New here

[Guest guest]

Hi Terri and welcome to the board!

My name is Tracey and I have a 13 month old daughter,

le, who like your son was born with a

hemvertibra - congenital scoliosis. I'm sorry they

put him in a brace! Our ortho told us first time we

saw hime that a brace would not work in this case.

le has progressed slightly, and we are awaiting

our September appointment, at which time he will

decide whether to operate or not - she will have the

fusion surgery.

I was glad to hear that you have a doctor now who

knows that braces are of no use, and although I

understand your concerns (I'm just as worried for my

baby), he is on the right track as far as surgery. Do

you know if he's considering extraction of that

mal-formed vertabra?

There are so many wonderful people on this board - who

know so much more than me, so I am sure you will find

them a huge source of help, inspiration, and guidance.

I feel your fear, and concern for the future, but

there are success stories out there, and I feel more

confident facing this situation than I did 6 months

ago.

I look forward to learning more about you and Wy, and

hope that you keep us updated.

Gotta go - angel has woken!

Tracey

--- terrilin_1999 <terrilin_1999@...> wrote:

> Hello everyone! My name is Terri, I am the mother to

> a wonderful 4

> year old son named Wyatt (Wy). Wy was born with

> hemivertabra which

> caused scoliosis. He has been put in a TLSO since he

> was 9 months

> old. His curve has gotten wrose. UofM had talked

> about putting rodes

> in his back but scoliosis is not the only thing

> wrong with him. He

> was born with Holt-Oram Syndrome which left him

> missing his raduis

> bone in his right arm along with a few other bone

> deformaties.

> Living in Michigan was causing him other problems

> due to the cold

> weather, (ended up in a leg brace, and wheelchair

> during the cold

> months). So we have moved to the state of Arizona.

> How much better

> he is already starting to feel.

> We have been told that his scoliosis will never get

> better in a

> brace. The real problem is the hemivertabra's. Wy is

> going to have

> spinal fusion surgery in a few months at St. Joe's

> Hospital in

> Phoenix by Dr. Shindell. Those vertabra's

> have stopped

> growing so the Doc. seen no reason to put rodes in (

> which he would

> have to go back in an ajust everytime Wy grew).

> I as a mother am scared but yet happy at the same

> time. 3 weeks

> before his surgery I am going to have another baby.

> So it all seems

> alittle crazy to me.

> I was hoping to hear some GOOD success stories or

> find other parents

> who understand me and my feelings.

> Thank You and God Bless

> Terri

>

>

>

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

[Guest guest]

Hi Terri,

I also welcome you to this wonderful group of parents. I was curious if your son has just one vertebrae. There is a Mom on here I believe whose son had one extracted and then went into the casting method developed by Doctor Min Mehta. Have you also heard of the Titanium Rib, or VEPTR as it is called now? Fusion is a big and permanent step. My daughter Moriah has two hemivertebrae that we fused, and it kept braking. Her scoliosis continued to progress. So far the VEPTR is the only intervention we've found that has managed her progressive curve. You can find out more info about the VEPTR at www.veptr.com. Moriah's story is on the website at www.infantilescoliosis.org. You can also find out about the casting method on that website as well. Feel free to ask questions here. There are lots of parents dealing with scoliosis in their

children. Each child manifests the scoliosis in a different way. Again welcome. I look forward to hearing how things work out for your son.

Shellie GrantTracey <tctheaussie@...> wrote:

Hi Terri and welcome to the board!My name is Tracey and I have a 13 month old daughter,le, who like your son was born with ahemvertibra - congenital scoliosis. I'm sorry theyput him in a brace! Our ortho told us first time wesaw hime that a brace would not work in this case. le has progressed slightly, and we are awaitingour September appointment, at which time he willdecide whether to operate or not - she will have thefusion surgery. I was glad to hear that you have a doctor now whoknows that braces are of no use, and although Iunderstand your concerns (I'm just as worried for mybaby), he is on the right track as far as surgery. Doyou know if he's considering extraction of thatmal-formed vertabra?There are so many wonderful people on this board - whoknow so much more than

me, so I am sure you will findthem a huge source of help, inspiration, and guidance.I feel your fear, and concern for the future, butthere are success stories out there, and I feel moreconfident facing this situation than I did 6 monthsago.I look forward to learning more about you and Wy, andhope that you keep us updated.Gotta go - angel has woken!Tracey--- terrilin_1999 <terrilin_1999@...> wrote:> Hello everyone! My name is Terri, I am the mother to> a wonderful 4 > year old son named Wyatt (Wy). Wy was born with> hemivertabra which > caused scoliosis. He has been put in a TLSO since he> was 9 months > old. His curve has gotten wrose. UofM had talked> about putting rodes > in his back but scoliosis is not the only thing> wrong with him. He > was born with Holt-Oram Syndrome which left him> missing his raduis > bone in

his right arm along with a few other bone> deformaties. > Living in Michigan was causing him other problems> due to the cold > weather, (ended up in a leg brace, and wheelchair> during the cold > months). So we have moved to the state of Arizona.> How much better > he is already starting to feel. > We have been told that his scoliosis will never get> better in a > brace. The real problem is the hemivertabra's. Wy is> going to have > spinal fusion surgery in a few months at St. Joe's> Hospital in > Phoenix by Dr. Shindell. Those vertabra's> have stopped > growing so the Doc. seen no reason to put rodes in (> which he would > have to go back in an ajust everytime Wy grew).> I as a mother am scared but yet happy at the same> time. 3 weeks > before his surgery I am going to have another baby.> So it all seems >

alittle crazy to me. > I was hoping to hear some GOOD success stories or> find other parents > who understand me and my feelings.> Thank You and God Bless> Terri> > > ____________________________________________________Start your day with - make it your home page http://www./r/hs

Start your day with - make it your home page

[Guest guest]

Tracey and Shellie,

First thank you very much for such a warm welcome. Wy

was born with 4 hemivertebras. This surgery will only

fuse 2 of the verts. The doc. said the other 2 are

still growing and are not causing such a problem as

the others. From what he said Wy would have to get the

other 2 fused after he stopped growing. We had talked

about the titanium Rib but Dr. Shindell thought the

fusion would end up being the best for Wy. They are

going to take bone graphes from his extra Fused rib to

fuse his verts.

I am just feeling over whelmed right now. I hope I can

deal with both Wy during and after his surgery and his

new baby brother. I want to make sure they both get

what they need.

I was really wondering Shellie, how was the hole

thing? From the hospital stay to going home and check

ups? Also how painful is it when they brake?

Well once again thank you both

Have a blessed Day

Terri

--- Tracey <tctheaussie@...> wrote:

> Hi Terri and welcome to the board!

>

> My name is Tracey and I have a 13 month old

> daughter,

> le, who like your son was born with a

> hemvertibra - congenital scoliosis. I'm sorry they

> put him in a brace! Our ortho told us first time we

> saw hime that a brace would not work in this case.

> le has progressed slightly, and we are

> awaiting

> our September appointment, at which time he will

> decide whether to operate or not - she will have the

> fusion surgery.

> I was glad to hear that you have a doctor now who

> knows that braces are of no use, and although I

> understand your concerns (I'm just as worried for my

> baby), he is on the right track as far as surgery.

> Do

> you know if he's considering extraction of that

> mal-formed vertabra?

> There are so many wonderful people on this board -

> who

> know so much more than me, so I am sure you will

> find

> them a huge source of help, inspiration, and

> guidance.

>

> I feel your fear, and concern for the future, but

> there are success stories out there, and I feel more

> confident facing this situation than I did 6 months

> ago.

>

> I look forward to learning more about you and Wy,

> and

> hope that you keep us updated.

>

> Gotta go - angel has woken!

>

> Tracey

>

> --- terrilin_1999 <terrilin_1999@...> wrote:

>

> > Hello everyone! My name is Terri, I am the mother

> to

> > a wonderful 4

> > year old son named Wyatt (Wy). Wy was born with

> > hemivertabra which

> > caused scoliosis. He has been put in a TLSO since

> he

> > was 9 months

> > old. His curve has gotten wrose. UofM had talked

> > about putting rodes

> > in his back but scoliosis is not the only thing

> > wrong with him. He

> > was born with Holt-Oram Syndrome which left him

> > missing his raduis

> > bone in his right arm along with a few other bone

> > deformaties.

> > Living in Michigan was causing him other problems

> > due to the cold

> > weather, (ended up in a leg brace, and wheelchair

> > during the cold

> > months). So we have moved to the state of Arizona.

> > How much better

> > he is already starting to feel.

> > We have been told that his scoliosis will never

> get

> > better in a

> > brace. The real problem is the hemivertabra's. Wy

> is

> > going to have

> > spinal fusion surgery in a few months at St. Joe's

> > Hospital in

> > Phoenix by Dr. Shindell. Those vertabra's

> > have stopped

> > growing so the Doc. seen no reason to put rodes in

> (

> > which he would

> > have to go back in an ajust everytime Wy grew).

> > I as a mother am scared but yet happy at the same

> > time. 3 weeks

> > before his surgery I am going to have another

> baby.

> > So it all seems

> > alittle crazy to me.

> > I was hoping to hear some GOOD success stories or

> > find other parents

> > who understand me and my feelings.

> > Thank You and God Bless

> > Terri

> >

> >

> >

>

>

>

>

> ____________________________________________________

> Start your day with - make it your home page

> http://www./r/hs

>

>

__________________________________________________

[Guest guest]

Hi Terri,

I'll try to answer your questions. I can only tell you based on our experience. I hope some of it will be helpful to you. Also let me just mention that we feel like we missed out on some great things for Moriah, like the casting, and so anything I suggest is just in the interest of helping another parent be aware and possibly save them a few steps or mistakes we made. As for the VEPTR, only a doctor trained to do the evaluations should really tell you whether or not your son in a candidate. I do know it was originally created for kids with missing ribs and it has been used on kids with fused ribs and moderate and severe scoliosis.

First, when the fusion breaks/cracks they don't feel it. It shows up on xrays as hairline cracks. In Moriah's case her curve progressed. She has hemis at T9 and T10 her breaks occured at T8 and T11. She was fused from T3-L1.

The hospital stay depends alot on the chid's health. Especially lung health. What is Wyatt's curve measurements? Moriah's was extreme 115 degrees, and her lungs were compromised. Her first fusion at 2yrs old, she was in a cast afterward for a few days to protect the site. They had her up on her feet by day 3 I think. She was only in the hospital about a week. She was fitted for a TLSO to wear for 6-9 mos just to protect the fusion. I was told it takes 6mos to a year for fusion to become solid.

Also find out what kind of fusion he would have. Mo had either anterior or posterior first and then had to have the additional fusion a year and a half later because her curve had "crank shafted" taking the path of least resistance and continuing to curve.

Wyatt is four, so ask yourself how much he can understand about what is happening, and how much he really wants to know. Moriah wanted to know about how they were going to have her go to sleep, but didn't want the details of exactly what they were going to do to her back. She wanted to know what her level of activity would be after the surgery and what would be different about her. Surgery can be a very scary process. Moriah likes to have one of us (usually Daddy) with her until she is completely out. They give her Versed before - hand to begin the process. Moriah likes to know what everything is and what it is for, ie. any IV's she would have or drainage tubes, the foley catheter (for potty) etc. You know your son, and just prepare him as much as possible and only what he can handle. Hospital social workers and Child Life Specialists are trained in preparing parents and children for surgery. Also

bring things from home that he is attached to and activities to keep him busy while recovering.

Also, have as much support around you as possible. With Wyatt's brother coming so soon, you will especially need some help. Designate someone in your family or friends to be the one to call everyone with after surgery details. See if someone can help with the house work for awhile, bring you meals, do your shopping, whatever. Don't be afraid to ask for help. If you go to a church, ask them to help with these things, that's what they are there for. Protect yourself and your new baby. Take time out to relieve stress. I was 5 mos preganant with Moriah's brother for her second fusion. You have to just not panic, rest, and have lots of support.

I hope some of this is helpful to you. I know how overwhelming it is. Just do your research, know as much as you can about Wyatt's scoliosis, and make an informed decision. Be sure you have confidence in your child's doctor, not only in his or her medical ability, but his or her honesty with you and their working towards your child's best interest, and not their bank account's interest.

Keep us posted on what happens, sorry to be so long winded.

Shellie

Tracey and Shellie,First thank you very much for such a warm welcome. Wywas born with 4 hemivertebras. This surgery will onlyfuse 2 of the verts. The doc. said the other 2 arestill growing and are not causing such a problem asthe others. From what he said Wy would have to get theother 2 fused after he stopped growing. We had talkedabout the titanium Rib but Dr. Shindell thought thefusion would end up being the best for Wy. They aregoing to take bone graphes from his extra Fused rib tofuse his verts.I am just feeling over whelmed right now. I hope I candeal with both Wy during and after his surgery and hisnew baby brother. I want to make sure they both getwhat they need.I was really wondering Shellie, how was the holething? From the hospital stay to going home and checkups? Also how painful is it when they

brake?Well once again thank you both Have a blessed DayTerri--- Tracey <tctheaussie@...> wrote:> Hi Terri and welcome to the board!> > My name is Tracey and I have a 13 month old> daughter,> le, who like your son was born with a> hemvertibra - congenital scoliosis. I'm sorry they> put him in a brace! Our ortho told us first time we> saw hime that a brace would not work in this case. > le has progressed slightly, and we are> awaiting> our September appointment, at which time he will> decide whether to operate or not - she will have the> fusion surgery. > I was glad to hear that you have a doctor now who> knows that braces are of no use, and although I> understand your concerns (I'm just as worried for my> baby), he is on the right track as far as surgery. > Do> you know if he's

considering extraction of that> mal-formed vertabra?> There are so many wonderful people on this board -> who> know so much more than me, so I am sure you will> find> them a huge source of help, inspiration, and> guidance.> > I feel your fear, and concern for the future, but> there are success stories out there, and I feel more> confident facing this situation than I did 6 months> ago.> > I look forward to learning more about you and Wy,> and> hope that you keep us updated.> > Gotta go - angel has woken!> > Tracey> > --- terrilin_1999 <terrilin_1999@...> wrote:> > > Hello everyone! My name is Terri, I am the mother> to> > a wonderful 4 > > year old son named Wyatt (Wy). Wy was born with> > hemivertabra which > > caused scoliosis. He has been put in a

TLSO since> he> > was 9 months > > old. His curve has gotten wrose. UofM had talked> > about putting rodes > > in his back but scoliosis is not the only thing> > wrong with him. He > > was born with Holt-Oram Syndrome which left him> > missing his raduis > > bone in his right arm along with a few other bone> > deformaties. > > Living in Michigan was causing him other problems> > due to the cold > > weather, (ended up in a leg brace, and wheelchair> > during the cold > > months). So we have moved to the state of Arizona.> > How much better > > he is already starting to feel. > > We have been told that his scoliosis will never> get> > better in a > > brace. The real problem is the hemivertabra's. Wy> is> > going to have > > spinal fusion surgery in a few

months at St. Joe's> > Hospital in > > Phoenix by Dr. Shindell. Those vertabra's> > have stopped > > growing so the Doc. seen no reason to put rodes in> (> > which he would > > have to go back in an ajust everytime Wy grew).> > I as a mother am scared but yet happy at the same> > time. 3 weeks > > before his surgery I am going to have another> baby.> > So it all seems > > alittle crazy to me. > > I was hoping to hear some GOOD success stories or> > find other parents > > who understand me and my feelings.> > Thank You and God Bless> > Terri> > > > > > > > > > > ____________________________________________________> Start your day with - make it your home page

> http://www./r/hs > > __________________________________________________

[Guest guest]

Welcome to the group Terri and Wyatt!

Please read www.infantilescoliosis.org in its entirety when you get a chance. There is a lot of info on the site and many awsome, educated, experienced parents on this group.

There are a couple procedures that may have not been mentioned to you, that might be able to help Wyatt. Like , Carmell, and Gail mentioned, please check into the Titanium Rib procedure (VEPTR) and the halo/cast procedure. Neither require fusion (in most cases) and may be able to help Wyatt buy some valuable growing time.

Thanks for joining the group. You'll find a lot of information here.

Sincerely,

HRH

new here

Hello everyone! My name is Terri, I am the mother to a wonderful 4 year old son named Wyatt (Wy). Wy was born with hemivertabra which caused scoliosis. He has been put in a TLSO since he was 9 months old. His curve has gotten wrose. UofM had talked about putting rodes in his back but scoliosis is not the only thing wrong with him. He was born with Holt-Oram Syndrome which left him missing his raduis bone in his right arm along with a few other bone deformaties. Living in Michigan was causing him other problems due to the cold weather, (ended up in a leg brace, and wheelchair during the cold months). So we have moved to the state of Arizona. How much better he is already starting to feel. We have been told that his scoliosis will never get better in a brace. The real problem is the hemivertabra's. Wy is going to have spinal fusion surgery in a few months at St. Joe's Hospital in Phoenix by Dr. Shindell. Those vertabra's have stopped growing so the Doc. seen no reason to put rodes in ( which he would have to go back in an ajust everytime Wy grew).I as a mother am scared but yet happy at the same time. 3 weeks before his surgery I am going to have another baby. So it all seems alittle crazy to me. I was hoping to hear some GOOD success stories or find other parents who understand me and my feelings.Thank You and God BlessTerri

[Guest guest]

Hi

Welcome to group here

I finished treatment 2 weeks ago done the 24 week interferon/ribavirin

Cleared at 4 months. Sides were awful. I managed to get through it with the

support group here

The choice is yours to do treatment again

We will support you here whatever your decision you make

Take care

Best to you

Annita

okseven_7

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

Start your day with - make it your home page

[Guest guest]

Hi Pat,

I did the combo treatment with the Peg intron and rebetrol, while I didn't clear

then, killed a bunch of them virus buggers. Did the whole 48 weeks. was a

non-responder.

Then Doctor suggested I try the Pegasy and co-Pegasy. I am current doing that.

And I am undetectable as of this moment. I am also type 1a. So that makes us

related via the virus. Hi Bro!!!

I was a corpsman in the Navy(Desert Storm Vet)therefore the nickname Doc , and a

nurse for 25 plus years. Pegasy treatment is not as harsh as the Peg-intron

side effects. Some things are the same. Ya still get tired. Take a power nap,

will restore you alot.

But all in all it is not as bad as the Peg-intron.

One thing I have found is keeping a good mental attitude has helped me alot.

Positive thoughts are my manta.

Glad you found us.

Janet

<pcole_49319@...> wrote:

Hi all,

My name is and I have hepatitis c, type 1A. I am a Vietnam vet

and think I got this as a medic over there in 1971. I did regular

combo back in 2000 but failed. Have been offered new Peg TX but I

had severe sides with first TX and I am quite reluctant.

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]

Thanx Janet & Annita for the nice welcome.

[Guest guest]

Thanx Janet & Annita for the nice welcome.

[Guest guest]

You are very welcome

okseven_7

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

Start your day with - make it your home page

[Guest guest]

You are very welcome

okseven_7

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

Start your day with - make it your home page

[Guest guest]

Hi ,

My son Conner was 9 and was pretty healthy when we started Trileptal for

simple partial seizures. It worked fairly well controlling seizures (before

meds he was having 10-20 per day and after meds he dropped to about 2 per

month). Four months later, Conner was hospitalized in severe respiratory

distress, we couldn't get him off oxygen for days and nobody could figure

out what was going on (chest x-ray was clear and he didn't respond to asthma

treatments). To make a long story short, we quickly learned that his immune

system had crashed. Out of the three different immunologists we've seen,

two of them say that the Trileptal was the culprit. We stopped the

Trileptal and held off on IVIG, while keeping Conner homebound to prevent

serious infections. We were hoping his immune system might come back on

it's own, but it's been almost 1-1/2 years and we still have no improvement.

The good news is that we did eventually start IVIG/SCIG and that seems to

help with the seizure activity. He isn't on any meds for seizures and may

have a partial seizure once every couple of months, definitely something he

can deal with. Unfortunately, his immune disorder is fairly complicated and

we're told it really can't be classified into any of the known PIDs. It's

been a tough year and a half, but we still looking for ways to improve his

quality of life. Conner eventually went back to school, but naps most days

in the nurse's office, we're making some changes with meds to try to get him

feeling better.

Incidentally, some of the info I've read on drug-induced immunodeficiency

seems to point to having a genetic predisposition to it and the drug acts as

a trigger to develop a full-blown immune disorder. Unfortunately, there

isn't much info out there on it! Let me know if you have any questions.

Feel free to visit our website at: www.caringbridge.org/in/connersmith

Take care,

Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD,

immunodeficiency-SCIG, and now adrenal insufficiency),

Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided),

Evan (11, asthma and mild hearing loss/unaided),

and Kelsey - (9 going on 19!)

[Guest guest]

tracey-welcome and you sound like you have had to endure so much pain-I

have budd chiari liver disease and am wondering what arnold chiari is. I

am carol-57 and live in kansas city mo-have systemic lupus, lymphoma,

,ung and throat cancer and am currently having chemo due to another new

polyp on my right vocal cord. Hope you find support and compassion here.

carol

On Fri, 02 Sep 2005 02:25:21 -0000 " Therese " <tracey.white@...>

writes:

> Hi, I'm a new member and thought I would introduce myself. My name

> is Tracey and I am 29 years old (will be 30 in January! :-D) I was

> born with Spina Bifida (SB), Hydrocephalus and Arnold Chiari

> Malformation. I am a full-time wheelchair user. I live in Central

> Minnesota with , my Partner of eleven years (not married due to

>

> SSI issues), our 6-year-old red tabby cat, Pitter, and our 2-year-

> old black Lab, Buddy, who is a service dog in training.

>

> Buddy is primarily my service dog, but he also " works " for ,

> who also has SB and started using a wheelchair part-time a few years

>

> ago. I have been a full-time wheelchair user since the age of five.

>

> I have rotator-cuff problems from all that time wheeling, and now

> use Quickie Extender wheels on my chair to make hills and rough

> terrain easier to handle. I also have scoliosis, which has

> necessitated a total of six spine surgeries. As a result, I have

> osteoarthritis in my spine and deal with a lot of pain. It's hard to

>

> bend down to pick things up, which is where Buddy comes in.

>

> What led me to this group was a search in

> for " endometriosis, " which I haven't been diagnosed with, but

> strongly suspect I have. Aside from the normal back pain, I have had

>

> a " stitch " in the upper-left side of my back, which was originally

> diagnosed as costochondritis, an inflammation in the tissue between

>

> the ribs. Regular OTCs didn't help the pain, and I suffer from

> frequent barometric pressure related headaches, also, so she (my GP)

>

> put me on Vicodin, which I find myself taking almost daily

>

> I recently got a form-fitted cushion for my wheelchair, which has

> substantially decreased my back pain, but there is still

> this " stitch " in my back. Because of the decrease in over-all pain,

>

> I've noticed that the intensity of this " stitch " increases several

> hours prior to my having a bowel movement. I went online and looked

>

> up " upper intestinal pain " and links to sites about endometriosis

> popped up. I read the other symptoms, and they sound exactly like

> me. Also, my mom had to have a hysterectomy as a result of

> endometriosis, so there's the possibility of a genetic link. I

> basically joined because I'd like to talk to others with

> endometriosis and other un-related health problems.

>

> Tracey

>

>

>

>

>

>

>

>

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[Guest guest]

On 9/4/05, songofjoy4ever@... <songofjoy4ever@...> wrote:

tracey-welcome and you sound like you have had to endure so much pain-Ihave budd chiari liver disease and am wondering what arnold chiari is.

Arnold Chiari is a malformation of the brain stem that causes it to press against the spinal cord. It can affect breathing, swallowing, gag reflex, and other areas. For the most part my Arnold Chiari has been asymptomatic since I had surgery for it at age 5, but the malformation is there according to an MRI I had about 10 years ago.

Tracey

-- Tracey White, Life Partner to Piskur.Summer has come and passed The innocent can never last Wake me up when September ends-Green Day

[Guest guest]

:

I believe there is a support group in

Fayette County for children with high functioning autism. I'm not

sure how to reach them, but someone here can hopefully let you know. I

also facilitate a support group for parents on the south side of Atlanta,

and we meet in Clayton County. It is not limited to families with

high functioning children. You are welcome to join our e-mail group

as well, called " southsidesupport " at . Also,

feel free to give me a call, and I'll be glad to give you more information.

My work number (easier to reach me here), is 770-477-3392.

Cowen

Doug and Harper

<d_mharper@...>

Sent by: autism

09/12/2005 02:25 PM

Please respond to

autism

To

autism

cc

Subject

New here

Hi there,

I'm a parent from Peachtree City, and my 2 year old son Bobby was just

diagnosed with mild autism last week. I'm interested in hearing from

any other southside Atlanta parents about support groups in our area,

since driving to the northside on a regular basis is not a great option

for me.

Thanks!

______________________________________________________

for Good

Donate to the Hurricane Katrina relief effort.

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[Guest guest]

Hello

I am intrigued by your story. What stood out was the

possibility of a connection between the fever episodes

and food allergies. Is this possible? Does anyone

know? My son is like your daughter; he gets frequent

fevers, almost monthly, but not on a fixed schedule.

He never has any mouth sores either, just the strange

fevers. I am also trying to pinpoint it all to one

thing, and seems to fit, except for the lack of

schedule and mouth sores. My husband has some severe

food allergies, so now I am beginning to wonder about

that.

Does anyone else out there have a child with food

allergies and fever episodes? Our stories are all so

similar. Keeping up the communication about all of

this has been so helpful!

--- letsvt <lisa@...> wrote:

> I am a mom of three, the youngest of which, has

> reccurent fevers. I'm not sure if she has

> but boy, so much of it seems similar to what

> we're going through. She started

> having fevers at 3 (she's 5 now). She was healthy

> before that aside from a croup

> hospitilzation and an allergic reaction to

> penicilan. When the fevers started they came on,

> out of the blue, and lasted about 7 days. Her temp

> usually went to 104.5. It would

> disappear as abruptly as it came on and she had no

> other symptoms. My other two kids

> never seemed to get sick when she did. Her fevers

> are not always regular. Sometimes

> they're like clockwork. Other times they aren't. The

> average is 4-6 weeks with a few

> shorter or longer periods here and there. She can be

> chipper even with a 102+ fever. Over

> the past two years we've come to recognize when

> she's getting sick. She'll get very

> emotional and cranky a day or two before. Then

> she'll complain her legs hurt and then,

> wham. Fever for a week. When she's healthy, she's

> awesome; vibrant, cheerful, perfect.

>

> After two years of having doctors telling us she was

> fine we finally had her tested (I

> couldn't take another fever and my anxiety that

> comes with them any more.) She was

> tested at the very tail end of an episode. Her sed

> rate was high, ana positive but all else

> okay. They did more tests to rule out lupus and

> other autoimmune disorders. All came

> back fine except a low c4. The rheumatologist and

> immunologist don't see the need for

> any further testing.

>

> In the midst of all this we had her food allergy

> tested. My other two kids have food

> allergies and a naturopathic doc we see recommended

> testing for Nora. She came back

> with high and moderate reactions to multiple foods;

> gluten, soy, eggs, sesame, kidney

> beans, peas, coffee, blueberries. We took her off

> those foods in hopes that we would see

> improvement. Then she had a non-allowed food, had a

> reaction, and had one of the worst

> fevers yet a few days later. I don't know if these

> things were connected or not. Some think

> definately yes. Others just don't know.

>

> So, we're still figuring this out and I'm wiped out.

> I put her to bed tonight and she felt

> warm to me. So now I'm waiting for what seems like

> the inevitable. I'm not sure if she has

> . Some things fit so perfectly, and others

> maybe not so perfectly. But, I saw an article

> about it and I felt like I was reading about us.

>

> I'm curious to know if variations in the time

> between fevers as well as the absence of the

> mouth sores would rule this out. Those are the two

> pieces that don't seem to fit my

> daughter. She does get a sore throat and swollen

> lymph nodes - though she never

> complains of them.

>

> Thanks for listening and I appreciate any responses.

>

> lisa

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

Welcome to the group Lynn, we are glad to have you here! "Lynn H. Harper" <lharper@...> wrote:

Hi everyone, I just joined and look forward to learning from all of you. I live in Georgia and have a 6 year old daughter that was diagnosed with Aspergers this summer. I'm trying to read all I can get my hands on about it but I hope all of you can help me too. I'm glad to be here and I appreciate you letting me be a part of this group.Lynn H.

[Guest guest]

Welcome Lynn!!

My name is and I have a 10 year old boy with Aspergers. We live in Southern California. This is a great group... You will learn alot here..... The main thing you will learn is that you are not the only one going through the things you go through..... Wonderful support here!!!! Again welcome to the group!!!!!

in Lancaster, Ca"Lynn H. Harper" <lharper@...> wrote:

Hi everyone, I just joined and look forward to learning from all of you. I live in Georgia and have a 6 year old daughter that was diagnosed with Aspergers this summer. I'm trying to read all I can get my hands on about it but I hope all of you can help me too. I'm glad to be here and I appreciate you letting me be a part of this group.Lynn H.

for Good Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

Hi Lynn,

Hay, my last name is Harper also! I got it from my husband and kept it after we divorced, we were married for 31 years, divorced for 10, and he passed away 4 years ago. We had four children together, who are all grown now, three sons and a daughter. They are Tom, Jeff, Marty, & Tara. Our third son, Marty, has had a lot of problems starting at about the age of 2. He was developing normally and then started having seizures quite suddenly one day, and then he developed all sorts of learning and behavioral problems. We have no idea what happened to his brain, but do know that some of the drugs he had to take for the seizures didn't help matters much at all.

For years he went to a private school and was labeled "trainable retarded" but he never fit in with any of the programs there and they didn't know what to do with him. I always had the feeling he wasn't that retarded at all, but was just frustrated because he could not communicate like he wanted to. And them treating him like he was retarded just made him more frustrated until he totally rebelled against them, and against me. This was after he was mainstreamed into public high school when he was about fifteen years old. He was pretty hard to handle for a few years there, but then I took him out of school, and he has settled down considerably since then, over twenty years ago now.

He is 41 years old now and is a sweetheart now, but the seizures have taken their toll on his mind and body so that he cannot speak, cannot walk unassisted, he wears Depends during the day, but uses the toilet for bowel movements, and is on a food tube. He lost his ability to swallow without choking and aspirating, so pneumonia was always a risk which he had terrible in Jan. and had to have lung surgery. He spends his days comfortably sitting by the window and playing with a shoe laces all day, typical "autistic" behavior.

He is an extreme case of autism from what I understand, and has other serious problems also, the seizures, etc. He used to have 20 grand mal a month, but only has 3 or 4 now, so that is good.

Well that is about it from here, just want to let you and the others know that some have walked that rough and rocky road before you, and I don't think your daughter will have such extreme problems. Most on this group seem to be doing very well, have been diagnosed properly, not like my son was, and they are receiving the help they need.

Keep writing, it feels good to share, and to vent, whatever, and we all care about you, and are here to encourage you!

I think I will send you a picture of my son, I was looking at them today and spotted a good one. Have so many in this computer.

Much love to you,

Carolyn in rainy Oregon today

New Here

Hi everyone, I just joined and look forward to learning from all of you. I live in Georgia and have a 6 year old daughter that was diagnosed with Aspergers this summer. I'm trying to read all I can get my hands on about it but I hope all of you can help me too. I'm glad to be here and I appreciate you letting me be a part of this group.Lynn H.

[Guest guest]

> Hello, everyone,

> My family doctor diagnosed me with pre-diabetes last week

What was your reading? As early as 5 years ago the normal fasting levels for blood sugars was between 80 and 120, and it took 2 or more fasting tests at 140 or above to get a diagnosis of diabetes. Now, doctors are labeling people "pre-diabetic" with just one blood test of anything over 90, a number any diabetic would kill for. I'm 52 years old and have had a fasting blood sugar drawn at least once a year since my teens (and I test myself at home on my glucose meter because of hypoglycemia) and my doctors all these years are quite pleased with readings between 70 and 115.

To put yourself at ease, you may want to look into some mailing lists set up specifically for large people with diabetes diagnoses. One on is called Diabetic Friends and run by a wonder lady known as Aunt Susie: diabetic-friends2/

and directions to join a good non- list can be found here:

http://pmw.org/mailman/listinfo/fa-diab

> and it's imperative that I take off at least 100 pounds.

Mainly you have to start eating healthier and getting some exercise in. Start by switching to whole grains instead of white flour - whole wheat bread, brown rice instead of white, cutting *way* back on the amount of fatty meats and cheeses, as scientists have found that fat consumption has as much bearing on controlling blood sugars as simple sugars. Eat smaller but more frequent meals - try to eat every 3 to 4 hours so your blood sugar and insulin levels stay at an even keel without huge rises or drops. Eat breakfast if you don't already do so, and never skip any meal. Eat foods with a high fiber content. They slow the absorption of the carbohydrates from your foods and help in digestion.

And start exercising. A slow 10 minute walk daily for a week or so is great to start, then each week add another 5 minutes. If you have a foot or knee problem, like many of us here do, and walking isn't for you, do some other exercise in the house. Sansone, , and Bliss have loads of exercise videos (see our Links page for their web sites) that can be done by people our size, including a few that can be done in a chair, if you need that. There's also a whole series of exercise videos called Chair Dancing. Many ladies here also recommend water aerobics as a great way to get exercise in if you have a joint problem.

> I've allowed myself to diet my way up the scales to a reading of 301.

My personal highest was 296, but we have a number of women here at your weight and above, so you came to the right place. It's so easy to get ourselves up there, especially if we've been heavy all our lives (I was a 10 pound baby and was *never* in the "normal" weight range) and on restricted calorie diets most of our years. All that dieting has slowed our metabolisms down - our bodies never know when another period of famine (restricted calorie diet) is going to come so it conserves every calorie it can get and stores it as fat. As we women get older and move out of our reproductive years, from around age 30 and up, our bodies retain even *more* fat, as that's where the estrogen is stored. Until we reach menopause (one year with no monthly flow) the only way to get our bodies to release any of that fat isn't with lower calories (which just slows our metabolisms more) but with more exercise, to burn that fat off.

> Like most of the people I know who struggle with weight I've tried every program, every magic potion and followed every diet guru.

And you found that none of them worked for long. *Every* diet plan will work as long as you work it. Even the unhealthy ones, like Atkins or the Cabbage Diet or the M & M diet will help you lose weight if you stick with the plan, but our bodies know better. Our bodies know that 4 days of no bread or starchy vegetables is not healthy, that 2 days of eating just apples is not gonna cut it, and if it ingests one more bowl of cabbage soup it's gonna barf it right up. They fail because that way of eating can't be sustained, that to *be* successful in losing weight the food plan we chose has to be followed for the rest of our lives. We have to make a total lifestyle change if we want to lose weight and maintain that loss.

Our bodies were made to require foods from all the food groups, and if we eat that way we'll be very healthy - IF we stop eating too much of them. One of my problems, and I suspect it might be yours is, too, is that food tastes so darn GOOD and we don't want to stop at one tiny sliver. LOL Also, I'm one of those people that never feels "satisfied" or even "full" until it's too late, that I go from hungry to stuffed with nothing in-between. If I stop before stuffed I'm still hungry, that my tummy keeps growling as if I haven't eaten anything. Scientists noticed just recently that many of us "morbidly obese" people have the same problem and are doing studies with various things like leptin, but they haven't had any success yet. Until then, people like us have to go against our bodies and stay hungry, even though we just ate the amount of food that is appropriate for us.

>I have an appointment with a diabetes educator next month

I'm surprised they're making you wait that long! Will you also be seeing a dietician or nutritionist, or will the diabetes nurse just hand you a low cal diet and leave it at that?

>I'd like to use the diabetic exchange program and I'm wondering if that isn't what uses. I had his cards a long time ago.

From what I've been reading, some diabetes docs are suggesting a low-GI (glycemic) diet instead of calorie counting/exchanges like in the old days. Sugar Busters! and South Beach, part 2, are excellent examples of that, as are Weight Watchers new program (Help me out here, ladies. Is it called the Core Program where you eat the whole grains and not count points?). But even *has* been saying in his Message of the Day in recent years that we should use more whole grains in our diets, so when you want to make a sandwich, instead of white bread use whole wheat. And read labels - some products labeled "whole grain" have enriched white flour and high fructose corn syrup and other things like that listed *before* the "whole grain" in the ingredients list, meaning there's so little of it in the product it's useless to even mention but a good marketing ploy, like Trix cereal saying it's "whole grain" because it contains corn.

Anyway (I DO get sidetracked so easily! LOL)

Yes, ' FoodMover and his old Deal A Meal programs are based on the ADA diabetic exchanges. You can find the gadget pretty cheap on eBay or other auction sites, some stores still sell them new (I've seen them in Walgreen for $10), and his website sells various packages with the FoodMover (both the old one and the newer SlimAway Everyday) at http://www.richardsimmons.com . You can also just go to this web site:

http://members.tripod.com/sue_in_nj/rich.htm

and read up on it all, find the FoodMover page, and copy the calorie card you'll need (the 2000 calorie one) to your computer and print it out full page, laminate it, and use a grease pencil or dry erase marker to "close the windows" when you eat your foods.

Our Files section and our sister site of RSDeal rsdeal have loads of recipes with the exchanges already figured in for you. I also strongly suggest you hit the book store and buy yourself a decent diabetic exchange book, because the booklets that come with the FoodMover don't have that many foods in them. Our Links and Files section also have the exchanges for many restaurants and processed foods to help you, too.

> I'm looking for motivation and a helping hand.

Things have been really quiet since you joined because of the holiday weekend. Until everyone comes back you can take the time to look over the list's web site, join the RSDeal list and grab some recipes, join up on one of those diabetes lists I suggested, and start planning your meals - snacks included - for the next week.

Sue in NJ

[Guest guest]

Sue,

Thank you for all the information! I've been a mess

since the diagnosis. My reading was 103. He said

anything over 90 was a warning. I have a 4 hour test

scheduled next week. The diabetes educator is a

registered dietician. I'm not sure why the long wait

but I'm gathering as much information as I can on my

own.

I asked to join the diabetes group you suggested.

Another thank you! I know I'll get through this but

having your voice of reason has helped me

tremendously.

Ramey

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

Ramey Welcome. I am not to familiar with the diebetic exchange but most plans with the exceptions of the ones that deal with carbs could be equal OR converted to diebetic. I myself do WW. I do not go to meetings anymore to do time. Hoping to go back. A lady that started when I did was a full fledge diebetic and when she lost 30 lbs was told to reduce her meds. By the time she hit 60 she was off all diebetic meds. Educate yourself, make better choices, start exercising, water, journaling, and when you go to see the educator you will have more knowledge and a step ahead.

NH... Mom to Abby Liz 10/94 Anne 7/99

[Guest guest]

> My reading was 103.

Doctors should be shot for scaring people with a fasting blood sugar of 103!

As I said, that number has been a perfectly normal one for millions of

people for the hundreds of years that diabetes has been known! Was this the

first time you ever had a fasting blood sugar drawn? If not, what was your

reading the other times? I would bet money it was in the same ballpark! Some

people say I'm paranoid when I say this, but many agree that the

pharmaceutical companies pushed for the new lower " normal " levels and

they're the ones who encouraged doctors to start treating patients (with

their medications, of course) at much lower numbers. The same thing was done

for blood pressure (normal used to be 120/80, now it's lowered to 110/70 or

even lower).

In the past, doctors would first recommend the dietary and exercise changes

I mentioned, but now many docs think their patients won't do them and

immediately put their patients on medications. If you read up on the side

effect of those meds you wouldn't be so eager to hop on them, that's for

sure! You would make sure to try the easiest thing first - change what you

eat and how much you move! How hard is it to eat ww bread instead of white,

or add more vegetables to your daily menus?

> I have a 4 hour test scheduled next week.

A glucose tolerance test? Be sure to have someone available to drive you

home, or at least bring some food to the testing place with you so as soon

as the last blood vial is drawn you can eat. I've had that test a few times

(the 3-hour twice and 5 hour once) and was shaking so hard by the third hour

I could barely stand. Again, I have the opposite of diabetes -

hypoglycemia - and my sugars would be at rock bottom by the end of the

testing time, but I've read about others with normal sugars who were almost

as bad. Remember, you'll have been fasting for 12 hours before the test even

starts, so it'll be 16 hours since your last bite of food or drink of juice.

Even a pack of peanuts or piece of string cheese and an apple would do.

> The diabetes educator is a registered dietician.

In our city the only one is a registered nurse. If she feels you need a

dietary consult after talking to her she'll tell the doctor and he would

order it, but I've read on many mailing lists that doctors in other parts of

the country automatically order the dietary consultation. Is your diabetes

educator supposed to tell you about self testing, meds, and all that other

stuff or just the meal plans?

> I know I'll get through this but

> having your voice of reason has helped me

> tremendously.

There are a number of women on the list with the same pre-diabetic and even

full-fledged diabetes diagnoses on the list, but I guess they're just away

for the holiday. They'll be able to reassure you better than me. Of course,

you *should* start making those small changes in your diet and exercise,

anyway. *Everyone* should for optimal health. I'm just reassuring you that a

blood sugar of 103 is perfectly normal and nothing to panic over.

So, did you start looking over your cookbooks and piles of recipes and start

making up some meal plans yet?

Sue in NJ

[Guest guest]

Hi, Sue,

I've had regular blood tests for years due to my

thyroid. It stopped working when I was 17. This is

the first time anyone mentioned pre-diabetes. My

doctor didn't start me on any meds. He said exercise

and diet should take care of the problem. He urged me

to begin walking 5 minutes a day to start and add 2

minutes at a time until I get up to half an hour.

Food wise he said to follow the exchange system at

2000 calories until I see the dietician. The glucose

tolerance test is also something I've had before with

the normal results. I have a friend who will drop me

off at the lab and then come pick me up. I was told

to have water and peanut butter crackers afterwards.

I went to the library and checked out several books on

diabetes and also cookbooks that listed the exchanges.

The diabetes books scared me. I have friends who

have diabetes and I know how dangerous it is. And the

thought of poking myself several times a day isn't

pleasant.

I'm doing better this morning. Now I have to head for

the office. I'm not looking forward to the commute.

The holiday spoiled me

Again I thank you for giving me my first sense of

hope.

Ramey

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

> My

> doctor didn't start me on any meds. He said exercise

> and diet should take care of the problem.

> Food wise he said to follow the exchange system at

> 2000 calories until I see the dietician.

Sounds like you have a great doc. It's probably not *his* fault he had to

give you the " pre-diabetic " label, just peer pressure. At least *my* doc

knows better - he's been treating me for over 20 years and knows that those

numbers are my normal and not leaning towards diabetes at all.

The glucose

> tolerance test is also something I've had before

So you know how awful they can get. Some people think it's just a few blood

tests and are amazed at how awful they turn out to be.

> I was told

> to have water and peanut butter crackers afterwards.

Again, you have a great medical staff to tell you this. All the times I had

it, or had patients who were about to undergo it, not once did a doctor or

lab tech explain anything ahead of time. I was warned by the hypoglycemia

books I was reading before my first one, and was always sure to let my

patients know what to expect.

> and also cookbooks that listed the exchanges.

With the push towards low-carb everywhere, cookbooks with exchanges listed

are getting rarer and rarer.

> The diabetes books scared me. I have friends who

> have diabetes and I know how dangerous it is.

If it goes unchecked, and you constantly swing into the high blood sugar

numbers, like the 200'3, 400's or higher. You're far, far away from that

happening with just one reading of 103.

> Now I have to head for

> the office. I'm not looking forward to the commute.

> The holiday spoiled me

You poor thing! LOL My husband was on vacation last week, then the kid was

off of his college classes for the holiday, and I had 2 grumpy guys leaving

me this morning. Finally I had a chance to hit the laundromat and have some

peace and quiet! Now that I'm back, I'll check email again, then dive into a

week's worth of housework. Not a pleasant thought, considering my asthma is

still acting up and I've been awake half the night yet again coughing.

> Again I thank you for giving me my first sense of

> hope.

Now calm down, dive into *your* work, and we'll see you again soon.

Sue in NJ