Re: (unknown)

[Guest guest]

Dear Becky,

I am so sorry your son is sick. It must be so difficult for all of your

family.

The onset of the disease usually is the worst. That is a high dose of

Prednisone. This treatment sounds normal though. It is important for the

Doc's to get his disease more stable. Prednisone was the only med that

helped me in the beginning. I am sure that soon the Doc's will try other

meds.

I don't know what causes this disease. In my own case I believe it was

caused by tremendous stress. I can only speak for myself and my own

experience. I do remember when I was younger that I got strep throat and

Bronchitis quite a bit. This is probably coincidental.

You and your family are in my thoughts and prayers.

Best Wishes,

jatw@...

(unknown)

> Hello

>

> This is Becky again. My son was diagnosed Sept 1st and started on

> 30mg of Pred a day. Yesterday his temp went up to 103.2 and today it

> went to 102.1 and was accompanied with the rash. The doc wants to up

> his does to 40mg a day starting tonight. Has this happened to anyone

> else or your children? I just wish I knew what caused all of this,

> where it came from, and why can't he get rid of it!!!!! Isn't 40mg a

> day a lot??? I thought he would be on the pred for awhile then it

> would go away. I guess I haven't accepted it yet, maybe I am still

> in denial. My husband wants to have the water tested for bacteria,

> he read that bacteria causes the onset of still's. Has anyone else

> heard of that???

> In denial in NY.

> Becky

>

>

>

>

[Guest guest]

In a message dated 9/7/2001 9:10:16 PM Central Daylight Time,

timberwolf@... writes:

> Yes there were some studies of giardia infection prior to the onset of jra

> in some children, also studies with salmonela,

Interesting here- when I was four I had a bout with salmonela food poisoning

ending up in the hospital and then ironically AFTER my first Stills flare at

the age of 13 I was infected with giardia. It took about 2 years to find

that parasite and treat it.

Beth

[Guest guest]

Hi Becky,

I'm sorry to learn that your son has been diagnosed with Still's - it's very

scary and unknown at times. However, I have found that it can often be managed.

.. .

I also began prednisone on 30mg. a day and it did not work. My doctor was

extremely positive and kept saying that it will work once we find the right

dose. I ended up on an extremely high dose (80mg. a day plus) BUT it worked.

Once my flares and fever were under control (because of the pred.), I was weaned

off the prednisone completely and put on Methotrexate. I have had no side

effects on the MTX and feel pretty normal - I just get tired and have a bit of

pain at times. I know I was lucky and others have not been as lucky. Also,

water was something my husband and I looked into at the beginning of my disease

as well. We have not learned anything concrete although the bacteria levels

were high at the onset of my disease and shortly after becoming sick a boil

order was issued for our water. We're not sure if it was a coincidence or . . .

I hope this helps and your son has a better day today!

Jen

(unknown)

Hello

This is Becky again. My son was diagnosed Sept 1st and started on

30mg of Pred a day. Yesterday his temp went up to 103.2 and today it

went to 102.1 and was accompanied with the rash. The doc wants to up

his does to 40mg a day starting tonight. Has this happened to anyone

else or your children? I just wish I knew what caused all of this,

where it came from, and why can't he get rid of it!!!!! Isn't 40mg a

day a lot??? I thought he would be on the pred for awhile then it

would go away. I guess I haven't accepted it yet, maybe I am still

in denial. My husband wants to have the water tested for bacteria,

he read that bacteria causes the onset of still's. Has anyone else

heard of that???

In denial in NY.

Becky

[Guest guest]

Hi ,

Just out of curiousity (and wanting to try it myself), how do you feel now that

you have gone off the methotrexate?

Jen

(unknown)

> Hello

>

> This is Becky again. My son was diagnosed Sept 1st and started on

> 30mg of Pred a day. Yesterday his temp went up to 103.2 and today it

> went to 102.1 and was accompanied with the rash. The doc wants to up

> his does to 40mg a day starting tonight. Has this happened to anyone

> else or your children? I just wish I knew what caused all of this,

> where it came from, and why can't he get rid of it!!!!! Isn't 40mg a

> day a lot??? I thought he would be on the pred for awhile then it

> would go away. I guess I haven't accepted it yet, maybe I am still

> in denial. My husband wants to have the water tested for bacteria,

> he read that bacteria causes the onset of still's. Has anyone else

> heard of that???

> In denial in NY.

> Becky

>

>

>

>

[Guest guest]

Hi ,

Thank you very much for the info. It sounds like you are very busy and active,

I get sore just reading about all you do. I would appreciate it if you would

let me know how you continue to feel throughout the next little while (I'm

thinking you're like a guinea pig for me and I'll learn from your experiences -

thanks!). I have been feeling great on the methotrexate for about a year now

and think it's time to reduce/go off completely. I was all ready to give it a

try and then I started to flare again. I think though I was just overwhelmed

when I began to flare - I teach and school was just starting, we were just

coming home from our first real holiday since I became sick two years ago and

most importantly a friend and his family were involved in a horrific car

accident in Port Angeles. My friend was killed, his mother was also killed and

his wife and sister both suffered serious injuries. It was horrible and in the

midst of it all I began to flare. I'm thinking more and more that this disease

is related to stress and how I handle it . . . I really appreciate your

comments, I'm really active as well and want to stay that way!

Take care, Jen

(unknown)

>

>

> > Hello

> >

> > This is Becky again. My son was diagnosed Sept 1st and started on

> > 30mg of Pred a day. Yesterday his temp went up to 103.2 and today it

> > went to 102.1 and was accompanied with the rash. The doc wants to up

> > his does to 40mg a day starting tonight. Has this happened to anyone

> > else or your children? I just wish I knew what caused all of this,

> > where it came from, and why can't he get rid of it!!!!! Isn't 40mg a

> > day a lot??? I thought he would be on the pred for awhile then it

> > would go away. I guess I haven't accepted it yet, maybe I am still

> > in denial. My husband wants to have the water tested for bacteria,

> > he read that bacteria causes the onset of still's. Has anyone else

> > heard of that???

> > In denial in NY.

> > Becky

> >

> >

> >

> >

[Guest guest]

Hi Jen,

I have read an awful lot about " flares " in these posts. I believe it is

normal to " flare " when you decrease the meds, no matter what they are

because first of all I think your body has to get used to existing WITHOUT

the medicines and secondly the reason we take the medicine is not to cure

the disease but to MASK the symptoms. Therefore, is it not normal to " flare

" when decreasing the meds? I fully expect to feel sore and tired until my

body gets used to existing without that which masks the symptoms. As far as

I am concerned we must learn to tolerate the flares to a certain extent and

give our bodies a chance to recooperate, while at the same time find that

which will cure us. In my case as I said I am going to a homeopath and as

skeptical as I was when I began I believe that I would still be on the meds

if not for her vitamin , and homeopathic remedies. She has actually treated

the disease and my body at the core level where my Dr.just masked the

symptoms while my body tried to heal itself.

(Dont get me wrong , Thank God for my Doctor)! Anyway good talking to you

and I hope everything works out!

Take Care

(unknown)

> >

> >

> > > Hello

> > >

> > > This is Becky again. My son was diagnosed Sept 1st and started on

> > > 30mg of Pred a day. Yesterday his temp went up to 103.2 and today

it

> > > went to 102.1 and was accompanied with the rash. The doc wants to

up

> > > his does to 40mg a day starting tonight. Has this happened to

anyone

> > > else or your children? I just wish I knew what caused all of

this,

> > > where it came from, and why can't he get rid of it!!!!! Isn't

40mg a

> > > day a lot??? I thought he would be on the pred for awhile then it

> > > would go away. I guess I haven't accepted it yet, maybe I am

still

> > > in denial. My husband wants to have the water tested for

bacteria,

> > > he read that bacteria causes the onset of still's. Has anyone

else

> > > heard of that???

> > > In denial in NY.

> > > Becky

> > >

> > >

> > >

> > >

[Guest guest]

Hey ,

I am interested in what your homeopathy is using to treat you. I beleive in

searching for the cure for this disease also. I read so many posts of people on

this site who complain about there doctor not knowing even as much as they do

about Stills. Yet they keep going back to them time after time, hoping that

this time the doctor will change something in there same old medications that

will make them feel better. Not realizing that what ever is the root cause of

their illness is being able to grow and grow while they are masking its

symptoms. These doctors are not to blame though they are only prescribing what

they were taught to prescribe. There could be a cure out there, but they

wouldn't know about it unless they are told by there peers that it works. Our

bodies are trying to tell us something is wrong. Just like when we burn

ourselves we are given pain to help us pull ourselves away from what is causing

it harm. If we numb this we will have permanent, unrepairable !

damage. So I say if anyone has a solution to this disease that does not numb

our natural defenses then we should as you have, be actively seeking it out.

What does your homeopath beleive causes Stills? How long have you been on it?

How long have you had Stills? I hope this isn't too many questions.

> <Stillsdisease > " Yannessa "

Date: Mon, 10 Sep 2001 19:57:48 -0400

>Reply-To: Stillsdisease

> Re: (unknown)

>Hi Jen,

>

>I have read an awful lot about " flares " in these posts. I believe it is

>normal to " flare " when you decrease the meds, no matter what they are

>because first of all I think your body has to get used to existing WITHOUT

>the medicines and secondly the reason we take the medicine is not to cure

>the disease but to MASK the symptoms. Therefore, is it not normal to " flare

> " when decreasing the meds? I fully expect to feel sore and tired until my

>body gets used to existing without that which masks the symptoms. As far as

>I am concerned we must learn to tolerate the flares to a certain extent and

>give our bodies a chance to recooperate, while at the same time find that

>which will cure us. In my case as I said I am going to a homeopath and as

>skeptical as I was when I began I believe that I would still be on the meds

>if not for her vitamin , and homeopathic remedies. She has actually treated

>the disease and my body at the core level where my Dr.just masked the

>symptoms while my body tried to heal itself.

>(Dont get me wrong , Thank God for my Doctor)! Anyway good talking to you

>and I hope everything works out!

>Take Care

>

>

>

>

> (unknown)

>> >

>> >

>> > > Hello

>> > >

>> > > This is Becky again. My son was diagnosed Sept 1st and started on

>> > > 30mg of Pred a day. Yesterday his temp went up to 103.2 and today

>it

>> > > went to 102.1 and was accompanied with the rash. The doc wants to

>up

>> > > his does to 40mg a day starting tonight. Has this happened to

>anyone

>> > > else or your children? I just wish I knew what caused all of

>this,

>> > > where it came from, and why can't he get rid of it!!!!! Isn't

>40mg a

>> > > day a lot??? I thought he would be on the pred for awhile then it

>> > > would go away. I guess I haven't accepted it yet, maybe I am

>still

>> > > in denial. My husband wants to have the water tested for

>bacteria,

>> > > he read that bacteria causes the onset of still's. Has anyone

>else

>> > > heard of that???

>> > > In denial in NY.

>> > > Becky

>> > >

>> > >

>> > >

>> > >

[Guest guest]

HI ,

Let me say first off that if it wasnt for my doctor, I might have died. I

am in no way bashing all doctors. Although I may have a good one, I know

there are plenty of other people that aren't so lucky.

As far as searching for a cure for the disease, I believe that this illness

as with alot of others including cancers ,begins festering in the body long

before symptoms are seen . When the " dragon " gets strong enough it waits

for the bodies defenses to weaken through excess stress ,etc, and then

slams the immune system. My strong belief is that we need to give our body a

chance to heal itself. There is a level of health in all of us whereby the

body will heal itself.

Some people know what is optimum for their body and some dont. I was one

who did not! Before I went to the homeopath, I thought I was helping my

body by eating alot of pasta, seven grain bread,etc.

(unknown)

> >> >

> >> >

> >> > > Hello

> >> > >

> >> > > This is Becky again. My son was diagnosed Sept 1st and started

on

> >> > > 30mg of Pred a day. Yesterday his temp went up to 103.2 and

today

> >it

> >> > > went to 102.1 and was accompanied with the rash. The doc wants

to

> >up

> >> > > his does to 40mg a day starting tonight. Has this happened to

> >anyone

> >> > > else or your children? I just wish I knew what caused all of

> >this,

> >> > > where it came from, and why can't he get rid of it!!!!! Isn't

> >40mg a

> >> > > day a lot??? I thought he would be on the pred for awhile then

it

> >> > > would go away. I guess I haven't accepted it yet, maybe I am

> >still

> >> > > in denial. My husband wants to have the water tested for

> >bacteria,

> >> > > he read that bacteria causes the onset of still's. Has anyone

> >else

> >> > > heard of that???

> >> > > In denial in NY.

> >> > > Becky

> >> > >

> >> > >

> >> > >

> >> > >

[Guest guest]

,

Just curious, how long have you had Stills? Perhaps you've said before

but if so I missed it. Thanks, Barb

[Guest guest]

Before I went to the homeopath, I thought I was helping my

body by eating alot of pasta, seven grain bread,etc.

Hey ,

I am a carb and bread fanatic. I mean much worse than the average person.

I burn a lot of it off, but I'm sure eating so much of it is not good for me.

Since I became sick I have cut way back. How many other Stilligans out there

eat too many breads and carbs?

To update everyone on my Tetracyclene therapy, I am doing even better this

week. I have dropped even the 2.5mg a day of Prednisone and feel even better.

Now the only medication I am on is Tetracyclene 2x a day. Before I was on this

therapy I was taking 5mg of Prednisone 2x a day, and would begin to lock up

before I was supposed to take my next dose. As soon as I started my therapy I

was able to start dropping the dose immediately. This therapy definitely put me

into remission! I hope anyone else out there willing to try it has as good of a

response from it as I have.

God bless the USA! I hope this horrible evil crime inflicted upon us will

continue to make us stronger, and bring us closer together. I don't think these

terrorists have any idea of how resourceful we can be when they put our backs up

against the wall. Maybe this will help us find the cure to terrorism.

always hopeful,

> <Stillsdisease > " Yannessa "

Date: Tue, 11 Sep 2001 07:58:18 -0400

>Reply-To: Stillsdisease

> Re: Re: (unknown)

>HI ,

>

>Let me say first off that if it wasnt for my doctor, I might have died. I

>am in no way bashing all doctors. Although I may have a good one, I know

>there are plenty of other people that aren't so lucky.

>As far as searching for a cure for the disease, I believe that this illness

>as with alot of others including cancers ,begins festering in the body long

>before symptoms are seen . When the " dragon " gets strong enough it waits

>for the bodies defenses to weaken through excess stress ,etc, and then

>slams the immune system. My strong belief is that we need to give our body a

>chance to heal itself. There is a level of health in all of us whereby the

>body will heal itself.

>Some people know what is optimum for their body and some dont. I was one

>who did not! Before I went to the homeopath, I thought I was helping my

>body by eating alot of pasta, seven grain bread,etc.

>

> (unknown)

>> >> >

>> >> >

>> >> > > Hello

>> >> > >

>> >> > > This is Becky again. My son was diagnosed Sept 1st and started

>on

>> >> > > 30mg of Pred a day. Yesterday his temp went up to 103.2 and

>today

>> >it

>> >> > > went to 102.1 and was accompanied with the rash. The doc wants

>to

>> >up

>> >> > > his does to 40mg a day starting tonight. Has this happened to

>> >anyone

>> >> > > else or your children? I just wish I knew what caused all of

>> >this,

>> >> > > where it came from, and why can't he get rid of it!!!!! Isn't

>> >40mg a

>> >> > > day a lot??? I thought he would be on the pred for awhile then

>it

>> >> > > would go away. I guess I haven't accepted it yet, maybe I am

>> >still

>> >> > > in denial. My husband wants to have the water tested for

>> >bacteria,

>> >> > > he read that bacteria causes the onset of still's. Has anyone

>> >else

>> >> > > heard of that???

>> >> > > In denial in NY.

>> >> > > Becky

>> >> > >

>> >> > >

>> >> > >

>> >> > >

[Guest guest]

Hi , I have actually been feeling good for a year, although I had a minor

flare that lasted two weeks just a couple weeks ago. Previously I have had 3 -4

major flares that each lasted at least a month. I tried to work through them

but found that for the most part I was unable. I was unable to look after my

baby (he's 3 now) and he had to go to my Mom and Dad's house for awhile (my

husband was starting a new job at the time). Previous to this LONG remission I

had only weeks respite in between the large flares. I have been feeling great

physically since I was weaned off the pred. and am now on 10mg. methotrexate a

week. I think I am one of the lucky people that it works well for. I am hoping

to start decreasing my dose in November. I would like to get completely off it

soon BUT I don't want the disease to come back so I am looking for ways that may

help to keep it under control. I'm glad you are feeling better! Have a good

day! Jen

(unknown)

> >> >> >> >

> >> >> >> >

> >> >> >> > > Hello

> >> >> >> > >

> >> >> >> > > This is Becky again. My son was diagnosed Sept 1st and

> >started

> >> >on

> >> >> >> > > 30mg of Pred a day. Yesterday his temp went up to 103.2

and

> >> >today

> >> >> >it

> >> >> >> > > went to 102.1 and was accompanied with the rash. The doc

> >wants

> >> >to

> >> >> >up

> >> >> >> > > his does to 40mg a day starting tonight. Has this

happened

> >to

> >> >> >anyone

> >> >> >> > > else or your children? I just wish I knew what caused all

> >of

> >> >> >this,

> >> >> >> > > where it came from, and why can't he get rid of it!!!!!

> >Isn't

> >> >> >40mg a

> >> >> >> > > day a lot??? I thought he would be on the pred for awhile

> >then

> >> >it

> >> >> >> > > would go away. I guess I haven't accepted it yet, maybe I

> >am

> >> >> >still

> >> >> >> > > in denial. My husband wants to have the water tested for

> >> >> >bacteria,

> >> >> >> > > he read that bacteria causes the onset of still's. Has

> >anyone

> >> >> >else

> >> >> >> > > heard of that???

> >> >> >> > > In denial in NY.

> >> >> >> > > Becky

> >> >> >> > >

> >> >> >> > >

> >> >> >> > >

> >> >> >> > >

[Guest guest]

Hi Krista,Keira also have the over the shoulder cast from SLC. We notice that as she grows it starts to inch up. I believe that this is because it is 'anchored' at the hips and they are getting taller. Keira goes to gymnastics and I have found that I can use one of the foam blocks that is rounded to lean her upside down and grab the cast near the hips and pull it down a little. You can also use one of those big exercise balls. If you or your husband are strong, I imagine you could just lift him up, but I need the foam or ball to hold her weight. When you are in SLC next time, ask Mike to show you how to do it if this doesn't make sense.Also, regarding cast removal at SLC: We had an excellent nurse on our 2nd trip and it made a world of difference. My husband held Keira on his lap and the nurse cut down the back and at the top of the

shoulders and then we peeled off the cast. Keira didn't even cry. The first time was a nightmare with a nurse who had never cut off this type of cast and insisted on laying Keira down and cutting the front chest bar, right near her neck and then down near her stomach, Keira screamed and fought the entire time. So insist that they cut the back of the cast and hold Jack or tell them to ask someone how to cut it off. The difference in the 2 experiences was night and day.The saw is loud, but not that bad, like a vacuum or blow dryer loud. We tried headphones the first time but Keira was fighting so much they wouldn't stay on. And the second time we forgot to use them and she didn't even cry or move.You should bring the bath soap and lotion that you use at home to the cast removal appointment. They will give you a wash cloth and you can quickly clean up Jack's body with a sponge bath. And then slather him with lotion!!!! (We use calendula

cream.) Jack's back will most likely be red in areas and he may have a little sore or two. He will be very itchy, so you have to watch and keep him from itching!!! Bring a set of pajamas that are snug, otherwise he will be up all night itching and he will scratch himself raw! We found Keira was itching even in her sleep. Also trim his nails before the appointment, anything to limit his ability to scratch his skin.You may or may not see Dr. D or Mike on the cast removal date. You will be given a sheet and told to phone after 5 for your surgery/check in time the next morning. You then go to the hotel and swim and then a nice bath and lots more lotion!!! We also slather lotion in the morning.The first time Keira had her cast removed she wouldn't even take a bath, let alone swim. But the 2nd time she was like a fish in the bathtub, however, she had 2 sores so we chose not to let her in the swimming pool for fear of infection.

Hopefully you will pull the first or 2nd OR slot, which means you need to be back in the hospital at 6 or 7 am to get prepped. The will tell you the food/liquid restrictions. After that, it is the same routine and on the 2nd day, ask for a 'leave of absence' when you to back to the hotel, otherwise you have to wait hours to be 'discharged' and then they are confused when you show up on the 3rd day for cast trimming. After the Dr checks the cast/trims it you can then be discharged, it is just easier from the paper work aspect.We also took a lot of photos of Keira without the cast, we almost forgot. It is helpful to see the changes and look back between the changes with each cast.Hope this helps! Good luck, and I pray Jack gets 'good numbers!' We are returning for cast #4 at the end of Feb. I hear Utah is very cold right now. We lucked out in November and had unseasonably warm weather!LizSubject: (unknown)To: infantile_scoliosis Date: Wednesday, January 7, 2009, 2:49 PM

Hi Group,

I have a cast question, my son has the over the shoulder cast from SLC and we are set to have a cast change at the end of this month. Believe it or not, the cast does not seem to be getting too "tight". I almost think that it may be rising up. I was reading to him before nap time and I noticed that he was dipping his chin below the chest portion of the cast and chewing on it!?? I have been weighing him and he is gaining wt, but he also seems thinner, from growing taller? Has this happened to anyone?

Next question. Jack is 18 months old and as I mentioned it is going to be our first cast change....how did your kids handle the cast coming off....were they sore or weak? I have swimming in the indoor pool at the Crystal Inn on the agenda. How did your kids then react when they were casted the next day? Just trying to be prepared. One fellow Cast member suggested fun toys and that sounds great. Any other tips? Hope all is well with all of you and your kids. ~Krista

PS if there are any SLC parents that can prep me with the procedure, I would be most appreciative.

[Guest guest]

Jill- This information is WONDERFUL!! Thank you!! Where can I get the calendula cream? I pray that his skin has no sores, but I have been preparing myself for the possibility of that, and if so swimming in a random pool is out! Thanks for the reminder. I guess I am just so excited, but that makes perfect sense. When I spoke to Angie, the Care Coordinator, she mentioned that she would cut off the cast?? Did I misunderstand that. I am not sure if she is an RN or not. I will definitely go with the back cut. Jack did have the cast trimmed....do they use that same saw when cutting it off? He did OK. No crying, I sang a favorite song in his ear. I hope it goes that well. I am nervous about the weather. I need to ck a weather web site. Thank you for your invaluable

info. Hope we can meet sometime. ~Krista

From: Krista Sloan <kmsloan18yahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Wednesday, January 7, 2009, 2:49 PM

Hi Group,

I have a cast question, my son has the over the shoulder cast from SLC and we are set to have a cast change at the end of this month. Believe it or not, the cast does not seem to be getting too "tight". I almost think that it may be rising up. I was reading to him before nap time and I noticed that he was dipping his chin below the chest portion of the cast and chewing on it!?? I have been weighing him and he is gaining wt, but he also seems thinner, from growing taller? Has this happened to anyone?

Next question. Jack is 18 months old and as I mentioned it is going to be our first cast change....how did your kids handle the cast coming off....were they sore or weak? I have swimming in the indoor pool at the Crystal Inn on the agenda. How did your kids then react when they were casted the next day? Just trying to be prepared. One fellow Cast member suggested fun toys and that sounds great. Any other tips? Hope all is well with all of you and your kids. ~Krista

PS if there are any SLC parents that can prep me with the procedure, I would be most appreciative.

[Guest guest]

I haven't written in a while but I just wanted to thank you for taking the time to write out all this detailed information. You don't always realize all the people you help with this type of post but it really is so valuable! So THANKS

My daughter was seen at SLC at 6.5 months old and we are waiting until she is 10 months old to see if she will resolve, if not she will get her first cast around April. So we have not had a cast yet but I will save this post to use if/when we do.

thanks again.

janet

From: Krista Sloan <kmsloan18yahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Wednesday, January 7, 2009, 2:49 PM

Hi Group,

I have a cast question, my son has the over the shoulder cast from SLC and we are set to have a cast change at the end of this month. Believe it or not, the cast does not seem to be getting too "tight". I almost think that it may be rising up. I was reading to him before nap time and I noticed that he was dipping his chin below the chest portion of the cast and chewing on it!?? I have been weighing him and he is gaining wt, but he also seems thinner, from growing taller? Has this happened to anyone?

Next question. Jack is 18 months old and as I mentioned it is going to be our first cast change....how did your kids handle the cast coming off....were they sore or weak? I have swimming in the indoor pool at the Crystal Inn on the agenda. How did your kids then react when they were casted the next day? Just trying to be prepared. One fellow Cast member suggested fun toys and that sounds great. Any other tips? Hope all is well with all of you and your kids. ~Krista

PS if there are any SLC parents that can prep me with the procedure, I would be most appreciative.

[Guest guest]

No problem Krista.

I just realized you think my name is Jill, when it is actually Liz. It

probably doesn't help that my email says my husband's name. oh well, no

big deal. I sometimes think I need index cards to keep up with info

regarding parents' names, kids' names and where they are being treated!

Regarding the calendula cream, you can find it in at Whole Foods or

other natural stores. I am not sure if big retailers carry it. I prefer

the brand "California Baby", but have to order it online. You can order

directly from their website www.californiababy.com, but I found that

sometimes drugstores.com has a better price. I haven't found it in

stores here in North California. We have used the Weleda baby brand, we

bought it at Whole Foods. There is a Whole Foods in SLC near the Crystal Inn, as we discovered on our quest for additional Calendula cream at the first cast change.

The itchy skin and need for loads of lotion was one thing that we

weren't prepared for. Especially since we didn't check our luggage and

limited our liquid/gels. But you can find calendula in 2-3oz containers

that meet the carry on limit. Whatever you go with, get it first and

use it on his skin, to ensure no allergic reaction, I heard that

happened to one Mom.Angie is a nurse, and she most likely will be in the 'outpatient' clinic on the day you are there. But she is usually with Dr. D and outpatients who have clinic appointments. So, another nurse most likely will cut off the cast, which has been the case for us. But she does stop in and see you when the cast is off. It sound like they used the saw to trim the cast. It looks like a little rotary saw with a hose attached to suck up the dust/debris. I have heard the cast saw at UCSF and that was much louder than the one used at SLC, in my opinion. Let me know if you have more questions. We have started staying at the University house, it is close to the hospital and they have a Shriners rate that if I remember correctly was less than $80, however, they don't have a pool, but they do have continental breakfast. You have to phone them directly to get the Shriners rate, it wasn't on their website

reservations. One of the other families who we met at cast change #2 told us about it. Liz

From: Krista Sloan <kmsloan18yahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Wednesday, January 7, 2009, 2:49 PM

Hi Group,

I have a cast question, my son has the over the shoulder cast from SLC and we are set to have a cast change at the end of this month. Believe it or not, the cast does not seem to be getting too "tight". I almost think that it may be rising up. I was reading to him before nap time and I noticed that he was dipping his chin below the chest portion of the cast and chewing on it!?? I have been weighing him and he is gaining wt, but he also seems thinner, from growing taller? Has this happened to anyone?

Next question. Jack is 18 months old and as I mentioned it is going to be our first cast change....how did your kids handle the cast coming off....were they sore or weak? I have swimming in the indoor pool at the Crystal Inn on the agenda. How did your kids then react when they were casted the next day? Just trying to be prepared. One fellow Cast member suggested fun toys and that sounds great. Any other tips? Hope all is well with all of you and your kids. ~Krista

PS if there are any SLC parents that can prep me with the procedure, I would be most appreciative.

[Guest guest]

Liz, what is wrong with me...I have one extra cup of coffee and I am just a spaz! Sorry about that. Thanks for reminding me about the sizes....always an important tip when traveling. If you think of anything else, you sound like a great resource, please send it my way...I can never have too much info. I have told you this before, but my husband and I are from Novato. I miss Marin soooo much, it's hard to be away from all of my family and friends. Hope all is well with you and your family. Take care. ~Krista

From: Krista Sloan <kmsloan18yahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Wednesday, January 7, 2009, 2:49 PM

Hi Group,

I have a cast question, my son has the over the shoulder cast from SLC and we are set to have a cast change at the end of this month. Believe it or not, the cast does not seem to be getting too "tight". I almost think that it may be rising up. I was reading to him before nap time and I noticed that he was dipping his chin below the chest portion of the cast and chewing on it!?? I have been weighing him and he is gaining wt, but he also seems thinner, from growing taller? Has this happened to anyone?

Next question. Jack is 18 months old and as I mentioned it is going to be our first cast change....how did your kids handle the cast coming off....were they sore or weak? I have swimming in the indoor pool at the Crystal Inn on the agenda. How did your kids then react when they were casted the next day? Just trying to be prepared. One fellow Cast member suggested fun toys and that sounds great. Any other tips? Hope all is well with all of you and your kids. ~Krista

PS if there are any SLC parents that can prep me with the procedure, I would be most appreciative.

[Guest guest]

Hi Krista

The last cast we had removed just before christmas Mike wanted to cut it off. I think its more him wanting to see what I have done than anything else. We have always had the cast cut down the side and open it up like a clam its alot faster and Dylan is not tramatised as much by the saw. Mike is really good with a cast saw and only took 5 mins. Carolyn from Child life came down also and she was great at distracting Dylan with a few toys. I have also used a DVD player with headphones and his favorite movie to distract him. Also ask for some cream from the hospital the stuff they use there is really good they always give us lots and it works real well, after one application Dylan no longer scratches himself.

With the cast becoming loose every cast Dylan has had this has been the case. I think its just their bodies adjusting to the cast. After the cast comes off Dylan is so off balance it takes a little while for him to adjust to not having it on.

Good luck on your cast change hope everything goes smooth for your son and yourself.

Darrell

(unknown)

Hi Group,

I have a cast question, my son has the over the shoulder cast from SLC and we are set to have a cast change at the end of this month. Believe it or not, the cast does not seem to be getting too "tight". I almost think that it may be rising up. I was reading to him before nap time and I noticed that he was dipping his chin below the chest portion of the cast and chewing on it!?? I have been weighing him and he is gaining wt, but he also seems thinner, from growing taller? Has this happened to anyone?

Next question. Jack is 18 months old and as I mentioned it is going to be our first cast change....how did your kids handle the cast coming off....were they sore or weak? I have swimming in the indoor pool at the Crystal Inn on the agenda. How did your kids then react when they were casted the next day? Just trying to be prepared. One fellow Cast member suggested fun toys and that sounds great. Any other tips? Hope all is well with all of you and your kids. ~Krista

PS if there are any SLC parents that can prep me with the procedure, I would be most appreciative.

[Guest guest]

Hi Krista;

We go to Rochester so our experience is a bit different, but I wanted to let you know that we bring aquafore. It helps a ton with the itching and any raw skin is healed by the next day! (That may be because little ones have amazing skin... I want it!) Also, is always alittle off balance when he first gets his cast off. He walks like he has had a few too many. He loves the pool and baths. I hope Jack enjoys it. I will be saying a prayer for good results. Post as soon as you can!

Good Luck,

Jill (aka Liz- just kidding!)

Subject: (unknown)To: infantile_scoliosis Date: Wednesday, January 7, 2009, 5:49 PM

Hi Group,

I have a cast question, my son has the over the shoulder cast from SLC and we are set to have a cast change at the end of this month. Believe it or not, the cast does not seem to be getting too "tight". I almost think that it may be rising up. I was reading to him before nap time and I noticed that he was dipping his chin below the chest portion of the cast and chewing on it!?? I have been weighing him and he is gaining wt, but he also seems thinner, from growing taller? Has this happened to anyone?

Next question. Jack is 18 months old and as I mentioned it is going to be our first cast change....how did your kids handle the cast coming off....were they sore or weak? I have swimming in the indoor pool at the Crystal Inn on the agenda. How did your kids then react when they were casted the next day? Just trying to be prepared. One fellow Cast member suggested fun toys and that sounds great. Any other tips? Hope all is well with all of you and your kids. ~Krista

PS if there are any SLC parents that can prep me with the procedure, I would be most appreciative.

[Guest guest]

Jill! finally!

Thanks for that. We take off for SLC on Jan. 28th, thank you for the well wishes! ~Krista

From: Krista Sloan <kmsloan18yahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Wednesday, January 7, 2009, 5:49 PM

Hi Group,

I have a cast question, my son has the over the shoulder cast from SLC and we are set to have a cast change at the end of this month. Believe it or not, the cast does not seem to be getting too "tight". I almost think that it may be rising up. I was reading to him before nap time and I noticed that he was dipping his chin below the chest portion of the cast and chewing on it!?? I have been weighing him and he is gaining wt, but he also seems thinner, from growing taller? Has this happened to anyone?

Next question. Jack is 18 months old and as I mentioned it is going to be our first cast change....how did your kids handle the cast coming off....were they sore or weak? I have swimming in the indoor pool at the Crystal Inn on the agenda. How did your kids then react when they were casted the next day? Just trying to be prepared. One fellow Cast member suggested fun toys and that sounds great. Any other tips? Hope all is well with all of you and your kids. ~Krista

PS if there are any SLC parents that can prep me with the procedure, I would be most appreciative.

[Guest guest]

Thank you Darrell! I still owe you a lil L.A. memorabilia! Maybe just something Winnie the Poo! I so hope that Dylan's last visit went well. ~Krista

Subject: Re: (unknown)To: infantile_scoliosis Date: Thursday, January 8, 2009, 3:11 AM

Hi Krista

The last cast we had removed just before christmas Mike wanted to cut it off. I think its more him wanting to see what I have done than anything else. We have always had the cast cut down the side and open it up like a clam its alot faster and Dylan is not tramatised as much by the saw. Mike is really good with a cast saw and only took 5 mins. Carolyn from Child life came down also and she was great at distracting Dylan with a few toys. I have also used a DVD player with headphones and his favorite movie to distract him. Also ask for some cream from the hospital the stuff they use there is really good they always give us lots and it works real well, after one application Dylan no longer scratches himself.

With the cast becoming loose every cast Dylan has had this has been the case. I think its just their bodies adjusting to the cast. After the cast comes off Dylan is so off balance it takes a little while for him to adjust to not having it on.

Good luck on your cast change hope everything goes smooth for your son and yourself.

Darrell

[infantile_scoliosi s] (unknown)

Hi Group,

I have a cast question, my son has the over the shoulder cast from SLC and we are set to have a cast change at the end of this month. Believe it or not, the cast does not seem to be getting too "tight". I almost think that it may be rising up. I was reading to him before nap time and I noticed that he was dipping his chin below the chest portion of the cast and chewing on it!?? I have been weighing him and he is gaining wt, but he also seems thinner, from growing taller? Has this happened to anyone?

Next question. Jack is 18 months old and as I mentioned it is going to be our first cast change....how did your kids handle the cast coming off....were they sore or weak? I have swimming in the indoor pool at the Crystal Inn on the agenda. How did your kids then react when they were casted the next day? Just trying to be prepared. One fellow Cast member suggested fun toys and that sounds great. Any other tips? Hope all is well with all of you and your kids. ~Krista

PS if there are any SLC parents that can prep me with the procedure, I would be most appreciative.

[Guest guest]

Hi Krista,

We also go to Rochester and we use Aquaphor also. We found the Calendula cream to be a little itchy for Noelle, but other kiddos are fine with it. We also bathe Noelle in an Aveeno bath as soon as we get back to the hotel just before we apply the Aquaphor and that has helped so much! Good luck! Steph

From: Krista Sloan <kmsloan18yahoo (DOT) com>Subject: [infantile_scoliosi s] (unknown)To: infantile_scoliosis @yahoogroups. comDate: Wednesday, January 7, 2009, 5:49 PM

Hi Group,

I have a cast question, my son has the over the shoulder cast from SLC and we are set to have a cast change at the end of this month. Believe it or not, the cast does not seem to be getting too "tight". I almost think that it may be rising up. I was reading to him before nap time and I noticed that he was dipping his chin below the chest portion of the cast and chewing on it!?? I have been weighing him and he is gaining wt, but he also seems thinner, from growing taller? Has this happened to anyone?

Next question. Jack is 18 months old and as I mentioned it is going to be our first cast change....how did your kids handle the cast coming off....were they sore or weak? I have swimming in the indoor pool at the Crystal Inn on the agenda. How did your kids then react when they were casted the next day? Just trying to be prepared. One fellow Cast member suggested fun toys and that sounds great. Any other tips? Hope all is well with all of you and your kids. ~Krista

PS if there are any SLC parents that can prep me with the procedure, I would be most appreciative.

[Guest guest]

Probably the closest to you is Greenville, SC, but if you're willing to travel,

the Shriner's hospitals in Erie,PA, Chicago, Salt Lake City and Texas are all

Mehta trained facilities. Not sure if Greenville is Shriner's or not. There is

a list of Mehta trained docs on this site. Just click around to find it.

>

> Subject: (unknown)

> To: infantile_scoliosis

> Date: Monday, April 20, 2009, 4:37 PM

> Hello!

>  

> I just joined your support group. Basically, I am looking

> for a doctor to treat my daughter's infantile scoliosis.

> I just moved from WI to FL...my daughter is on her 3rd cast

> (she is 17 months old) and although the first cast brought

> her from a 74 degree curve to a 55 degree curve...in her 2nd

> cast she fell back to a 68 degree curve. We were devastated!

> I agreed to try another cast...but I really have been

> researching Dr. Mehta's technique and I would like to

> find a doctor...no matter what city or state...that is

> experienced with the casts and has proven results! I will

> take her anywhere!!!!

>  

> Thank you for your help!

>  

> Sincerely,

> , & Iljana Simonovich

[Guest guest]

I would recommend getting in contact with

the Asst. Chief of Staff at the Shriners in Greenville, SC.

HRH

From: infantile_scoliosis [mailto:infantile_scoliosis ] On Behalf Of Pascucci

Sent: Monday, April 20, 2009 5:37

PM

To: infantile_scoliosis

Subject:

(unknown)

Hello!

I just joined your support group. Basically, I am

looking for a doctor to treat my daughter's infantile scoliosis. I just moved

from WI to FL...my daughter is on her 3rd cast (she is 17 months old) and

although the first cast brought her from a 74 degree curve to a 55 degree

curve...in her 2nd cast she fell back to a 68 degree curve. We were

devastated! I agreed to try another cast...but I really have been researching

Dr. Mehta's technique and I would like to find a doctor...no matter what city

or state...that is experienced with the casts and has proven results! I will

take her anywhere!!!!

Thank you for your help!

Sincerely,

, & Iljana Simonovich

[Guest guest]

Patty,

I am so deeply sorry to hear of the loss of your child. I can't imagine going through that, my heart goes out to you.

Now, regarding your daughter, you are not alone in this! We are all here for you. Please get your child to a Mehta Method trained doctor who does EDF casting as quickly as you can. There is a list of doctors who are properly trained in this on the website, www.infantilescoliosis.org

I don't see any reason why you would lose your daughter at that degree, if you act fast. It can and does progress rapidly in a lot of cases, like ours. Please call Hyatt-Montoya, her email and phone number on on the website. Ask any and all questions of the group, be a bold advocate for your child! My husband calls it "politely pushy", but get her in as soon as you can. Are you near a Shriners hospital? Some but not all do this casting. If you decide to apply to one, we have some advice that we got from that may help. Please keep us posted and know that you can do this! You're in the right place.

-Heidi (Bexon's Mom, 23 months old in 2nd cast from Shriners, Salt Lake City)

Subject: (unknown)To: infantile_scoliosis Date: Tuesday, May 26, 2009, 6:03 PM

Hello, my name is Patty and I am new to all of this. My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her. I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either. I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

I was so upset I couldn't think straight. The doctor told me to give him until this Friday to see if anyone could even help her and where I should go. The thought that no one would be able to help her scared me to death. Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first son almost 10 years ago (nothing to do with scoliosis). I am so glad that I found a place to speak with other people b/c you always feel like you're alone.

[Guest guest]

Hi Patty,

You need to contact a Mehta doc ASAP and establish a conversation with the care coordinator and send them all your child's medical records including a copy of any x-rays and the MRI. Establish a casting date and ask to be put on the cancellation list if you are able to leave short notice. My Noelle was casted first at 18 months, not much younger than your child, at b/t 45-50 degrees. I am happy to report that she is currently in her 7th cast and is at 15 degrees standing and 11 degrees in a laying x-ray.... She is doing GREAT!!!!! Your daughter is still young enough to be helped by casting and please don't think you are going to lose her..... You are on the right path and YOU WILL get her the help she needs. She WILL be fine.... You just have to believe and get the ball rolling. I am so sorry about your loss and the confusion that you are going through right now. When Noelle was first

diagnosed I thought my world was crumbling from under my feet.... Well, my world did change (in some ways for the better, believe it or not) but it hasn't crumbled and neither will yours. I will pray for you and feel free to ask any questions. Hugs to you and keep me posted, Stepha

Subject: (unknown)To: infantile_scoliosis Date: Wednesday, May 27, 2009, 1:03 AM

Hello, my name is Patty and I am new to all of this. My daughter was diagnosed with scoliosis in February and unfortunately I had the month from hell with everyone in my house getting the stomach bug twice and my daughter getting pneumonia. Anyway, the doctor's first step was to send her for an MRI which ended up not happening until early April b/c they won't put a child under until 6 weeks after having pneumonia so I lost precious weeks. Nothing else showed up on the MRI and the doctor sent me to have a brace made for her. I was hopeful but it ended up that the first place made it all wrong. So, off to get the next brace made & we just got it last Wednesday and had her x-rayed in it 5/22. More bad news, this brace, as well made as it was, wasn't going to do anything either. I think now that they knew that from what I've read online because she was at 47 degrees when this all started & is now (I think) at 55 degrees.

I was so upset I couldn't think straight. The doctor told me to give him until this Friday to see if anyone could even help her and where I should go. The thought that no one would be able to help her scared me to death. Isabella is now 21 months old and the thought of losing her to something like this is crushing esp, since I lost my first son almost 10 years ago (nothing to do with scoliosis). I am so glad that I found a place to speak with other people b/c you always feel like you're alone.