new to group

[Guest guest]

Hi Sharon

I'd like to progress further with the possibilities of TD-DMPS & /or MB12 injections - my biggest problem is Alysia is absolutely terrified of needles & so to do any blood testing I think I'm going to have to drug her up, any idea on what to use???

>>>Whoops, tricky I think! You could always try sublingual MB12, I read of many having positives with it. TD DMPS certaionly does seem to deplete minerals in some kids, although the two days dosing of minerals in one hit I think could be the problem with some of them - inability to absorb and ulitisinig doses in one hit. I think doing RBC minerals at least once to see how its affecting her would be advisable to keep her safe. We have a specilaist Paediatric Phlebotomist from the local hospital draw Sam's blood - there is one girl that never misses luckily for us. Much more difficult the last time since he's mu7ch bigger than a year ago........

Also I've read many back posts on Dr Heard on the list but can't seem to find any contact details, can anyone help?

>>>I hope somebody already posted this if not

www.breakspearmedical.com

Lastly do you tend to use UK consultants & US or go for one or the other? Haven't been able to work that one out going through back posts.

>>>Those that can afford it (and even those who can;t LOL) go to US Drs. Financially that wasn;t an option for us, hence the 5 tears DIY. Dr Usman is the most popular of the US Dr;s, experienced, flexible and unfortunately not taking new patients at this time. She went from 6 weeks - 16 months for a new patient app and decided folks were better off going to see somebody else than wait so long for treatment. She will work with UK Dr for follow up testing and stuff to save reegular trips back to US.Sorry I do have another question up until I read something recently, think it may have come from the ARI site, on NAC we had been giving twice a day - but the info said that NAC was potentially a mega problem in taking heavy metals & dumping them in the brain - does anyone else use NAC?

>>>I have not used it excpet in the small doses that are included in BCN Vitamins. Andy Cutler advises against NAC supplementation UNLESS you have documented Low plasma Cysteine.

If she was doing well on it, I suspect she has low plasma cysteine. You can only get this test at Great Smokies in the US as far as I know.

Since taking NAC out Alysia has definetly been different seeing some old stims (but can't be sure that's not due to RDI as saw that before she made last jump forward) & at times giving up before she's tried unless encouraged to carry something through

>>Alwasy tricky to figure this stuff out, Trail and error all the time - so frustrating!!

Anways, welcome, will need to pick your brains when I finally watch that RDI DVD

Mandi in Dorset

[Guest guest]

In a message dated 07/06/2005 11:33:15 GMT Daylight Time, sharonarmit@... writes:

P.S. On another note read a back post about TD-DMPS & epilepsy my neighbour has 2 girls not ASD (though not totally sure with eldest) who suffer with severe fits, would Dr Heard be able to help them too? Would TD-DMPS be suitable for them - mum thinks their epilespy started re DPT jabs?

>>>I think it may help. Andy Culter usually advises that seizures may get worse before they get better with chelation though.

If she hasn;t tried Taurine for the seizures thats certainly worth a go. Sam has nto had one at all since being on 1000mg every morning. Magnesium and B6 help too.

Another Andy Cutler recommneds in these cases is to try rigorus exclusion of trans fatty acids - cooked fat I think - very very hard, takes a while to see effects. I have a mail of his saved somewhere, I'kk try and find it and post for you

Mandi in Dorset UK

[Guest guest]

HI there. My son is and he was diagnosed when he almost 2 although he has

had the attcks since he was under 1 year old. We are having a tonsillectomy

soon. I am actually excited to try this because it really can't hurt. He may

be in pain for a short while but I will try anything to help reduce the number

of attacks he gets. hopefully it works. I do not agree with the prednisone

therapy because of all of the side effects. It also makes my son very hyper and

makes the fevers come closer together.

Gretchen Danson <gretchendanson@...> wrote:Hi my name is Gretchen and my

son is . is 12 years old and was diagnosed with when he was

8 although he was sick all the time as a baby and I just thought its was

childhood illness or allergies untill I noticed a pattern of re-accurance.

also was having unexplained pain that we could not tell where is was

coming from when he was a toddler and when he was in second grade had medial

stenosis surgery and it was after that we noticed the pattern more, sorry if I

have run on sentences I hav'ent had to talk about this for awhile anyway, we

chose not to put him on prednisone and see what happens, we also decided to

homeschool thinking he would'nt get sick anymore, well we were wrong.....his

fever periods seemed few and far between last summer, however the cycle seems to

be back and bing much older the hit him hard, he is down for 3 days. Our

pediatrician wants us to think about a tonsilectomy now. I'm not

convienced it will help! We also found out that he did

have mono at some time because he is positive for the epbstein-barr virus. Our

dr. dosen't think this is anything to do with the virus, but his symptoms sure

seem like it or maybe CFS? I'm not sure what we should do. Of course I feel like

I'm not doing anything for him if we don't take action, so I always say I'll

just wait and see if he gets sick again and then I'll think again, is that

selfish? Thank for listening. Gretchen

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

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[Guest guest]

HI there. My son is and he was diagnosed when he almost 2 although he has

had the attcks since he was under 1 year old. We are having a tonsillectomy

soon. I am actually excited to try this because it really can't hurt. He may

be in pain for a short while but I will try anything to help reduce the number

of attacks he gets. hopefully it works. I do not agree with the prednisone

therapy because of all of the side effects. It also makes my son very hyper and

makes the fevers come closer together.

Gretchen Danson <gretchendanson@...> wrote: Hi my name is Gretchen and my

son is . is 12 years old and was diagnosed with when he was

8 although he was sick all the time as a baby and I just thought its was

childhood illness or allergies untill I noticed a pattern of re-accurance.

also was having unexplained pain that we could not tell where is was

coming from when he was a toddler and when he was in second grade had medial

stenosis surgery and it was after that we noticed the pattern more, sorry if I

have run on sentences I hav'ent had to talk about this for awhile anyway, we

chose not to put him on prednisone and see what happens, we also decided to

homeschool thinking he would'nt get sick anymore, well we were wrong.....his

fever periods seemed few and far between last summer, however the cycle seems to

be back and bing much older the hit him hard, he is down for 3 days. Our

pediatrician wants us to think about a tonsilectomy now. I'm not

convienced it will help! We also found out that he did

have mono at some time because he is positive for the epbstein-barr virus. Our

dr. dosen't think this is anything to do with the virus, but his symptoms sure

seem like it or maybe CFS? I'm not sure what we should do. Of course I feel like

I'm not doing anything for him if we don't take action, so I always say I'll

just wait and see if he gets sick again and then I'll think again, is that

selfish? Thank for listening. Gretchen

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

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[Guest guest]

Hi Ellyn, my name is . I just wanted to let you know that there is also

another disorder called HIDS that has a lot of the same symptoms along with red

blotches or bumps on the skin. This is a genetic thing that sometimes can be

found with different tests. Many doctors do not think of or even know of this

disorder because it is so extremely rare but I suggest you look some stuff up

and possibly have the testing done if you can.

ellyn.trickey@... wrote:Hi! My name is Ellyn. I have two daughters,

Alyssa (7) & Kate (almost 3)

and a son, (4.5). Although, we have no formal diagnosis my son has

been plagued with fevers over the past year. It actually seemed to start

just over two years ago. Every two weeks he started experiencing episodes

of high fever lasting 3 days without explanation, always resolving on

their own. Just when we were beginning to become seriously concerned the

fevers ended. Or so we thought. June of 2004 the familiar symptomless

fevers made their reappearance. Again ? every two weeks he was stricken

with a high fever. As time progressed he started to complain of stomach

pain and would occasionally have diarrhea and/or vomiting. In the fall

the fevers became less frequent ? about once month. In January the

pediatrician sent us to the E.R. suspecting that might have

appendicitis. At the E.R. they decided he need an I.V., which took 6

attempts to get in. Up until his experience at the E.R. had been

extremely tolerant of the numerous blood tests demanded of him. He did

not have appendicitis and various tests revealed little, other than a

small amount of fluid in his hip. His Rheumatologist is in the process of

petitioning our insurance company for genetic testing. It looks like they

will approve 2 of the 4 tests he wanted to perform, but still no official

word.

Initially after the fevers were over, almost immediately bounced

back to his old self. But lately they seem to be taking much more of a

toll on him. In March he started getting hives almost on a daily basis ?

they come in various sizes and places ? some itchy ? some not. This

lasted for 2 months. And seems to have returned since his last fever

episode. Twice his hands turned bright red for several hours. I took

pictures of this to the Rheumatologist ? who said it was due to

inflammation of the skin or muscle and not joint related. Has anyone else

experienced something such as this? During the last couple months he has

started to complain of leg pains while fevering. His last episodes where

only two weeks apart. The summer months seem to be harder for him for

some reason.

is very small for his age. His sister (18 months younger) is

wearing the same size as him. He is in the height/weight charts he is in

the 10th percentile, while my daughter is in the 90th. But how can he

possibly flourish if he doesn't eat a thing 3 or 4 days every 2 weeks.

After reading many of the messages in this group, I consider us very lucky

at this point. 's pain seems to be minimal in comparison. Although

I do fear what may lay ahead as every episode seems to have more pain and

the episodes are lasting longer.

I think my oldest daughter is starting to be resentful. She's tired of

vacations, day trips and events being spoiled by her brother's fevers.

She, who has only missed 1 day of school in 4 years, has stated numerous

times that she wants to be sick. Although, a short battle with the flu

this spring seems to have cured her of that desire, at least for a while.

I just recently discovered the TRAPS and groups and joined both. I

have been reading through as many messages as I can. Although at times

very emotionally stirring, I can not begin to describe the affect of

having them. Although ? sympathetic, friends and relatives don't seem to

get that he's not " just a kid who gets everything " .

[Guest guest]

Hi . I am also , lol. Seems like there are quite a few of us with that name in this group. You son's curve sounds similar to mine (Ian only has a single curve though). Shriner's in Erie measured him at 29 degrees (cobb)/13 degrees RVAD. I just had a follow up x-ray taken here in VA and he was measured at 27/12 (supine) and 30/13 (standing). When I talked to the patient care coordinator at Shriners, she told me that he probably really hadn't improved any as there is usually a degree or two difference when you have different docs doing the measurements. I haven't talked to Dr. Khoury yet, but the coordinator told me that she thought he'd probably recommend waiting to decide on treatment. I will let you know what he says for sure when I get in touch with him.

I tried to email him, but I think I wrote his email addy down wrong. Anyway, I will let you know what he recommends since our kiddos' curves are so similar.

BTW, I am originally from Western Mass (Agawam) and my family is still there.

Noelle (12-2-01)Ian (8-15-04)

new to group

Hi all. My name is and my second son Jake was recently diagnosed with progressive infantile scoliosis. He was 5 months old when he had a chest x-ray to rule out pneumonia and they found a double curve. Our first ortho read them at 20o/19o and advised we wait and see what happens. Okay or so we thought. The next x-ray showed 20o/14o. We thought this was great! Was it resolving? We thought it was a miracle. The doc then spouted the "you have an 85% chance that it will correct itself" standard line. Wait another 4 months. Now it reads 26o/13o. He told us to put Jake in a soft Boston brace for 23/7. We went for a second opinion @ Boston Children's Hospital. This doc is only concerned about Jake's thoracic curve and he reads it at 24o with an RVAD of 16. He told us Jake had progressive scoli and recommended the boston brace only at night for fear of severe chest wall deformity. We were then fitted for our first brace. Jake just turned 1 year old last week. We will pick up the brace Aug.3. Jake has an MRI on Aug.4 to rule out congenital. Doc didn't want to brace Jake until after the MRI, but my husband and I were afraid to take no action at all so we insisted and doc relented. I still don't think this is aggressive enough. I know time is critical.

I know now (thanks to and the info she sent me along with the Mehta video) that an RVAD of less than 20 is usually good news. Doc didn't tell us what the previous RVAD was, but I figure it must have been less for him to now call it progressive. I don't want to assume anything, so that is a definite question on my list for our next visit. I also know that usually 24o is still considered mild. What are the chances that this doc is wrong? That Jake could have resolving? Am I reaching, hoping for too much?

I do know that after the MRI, I'm sending all of Jake's medical info to Dr. in Erie. I've heard wonderful things about him, and I hope he will be able to help us. He is the closest doc to us here in Mass. I think.....

Just wanted to introduce myself and start posting. I'm going to start reading the old posts, but there are tons! I hate to make anyone repeat themselves, but I would love to hear stories from other parents with more experience. Anyone out there who had a brace work for their children? Or is it truly just a temporary fix? If casting is so effective, why aren't more docs in this country doing it? I know there are lots of PROS to casting; what are the CONS?

Any input would be greatly appreciated. Sorry to ramble...

__________________________________________________

[Guest guest]

BTW, I just realized that your son hasn't had his MRI yet. That is important as it may determine what type of treatment is best for him. Idiopathic cases are treated differently than congenital cases a lot of times.

Noelle (12-2-01)Ian (8-15-04)

new to group

Hi all. My name is and my second son Jake was recently diagnosed with progressive infantile scoliosis. He was 5 months old when he had a chest x-ray to rule out pneumonia and they found a double curve. Our first ortho read them at 20o/19o and advised we wait and see what happens. Okay or so we thought. The next x-ray showed 20o/14o. We thought this was great! Was it resolving? We thought it was a miracle. The doc then spouted the "you have an 85% chance that it will correct itself" standard line. Wait another 4 months. Now it reads 26o/13o. He told us to put Jake in a soft Boston brace for 23/7. We went for a second opinion @ Boston Children's Hospital. This doc is only concerned about Jake's thoracic curve and he reads it at 24o with an RVAD of 16. He told us Jake had progressive scoli and recommended the boston brace only at night for fear of severe chest wall deformity. We were then fitted for our first brace. Jake just turned 1 year old last week. We will pick up the brace Aug.3. Jake has an MRI on Aug.4 to rule out congenital. Doc didn't want to brace Jake until after the MRI, but my husband and I were afraid to take no action at all so we insisted and doc relented. I still don't think this is aggressive enough. I know time is critical.

I know now (thanks to and the info she sent me along with the Mehta video) that an RVAD of less than 20 is usually good news. Doc didn't tell us what the previous RVAD was, but I figure it must have been less for him to now call it progressive. I don't want to assume anything, so that is a definite question on my list for our next visit. I also know that usually 24o is still considered mild. What are the chances that this doc is wrong? That Jake could have resolving? Am I reaching, hoping for too much?

I do know that after the MRI, I'm sending all of Jake's medical info to Dr. in Erie. I've heard wonderful things about him, and I hope he will be able to help us. He is the closest doc to us here in Mass. I think.....

Just wanted to introduce myself and start posting. I'm going to start reading the old posts, but there are tons! I hate to make anyone repeat themselves, but I would love to hear stories from other parents with more experience. Anyone out there who had a brace work for their children? Or is it truly just a temporary fix? If casting is so effective, why aren't more docs in this country doing it? I know there are lots of PROS to casting; what are the CONS?

Any input would be greatly appreciated. Sorry to ramble...

__________________________________________________

[Guest guest]

,

Who is Dr. Khoury? Is this a doc in Erie or in your area? I've read a few posts now and know how critical it is that we treat this early. I don't like the idea of waiting to decide on treatment. I'm scared to wait any longer. We've already been watching this for 8 months. How bad does it have to be before someone will cast? Shouldn't a diagnosis of progressive prompt them to act immediately?

Is your son currently in a brace? What kind? How long? When was he diagnosed? Sorry so many questions. I'm curious about all the variables.

(10-11-01)

Jake (7-24-04)

Our kids seem to be about the same ages! Claflin <noellesmommy@...> wrote:

Hi . I am also , lol. Seems like there are quite a few of us with that name in this group. You son's curve sounds similar to mine (Ian only has a single curve though). Shriner's in Erie measured him at 29 degrees (cobb)/13 degrees RVAD. I just had a follow up x-ray taken here in VA and he was measured at 27/12 (supine) and 30/13 (standing). When I talked to the patient care coordinator at Shriners, she told me that he probably really hadn't improved any as there is usually a degree or two difference when you have different docs doing the measurements. I haven't talked to Dr. Khoury yet, but the coordinator told me that she thought he'd probably recommend waiting to decide on treatment. I will let you know what he says for sure when I get in touch with him.

I tried to email him, but I think I wrote his email addy down wrong. Anyway, I will let you know what he recommends since our kiddos' curves are so similar.

BTW, I am originally from Western Mass (Agawam) and my family is still there.

Noelle (12-2-01)Ian (8-15-04)

new to group

Hi all. My name is and my second son Jake was recently diagnosed with progressive infantile scoliosis. He was 5 months old when he had a chest x-ray to rule out pneumonia and they found a double curve. Our first ortho read them at 20o/19o and advised we wait and see what happens. Okay or so we thought. The next x-ray showed 20o/14o. We thought this was great! Was it resolving? We thought it was a miracle. The doc then spouted the "you have an 85% chance that it will correct itself" standard line. Wait another 4 months. Now it reads 26o/13o. He told us to put Jake in a soft Boston brace for 23/7. We went for a second opinion @ Boston Children's Hospital. This doc is only concerned about Jake's thoracic curve and he reads it at 24o with an RVAD of 16. He told us Jake had progressive scoli and recommended the boston brace only at night for fear of severe chest wall deformity. We

were then fitted for our first brace. Jake just turned 1 year old last week. We will pick up the brace Aug.3. Jake has an MRI on Aug.4 to rule out congenital. Doc didn't want to brace Jake until after the MRI, but my husband and I were afraid to take no action at all so we insisted and doc relented. I still don't think this is aggressive enough. I know time is critical.

I know now (thanks to and the info she sent me along with the Mehta video) that an RVAD of less than 20 is usually good news. Doc didn't tell us what the previous RVAD was, but I figure it must have been less for him to now call it progressive. I don't want to assume anything, so that is a definite question on my list for our next visit. I also know that usually 24o is still considered mild. What are the chances that this doc is wrong? That Jake could have resolving? Am I reaching, hoping for too much?

I do know that after the MRI, I'm sending all of Jake's medical info to Dr. in Erie. I've heard wonderful things about him, and I hope he will be able to help us. He is the closest doc to us here in Mass. I think.....

Just wanted to introduce myself and start posting. I'm going to start reading the old posts, but there are tons! I hate to make anyone repeat themselves, but I would love to hear stories from other parents with more experience. Anyone out there who had a brace work for their children? Or is it truly just a temporary fix? If casting is so effective, why aren't more docs in this country doing it? I know there are lots of PROS to casting; what are the CONS?

Any input would be greatly appreciated. Sorry to ramble...

__________________________________________________

[Guest guest]

, Dr. Khoury works with Dr. in Erie. Ian is not in anything right now. What happened was that my Ortho here took an x-ray that showed Ian at 37 degrees (cobb), so when Dr. K took his x-ray and got 29 degrees he thought he was improving on his own. BUT, I didn't tell Dr. K that Ian was not lying straight in the x-ray taken here in Virginia and that he was listing over to one side. I have since found out that that will alter the perception of the curve. So, where Dr. K thought he was getting better, I now know that he really wasn't getting better, but has probably remained unchanged since his diagnosis at 6 months of age. My son will turn 1 year on August 15th. So, anyway, they decided to leave it untreated as it seemed he was getting better. I just fedexed Ian's new films to Dr. K today. I am going to try to email or speak with him tomorrow about everything.

I can tell you that when I talked to the patient care coordinator she told me she thought his advice would be to wait and watch. His curve is borderline as far as treatment goes...I think they tend to want to cast kids that are over 30-35 degrees. My concern is how deformed his ribs look which is more noticeable to me now that he is walking. On the other hand, I dread casting or bracing because of how it will affect his development especially since he has only been walking for a few weeks

[Guest guest]

Hi and Jake

Welcome to the group! I'm afraid I don't have a lot of experience

with such little kids and scoliosis. My daughter was dx at 2 yrs

with a 23 degree curve which was braced at 35* (3 yrs old), and we

decided to try casting when she got to 45* (by 4 yrs old).

But I have read great things about Dr at Erie Shriners. And

you are doing the right thing by talking to other parents and doing

lots of research.

Just wanted to say Hi and Nice to " meet " you.

Jacki

> Hi all. My name is and my second son Jake was recently

diagnosed with progressive infantile scoliosis. He was 5 months old

when he had a chest x-ray to rule out pneumonia and they found a

double curve. Our first ortho read them at 20o/19o and advised we

wait and see what happens. Okay or so we thought. The next x-ray

showed 20o/14o. We thought this was great! Was it resolving? We

thought it was a miracle. The doc then spouted the " you have an 85%

chance that it will correct itself " standard line. Wait another 4

months. Now it reads 26o/13o. He told us to put Jake in a soft

Boston brace for 23/7. We went for a second opinion @ Boston

Children's Hospital. This doc is only concerned about Jake's

thoracic curve and he reads it at 24o with an RVAD of 16. He told

us Jake had progressive scoli and recommended the boston brace only

at night for fear of severe chest wall deformity. We were then

fitted for our first brace. Jake just turned 1 year old last week.

We

> will pick up the brace Aug.3. Jake has an MRI on Aug.4 to rule

out congenital. Doc didn't want to brace Jake until after the MRI,

but my husband and I were afraid to take no action at all so we

insisted and doc relented. I still don't think this is aggressive

enough. I know time is critical.

>

> I know now (thanks to and the info she sent me along with

the Mehta video) that an RVAD of less than 20 is usually good news.

Doc didn't tell us what the previous RVAD was, but I figure it must

have been less for him to now call it progressive. I don't want to

assume anything, so that is a definite question on my list for our

next visit. I also know that usually 24o is still considered mild.

What are the chances that this doc is wrong? That Jake could have

resolving? Am I reaching, hoping for too much?

>

> I do know that after the MRI, I'm sending all of Jake's medical

info to Dr. in Erie. I've heard wonderful things about him,

and I hope he will be able to help us. He is the closest doc to us

here in Mass. I think.....

>

> Just wanted to introduce myself and start posting. I'm going to

start reading the old posts, but there are tons! I hate to make

anyone repeat themselves, but I would love to hear stories from

other parents with more experience. Anyone out there who had a

brace work for their children? Or is it truly just a temporary

fix? If casting is so effective, why aren't more docs in this

country doing it? I know there are lots of PROS to casting; what

are the CONS?

>

> Any input would be greatly appreciated. Sorry to ramble...

>

>

>

> __________________________________________________

>

[Guest guest]

jen,

thanks for the background information regarding madison. i

had forgotten since there are so many of us now! that is

fabulous news about her " resolving " with the help of casts and

now a brace. would you mind e-mailing a picture or posting it

on the site of her new brace. i am curious about what type it

is. i know that many of us say " tlso or boston " , but they can

look quite different.

also, i wanted to thank you about mentioning comfort baths. i

just called our local medical supply store and they have them

in stock. i will try out a package to see how lucas' skin

reacts to it. knock on wood, but he normally does not have

too sensitive of skin. then i will try and find it in bulk

somewhere. i also noticed that they have hair caps with

shampoo and conditioner that you can wash your hair without

water. did you ever try those? it seems convenient on some

days when i don't have a lot of time for a full sponge bath.

since lucas was out of a cast for 3 weeks and doing a lot of

water activities, i've been nervous about " bath " time and

wanted it to be relatively stress free.

thanks again for your post (although i realize it wasn't

entirely directed at me)

deshea

---- Original message ----

>Date: Wed, 27 Jul 2005 22:26:54 -0700 (PDT)

>From: <jenstewart73@...>

>Subject: Re: new to group

>infantile scoliosis treatment

>

> Hi ! Welcome to the group. I hope you are

> able to find helpful information and lots of support

> here.

>

> My daughter Madison was diagnosed at 6 months

> with a 27 COBB and 32 RVAD. She was put into a TLSO

> the next day. By 8 months, when we got to SLC, her

> mearsurements were up to 52 and 50. She went into a

> series of POP jackets applied by Dr. D'Astous. She

> wore seven total and is now in a new TLSO to

> maintain her correction. We can now officially say

> she has a history of rapidly progressive idiopathic

> infantile scoliosis.

>

> Madison seemed to tolerate all of her casts

> and braces relativly well. Some of her mile stones

> were a little delayed, but only by a month or two.

> She developed some tactile defenses, but has

> " recovered " from all of them through either time,

> OT, or ST.

>

> The draw backs to casting, in my opinion, are

> much more difficult for you to accept than they will

> be for Jake. Since it's a plaster cast, water is

> pretty much out of the question. I would let

> Madison wear a raincoat or wet suit to run through a

> sprinkler and she seemed pretty happy with it. I

> batherd her in the sink a few times a week and the

> rest were comfort baths. (these can be purchased at

> a medical supply store) Diaper changing is a bit of

> a challenge in the begining, but once you get it

> down and figure out what works best for the two of

> you, then it's a piece of cake. To me, much easier

> than in a brace. You have to be very " germ

> cautious " . Coughing would be difficult and could

> delay an OR date because of anathesia. There is a

> chance of chest wall deformity, Madison didn't

> develop any. Of course the normal precautions that

> go along with OR, and finally skin breakdown.

> Madison did de! velop some skin break down. I took

> her to have her cast trimmed in that area, treated

> it with spoam, bacitracin, and biafine WDE and she

> was fine within a few days.

>

> As far as I see it, her perfectly straight

> spine out weighs these possible cons. What I told

> myself is this....if she gets chest wall deformity,

> it's treatable and she'll still be alive, if she

> gets skin break down, it's treatable and she'll

> still be alive, If I stay on constant germ hunt,

> I'll clean more than I'd like, but she'll still be

> alive. She progressed very rapidly in the first

> brace, and if nothing else she won't progress in a

> cast. The worst thing that could happen is that she

> wouldn't get any better. These are the things I

> looked at and I can now say 7 casts and 14 months

> later she's absolutely fine. Her spine is straight,

> her skin and chest wall are perfectly normal, her

> tactile defenses are all gone, and she's a very

> happy, normal toddler now. We will never to be able

> to fully convey our true appreciation to ,

> Ms. Mehta, Dr. D'Astous, and the entire SLC

> Shriner's team, CAST, and ISOP.

>

> I hope this answers some of your questions. I

> also wish you the best for the MRI. I know you and

> your family must have a thousand questions right and

> feel very apprhensive about all of this. You're

> doing the right thing though. You're researching,

> looking at all of you options, and being Jake's

> advocate. You have to fight for him since he can't

> do it for himself. There a a lot of really

> supportve and knowledgable parents on this group.

> Once again, we welcome you and your family and wish

> you all the best!

>

> Jen

>

> Viveiros <jviv314@...> wrote:

>

> Hi all. My name is and my second son

> Jake was recently diagnosed with progressive

> infantile scoliosis. He was 5 months old when he

> had a chest x-ray to rule out pneumonia and they

> found a double curve. Our first ortho read them

> at 20o/19o and advised we wait and see what

> happens. Okay or so we thought. The next x-ray

> showed 20o/14o. We thought this was great! Was

> it resolving? We thought it was a miracle. The

> doc then spouted the " you have an 85% chance that

> it will correct itself " standard line. Wait

> another 4 months. Now it reads 26o/13o. He told

> us to put Jake in a soft Boston brace for 23/7.

> We went for a second opinion @ Boston Children's

> Hospital. This doc is only concerned about Jake's

> thoracic curve and he reads it at 24o with an RVAD

> of 16. He told us Jake had progressive scoli and

> recommended the boston brace only at night for

> fear of severe chest wall deformity. & n! bsp; We

> were then fitted for our first brace. Jake just

> turned 1 year old last week. We will pick up the

> brace Aug.3. Jake has an MRI on Aug.4 to rule out

> congenital. Doc didn't want to brace Jake until

> after the MRI, but my husband and I were afraid to

> take no action at all so we insisted and doc

> relented. I still don't think this is aggressive

> enough. I know time is critical.

>

> I know now (thanks to and the info she

> sent me along with the Mehta video) that an RVAD

> of less than 20 is usually good news. Doc didn't

> tell us what the previous RVAD was, but I figure

> it must have been less for him to now call it

> progressive. I don't want to assume anything, so

> that is a definite question on my list for our

> next visit. I also know that usually 24o is still

> considered mild. What are the chances that this

> doc is wrong? That Jake could have resolving? Am

> I reaching, hoping for too much?

>

> I do know that after the MRI, I'm sending all of

> Jake's medical info to Dr. in Erie. I've

> heard wonderful things about him, and I hope he

> will be able to help us. He is the closest doc to

> us here in Mass. I think.....

>

> Just wanted to introduce myself and start

> posting. I'm going to start reading the old

> posts, but there are tons! I hate to make anyone

> repeat themselves, but I would love to hear

> stories from other parents with more experience.

> Anyone out there who had a brace work for their

> children? Or is it truly just a temporary fix?

> If casting is so effective, why aren't more docs

> in this country doing it? I know there are lots

> of PROS to casting; what are the CONS?

>

> Any input would be greatly appreciated. Sorry to

> ramble...

>

>

>

> __________________________________________________

>

[Guest guest]

jen,

thanks for the background information regarding madison. i

had forgotten since there are so many of us now! that is

fabulous news about her " resolving " with the help of casts and

now a brace. would you mind e-mailing a picture or posting it

on the site of her new brace. i am curious about what type it

is. i know that many of us say " tlso or boston " , but they can

look quite different.

also, i wanted to thank you about mentioning comfort baths. i

just called our local medical supply store and they have them

in stock. i will try out a package to see how lucas' skin

reacts to it. knock on wood, but he normally does not have

too sensitive of skin. then i will try and find it in bulk

somewhere. i also noticed that they have hair caps with

shampoo and conditioner that you can wash your hair without

water. did you ever try those? it seems convenient on some

days when i don't have a lot of time for a full sponge bath.

since lucas was out of a cast for 3 weeks and doing a lot of

water activities, i've been nervous about " bath " time and

wanted it to be relatively stress free.

thanks again for your post (although i realize it wasn't

entirely directed at me)

deshea

---- Original message ----

>Date: Wed, 27 Jul 2005 22:26:54 -0700 (PDT)

>From: <jenstewart73@...>

>Subject: Re: new to group

>infantile scoliosis treatment

>

> Hi ! Welcome to the group. I hope you are

> able to find helpful information and lots of support

> here.

>

> My daughter Madison was diagnosed at 6 months

> with a 27 COBB and 32 RVAD. She was put into a TLSO

> the next day. By 8 months, when we got to SLC, her

> mearsurements were up to 52 and 50. She went into a

> series of POP jackets applied by Dr. D'Astous. She

> wore seven total and is now in a new TLSO to

> maintain her correction. We can now officially say

> she has a history of rapidly progressive idiopathic

> infantile scoliosis.

>

> Madison seemed to tolerate all of her casts

> and braces relativly well. Some of her mile stones

> were a little delayed, but only by a month or two.

> She developed some tactile defenses, but has

> " recovered " from all of them through either time,

> OT, or ST.

>

> The draw backs to casting, in my opinion, are

> much more difficult for you to accept than they will

> be for Jake. Since it's a plaster cast, water is

> pretty much out of the question. I would let

> Madison wear a raincoat or wet suit to run through a

> sprinkler and she seemed pretty happy with it. I

> batherd her in the sink a few times a week and the

> rest were comfort baths. (these can be purchased at

> a medical supply store) Diaper changing is a bit of

> a challenge in the begining, but once you get it

> down and figure out what works best for the two of

> you, then it's a piece of cake. To me, much easier

> than in a brace. You have to be very " germ

> cautious " . Coughing would be difficult and could

> delay an OR date because of anathesia. There is a

> chance of chest wall deformity, Madison didn't

> develop any. Of course the normal precautions that

> go along with OR, and finally skin breakdown.

> Madison did de! velop some skin break down. I took

> her to have her cast trimmed in that area, treated

> it with spoam, bacitracin, and biafine WDE and she

> was fine within a few days.

>

> As far as I see it, her perfectly straight

> spine out weighs these possible cons. What I told

> myself is this....if she gets chest wall deformity,

> it's treatable and she'll still be alive, if she

> gets skin break down, it's treatable and she'll

> still be alive, If I stay on constant germ hunt,

> I'll clean more than I'd like, but she'll still be

> alive. She progressed very rapidly in the first

> brace, and if nothing else she won't progress in a

> cast. The worst thing that could happen is that she

> wouldn't get any better. These are the things I

> looked at and I can now say 7 casts and 14 months

> later she's absolutely fine. Her spine is straight,

> her skin and chest wall are perfectly normal, her

> tactile defenses are all gone, and she's a very

> happy, normal toddler now. We will never to be able

> to fully convey our true appreciation to ,

> Ms. Mehta, Dr. D'Astous, and the entire SLC

> Shriner's team, CAST, and ISOP.

>

> I hope this answers some of your questions. I

> also wish you the best for the MRI. I know you and

> your family must have a thousand questions right and

> feel very apprhensive about all of this. You're

> doing the right thing though. You're researching,

> looking at all of you options, and being Jake's

> advocate. You have to fight for him since he can't

> do it for himself. There a a lot of really

> supportve and knowledgable parents on this group.

> Once again, we welcome you and your family and wish

> you all the best!

>

> Jen

>

> Viveiros <jviv314@...> wrote:

>

> Hi all. My name is and my second son

> Jake was recently diagnosed with progressive

> infantile scoliosis. He was 5 months old when he

> had a chest x-ray to rule out pneumonia and they

> found a double curve. Our first ortho read them

> at 20o/19o and advised we wait and see what

> happens. Okay or so we thought. The next x-ray

> showed 20o/14o. We thought this was great! Was

> it resolving? We thought it was a miracle. The

> doc then spouted the " you have an 85% chance that

> it will correct itself " standard line. Wait

> another 4 months. Now it reads 26o/13o. He told

> us to put Jake in a soft Boston brace for 23/7.

> We went for a second opinion @ Boston Children's

> Hospital. This doc is only concerned about Jake's

> thoracic curve and he reads it at 24o with an RVAD

> of 16. He told us Jake had progressive scoli and

> recommended the boston brace only at night for

> fear of severe chest wall deformity. & n! bsp; We

> were then fitted for our first brace. Jake just

> turned 1 year old last week. We will pick up the

> brace Aug.3. Jake has an MRI on Aug.4 to rule out

> congenital. Doc didn't want to brace Jake until

> after the MRI, but my husband and I were afraid to

> take no action at all so we insisted and doc

> relented. I still don't think this is aggressive

> enough. I know time is critical.

>

> I know now (thanks to and the info she

> sent me along with the Mehta video) that an RVAD

> of less than 20 is usually good news. Doc didn't

> tell us what the previous RVAD was, but I figure

> it must have been less for him to now call it

> progressive. I don't want to assume anything, so

> that is a definite question on my list for our

> next visit. I also know that usually 24o is still

> considered mild. What are the chances that this

> doc is wrong? That Jake could have resolving? Am

> I reaching, hoping for too much?

>

> I do know that after the MRI, I'm sending all of

> Jake's medical info to Dr. in Erie. I've

> heard wonderful things about him, and I hope he

> will be able to help us. He is the closest doc to

> us here in Mass. I think.....

>

> Just wanted to introduce myself and start

> posting. I'm going to start reading the old

> posts, but there are tons! I hate to make anyone

> repeat themselves, but I would love to hear

> stories from other parents with more experience.

> Anyone out there who had a brace work for their

> children? Or is it truly just a temporary fix?

> If casting is so effective, why aren't more docs

> in this country doing it? I know there are lots

> of PROS to casting; what are the CONS?

>

> Any input would be greatly appreciated. Sorry to

> ramble...

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Deshea,

I just wondered if you could post a pic of Lucus in his new cast. It is underarm isn't it but with Dr Mehta's mushroom shaped hole. Did they give you any reason why they thought it split last time? My husband is taking Bridget for this cast change on Aug 10th in SLC and I will be interested to make sure they stick to the same sort of casts as this one as it has been so good and she is able to eat so much more. Of course I am anxious to see what results we have managed to attain and to make sure my husband asks all the right questions.

Bert

thanks

Bert"Deshea L. " <deshea@...> wrote:

jen,thanks for the background information regarding madison. ihad forgotten since there are so many of us now! that isfabulous news about her "resolving" with the help of casts andnow a brace. would you mind e-mailing a picture or posting iton the site of her new brace. i am curious about what type itis. i know that many of us say "tlso or boston", but they canlook quite different.also, i wanted to thank you about mentioning comfort baths. ijust called our local medical supply store and they have themin stock. i will try out a package to see how lucas' skinreacts to it. knock on wood, but he normally does not havetoo sensitive of skin. then i will try and find it in bulksomewhere. i also noticed that they have hair caps withshampoo and conditioner that you

can wash your hair withoutwater. did you ever try those? it seems convenient on somedays when i don't have a lot of time for a full sponge bath.since lucas was out of a cast for 3 weeks and doing a lot ofwater activities, i've been nervous about "bath" time andwanted it to be relatively stress free.thanks again for your post (although i realize it wasn'tentirely directed at me)deshea ---- Original message ---->Date: Wed, 27 Jul 2005 22:26:54 -0700 (PDT)>From: <jenstewart73@...> >Subject: Re: new to group >infantile scoliosis treatment >> Hi ! Welcome to the group. I hope you are> able to find helpful information and lots of support> here. > > My daughter Madison was

diagnosed at 6 months> with a 27 COBB and 32 RVAD. She was put into a TLSO> the next day. By 8 months, when we got to SLC, her> mearsurements were up to 52 and 50. She went into a> series of POP jackets applied by Dr. D'Astous. She> wore seven total and is now in a new TLSO to> maintain her correction. We can now officially say> she has a history of rapidly progressive idiopathic> infantile scoliosis.> > Madison seemed to tolerate all of her casts> and braces relativly well. Some of her mile stones> were a little delayed, but only by a month or two. > She developed some tactile defenses, but has> "recovered" from all of them through either

time,> OT, or ST. > > The draw backs to casting, in my opinion, are> much more difficult for you to accept than they will> be for Jake. Since it's a plaster cast, water is> pretty much out of the question. I would let> Madison wear a raincoat or wet suit to run through a> sprinkler and she seemed pretty happy with it. I> batherd her in the sink a few times a week and the> rest were comfort baths. (these can be purchased at> a medical supply store) Diaper changing is a bit of> a challenge in the begining, but once you get it> down and figure out what works best for the two of> you, then it's a piece of cake. To me, much easier> than in a

brace. You have to be very "germ> cautious". Coughing would be difficult and could> delay an OR date because of anathesia. There is a> chance of chest wall deformity, Madison didn't> develop any. Of course the normal precautions that> go along with OR, and finally skin breakdown. > Madison did de! velop some skin break down. I took> her to have her cast trimmed in that area, treated> it with spoam, bacitracin, and biafine WDE and she> was fine within a few days. > > As far as I see it, her perfectly straight> spine out weighs these possible cons. What I told> myself is this....if she gets chest wall deformity,> it's treatable and she'll still be

alive, if she> gets skin break down, it's treatable and she'll> still be alive, If I stay on constant germ hunt,> I'll clean more than I'd like, but she'll still be> alive. She progressed very rapidly in the first> brace, and if nothing else she won't progress in a> cast. The worst thing that could happen is that she> wouldn't get any better. These are the things I> looked at and I can now say 7 casts and 14 months> later she's absolutely fine. Her spine is straight,> her skin and chest wall are perfectly normal, her> tactile defenses are all gone, and she's a very> happy, normal toddler now. We will never to be able> to fully convey our true appreciation to ,> Ms. Mehta, Dr.

D'Astous, and the entire SLC> Shriner's team, CAST, and ISOP. > > I hope this answers some of your questions. I> also wish you the best for the MRI. I know you and> your family must have a thousand questions right and> feel very apprhensive about all of this. You're> doing the right thing though. You're researching,> looking at all of you options, and being Jake's> advocate. You have to fight for him since he can't> do it for himself. There a a lot of really> supportve and knowledgable parents on this group. > Once again, we welcome you and your family and wish> you all the best!> >

Jen>> Viveiros <jviv314@...> wrote:>> Hi all. My name is and my second son> Jake was recently diagnosed with progressive> infantile scoliosis. He was 5 months old when he> had a chest x-ray to rule out pneumonia and they> found a double curve. Our first ortho read them> at 20o/19o and advised we wait and see what> happens. Okay or so we thought. The next x-ray> showed 20o/14o. We thought this was great! Was> it resolving? We thought it was a miracle. The> doc then spouted the "you have an 85% chance that> it will correct itself"

standard line. Wait> another 4 months. Now it reads 26o/13o. He told> us to put Jake in a soft Boston brace for 23/7. > We went for a second opinion @ Boston Children's> Hospital. This doc is only concerned about Jake's> thoracic curve and he reads it at 24o with an RVAD> of 16. He told us Jake had progressive scoli and> recommended the boston brace only at night for> fear of severe chest wall deformity. & n! bsp; We> were then fitted for our first brace. Jake just> turned 1 year old last week. We will pick up the> brace Aug.3. Jake has an MRI on Aug.4 to rule out>

congenital. Doc didn't want to brace Jake until> after the MRI, but my husband and I were afraid to> take no action at all so we insisted and doc> relented. I still don't think this is aggressive> enough. I know time is critical.> > I know now (thanks to and the info she> sent me along with the Mehta video) that an RVAD> of less than 20 is usually good news. Doc didn't> tell us what the previous RVAD was, but I figure> it must have been less for him to now call it> progressive. I don't want to assume anything, so> that is a definite question on my list for

our> next visit. I also know that usually 24o is still> considered mild. What are the chances that this> doc is wrong? That Jake could have resolving? Am> I reaching, hoping for too much?> > I do know that after the MRI, I'm sending all of> Jake's medical info to Dr. in Erie. I've> heard wonderful things about him, and I hope he> will be able to help us. He is the closest doc to> us here in Mass. I think..... > > Just wanted to introduce myself and start> posting. I'm going to start reading the

old> posts, but there are tons! I hate to make anyone> repeat themselves, but I would love to hear> stories from other parents with more experience. > Anyone out there who had a brace work for their> children? Or is it truly just a temporary fix? > If casting is so effective, why aren't more docs> in this country doing it? I know there are lots> of PROS to casting; what are the CONS? > > Any input would be greatly appreciated. Sorry to> ramble...> > >>

__________________________________________________>

[Guest guest]

hi bert,we talked to dr. sanders prior to getting lucas' new cast put on trying to decide what to do:  over the arm or under the arm.  he did not have a preference and thought that at least in lucas' case that the under the arm seemed to "correct" cobb, rvad, and rotation just as well as the over the arm.  honestly, we prefer the under the arm for pure aesthetic reasons -- less obvious that he has a cast and it is easier to clean him and not worry about getting the cast wet.  lucas had no differences in mobility between the two types.  dr. sanders did like the mushroom shape stomach hole, and we did notice that lucas' lowest rib on one side seemed to be protruding a bit so this type can address that.  as for the last cast cracking, it is possibly for two reasons:  1.  maybe a bad batch of plaster/fiberglass in addition to not enough being put on and/or 2.  the sides came down vertically from the arm pit and then went into the waist/right above the hips horizontally.  it looked like a shelf to us.  that is where it broke from the stomach hole to the hole in the back.  this cast doesn't look anything like that.  it does have the mushroom, but the sides look like the old casts.  and the or nurse said that wrapped the crap out of this one so it wouldn't crack.  anyway, i will e-mail pictures here, and then eventually post them on my website.  i want to get some gardening done before it starts raining here.also, i think that we are going to do some arts and crafts today and decorate his cast!you're going back to slc soon, right?  good luck! deshealucas & rubyOn Jul 30, 2005, at 5:17 AM, bert lehane wrote: Hi Deshea,    I just wondered if you could post a pic of Lucus in his new cast.  It is underarm isn't it but with Dr Mehta's mushroom shaped hole.  Did they give you any reason why they thought it split last time? My husband is taking Bridget for this cast change on Aug 10th in SLC and I will be interested to make sure they stick to the same sort of casts as this one as it has been so good and she is able to eat so much more.  Of course I am anxious to see what results we have managed to attain and to make sure my husband asks all the right questions.   Bert   thanks Bert"Deshea L. " <deshea@...> wrote: jen,thanks for the background information regarding madison.  ihad forgotten since there are so many of us now!  that isfabulous news about her "resolving" with the help of casts andnow a brace.  would you mind e-mailing a picture or posting iton the site of her new brace.  i am curious about what type itis.  i know that many of us say "tlso or boston", but they canlook quite different.also, i wanted to thank you about mentioning comfort baths.  ijust called our local medical supply store and they have themin stock.  i will try out a package to see how lucas' skinreacts to it.  knock on wood, but he normally does not havetoo sensitive of skin.  then i will try and find it in bulksomewhere.  i also noticed that they have hair caps withshampoo and conditioner that! you can wash your hair withoutwater.  did you ever try those?  it seems convenient on somedays when i don't have a lot of time for a full sponge bath.since lucas was out of a cast for 3 weeks and doing a lot ofwater activities, i've been nervous about "bath" time andwanted it to be relatively stress free.thanks again for your post (although i realize it wasn'tentirely directed at me)deshea ---- Original message ---->Date: Wed, 27 Jul 2005 22:26:54 -0700 (PDT)>From: <jenstewart73@...> >Subject: Re: new to group  >infantile scoliosis treatment >>   Hi !  Welcome to the group.  I hope you are>   able to find helpful information and lots of support>   here. >    >        My daughter Madison was diagnosed at 6 months>   with a 27 COBB and 32 RVAD.  She was put into a TLSO>   the next day.  By 8 months, when we got to SLC, her>   mearsurements were up to 52 and 50.  She went into a>   series of POP jackets applied by Dr. D'Astous.  She>   wore seven total and is now in a new TLSO to>   maintain her correction.  We can now officially say>   she has a history of rapidly progressive idiopathic>   infantile scoliosis.>    >          Madison seemed to tolerate all of her casts>   and braces relativly well.  Some of her mile stones>   were a little delayed, but only by a month or two. >   She developed some tactile defenses, but has>   "recovered" from all of them through! either time,>   OT, or ST. >    >       The draw backs to casting, in my opinion, are>   much more difficult for you to accept than they will>   be for Jake.  Since it's a plaster cast, water is>   pretty much out of the question.  I would let>   Madison wear a raincoat or wet suit to run through a>   sprinkler and she seemed pretty happy with it.  I>   batherd her in the sink a few times a week and the>   rest were comfort baths.  (these can be purchased at>   a medical supply store)  Diaper changing is a bit of>   a challenge in the begining, but once you get it>   down and figure out what works best for the two of>   you, then it's a piece of cake.  To me, much easier>   than! in a brace.  You have to be very "germ>   cautious".  Coughing would be difficult and could>   delay an OR date because of anathesia.  There is a>   chance of chest wall deformity, Madison didn't>   develop any.  Of course the normal precautions that>   go along with OR, and finally skin breakdown. >   Madison did de! velop some skin break down.  I took>   her to have her cast trimmed in that area, treated>   it with spoam, bacitracin, and biafine WDE and she>   was fine within a few days. >    >        As far as I see it, her perfectly straight>   spine out weighs these possible cons.  What I told>   myself is this....if she gets chest wall deformity,>   it's treatable and she'll still b! e alive, if she>   gets skin break down, it's treatable and she'll>   still be alive, If I stay on constant germ hunt,>   I'll clean more than I'd like, but she'll still be>   alive.  She progressed very rapidly in the first>   brace, and if nothing else she won't progress in a>   cast.  The worst thing that could happen is that she>   wouldn't get any better.  These are the things I>   looked at and I can now say 7 casts and 14 months>   later she's absolutely fine.  Her spine is straight,>   her skin and chest wall are  perfectly normal, her>   tactile defenses are all gone, and she's a very>   happy, normal toddler now.  We will never to be able>   to fully convey our true appreciation to ,>   Ms. Mehta, ! Dr. D'Astous, and the entire SLC>   Shriner's team, CAST, and ISOP. >       >        I hope this answers some of your questions.  I>   also wish you the best for the MRI.  I know you  and>   your family must have a thousand questions right and>   feel very apprhensive about all of this.  You're>   doing the right thing though.  You're researching,>   looking at all of you options, and being Jake's>   advocate.  You have to fight for him since he can't>   do it for himself.  There a a lot of really>   supportve and knowledgable parents on this group. >   Once again, we welcome you and your family and wish>   you all the best!>    >   Jen>>   Viveiros <jviv314@...> wrote:>>     Hi all.  My name is and my second son>     Jake was recently diagnosed with progressive>     infantile scoliosis.  He was 5 months old when he>     had a chest x-ray to rule out pneumonia and they>     found a double curve.  Our first ortho read them>     at 20o/19o and advised we wait and see what>     happens.  Okay or so we thought.  The next x-ray>     showed 20o/14o.  We thought this was great!  Was>     it resolving?  We thought it was a miracle.  The>     doc then spouted the "you have an 85% chance that>     it will correct itsel! f" standard line.  Wait>     another 4 months.  Now it reads 26o/13o.  He told>     us to put Jake in a soft Boston brace for 23/7. >     We went for a second opinion @ Boston Children's>     Hospital.  This doc is only concerned about Jake's>     thoracic curve and he reads it at 24o with an RVAD>     of 16.  He told us Jake had progressive scoli and>     recommended the boston brace only at night for>     fear of severe chest wall deformity. & n! bsp; We>     were then fitted for our first brace.  Jake just>     turned 1 year old last week.  We will pick up the>     brace Aug.3.  Jake has an MRI on Aug.4 to rule out>    & nb! sp; congenital.  Doc didn't want to brace Jake until>     after the MRI, but my husband and I were afraid to>     take no action at all so we insisted and doc>     relented.  I still don't think this is aggressive>     enough.  I know time is critical.>      >     I know now (thanks to and the info she>     sent me along with the Mehta video) that an RVAD>     of less than 20 is usually good news.  Doc didn't>     tell us what the previous RVAD was, but I figure>     it must have been less for him to now call it>     progressive.  I don't want to assume anything, so>     that is a definite question on my list for our>     next visit.  I also know that usually 24o is still>     considered mild.  What are the chances that this>     doc is wrong?  That Jake could have resolving?  Am>     I reaching, hoping for too much?>      >     I do know that after the MRI, I'm sending all of>     Jake's medical info to Dr. in Erie.  I've>     heard wonderful things about him, and I hope he>     will be able to help us.  He is the closest doc to>     us here in Mass. I think..... >      >     Just wanted to introduce myself and start>     posting.  I'm going to start reading the old>     posts, but there are tons!  I hate to make anyone>     repeat themselves, but I would love to hear>     stories from other parents with more experience. >     Anyone out there who had a brace work for their>     children?  Or is it truly just a temporary fix? >     If casting is so effective, why aren't more docs>     in this country doing it?  I know there are lots>     of PROS to casting; what are the CONS? >      >     Any input would be greatly appreciated.  Sorry to>     ramble...>      >     >>     __________________________________________________>    

[Guest guest]

Hello Yasmin

Let me introduce myself I am a mother of a 2yrs 10mths old son with Autism non verbal, very hyperactive and mostly constipated and has really bad eczema as well. I am new to biomedical don't really know where to start.

>>We've all been there

I have been supplimenting him with CLO for couple of months now, houstons enzymes, I am not following any diet, occational epsom salt bath as this makes his eczema worse, and he is being treated homeopathicaly for the last 9 months (Hyocyamus 200, Belladonna 200, and recently single dose of DPT remedy). None of which really has made any tremendouse difference to his behaviour or speech.

>>>Sam has/had eczema - it goes away when we get his gut flora balanced (good bacteria). Its easier said than done though, keeping low sugar helps and going cold turley on sugar brought the biggest die off reaction Sam has ever had, much worse than either Rx or OTC antifungals.

I am now thinking to start him on a good suppliments, any advice will be appriciated, I perticularly want to know which combination to follow, all in one formula or single suppliments I am really lost.

>>>Testing helps target supplementation but we can't all afford that Brainchild Nutritionals is consdiered by many to be the Rolls Royce of multi formula's. Dr Megsons line Spectrum support I have seen good things about.

I am not seeing any DAN doctors so any information will be greatly appriciated, has anyone experience with Kirman- Spectrum complet,DMG -keen to start my son on them also can anyone tell me if I need to book ticket in advance for Micheal Lang 10th August 05.

>>>Yes I use Kirkman. Best to get sample sizes from the US site, if you like it you can buy regular sizes at the nutricentre in London or order from Cally (details in file section) who passes on her practtioner discount.

You can pay at the door for Langs talk - just let me know how many seats you want saved and I'll put you on the registration list. I am getting excited about meeting so many folks from cyber space!

Mandi in Dorset

[Guest guest]

No you cant just get it by lving with him

Blood on blood contact transfusions before 1992 IV drug use and sharing needles

are ways to get it

He needs to keep cuts covered ,

no sharing tooth brushes, razors,

combs, brushes He needs his own personal one

finger nail files, clippers also

Drinking or eating after not harmful either

The drug companies alot of times will help

pay for treatment they are Roche and Schering both are on line

If ya qualify. there is natural ways of helping liver out if not able to treat

wont get rid of it but may help the liver abit there are amny helpful ones will

tell ya what ya need One is milk thistle

many use it

You will get many replies from the group here we are here to help dont hesitate

at all to ask. we are in it together

If in question about the children Have them checked if possible Better safe than

sorry.

I had mine checked and came back negative

I was a drug user till not too long ago myself. Had this 25 years didnt know it

till nov last year

Anything on internet with liver or hep c will help ya out

www.americanliverfoundation.com

Good place to start

Oh Im Annita

From Oregon

I was dx Nov Started treatment feb

Undetected at 4 months

cant cure the disease

but can treat it

Post anytime we will all try to help

okseven_7

__________________________________________________

[Guest guest]

oh look who's feeling beeter!! Thats good ok_seven ric

[Guest guest]

Hi Carol

Welcome to our group.. I am becomming an ND (naturopathic doctor) and have a

long background in emergency medicine. Please believe me when I say that there

is nothing on the planet that is 'natural' that will cure this disease,,, I

would know if there were.. the natural stuff can help the liver hold its own in

some cases but it wont cure it.. The only tx that can kill this virus is the

current pegged INF and Riba,, at THIS TIME. There are many things in the drug

pipeline that look promissing but Colloidal Silver is not one of them. Silver

might be helpful topically but there are NO real studies to show that it can

cure hep c even tho it does have anti-viral properties. The only thing I know

that can help the liver is alpha lipoic acid, Milk thistle, schizzandra...

I sure hope your son and his wife will read a lot and learn about this disease

and can make an educated decision about tx. Liver failure is an aweful way to

die.

There are ways to get treatment from the drug companies themselves. The do set

aside the meds for those who have no insurance, so they would need to write to

Scherring and to Roche and see what they could do for them.. But they must have

liver biopsy first to see how much damage and they need to know their genotype

also.. If they are overweight and geno 1, then the scherring product has shown a

bit higher odds at getting this dragon.. but if one is other than geno 1, not

overweight, I think either will do altho some pple say side effects are less

with roche , but then again, we have heard some very serious sides from Roche's

product that we didnt see with Scherring.... So first off they need to know what

genotype they are and what stage of damage they have before deciding what else

they could do... Just my 2 cents and Im sure others will come along and give

you some other ideas.. welcome to the club, jackie

carolfst <carolfst@...> wrote:

Hi, my name is Carol and I joined you because my son, age 36, has just

been told he has hep C. He has been a drug user and his wife, also a

user, has it. He has no insurance so he can do nothing as far as

extensive tests or prescription drugs. I've been reading about

alternative treatments and some of the silver meds seem encouraging.

My question is about others at risk.

My son is living with me at this time and so are my 2 grandchildren.

Are we at risk from just living with him?

I think not, but I need to make sure I'm protecting my grandkids who

have been in my custody for 3 years now.

Thanks for your input.

Carol

It's a pleasure having you join in our conversations. We hope you have found the

support you need with us.

If you are using email for your posts, for easy access to our group, just click

the link-- Hepatitis C/

Happy Posting

[Guest guest]

doing ok and yourself

>

> oh look who's feeling beeter!! Thats good ok_seven ric

[Guest guest]

Hi Sherry, and welcome. I'm sorry you have to be here, but glad you found

us. My name is , I'm 27, married, no children, 2 pets, living in

Oregon, USA. I have Diabetes, Degenerative disk/joint disease,

Fibromyalgia, congenital deafness in my left ear, Mondini's Displasia

(hearing related), and a few other regularly rotating things. I don't think

51 sounds old at all! We have lots of people of different ages, backgrounds

and such. Although I'm 27, I'm feeling more like 37 honestly. I believe

this group is a caring group of people who are very understanding and

incredibly wonderful. We are all very understanding of illness, and we do

not expect people to be here all the time talking, so please feel free to

pop in when you feel up to it, but always ask for support when you need it.

It is wonderful (for me anyway ) to be in a place where people understand

what I am going through. It is a very freeing feeling for me.

Once again, welcome, and I hope you like it here!

Hugs,

New to Group

Hi, I am Sherry. I'm not new to being sick. I just found this group. I

have tried several others and quit trying. I have ATM, MS, Chemical

Diabeties, among others. I am from Mississippi and am 51 years old.

God, that sounds old. I hope to be talking to ya'll a good bit.

~~~~ *** ~~~ *** ~~~ *** ~~~~

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When nothing is sure, everything is possible.

--- Margaret Drabble

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

hello sherry. i joined the group because my six year old son has cystic fibrosis and asthma. i live in ohio. hope all is well with you.

evelynshrrysms <shrrysms@...> wrote:

Hi, I am Sherry. I'm not new to being sick. I just found this group. I have tried several others and quit trying. I have ATM, MS, Chemical Diabeties, among others. I am from Mississippi and am 51 years old. God, that sounds old. I hope to be talking to ya'll a good bit. ~~~~ *** ~~~ *** ~~~ *** ~~~~The Being Sick CommunityMessage Archives-/messagesChat:- Scheduled Chats at /chatBookmarks:-Add a website URL you have found useful./linksPersonal Complaints or problems:-Please contact a moderator email: -owner Subscription Details:-1) Individual email - means that every email sent to the list you receive.2) Daily Digest - sends you

25 messages in one single email for you to browse. This is an excellent option if you receive alot of email.3) Web only/No mail - means that you can pop into groups at your convenience and receive no email.To modify your subscription settings please visit:- /joinTo subscribe or unsubscribe please email:--subscribe -unsubscribe This group is not intended to diagnose or treat illnesses. No one on this group is qualified to diagnose medical conditions. If you feel you need medical attention, seek the advice of a qualified physician.~~~~ *** ~~~ *** ~~~ *** ~~~~When nothing is sure, everything is possible.--- Margaret Drabble~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

Hello Sherry

What is Chemical Diabetes? I was diagnosed with Type II back in

2002 but I think I'm mostly borderline and it was just that the

treatment for CHF was such that it stressed my Pancreas to the point

where it took a vacation (hopefully it's back on the job by now).

They still have me on insulin to be on the safe side but I've gone

weeks without when I travel and forget to pack my meds (usually can

get most meds but the insulin I use is only available in the US, the

pharmaceuticals do that to maximize profit from a new med).

Are there a lot of damage from Katrina where you are? Rita blew done

a few trees and knocked out some street lights but all the damage

around here was from the mass evacuation and from spoiled food from

the power outages.

Regards,

On Oct 28, 2005, at 1:56 AM, shrrysms wrote:

> Hi, I am Sherry. I'm not new to being sick. I just found this group. I

> have tried several others and quit trying. I have ATM, MS, Chemical

> Diabeties, among others. I am from Mississippi and am 51 years old.

> God, that sounds old. I hope to be talking to ya'll a good bit.

>

[Guest guest]

,

I've heard of chemical diabetes, I think it is the same as

medication-induced diabetes, please correct me if I am wrong. I had an aunt

that only was diabetic while on Prednisone.

I'm sorry I didn't write you to let you know I was glad you were okay after

the storm, but I certainly was thinking of you.

Hugs,

Re: New to Group

Hello Sherry

What is Chemical Diabetes? I was diagnosed with Type II back in

2002 but I think I'm mostly borderline and it was just that the

treatment for CHF was such that it stressed my Pancreas to the point

where it took a vacation (hopefully it's back on the job by now).

They still have me on insulin to be on the safe side but I've gone

weeks without when I travel and forget to pack my meds (usually can

get most meds but the insulin I use is only available in the US, the

pharmaceuticals do that to maximize profit from a new med).

Are there a lot of damage from Katrina where you are? Rita blew done

a few trees and knocked out some street lights but all the damage

around here was from the mass evacuation and from spoiled food from

the power outages.

Regards,

On Oct 28, 2005, at 1:56 AM, shrrysms wrote:

> Hi, I am Sherry. I'm not new to being sick. I just found this group. I

> have tried several others and quit trying. I have ATM, MS, Chemical

> Diabeties, among others. I am from Mississippi and am 51 years old.

> God, that sounds old. I hope to be talking to ya'll a good bit.

>

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Being Sick Community

Message Archives-/messages

Chat:- Scheduled Chats at

/chat

Bookmarks:-

Add a website URL you have found useful.

/links

Personal Complaints or problems:-

Please contact a moderator

email: -owner

Subscription Details:-

1) Individual email - means that every email sent to the list you receive.

2) Daily Digest - sends you 25 messages in one single email for you to

browse. This is an excellent option if you receive alot of email.

3) Web only/No mail - means that you can pop into groups at your

convenience and receive no email.

To modify your subscription settings please visit:-

/join

To subscribe or unsubscribe please email:-

-subscribe

-unsubscribe

This group is not intended to diagnose or treat illnesses. No one on this

group is qualified to diagnose medical conditions. If you feel you need

medical attention, seek the advice of a qualified physician.

~~~~ *** ~~~ *** ~~~ *** ~~~~

When nothing is sure, everything is possible.

--- Margaret Drabble

~~~~ *** ~~~ *** ~~~ *** ~~~~

[Guest guest]

>

> > Hi, I am Sherry. I'm not new to being sick. I just found this

group. I

> > have tried several others and quit trying. I have ATM, MS,

Chemical

> > Diabeties, among others. I am from Mississippi and am 51 years

old.

> > God, that sounds old. I hope to be talking to ya'll a good bit.

> >

>

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Being Sick Community

>

>

> Message Archives-/messages

>

> Chat:- Scheduled Chats at

> /chat

>

> Bookmarks:-

> Add a website URL you have found useful.

> /links

>

> Personal Complaints or problems:-

> Please contact a moderator

> email: -owner

>

> Subscription Details:-

> 1) Individual email - means that every email sent to the list you

receive.

> 2) Daily Digest - sends you 25 messages in one single email for you

to

> browse. This is an excellent option if you receive alot of email.

> 3) Web only/No mail - means that you can pop into groups at

your

> convenience and receive no email.

>

> To modify your subscription settings please visit:-

> /join

>

> To subscribe or unsubscribe please email:-

> -subscribe

> -unsubscribe

>

> This group is not intended to diagnose or treat illnesses. No one

on this

> group is qualified to diagnose medical conditions. If you feel you

need

> medical attention, seek the advice of a qualified physician.

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> When nothing is sure, everything is possible.

>

> --- Margaret Drabble

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

>

>

[Guest guest]

Hi and welcome -

You'll find a ton of useful information as well as lots of support here.

My son, age 14, was diagnosed OCD at around age 12 - although the symptoms

were there at a younger age. His first medication was Prozac. This made a

night and day difference in his overall demeanor and lifting his depression

almost

instantaneously. Unfortunately, in trying to raise the dose high enough to

touch the anxiety and obsessive thoughts the medication caused him to become

aggressive, which was so out of character for him. It was scary for him as well

as the family. He then was placed on Zoloft and did beautiful and about two

months ago Abilify (small amt) was added in an attempt to get at the real hard

obsessive thoughts (i.e. refusing to eat with anything other than paper

products). The thoughts are still there, but the anxiety level is much

improved.

Medication is a hard decision and might not be for everyone, but many children

have gained tremendous success through medication and therapy. Some children

can't even attempt therapy until they are medicated.

Good luck to your son and keep us updated.