Hi! new to group

August 13, 2004

Thanks for the welcome. No, I don't live in anymore. We are in San

now. Its nice to hear from people who are having some of the same

issues that I have. Until a couple of years ago, I didn't know of the

correlation between pain and a flat back. I just thought it was because those

lower vertebrae were the only ones that were not fused and were overworked.

Is Dr Erwin still practicing?

Re: hi! new to group

Hello Carol,

Welcome to the group. I don't post very often, but try to read when I

can. Dr. Harrington did my surgery in 1967. My surgery was not as

extensive as yours. I take Bextra for ALL my " pains " spinal and

otherwise! LOL I have trouble walking very far or standing for very

long. It seems the vertebra below my fusion have lost a good bit of

their cushion. The x-ray wasn't clear enough to show the full extent

of the damage. The fusion still looks good, but I do have a broken

rod that might be the cause of some of my problems. Do you still live

in ? I lived there for a short while a few years ago.

I seldom post, but most of the ladies and gents on here are real nice.

Txbluebelle

-- In , " Carol " <ctitus@s...>

wrote:

> I stumbled on this group while playing on the computer. I had

spinal fusion and harrington rods placed in may of 1974(30 years

ago). I was 12 and had a bad curve. 84 on top, and 42 on bottom, I

think. It seemed to progress pretty fast. My family didn't notice

until it was well advanced. Back then there was no screening in the

schools. I wore a body cast for 9 months, and did a lot of walking.

After a couple of years, my doctor cleared me and said I could them

be as normal as possible. I am fused from T2 to L4. I had no

problems for many years. My surgery was done in Houston since we

lived 2 hours away in . My surgeon was Dr Wendel Erwin, and

he was partners with Harrington and Dickson. We have always been kind

of proud that my surgery was done by the people who developed the

rods.

>

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

August 14, 2004

Carol,

We have a lot in common. I also had surgery done by Dr. Erwin, but in 1977.

I am also a nurse. I've worked ICU for 20 years and for the last two years,

I have worked in Endoscopy. I was diagnosed last year with flatback

syndrome. I have been walking bent over for the last couple of years. It

seems to have gotten progressively worse. I don't take pain meds except of

Aleive occasionally. I work about 6 hours per day and I have to really push

myself to do any of my house work or road running. (Like today).

I saw Dr. Dickson a couple of years ago about my walking bent over.

You can email me at Labsol@... and we can chat about the

Scoliosis group of doctors and my vs with Dr. Dickson. (I've already chatted

about this group about that visit.)

HR 1977 HARMS NOW.

hi! new to group

> I stumbled on this group while playing on the computer. I had spinal

fusion and harrington rods placed in may of 1974(30 years ago). I was 12

and had a bad curve. 84 on top, and 42 on bottom, I think. It seemed to

progress pretty fast. My family didn't notice until it was well advanced.

Back then there was no screening in the schools. I wore a body cast for 9

months, and did a lot of walking. After a couple of years, my doctor cleared

me and said I could them be as normal as possible. I am fused from T2 to

L4. I had no problems for many years. My surgery was done in Houston since

we lived 2 hours away in . My surgeon was Dr Wendel Erwin, and he

was partners with Harrington and Dickson. We have always been kind of proud

that my surgery was done by the people who developed the rods.

> I have two children, and had natural deliveries. I didn't think an

epidural would be possible, or fun. I didn't start to have pain until about

10 or 11 years ago. I never had any other surgery, except I had one facet

injection with steroids in 1994. It helped a little. I don't really have

pain right now. I seem to go through periods of pain and periods of no

pain. I am not taking any meds now. I saw an orthopedic surgeon here a

couple of years ago, when I was having a lot of trouble. We did xrays, some

pt, and celebryx. It helped a little. His main advice was to lose weight.

Well, I've gained 10 pounds since then. I need to start walking again.

> He was the first one to explain to me about the problems assoc with taking

the sway out of your low back. He also said that we would do surgery unless

I got pretty bad.

> I'm wondering now, what if I had reconstructive surgery? Would it

make me straighter and take some strain off the parts that are so lopsided?

Or would it just cause more pain. I'm a nurse in a neonatal unit and work 12

hour shifts in a busy unit. A lot of standing. I'm usually too tired

afterwards to walk, and unmotivated on the off days to walk. Thanks for

letting me vent.

> Carol

>

January 18, 2006

Lori - is he anemic - is his asthma active - those two things could

contribute to his fatigue. If those things are okay - then it probably the JRA

causing the fatigue - Hunter was severely fatigued until we got her stabilized

with

her Meds. I would also be concerned with depression. At your son's age -

most kids are out on skate boards and such. You son is dealing with medicines

and fighting pain. I probably wasn't much help but I hope things get better

for your son. Sandi Ken Hunter (7 Systemic)

January 18, 2006

Hi lori,

Welcome to the group. I was on Humira for about 7 or 8 months and am now on

Enbrel. The Humira was wonderful for about 7 months and then lost it's

effectiveness. Both humira nd Enbrel at the larger doses are painful and

become more painful as scar tissue builds up. I saw improvements on both

humira nd Enbrel within 24 hours. I have heard it may take up to 2 weeks,

but in my case i notice a huge difference within 24 hours. My major side

effect has been the looming threat of Pnemonia which I have had once. As

long as you discontinue use when yuo get a sickness, you should be ok. i

also experienced fatigue on and off.

taylor (35 poly)

Hi! New to group

Hello!

I'm new to this group. My son who is 11 yrs. has poly JRA with many

joints affected. His knees and his sternum joints are the worst. He

also had asthma, gerd, iga nephropathy, migraines and a few other

minor problems. He hasn't had success with any jra meds. He

currently is on mtx. and humira and naperson. We have also tried

enbrel with no success. He's been on humira for almost 2 months. The

injection is soooo painful for him. We have tried ice, numbing

creams, versed and so on. I would like to hear any experiences with

humira. If your child is having success with humira, how long did it

take to see improvements? Side effects? Also, how do you treat or

deal with fatigue. My son's fatigue is so severe.

Thanks!

Lori

January 18, 2006

Lori,

I understand how hard it is to see your child in such pain. My daughter

is on Humira and it took just a couple of months for her relief. She

had to add methotrexate into her diet to get it really under control.

Does your son take folic acid? That can assist in taking away the side

effects of the methotrexate. She takes her's on Tuesday nights....she

can sleep off the side effects, and then her slowest day with activities

is Wednesday. So it doesn't effect her so much.

As for the Humira. I believe my daughter has a very high pain

tolerance. I guess I am learning that with this disease. We numb the

spot first with emla. 20 minutes for sure, and then she uses ice. I

mean ice almost right on her skin. Not some wimpy few cubes wrapped in

a cloth. She then takes her needle from the drug and finds the spot

that is numb. She shoots herself in the leg. I know some people have

had lots of success with shooting it in the stomach. We use and

injector and she shoots herself. Because she is on a study, she must

record her pain level. And it has almost become a joke, because she

almost has to make up a number....it wasn't always that way. I know

times when she cried. But she is in control, and she does it herself.

Our daughter was complaining of knee pain this fall. We assumed it was

her arthritis. After a DR. apt, we discovered it was a mechanical

problem, and not arthritic problem. We had her in to see a pedantic

Orthopedic Doctor, that got her into physical therapy. She is doing

great! He has really helped her a lot! I guess my reason for stating

this is, we assume that our medicine will take care of all, but maybe a

bit of physical therapy could assist your son. I am not a doctor, just

using my experience to assist you.

I don't know if this will help, but maybe! Use whatever you can to

assist your son!'

and Allie (9poly)

________________________________

From: [mailto: ] On

Behalf Of tltjk17

Sent: Wednesday, January 11, 2006 3:58 PM

Subject: Hi! New to group

Hello!

I'm new to this group. My son who is 11 yrs. has poly JRA with many

joints affected. His knees and his sternum joints are the worst. He

also had asthma, gerd, iga nephropathy, migraines and a few other

minor problems. He hasn't had success with any jra meds. He

currently is on mtx. and humira and naperson. We have also tried

enbrel with no success. He's been on humira for almost 2 months. The

injection is soooo painful for him. We have tried ice, numbing

creams, versed and so on. I would like to hear any experiences with

humira. If your child is having success with humira, how long did it

take to see improvements? Side effects? Also, how do you treat or

deal with fatigue. My son's fatigue is so severe.

Thanks!

Lori

January 18, 2006

Hello Lori Welcome to the group and sorry to hear about

your sons difficultly with the injectins.

Don't have experience with humaria, but as for fatigue well, been dealing

with that now for 37 years since diagnosis. The only advice for fatigue

is, well for me is to push even harder when the fatigue comes over me.

Some might say energy drinks or something, I don't know if that would

help your son or not. It really is a big crap shoot at times with this

disease.

But it is so very important to stay and keep as active as he can,find

that stubborn bullheaded little boy inside of you guy and tell your self,

'it ain't goung to beat me'.

Good luck with the treatments!

hplta

Rusty

January 19, 2006

Hi Lori and Welcome,

I'm so sad to hear that there's another child who isn't responding to

meds so far. That must be so frustrating for you and painful for

him. I don't have experience with humira, but I hope you get some

answers here and find something that works.

Stacia and Hunter 9 systemic, uveitis

December 2, 2006

Dear (I hope that's your name!)

You are right: somewhere Sandis is normal. It's hidden behind what presents itself. There's a book by Judy Barron called: There's a Boy in There (or Here) about her autistic son.

All of us as parents can hold that vision for our children, no matter how bad the behavior, or how frightening the symptoms. It holds their wholeness intact for them, despite how they're feeling or acting, and it is an unseen rock for them to lean on.

We parents had better be "in denial" that some diagnosis is the last word on our sons and daughters, because there's no-one else that's going to see them well and whole.

Welcome to this great list.

Francine

In a message dated 12/2/2006 9:44:26 P.M. Eastern Standard Time, sarahiamslh@... writes:

I've been trying to convince myself and everyone else for six years that he is normal, just like everyone else, and it is like I am taking the blinders off my eyes and seeing my son for the first time this past month.

December 12, 2006

Hello , I just want to welcome you to the group and say that you have come to a wonderful place for understanding, empathy and if you need it, information. I joined the group for those things as well and was very overwhelmed with the diagnosis, accepting that my child was different etc and this group has helped me in so many ways, one of the biggest ways is in just knowing I am not alone, that other families go through this too! I am a single mom as well. Anyway, welcome and I look forward to talking to you more. Good luck and God bless! DeeDee mom of Aslynne 16 nt, Elissa 13 AS, ADHD, ODD and bi polar disorder and Tynan 7 PDD nos <sarahiamslh@...> wrote: I just wanted to say hello to the group! I am a single mum of Sandis, a six year old diagnosed recently with PDD-NOS. The psychologist indicated that she believed he has Aspergers, but we are waiting for his cognitive and adaptive evaluations before she can change the diagnosis. Sandis is my oldest and I struggle a lot with how we went this long without a diagnosis! School has been a huge struggle, and even though he is only in kindergarten, bullying and teasing has been a huge problem. We are in the process of obtaining special ed evals from the school this month. Right now, they have Sandis sitting in a rocking chair behind the rest of the class. I go in once a month to

volunteer in his class and observe him as well. I want to know first hand how he is doing in there. It is very sad for me to see him struggle in class. I've been trying to convince myself and everyone else for six years that he is normal, just like everyone else, and it is like I am taking the blinders off my eyes and seeing my son for the first time this past month. Sandis was diagnosed in October. I just wanted to come to have a support system and other parents to talk to about our journey with autism.

Check out the all-new beta - Fire up a more powerful email and get things done faster.

December 17, 2008

Hi !

Welcome to the group! I'm so sorry that your little guy went through

so much, but happy that he was giving you warning signs before quite

possibly something very bad happened (I woke up when my little one

had bad reactions and like you, stopped at 6 mo). I hear a lot of

what you are describing from other parents (severe food allergies,

ezcema, loose stools, diaper rash, etc) - then their child receives

the MMR and is lost to Autism (mine is currently on the spectrum and

in recovery).

I too, never made the wheezing connection until comparing notes on my

14 yr old and 1 yr old. They both developed wheezing after rounds of

vaccines I noticed. Was it the formaldehyde or something else that

triggered it? It is pretty sad that parents have to now stick

together for the best interest of their future generations because

doctors care more about their " pharma " affiliated career.

Again, welcome! You will learn a lot here.

Dawn

>

> I'm . I have 3 children. A daughter, who is 5 and fully-

> vaccinated according to the CDC schedule. She has a speech

disability

> which I am now wondering if it could have been caused by the

> vaccines. I have a son who is 3, and is fully vaccinated for his

age.

> He was born with Hirschsprung's Disease (a congenital disease of

the

> colon), but is for the most part fine now. I haven't noticed any

> affects from the vaccines in him, other than he is extremely hyper

> and strong-willed. I am not sure that is from the vaccines or the

> fact that he's a 3 year old boy! I have another son who is 16

> months. He has been vaccinated to 6 months. He is the reason I

> started researching vaccines, and I will NEVER again inject that

> poison into my children.

>

> So, here's our story. It all started with some nasal congestion

when

> he was 3 weeks old. It gradually got worse, and just before he was

2

> months old, he started wheezing. I took him to the doctor, and they

> diagnosed him with croup, and gave him nebulizer meds. They told me

> to wait a couple of weeks for his 2 months vaccines. So after he

was

> over this wheezing episode, I took him in and he got his 2 month

> vaccines. Within a week, he was wheezing again (unfortunately, I

> didn't make the connection). I took him back to the doctor, and

they

> gave him more nebulizer meds. He continued to get worse througout

the

> week, and I took him back that Friday. His breathing was so bad,

they

> debated hospitilizing him. They ended up letting him come home, but

I

> had to wake up every 2 hours to nebulize him. They did bloodwork,

> which showed some kind of unknown virus (RSV negative). Over the

> course of 6 weeks, he finally stopped wheezing, then I took him to

> get his 4 month shots. Within a week, he was wheezing again. And

once

> again, over the course of 6 weeks, he finally stopped wheezing. And

> then once again, I took him in for his 6 month shots, and same

> story... wheezing. Looking back and typing this, it seems so

obvious.

> I was so pro-vaccine that it never occured to me that the vaccines

> were causing all his problems.

>

> Anyway, I started to introduce solids to him around 6-7 months,

which

> he rejected. He would only nurse. He was very clingy to me. He was

> very pale and not very active. As he neared his 1st birthday, he

> started getting diarrhea and diaper rash. I switched to cloth

> diapers, thinking maybe he was allergic to the diapers...that

didn't

> work. His eczema started getting worse. At his 12 mth wbv, he had

not

> gained any weight since his 9 mth wbv, so we decided to do some

> allergy testing. I suspected maybe a milk or egg allergy but was

> shocked when the results came back. He was allergic to soy, milk,

> wheat, peanuts and a severe egg allergy! No wonder my poor baby was

> so miserable! They told me he couldn't have a flu shot, but

> everything else should be ok. I had always thought people with egg

> allergies weren't supposed to get the MMR also, so that's when I

> started my research.

>

> I am convinced that the vaccines played a part in his food

allergies.

> There is not one person that we know of in my family or my

husband's

> with food allergies, or eczema. Dominic has not had a wheezing

> episode since stopping his vaccinations other than a cold he had a

> couple of weeks ago... that episode only lasted a few days, not

> weeks. He is such a different little boy now. He is active and

> playful. His skin coloring is better. He loves eating solids (but

> still loves his mama's milk)and has very few episodes of diarrhea

and

> diaper rash. He still has problems with his eczema and weight gain

> though, which is, I'm guessing, due to his food allergies.

>

> Most of our family and friends are accepting of not vaccinating

> Dominic any further, but think we're crazy for not wanting to

> vaccinate our other 2 children anymore. Some were shocked when I

> started naming off the ingredients... I'm going to continue to work

> on them and hopefully, they will see the light!

>

> Sorry so long. Thanks for reading my story!

>

December 17, 2008

Hi ,

I'm so glad to hear your little one is doing better. I count myself

among the lucky few who didn't vax. My son is almost 4.5 and very

healthy. Every time I look at him, I renew my vow to never vax him.

FWIW, nursed till he was 3 and if I didn't wean him, he'd probably

still be nursing LOL

I have recently discovered I'm gluten-intolerant and also allergic to

gluten grains, including wheat. If you email me off-list, I can let you

know of some great online resources for both wheat-free, milk-free and

egg-free recipes. I would be sooo lost right now if it wasn't for

them !!!

Welcome,

Magda

December 17, 2008

Welcome, ! Good for you to make the connection between vaccines and your

son's problems. And vaccines absolutely can be behind speech problems. See if

you can find a Sensory Integration therapist to help with that.

I would suggest going to a good naturopath to help your son get over the eczema

and wheezing. Skin and lungs are related--better to have the eczema than

wheezing/asthma. Beware of antibiotics, too. They can make it all worse.

Yes, 3-yr-old boys can be hyper and strong-willed. Not everything is vaccine

related. As long as it doesn't interfere with his daily life/school, then he

should be fine.

Winnie

Hi! New to group

Vaccinations

> I'm . I have 3 children. A daughter, who is 5 and fully-

> vaccinated according to the CDC schedule. She has a speech

> disability

> which I am now wondering if it could have been caused by the

> vaccines. I have a son who is 3, and is fully vaccinated for his

> age.

> He was born with Hirschsprung's Disease (a congenital disease of

> the

> colon), but is for the most part fine now. I haven't noticed any

> affects from the vaccines in him, other than he is extremely

> hyper

> and strong-willed. I am not sure that is from the vaccines or

> the

> fact that he's a 3 year old boy! I have another son who is 16

> months. He has been vaccinated to 6 months. He is the reason I

> started researching vaccines, and I will NEVER again inject that

> poison into my children.

>

> So, here's our story. It all started with some nasal congestion

> when

> he was 3 weeks old. It gradually got worse, and just before he

> was 2

> months old, he started wheezing. I took him to the doctor, and

> they

> diagnosed him with croup, and gave him nebulizer meds. They told

> me

> to wait a couple of weeks for his 2 months vaccines. So after he

> was

> over this wheezing episode, I took him in and he got his 2 month

> vaccines. Within a week, he was wheezing again (unfortunately, I

> didn't make the connection). I took him back to the doctor, and

> they

> gave him more nebulizer meds. He continued to get worse

> througout the

> week, and I took him back that Friday. His breathing was so bad,

> they

> debated hospitilizing him. They ended up letting him come home,

> but I

> had to wake up every 2 hours to nebulize him. They did

> bloodwork,

> which showed some kind of unknown virus (RSV negative). Over the

> course of 6 weeks, he finally stopped wheezing, then I took him

> to

> get his 4 month shots. Within a week, he was wheezing again. And

> once

> again, over the course of 6 weeks, he finally stopped wheezing.

> And

> then once again, I took him in for his 6 month shots, and same

> story... wheezing. Looking back and typing this, it seems so

> obvious.

> I was so pro-vaccine that it never occured to me that the

> vaccines

> were causing all his problems.

>

> Anyway, I started to introduce solids to him around 6-7 months,

> which

> he rejected. He would only nurse. He was very clingy to me. He

> was

> very pale and not very active. As he neared his 1st birthday, he

> started getting diarrhea and diaper rash. I switched to cloth

> diapers, thinking maybe he was allergic to the diapers...that

> didn't

> work. His eczema started getting worse. At his 12 mth wbv, he

> had not

> gained any weight since his 9 mth wbv, so we decided to do some

> allergy testing. I suspected maybe a milk or egg allergy but was

> shocked when the results came back. He was allergic to soy,

> milk,

> wheat, peanuts and a severe egg allergy! No wonder my poor baby

> was

> so miserable! They told me he couldn't have a flu shot, but

> everything else should be ok. I had always thought people with

> egg

> allergies weren't supposed to get the MMR also, so that's when I

> started my research.

>

> I am convinced that the vaccines played a part in his food

> allergies.

> There is not one person that we know of in my family or my

> husband's

> with food allergies, or eczema. Dominic has not had a wheezing

> episode since stopping his vaccinations other than a cold he had

> a

> couple of weeks ago... that episode only lasted a few days, not

> weeks. He is such a different little boy now. He is active and

> playful. His skin coloring is better. He loves eating solids

> (but

> still loves his mama's milk)and has very few episodes of

> diarrhea and

> diaper rash. He still has problems with his eczema and weight

> gain

> though, which is, I'm guessing, due to his food allergies.

>

> Most of our family and friends are accepting of not vaccinating

> Dominic any further, but think we're crazy for not wanting to

> vaccinate our other 2 children anymore. Some were shocked when I

> started naming off the ingredients... I'm going to continue to

> work

> on them and hopefully, they will see the light!

>

> Sorry so long. Thanks for reading my story!

>

December 18, 2008

Where would I find a sensory integration therapist? She gets speech therapy

twice a week at school, but I haven't really noticed much difference. My 3 yr

old speaks more clear than she does!

I have thought about finding a naturopath, but unfortunately, there is not one

around here (western KY) that I know of. Also, we are losing our health

insurance soon (my husband's plant is closing), so the kids will be on medicaid.

I'm not sure that medicaid will pay for a naturopath. Thankfully, our

pediatrician's office is wonderful. They are non-vax friendly, extended

breastfeeding friendly and don't prescribe antibiotics right away. I would like

to find a way to get Dominic off of zyrtec though. If he doesn't take it, he

gets congested and starts itching everywhere.

________________________________

From: " wharrison@... " <wharrison@...>

Vaccinations

Sent: Wednesday, December 17, 2008 10:53:21 PM

Subject: Re: Hi! New to group