Re: Hello/

[Guest guest]

Hi ,

It was stubbornness and determination :~) I was having "one of those days" with all the tubing and pediasure (I hate the smell) that I set my mind to have him feed orally. It wasn't easy. He was finally cleared for solids and liquids orally when he was almost 2 1/2 and two months later I was still tube feeding him!

had been on a feeding tube since birth. First because of a heart defect then because of aspirating.

was never interested in eating because he never had the "hungry" feeling because he was always tube fed on a schedule, so I started eliminating one feed at a time and found out what his one favorite food was (which is yogurt). I took out the feeds that were close to the same time that we ate and had him sit at the table in his high chair while we were eating and kept offering him his yogurt. My husband had to do the feeding because he was more willing to eat with him (he never wanted to eat for me). There were sometimes when he wouldn't eat, but I still didn't tube feed him, he had to wait until his next feed (or close to). Then I would offer him his yogurt first and he would eat a little and then finish with the tube feed. The more he began eating the more tube feeds I would eliminate. I talked to his nutritionist and we both agreed to not weigh him during this time because he would naturally lose weight. It took about four months before he really started eating and then it was like a light bulb went on and he found out food is good! He started eating more than my 5 1/2 yr old and sometimes depending on what it is he can eat as much as me. He is still a little skinny boy though, he weighs 24 lbs and is 39 mos old and his twin sister only weighs 26 lbs and is almost 3 inches taller.

It was difficult at times to be so disciplined on not giving him his tube feeds when he didn't want to eat. I was lucky in the fact that he is sooo easy going that he didn't (and still doesn't) fuss when he was hungry. There were some days I felt like saying forget it but I'm hard headed and wouldn't let it get the best of me. There was another thing that helped me, we have a lady in our church that adopted our kids as their grand kids (they don't have any yet) and she would oral feed every chance she got with him. He always responds for her so on days I felt I was hitting a brick wall I would take him over to see her and she would feed him. It gave me a break and she loved it and so did !

I hope this might help. I'm sorry it is so long, I feel I'm just rambling. I'm not very good at phrasing things when I write.

Hang in there and stay determined.

Kim mom to Abigail and (ds) - 3 yrs and Mikayla - 5 1/2

Hello

Hi all,

I wanted to say hello to everyone. I sent a e-mail a few days ago and I don't know if it went through or not. I never received it in my e-mail. So I hope I don't repeat myself.

I have had nothing but computer problems since May - June, I'm hoping they are all worked out now. I feel like a stranger because I haven't been around for a few months.

I'm sorry to hear about little , You are in my prayers. There is a little star Angel in Heaven definately.

, You, your Aunt, little Dylan and Nicala are in my prayers also. So much to happen at one time. Hang in there.

Gail, you hang in there. Sometimes you need to take a me break.

Everyone is doing ok here. Mikayla started Kindergarten this year at our church's school. She really likes it. This is the first year for it. I'm teaching there 2 days a week. I think I took on a little much this year, but I THINK I finally settled into a schedule. is doing wonderful. He is starting to talk now. He has said 2-3 word sentences. He has said; Me too MaMa, Me down MaMa. Last night he said; Night night Da. I am so excited about him talking. The other BIG news is he got his feeding tube out 4 days before his 3rd birthday!! After almost three years of tube feeding he caught on to eating and drinking and now he loves it! He eats more than Mikayla. at one meal. Abbi is doing good also. We are waiting for an opening at the Children's Center for speech therapy for her. She still isn't talking real well. It doesn't slow her down any in getting her point across though.

Sorry to have gotten long on this. I am so exited about being back on line again. I hope to keep up this time.

Kim mom to Abigail and (ds) - 3yrs and Mikayla - 5 1/2

http://DSyndrome.com/Multiples http://DSyndrome.com/Multiples

[Guest guest]

Kim, sounds great. This is a daily run for us. I begining to think it is a typical 2yr old thing.

Dayton wakes up and I give him his meds and 30cc of water(via tube). He is offered some breakfast. NO go on that. I give him 5oz of thick rice ceral lactaid milk. Then around 11:00 Lunch... no go I offer him another 5oz of milk w/rice ceral.Usally after the screaming and loud fits of 30-45 mins go on I give him the cup(also get 10cc of meds via tube). Then afternoon..no go on snack and give him another 5-10 oz w/rice ceral then. Then supper... he may eat 2-5 bites varies day to day. usally no more than 10 bites. I give him another 5 oz w/rice ceral hr before bed. with in the hr I give him 30cc water and meds(via tube). This is a our schedula 99% of the time.

Not sure if it is behavioral or stubbornes. He has always had some form of geeding tube. In the begining was FTT and stomach surgeries,reflux and aspirations. Then got to be more reflux and aspirations. Now still aspirtions. Any suggestions from anyone is appericated.

Thanks in Advance

(mom who is tired) to 7(DS) and Dayton 2 1/2 (DS)

Hello

Hi all,

I wanted to say hello to everyone. I sent a e-mail a few days ago and I don't know if it went through or not. I never received it in my e-mail. So I hope I don't repeat myself.

I have had nothing but computer problems since May - June, I'm hoping they are all worked out now. I feel like a stranger because I haven't been around for a few months.

I'm sorry to hear about little , You are in my prayers. There is a little star Angel in Heaven definately.

, You, your Aunt, little Dylan and Nicala are in my prayers also. So much to happen at one time. Hang in there.

Gail, you hang in there. Sometimes you need to take a me break.

Everyone is doing ok here. Mikayla started Kindergarten this year at our church's school. She really likes it. This is the first year for it. I'm teaching there 2 days a week. I think I took on a little much this year, but I THINK I finally settled into a schedule. is doing wonderful. He is starting to talk now. He has said 2-3 word sentences. He has said; Me too MaMa, Me down MaMa. Last night he said; Night night Da. I am so excited about him talking. The other BIG news is he got his feeding tube out 4 days before his 3rd birthday!! After almost three years of tube feeding he caught on to eating and drinking and now he loves it! He eats more than Mikayla. at one meal. Abbi is doing good also. We are waiting for an opening at the Children's Center for speech therapy for her. She still isn't talking real well. It doesn't slow her down any in getting her point across though.

Sorry to have gotten long on this. I am so exited about being back on line again. I hope to keep up this time.

Kim mom to Abigail and (ds) - 3yrs and Mikayla - 5 1/2

http://DSyndrome.com/Multiples http://DSyndrome.com/Multiples http://DSyndrome.com/Multiples

[Guest guest]

Hi ,

Sorry it has taken me so long to respond. It sounds like a lot of work. I know exactly where you are coming from. had a schedule something like that. It is exhausting. Just keep up trying to oral feed. If you have someone near by that helps you or has a close relationship with Dayton then see if he might eat for them and give yourself a break. It helped . It does get better.

Wishing you luck!!

Kim mom to Abbi and ds - 3 and Mikayla - 5 1/2

Hello

Hi all,

I wanted to say hello to everyone. I sent a e-mail a few days ago and I don't know if it went through or not. I never received it in my e-mail. So I hope I don't repeat myself.

I have had nothing but computer problems since May - June, I'm hoping they are all worked out now. I feel like a stranger because I haven't been around for a few months.

I'm sorry to hear about little , You are in my prayers. There is a little star Angel in Heaven definately.

, You, your Aunt, little Dylan and Nicala are in my prayers also. So much to happen at one time. Hang in there.

Gail, you hang in there. Sometimes you need to take a me break.

Everyone is doing ok here. Mikayla started Kindergarten this year at our church's school. She really likes it. This is the first year for it. I'm teaching there 2 days a week. I think I took on a little much this year, but I THINK I finally settled into a schedule. is doing wonderful. He is starting to talk now. He has said 2-3 word sentences. He has said; Me too MaMa, Me down MaMa. Last night he said; Night night Da. I am so excited about him talking. The other BIG news is he got his feeding tube out 4 days before his 3rd birthday!! After almost three years of tube feeding he caught on to eating and drinking and now he loves it! He eats more than Mikayla. at one meal. Abbi is doing good also. We are waiting for an opening at the Children's Center for speech therapy for her. She still isn't talking real well. It doesn't slow her down any in getting her point across though.

Sorry to have gotten long on this. I am so exited about being back on line again. I hope to keep up this time.

Kim mom to Abigail and (ds) - 3yrs and Mikayla - 5 1/2

http://DSyndrome.com/Multiples http://DSyndrome.com/Multiples http://DSyndrome.com/Multiples http://DSyndrome.com/Multiples

[Guest guest]

Hello , aka Vernie (LOL!!! poke! poke! )

, welcome to the group. You will find many answers here and

you will also find that you have much to offer to those of us that

are---veterans----(for a lack of a better word). We draw strength,

guidance, and just a listening ear from each other. I have two

children with jra and I learn much from newly diagnosed parents as

well as those of us that have been around awhile.

You have a tough road ahead of you, but----YOU ARE NOT ALONE. I wish

when my COleman was first diagnosed that we could have had the access

to info like we do today. This goes a long, long way in helping the

parents help the children. Oh, I can remember how very, very lonely

and disheartening it was years ago. This is a great step and you can

arm yourself with information, ideas, and support just knowing that

folks are out there trying to help us find a cure for our kids.

COleman 10, systemic and Olivia is 8, the precise name of jra is

still being batted around---but I always say, it really doesn't

matter what type, each of them can be tough.

As far as the long winded part----you have come to the right place!

We have plenty to say, lots of ways to say it and well---I'm long

winded too!

Anyhow, Welcome, ask all the questions you like and remember one

thing---You know your child better than anyone, you are your childs

best advocate. Never ever let anyone intimidate you into second

guessing the health of your son. So many of us have and this simply

was because there just weren't that many resources to help us know

differently or because we don't always get to see the dr. we may

trust. Call your local Arthritis Foundation for pamphlets and see if

they have the book titled " Raising a Child with Arthritis " . This

book is very, very helpful and I believe every parent of a jra'er

needs to read it.

Well, it's time to let my fingers get a breath.

Good night and y'all are in my prayers.

Sharon B.

> Hello! I am new to the group, my name is and my son

was diagnosed with Systemic JRA about a month ago. I think i am

still in a daze, and a little bit in denial, even though when the

possibility was first mentioned I began reading everything that I

could get my hands on and was pretty sure of the diagnosis before the

Doctors agreed. He was hospitilized twice before all was evaluated.

He is on a total of 27 mg of Prednilosone daily (spaced out in three

doses) - which he has been on for about a month. He was previously

on decreasing doses of Prednilosone every other day for nephrotic

syndrome associated with Minimal Change Disease which he was

diagnosed with May 2000 (in the hospital on Mother's Day). He had

been hospitilized twice since then for nephrotic syndrome with a

total of three relapses of the nephrotic syndrome before the JRA

symptoms materilized - He had a relapse of the nephrotic syndrome,

brought on by JRA (or the virus as they were then calling !

> it)- so was taking the Prednilos

> one - and the systemic symptoms disapeared after the med was

started, and reappeared as we began to taper the Prednilosone as

indicated by his nephrotic symptoms. I am not sure if the two are

connected - it seems they may be, though his Nephrologist maintains

they are separate. She noted that the good thing is that since he

will be on the high dose Prednilosone for so long that will prevent a

relapse of the nephrotic syndrome. (am i supposed to cheer now?)

(I usually call him Robbie and here lately Rob) will be four

in October. He was a 28 week Preemie who spent the first eight weeks

of his life in the NICU. He had surgery at five months (relatively

minor - if that is possible at five months - he was so small the docs

were concerned about anesthesia). Rob weighed 2 lbs 7 oz at birth

and was still under 11 pounds at ten months. Still small for his

age, he has been growing steadily, so this has me concerned about how

it will affect his growth, as I was already con!

> cerned about the Prednilosone's

> affect prior to the JRA. Though at this point I guess the growth

issue is only one of my many concerns. After I found this group and

began reading - the tears finally came - so I got some of that out of

my system and I appreciate all that all of you do to help out each

other - and now me. It is really hard, on Rob's bad days to look at

him when he tells me in his very grown up matter-of-fact voice, " Mom,

the pain won't go away. " Not a question - a statement of

acceptance. I tell him he will have good days and bad days, and that

the Doctors will find the right way to help him. He told me last

night that he wasn't going to be sick any more - that he didn't like

going to the doctor. Last week, when we were at the hospital for

labwork, we stopped by the cafeteria for lunch (yum! Rob's idea, not

mine) and went to get him an ice cream bar for desert, on the way

back to the table he said " Mom, I want to take it to my room upstairs

& watch tv " He's spent so much time as an in!

> patient recently that he assumed

> we were staying.

> Rob's JRA symptoms started with a slight limp - he said that he was

pushed off a bike at school (daycare) - but the next day at school he

told them that he fell off a scooter at the store the night before

(we hadn't been anywhere and there was no scooter) I assumed that he

had hurt himself - but just didn't remember what happened. The next

day the limp was severe and he was in a lot of pain - a trip to the

doc and multiple xrays and no anwers - and was given motrin. The

next night he cried and then screamed in his sleep (not waking right

away) about the pain in his arms and shoulder and wanted band-aids on

his elbos. His temp was 104.5. I gave him Motrin and held him until

morning and went to his regular doctor. That morning he held his

arms close to his body, walked like an old man and would hold my hand

when crossing the street - because it hurt too much for me to touch

his hand. The did labs, sent us home saying it was probably viral.

His temp was back up when we go!

> t home, then the doc called, sai

> d his labs didn't look good, and had me bring him to the hosp for

admission and more tests. The second admission he was even sicker,

high fevers, rashes that came and went, pain - his liver and spleen

were enlarged (He wouldn't walk many days) He wanted me to pick him

up, wrapping him in a blanket first so I wouldn't hurt him as much

when touching him (The blanket was his idea - he's a pretty smart

kid). I am a divorced, working mom so I am exhausted and know I need

to keep it together so I can care for him. They started him on

cyclosporine earlier this week - and I am not at all happy with the

side affects I am reading associated with this one - particularly

long term.

>

> Well, I tend to ramble even on good days - and this has turned into

a much longer email that I anticipated. I apologized for my lack of

brevity, and thank you in advance for listening, for being there.

>

> Thanks.

>

> Rob's mom

[Guest guest]

Dear

I am so sorry to hear about your son's situation. It must be awful to go through

something like that. I do not have specific information (anatomy/physiological

explanations) but I was taught in nursing school that that is a sign of spinal

cord injury. Has your son been evaluated by a neurosurgeon? My advice at this

point will be to still do the log-rolling to prevent further injury. Any

neurosurgeon will tell you that you just never know what will happen. I know

they might not want to give you false hope, but I think its a good sign that it

only sometimes happens with some movements. That tells me there are things that

you can do to prevent it, right? If you haven't already- please ask to see a

neurosurgeon a.s.a.p. Specifically, one who works with spinal cord injuries. If

you don't know where to start, contact your local hospital or any hospital who

has a floor specifically for spinal cord injuries and ask for a referral.

Take care,

Sanette

...............

One of the side effects to this complication is that when ever he is

manipulated- legs or trunk mostly-he has erections-hence ............is welcome.

Thank you-

--

__________________________________________________________

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[Guest guest]

Welcome to the group! I'm Jeni and my daughter h has type 2. This group is

quite talkative some days (on some topics) and other days it's pretty low-key.

It's a fantastic group of people and I wouldn't really know what to do w/out

their advice!

BTW -- Why are they doing a muscle biopsy? You can be diagnosed w/ a DNA test

alone in most cases! h was diagnosed 9 1/2 years ago and never had a biopsy!

Hugs

Jen

<laotianrose@...> wrote:

Hi everyone, my name is and I'm 21 and there is a very real

possibility that I have Type 3 Spinal Muscular Atrophy. When I was 11, I was

misdiagnosed with Syringomyelia. I have all of the symptoms and motor skill

problems but my neurologist must do a biopsy to be sure. More than likely, I do

have SMA. I can stand up on my own but with extreme difficulty when I'm sitting

on the floor. My shoulders are not very functional, I have much difficulty in

raising my outstretched arms up to my chest or higher. I'm also quite talkative

so I hope someone else here is too.

Sincerely,

R.

[Guest guest]

Perhaps in most cases, but in my case it's quite elusive, there is a possiblity

that I don't have SMA.... either way I want to know the truth and all other

forms of tests have been performed. MRI, genetic, you name it, things are

showing up but they aren't quite identifiable. At this point, I don't care

about the pain, I want the truth. The neurologist gave me the choice and I

chose biopsy. My mom isn't happy either but she understands. For me, the pain

and the scar is a small price to pay for knowing what I have. My cases may be

one of the few SMA cases that DO need a biopsy, I've been ruled out for all

forms of Dystrophy. I've been ruled out for Syringomyelia which was the

original diagnoses given to my. The neurologist has narrowed it down to

something called myopathy and SMA. If I do have SMA, I know it's not severe

enough to be types 1 or 2; but it also isn't adult onset because it's been

present since I was a toddler.

Jenifer Woody <mom2armybratz@...> wrote: Welcome to the group! I'm

Jeni and my daughter h has type 2. This group is quite talkative some days

(on some topics) and other days it's pretty low-key. It's a fantastic group of

people and I wouldn't really know what to do w/out their advice!

BTW -- Why are they doing a muscle biopsy? You can be diagnosed w/ a DNA test

alone in most cases! h was diagnosed 9 1/2 years ago and never had a biopsy!

Hugs

Jen

<laotianrose@...> wrote:

Hi everyone, my name is and I'm 21 and there is a very real

possibility that I have Type 3 Spinal Muscular Atrophy. When I was 11, I was

misdiagnosed with Syringomyelia. I have all of the symptoms and motor skill

problems but my neurologist must do a biopsy to be sure. More than likely, I do

have SMA. I can stand up on my own but with extreme difficulty when I'm sitting

on the floor. My shoulders are not very functional, I have much difficulty in

raising my outstretched arms up to my chest or higher. I'm also quite talkative

so I hope someone else here is too.

Sincerely,

R.

[Guest guest]

,

I am a mother to an SMA child (Brett), he is 6-1/2 years old and was diagnosed

at 12 months 2 weeks old. Along with bi-pap, the g-tube was the best decision I

ever made for Brett. Brett got his g-tube at 3 years old and although he became

ill with a cold right after surgery, during the first month he gained 5 pounds

and grew several inches. Brett ate very well before the g-tube and still does by

mouth during the day. Our main reason for getting it was to help with illnesses.

When Brett became ill, he would not eat or drink and became dehydrated and would

lose 3-5 lbs per illness and by the time it would take him to gain that weight

back (6-8 months) he caught another cold...it was a vicious cycle for us. I make

sure Brett gets his nutrients/ calories via g-tube at night and he eats for

pleasure during the day...although he does eat breakfast/ lunch/ dinner/ snacks-

but it isn't detrimental that he eats so much.

In my opinion, another reason Brett is doing well is due to the bi-pap, he has

been on it nocturnally since he was 2-1/2. It helps him get a restful sleep and

have more energy for the day. When he first started using it and we didn't make

him wear it every night, there was a huge difference in his energy throughout

the day than when he wore it.

If you have any more questions, I would be glad to help in anyway

possible...again these are just our experiences. You can view some photos of

Brett at his website- although I am a little behind in updating it.

Kristal

Mom to Brett- SMA II- 6 years old

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

HELLO

HI, MY NAME IS JESSICA AND I AM 22 YEARS OLD. ON SEPTEMBER 1, 2003; I GAVE

BIRTH TO A BEAUTIFUL BABY BOY (CARLOS). THE DOCTORS HANDED HIM TO ME AND ASSURED

THAT HE WAS PERFECTLY HEALTHY. ALTHOUGH FOR THE FIRST 9 MONTHS HE WAS FREQUENTLY

SICK HE STILL DEVELOPED NORMALLY. HE LIFT HIS HEAD, HE ROLLED OVER, HE TOOK HIS

FIRST STEPS ... HE WAS SO FULL OF LIFE. SHORTLY AFTER THAT I STARTED TO NOTICE A

CHANGE HE COULD DO THOSE THINGS WITH EASE, HE STARTED TO REGRESS AND IT HURT

BECAUSE ALL THE DOCTORS SAID HE WAS FINE AND IT WAS NORMAL. IN JULY 2005, JUST 2

MONTHS BEFORE HIS BIRTH DATE I FOUND A DOCTOR WHO WOULD LISTEN AND SHORTLY AFTER

THAT I GOT A CALL. THEY TOLD HE HAD SPINAL MUSCULAR ATROPHY TYPE 2 BUT DIDN'T

THINK HE WOULD LEAVE FOR TO MUCH LONGER. HE FIGHTS EVERY DAY TO DO THE THINGS

HIS COUSIN ARE DOING. HIS SMILE AND SPIRIT JUST LIGHT YOU UP. WE HAVE STRUGGLED

AND JUST WHEN WE THOUGHT WE COULD REST MY SON WAS HOSPITALIZED WITH PNEUMONIA IN

APRIL 2006. HIS LUNG

COLLAPSED AND WE HAD TO MAKE A DECISION ABOUT MY SON'S LIFE BUT ON THE DAY WE

WERE GOING TO ALLOW THEM TO PUT A TUBE TO EASE HIS BREATHING ... MY SONS LUNG

STARTED TO RECOVER. HE STILL HAS A LOT OF BREATHING DIFFICULTY AND MORE FEEDING

ISSUES BUT HE WILL BE TURNING 3 THIS SEPTEMBER AND WE ARE LOOKING FOR TO HAVING

A BIG PARTY. I HOPE THAT THIS INFOTRMATION HELPS YOU TO GET TO KNOW A LITTLE

ABOUT ME AND MY FAMILY.

IF ANYONE HAS OR KNOWS A FEEDING TUBE PLEASE TELL ME ABOUT YOUR EXPIERENCE SO

THAT I CAN DECIDE WHETHER OR NOT THIS IS THE ONLY WAY TO GO FOR MY SON.

SINCERELY,

JESSICA AND CARLOS

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