HELP!

October 10, 2000

Dawn,

Will your insurance cover Kennedy Krieger at s Hopkins? If so, get

the baby in asap!! They have an excellent Down syndrome clinic. I took my

baby there at 8 weeks and at 7 years, we still go once a year.

Depends on your insurance. I haven't had any problems with coverage. I

know that federal employees dont have to worry about the pre-existing

clause. An option to consider is having your husband stay home with the

baby?!?!?!

If you stay home, you could consider just your hubby's income for

SSI..however, even that may not qualify due to being over the income

guidelines. I'm not sure what is available in land. If you get into

Kennedy Krieger, your first appointment should include a social worker who

can tell you what is available.

What part of Balitmore do you live in?

October 11, 2000

Just keep practicing with Hudson... I had trouble with the start of

breastfeeding with but with constant work, it has been

successful.... make sure your breasts are not engorged when you begin trying

.... lay down in bed and try the side to side position... contact LLL... they

have a pamphlet regarding nursing a child with Down Syndrome that may give

you a some hints.... by g tube do you mean a nasal gastric tube or on that

has been surgically implanted into his stomach??

I am not sure about land, but here in PA is eligible for

medical assistance regardless of our income and we are not rich but we are

over the limit... also, with a medical assistance card, is eligible

for WIC, and since I breastfeed so am I.... also, a lot of insurances now a

days can not keep people out during open enrollment for preexisting

conditions.... also, no matter how bad your hubby's insurance is, under

cobra, his company has to allow him to pick you and Hudson up when you loose

yours.... even if it is not open enrollment... it is called change of life

event... and it is probably less then the $686 you would have to pay

Listen to ... it sounds like she knows a great resource near you.... or

you can consider other hospitals near you.... go to the blue pages in your

phone book and look up social services... they can give you great starts on

where to look... also, look up Mental Health/ Mental Retardation services....

depending on what they call the group in land, they are the ones that

will provide early intervention... you will be assigned a case manager and

they can help steer you through these early years.... Hudson sounds like he

needs physical therapy... here in PA, it is provided by the early

intervention group and we do not pay a cent... they will go where ever the

baby is, daycare, hospital, home... it is up to the parent...

Keep pumping if you can not breast feed right now.... it will happen with the

right support... I had to pump for 5 weeks straight because of surgeries and

complications that my daughter experienced between 7 and 12 weeks of life...

she is about 4.5 months now and nurses a storm.... get in touch with a on

line breast feeding group... they may be able to help you here... they helped

me....

write me anytime.... I have been where you are recently and now how it is

October 11, 2000

Welcome Dawn and your new family member. I am happy you have found this list

in such a short time. I live in Canada but most people are from the US here

so I am sure you'll get lots of good answers to your questions.

Congratulations on your precious baby boy,

Sherry (mom to Kendra 10ds, Alyssa 6, 5 autism)

help!

>I am a brand new mom of two weeks of a beautiful boy named Hudson who

>has Downs. As you can imagine I am a bit overwhelmed and have lots of

>questions. Please feel free to e-mail me directly with answers.

>

>1- Hudson is having difficulty sucking and swallowing. Any tricks? He is

>on a G tube and is not ready to take anything by mouth. He sucked his

>thumb in the womb but was a hypoxic at birth and the doctors think this

>may interfer with these reflexes. Any thoughts? I am tickling the roof

>of his mouth and top of the tongue. He does not respond to the rooting

>reflex ( stroking the cheek from the corner of the mouth).

>

>2- I want to stay home with my son but my mother says that I can not

>quit because of my insurance. She says that he has a preexisiting

>condition and we could not switch insurance companies. If I take leave,

>they will let me keep my insurance at 686.00 per month. How could I ever

>afford to stay home? My husband's insurance is expensive and horrible!

>What can one do? We are a middle class family who are married. Is this a

>crime?

>

>3- Am I entitled to monies from the government?

>

>Thanks for your help. I feel like a rock in a hard place and so far,

>noone has any answers.

>

>Dawn C. from Baltimore

>

October 11, 2000

Hi Dawn,

Welcome and congratulations. This list will help you in so many ways. I

wish I'd had it when my son was born!

I can't help you with all your questions, but I think I can help you with

the insurance one. I am a former benefits specialist, so I am a little

rusty, but I seem to remember a law being passed (HIPPA) that affected

qualified plans being allowed to have pre-existing conditions. I think that

if you can prove that you had continuous healthcare coverage, that a health

plan cannot impose restrictions on pre-existing conditions. I know there

are some lawyers in ...so please correct me if I am way off!

Again, I am rusty. So I urge you so consult the medical plan booklet for

your husband's medical insurance plan, or talk to the person who handles

benefits for that company, or contact the new insurance company...they

should know if there are pre-existing condition restrictions.

Also, your son should be eligible for Medicaid based on his diagnosis. Here

in Pennsylvania it is automatic.

Good luck, I am sure you will get lots of answer from everyone on this

group.

R.

Mom to (6, ds) and Grace (3)

October 11, 2000

In a message dated 10/10/00 8:44:00 PM Central Daylight Time,

dcervantes@... writes:

> I am a brand new mom of two weeks of a beautiful boy named Hudson who

> has Downs. As you can imagine I am a bit overwhelmed and have lots of

> questions. Please feel free to e-mail me directly with answers.

HI

I see all have covered the bases with you so I'm here to welcome you to

this wonderful world of DS. It does seem overwhelming right now but ooooh my

gosh you will be a new woman with this child. My whole family made changes

for the better when Sara was born and my outlook on life is soooo much better

now all of my built up rebellion gets used on the school systems now lol

Heehee I'm saying this with glee in my heart, Sara came home with an awesome

note from her teacher bragging on GREAT behaviors!!!!!!!

Kathy mom to Sara 8..............lucky you didnt catch me two weeks ago lol

February 20, 2002

In a message dated 2/20/2002 11:23:06 AM Eastern Standard Time,

dreameraz2000@... writes:

<< Does anybody know what the best way to find your pulse on your wirst? >>

Hi ,

Let me know if these pictures help.

Dotsie

http://healthalternative.freeyellow.com/bobbeck.htm

February 21, 2002

Use your middle finger for finding it and try some light exercise just

before - something small like just going up a flight of stairs. The thumb

side pulse is usually easier for one to find. For the pinky side pulse, go

in further on your wrist - maybe an inch. It seems to be easier to find near

the crease of your wrist, then follow that line down.

Help!

> Hey Group!

> I need help,

> Does anybody know what the best way to find your pulse on your wirst?

> I don't want to do it wrong or maybe misplace the electrodes and not

> get get a good treatment.

>

> If anybody can help, please let me know.

>

> Thanks

>

> D

>

October 6, 2003

I had exactly the same experience 6 years ago. Prior to surgery for

scoliosis I only took Tylenol and worked 40-50 hours a week. After surgery I

was in

worse shape and ended up on Oxycontin, Flexeril, and Celebrex, and also found a

pain specialist who sent me through physical therapy. This gave me some

relief, but I was eventually forced to reduce my working hours to 30 per week,

but

was lucky - very lucky - to work in a place where I could keep my benefits

with the 30-hour work-week schedule.

I'm sorry to say that eventually I was told that I had to have revision

surgery because the instrumentation was falling apart. I'm glad I did because I

feel much better and am off most medication except Tylenol.

I understand how discouraged you probably feel. I expected to come out of

the surgery taller and feeling better and instead it was just the opposite.

It's disturbing to find that there are so many surgeons performing complex

scoliosis surgery where they hurt the patients more than they help. Does your

surgeon have a good reputation and you are just a fluke? I didn't check my guy

out enough and when I met other patients of his, they were also bent forward as

I was.

I think you'll find a lot of support on this site. I wish I could offer you

more. Is there any chance you could have revision surgery within the next few

years from someone well-qualified to correct the problems from your original

surgery?

Hang in there. You'll find a lot of people on this site who've been in the

same situation.

October 6, 2003

Hi, Delores.

Welcome. I don't really know of any better place for you, as a scoliosis

patient with iatrogenic flatback, though there is another flatback forum called

Salvaged Sisters of Scoliosis.

I'm very sorry to hear that your initial fusion left you worse-off than before.

Why is surgery not an option???? Did your surgeon tell you that, or are you

just disgusted with the whole business (not an unnatural reaction!)? Have you

sought a second opinion?

We're cautious around here about prescribing exercises, etc. for each other, as

we're not qualified, even if we did know all about your case. Only a physical

therapist should be doing that, and many of us have reservations about most of

them! The fused spine is a very special piece of equipment and requires

specialized knowledge on the part of doctor and therapist alike.

My case is obviously different from yours, but I find that I can use my common

sense about what exercises I can tolerate, and that keeping my abdominal muscles

strong is very important to how my back feels. For me swimming is very good,

but I don't know for sure that it would be for you.

I wish you all the best in finding the help you need.

Sharon in Southern New Hampshire

Congenital scoliosis w/ spina bifida and other vertebral anomalies

1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

Help!

i dont think i am in the right place. but if someone here can put me

in the right direction i sure would appreciate it. i had scoliosis

surgery last june. so i dont have the old harrington rods. but i am

now suffering from flat back syndrome. i am trying to find some of

the exercises that might help. if anyone here knows where i can go on

the net please let me know. surgery is not an option. i look and feel

worse than i did before my operation. sure do thank you for any help.

October 7, 2003

the doctor i went to is in dallas and has a great reputation, so maybe

i am a fluke. when i first came home from the hospital i would look

at myself in the mirror and it seemed like i was straighter. i was so

happy. but 1 year later i have the flat back syndrome. i didnt even

know about this until i was doing reseaarch on exercises for my back

and found out about it. i cant work. the normal things i did around

the house i cant do anymore. when i clean i have to sit down about

every 30 minutes. we have horses and it just about kills me that i

cant ride anymore.

as for more surgery i have uncontrollable high blood pressure so most

doctors wont touch me. when i had the original back surgery my kidneys

shut down and they had to do the second part of the operation a week

later. i cant take clebrex because of my kidneys so i am living on

aspirin. i did take oxycontin and all of them but made myself stop.

fear of addiction.

i have applied for disibility and of course have been turned down. it

just makes me so angry because as you put it no one knows how we feel.

i hate going out in public because of the way i look. im glad i

found this group. it gives me something to look forward to everyday.

> Hi, Delores.

>

> Welcome. I don't really know of any better place for you, as a

scoliosis patient with iatrogenic flatback, though there is another

flatback forum called Salvaged Sisters of Scoliosis.

>

> I'm very sorry to hear that your initial fusion left you worse-off

than before. Why is surgery not an option???? Did your surgeon tell

you that, or are you just disgusted with the whole business (not an

unnatural reaction!)? Have you sought a second opinion?

>

> We're cautious around here about prescribing exercises, etc. for

each other, as we're not qualified, even if we did know all about your

case. Only a physical therapist should be doing that, and many of us

have reservations about most of them! The fused spine is a very

special piece of equipment and requires specialized knowledge on the

part of doctor and therapist alike.

>

> My case is obviously different from yours, but I find that I can use

my common sense about what exercises I can tolerate, and that keeping

my abdominal muscles strong is very important to how my back feels.

For me swimming is very good, but I don't know for sure that it would

be for you.

>

> I wish you all the best in finding the help you need.

>

> Sharon in Southern New Hampshire

>

> Congenital scoliosis w/ spina bifida and other vertebral anomalies

>

> 1971 Harrington rod fusion, T5-L4, flatback, L5-S1 degeneration, etc.

>

> Help!

>

> i dont think i am in the right place. but if someone here can put me

> in the right direction i sure would appreciate it. i had scoliosis

> surgery last june. so i dont have the old harrington rods. but i am

> now suffering from flat back syndrome. i am trying to find some of

> the exercises that might help. if anyone here knows where i can go on

> the net please let me know. surgery is not an option. i look and feel

> worse than i did before my operation. sure do thank you for any help.

>

October 7, 2003

That sounds like a good reason to avoid surgery if possible. Pain control and

Disability turn-down issues are frequent topics of discussion here, so you've

certainly found an understanding bunch to share this stuff with.

All I can really add is, don't give up on getting the financial assistance and

pain control you need. There's a reason for the word " feisty " in our name.

Sharon

Re: Help!