephaly.

Plagiocephaly Studies and Research Links to studies on plagiocephaly; could be useful in insurance appeals.

Where are you located? We may have a memebr in your area that can provide specific help.

mom to na

DOC Grad

SCemjsmum <kaparent@...> wrote:

http://www.ofoto.com/I.jsp?c=13er70bf.comagy87 & x=0 & y=-ttipdgI need your opinion deparately. Please look at the above link and read my short but long story. Real long story, short. My 3 month old son was just diagnosed with Mild to moderate plagio and torticollis. He favors has right side since birth. SInce his 2 week pedi appointment we have been religiously repositioning him to no avail. Dr said he wont make a helmet mandatory because there is nothing else wrong with him other than a "lop-sided, crooked head". So he said a helmet was optional and basically left it up to us to make the decision. I left there with a script and tons of info on both repositioning and helmet therapy. My mom

came with me to the appointment and told me that there was no reason we should put my son thru something this tramatic. I took it as he wrote me script and left it up to me and my husband. My mom then replied that he wrote the script to humor me. I am torn what to do. Everyone has given me there opinion and its 50/50 so far. Help, please advise me in some direction.Thank you in advance for reading this and helping me.\Amy For more plagio info

[Guest guest]

Hi ,

Thank you so much for sharing your story and your advice. I actually

took a little step and made an appoinment for a consult with Hanger

Orthodics. I have no idea about them or what kind of helmet or band

they use. I am in massachusetts, on the NH border. I think Hanger

is the only place close to us.

I think my family is atleast starting to accept my thoughts of

considering helmet therapy.

They are saying things like: " this is a huge committment, once you

start you cant stop the therapy "

" you cant take him out in public with it on, unless you comfortable

with the stares and all the questions your going to get "

" how are you going ot explain it to emily (big sister) and her

friends at daycare "

I know these are all normal questions and concerns and no one wants

or wishes to see their child/grandchild in a helmet, but I look at is

its so differently but I can so see where everyone is coming from.

Again thank you and everyone else for all your kind words and helpful

advice. It has helped me so much is my decision making. I know I

will be posting much more often if we decide to go ahead with the

helmet. I really think we will, no matter the cost.

How long should it take it to get him in a helmet once we decide to

do it?

Amy

s and s mom

> http://www.ofoto.com/I.jsp?c=13er70bf.comagy87 & x=0 & y=-ttipdg

>

> I need your opinion deparately. Please look at the above link and

> read my short but long story.

>

> Real long story, short. My 3 month old son was just diagnosed with

> Mild to moderate plagio and torticollis. He favors has right side

> since birth. SInce his 2 week pedi appointment we have been

> religiously repositioning him to no avail.

> Dr said he wont make a helmet mandatory because there is nothing

else

> wrong with him other than a " lop-sided, crooked head " . So he said

a

> helmet was optional and basically left it up to us to make the

> decision. I left there with a script and tons of info on both

> repositioning and helmet therapy.

> My mom came with me to the appointment and told me that there was

no

> reason we should put my son thru something this tramatic. I took

it

> as he wrote me script and left it up to me and my husband. My mom

> then replied that he wrote the script to humor me.

> I am torn what to do. Everyone has given me there opinion and its

> 50/50 so far.

> Help, please advise me in some direction.

> Thank you in advance for reading this and helping me.\

> Amy

>

>

>

>

> For more plagio info

[Guest guest]

Amy,

I'm glad to help. You could drive to CT in Connecticut. Please check our database.

Plagiocephaly/database?method=reportRows & tbl=8

(you may need to copy and paste the link into your browser if it is more than one line)

You may find some other locations. My New England geography knowledge is not that extensive.

Here are some answers you can give them...

"this is a huge commitment, once you start you cant stop the therapy" You can stop therapy at any time if you are not happy with the treatment progress or experience.

"you cant take him out in public with it on, unless you comfortable with the stares and all the questions your going to get" The public really isn't that bad. Most people don't say anything. You can use it as a positive experience to educate people. We've had mom's hand out little info cards. Kind of like calling cards. Decorating the band.helmet makes it much less medical and more of a conversation starter. We put dd's name on her band and everyone would say "hi na" she thought everyone should know her name. LOL

"how are you going to explain it to emily (big sister) and her friends at daycare" You will explain it very simply to the children. 's head isn't round like yours so this helmet is helping make it round as he grows. If they ask more questions like does it hurt - no, he hardly notices it. Does he have to wear it forever - no just a few months. For caregivers we can help you put together simple but thorough instructions for care and to alleviate their concerns. It really is easy to care for.

Timing depends on a number of factors. You need to get the RX from your ped or specialist. You;ll probably need to get insurance pre-approval or denial. You really need their decision first so you have it for the appeals process. If you short circuit insurance sometimes they don't let you appeal. Once all of that is taken care of it usually takes less than 2 weeks from cast or scan to fit.

Please feel free to ask as many questions as you like.

mom to na

emjsmum <kaparent@...> wrote:

Hi ,Thank you so much for sharing your story and your advice. I actually took a little step and made an appoinment for a consult with Hanger Orthodics. I have no idea about them or what kind of helmet or band they use. I am in massachusetts, on the NH border. I think Hanger is the only place close to us. I think my family is atleast starting to accept my thoughts of considering helmet therapy. They are saying things like: "this is a huge committment, once you start you cant stop the therapy""you cant take him out in public with it on, unless you comfortable with the stares and all the questions your going to get""how are you going ot explain it to emily (big sister) and her friends at daycare"I know these are all normal questions and concerns and no one wants or wishes to see

their child/grandchild in a helmet, but I look at is its so differently but I can so see where everyone is coming from.Again thank you and everyone else for all your kind words and helpful advice. It has helped me so much is my decision making. I know I will be posting much more often if we decide to go ahead with the helmet. I really think we will, no matter the cost. How long should it take it to get him in a helmet once we decide to do it?Amys and s mom> http://www.ofoto.com/I.jsp?c=13er70bf.comagy87 & x=0 & y=-ttipdg> > I need your opinion

deparately. Please look at the above link and > read my short but long story. > > Real long story, short. My 3 month old son was just diagnosed with > Mild to moderate plagio and torticollis. He favors has right side > since birth. SInce his 2 week pedi appointment we have been > religiously repositioning him to no avail. > Dr said he wont make a helmet mandatory because there is nothing else > wrong with him other than a "lop-sided, crooked head". So he said a > helmet was optional and basically left it up to us to make the > decision. I left there with a script and tons of info on both > repositioning and helmet therapy. > My mom came with me to the appointment and told me that there was no > reason we should put my son thru something this tramatic. I took it > as he wrote me script and left it up to me and my

husband. My mom > then replied that he wrote the script to humor me. > I am torn what to do. Everyone has given me there opinion and its > 50/50 so far. > Help, please advise me in some direction.> Thank you in advance for reading this and helping me.\> Amy > > > > > For more plagio info

[Guest guest]

This is an email that I have just received from some friends that I

know very well. Little background, elderly (late 70's-early 80's)

female, seemed to be previously very healthy, very active and thinks

clearly. Male, for the last several years has had many respitory

infections, been on antibodics on and off quite a bit. I know they

have mold in there home, basement has flooded at least 3

times,sewage backup last year, indoor sauna/no vent. Sharon has been

in the basement once, within a few minutes she had a severe reaction.

They know what we are going through and have listened to a point. I

do believe they have had some remodeling done in the basement.They

have two sons that are physicians and yes, of course they don't

believe a word about mold. So guess who they listen to.... in my

opinion. Three weeks ago the Mrs. came down with an infection, I'll

let you read the email from there. One other point of interest, she

has always gone hot and heavy with bleach. Not necessarily for mold,

which I have never seen any, but can smell it, but for general

cleaning. Your thoughts.

KC

DEAR KEVIN, THE EYSIGHT LOSS WAS CAUSED BY AN ILLNESS THAT STARTED

THREE OR FOUR WEEKS AGO THAT IS CALLED TEMPORAL ARTERITIS WHICH IS

AN AUTOIMMUNE DISEASE. THE ARTERIES ON THE SIDE OF THE HEAD BECOME

INFLAMED AND SWELL UP CUTTING OFF THE BLOOD SUPPLY TO VITAL AREAS,

IN THIS CASE, THE OPTIC NERVE WHICH DIED AS A RESULT. UNFORTUNATLY,

HER DOCTOR MISDIAGNOSED IT AS AN INFECTION AND TREATED HER WITH

ANTIBIOTICS INSTEAD OF PREDNISONE. IT WAS CORRECTLY DIAGNOSED BY AN

OPTOMETRIST WHO SHE WENT TO SEE AFTER HER SIGHT WAS LOST IN ONE EYE.

IN ADDITION TO THE SIGHT LOSS THE PAIN DURING THIS PERIOD WAS

UNBEARABLE. THE APPLICATION OF PREDNISONE RESULTED IN ALMOST

IMMEDIATE REDUCTION IN THE PAIN.THIS IS A CASE OF A DOCTOR JUMPING

TO A CONCLUSION INSTEAD CONSIDERING ALL THE POSSIBILITIES WHICH ARE

NOT MANY IN THIS SITUATION. HE BASED HIS DECISION ON THE FACT THAT

SHE HAD BAD BREATH !!!!! SO WHAT SHOULD WE DO ABOUT THIS? HE HAS

TAKEN EXCELLANT CARE OF US UP TIL NOW AND HAS ACTUALLY SAVED MY

LIFE. I GUESS NOBODYS PERFECT. THIS IS CERTAINLY A DILEMA.SHE HAS

LOST THE SIGHT OF ONE EYE AND THEY ARE TRYING TO PREVENT THE LOSS OF

THE OTHER. WE WISH YOU ALL THE BEST. JOHN PS THANKS FOR YOUR

OFFER TO HELP. WE MAY NEED IT.

[Guest guest]

KC, sounds like the mold has got a hold on them. I would say without

pre-existing conditions it is the mold, my opinion. We all know what the

antibiotics do to us that are ill, with the eyes sounds fungal too me.

ARTERITIS means inflammation of the arteries,so when there is inflammation there

is usually infection. I am surprised that her sons, physician's won't

listen...send them some literature, or send them some of our stories maybe if

they here it from enough mold victim's they just might start to listen. Invite

them to join the group, let them read first hand what we are dealing with.

Prendisone, once again not good. This is nothing that you all ready don't

know, bless the both of them. What kind of physician's are the sons, not that

this matters, they should open up their eyes, listen to their parents, get some

more education......what do the sons actually say about the illnesses. This is

why I loose so much faith in most of the medical field. Well, my

opinion probably did not help you at all, like I said I am not saying anything

that you all ready don't know. Also, if Sharon reacted in the basement between

the mold and the bleach, I hope your all right. I would try to tell them to

also go a different route other than bleach. Sorry this is long, and not

really saying anything, but thought I would reply anyways. Obviously, they need

to seek other medical attention. Darlene

[Guest guest]

I think the older you are the more easier it is for even smaller

amounts of mold and their mycotoxins to cause organ damage. they need

to get to a doctor that knows.

--- In , Darlene <darlenesb2000@...>

wrote:

>

> KC, sounds like the mold has got a hold on them. I would say

without pre-existing conditions it is the mold, my opinion. We all

know what the antibiotics do to us that are ill, with the eyes sounds

fungal too me. ARTERITIS means inflammation of the arteries,so when

there is inflammation there is usually infection. I am surprised

that her sons, physician's won't listen...send them some literature,

or send them some of our stories maybe if they here it from enough

mold victim's they just might start to listen. Invite them to join

the group, let them read first hand what we are dealing with.

Prendisone, once again not good. This is nothing that you all ready

don't know, bless the both of them. What kind of physician's are the

sons, not that this matters, they should open up their eyes, listen

to their parents, get some more education......what do the sons

actually say about the illnesses. This is why I loose so much faith

in most of the medical field. Well, my

> opinion probably did not help you at all, like I said I am not

saying anything that you all ready don't know. Also, if Sharon

reacted in the basement between the mold and the bleach, I hope your

all right. I would try to tell them to also go a different route

other than bleach. Sorry this is long, and not really saying

anything, but thought I would reply anyways. Obviously, they need to

seek other medical attention. Darlene

>

[Guest guest]

My father had the same symptoms, from probably the same medical condition. He is

91 years old. When dealing with the very old, we should throw out what is

considered " sound medical advice " , and just focus on what action will eliminate,

or diminish, the suffering of the patient. At such an advanced age, the only

consideration should be " what will improve the quality of life " for the patient.

My father had a 12 year history of chronic headaches, which, over time,

increased in both frequency of occurrence, duration of each episode, and

intensity of pain, until he reached the point where he had excruciating headache

pain 24 hours a day, 7 days a week, for a period of 6 months, until I made the

observation which stopped the pain completely. I noticed that each time he had

one of his reccurring lung infections (of which he had many, due to a 2 year

long mold exposure) his doctor would put him on an antibiotic and also

prednisone. I observed that, during those medication periods, his headache

disappeared, and returned shortly after weaning himself off of the prednisone.

I hypothesized that the prednisone was responsible for " curing " his headaches.

I discussed this with his doctor, AFTER beginning the treatment on my own, and

the doctor tried different doses of prednisone to find the lowest dose which

would be effective at eliminating the headaches. In my father's case, the dose

was 20 Mg. a day. If the dose was reduced to 15 Mg. a day, the headaches

returned. He has been completely free of chronic headaches for about 5 months.

This result, for a man who was formerly suicidal from excruciating non-stop

headache pain, justifies, in my opinion, throwing out " sound medical advice "

about the evils of prednisone. What do YOU think?

Bear in mind that the prednisone regimen was begun at least 4 months AFTER

removal of the patient from the mold environment. I hon't know whether it would

work while your friend is still in his/her mold environment. From my personal

experiences with mold exposures, nothing worked while I was still in my mold

environment.

I wish them well.

Joe Salowitz