needing some advice

[Guest guest]

Hi all i had my spinal cord stimulator finally put in after i had to

go all around the world to get it approved though my insurance,but i

thought it was gunna be worth it.When i had my temp one done it made

a good bit of my pain go away so we decided to go ahead with the

internal one. It has been about six weeks now and since it is

getting cold and it has been raining here it has not helped much at

all..I was wandering if it was worth getting since i am still in a

good deal of pain on the cold or rainy days? I have to go back to

see my doctor on the 28th and i really dont wanna tell him that i

still have a lot of pain at times.It has really put me in a more

depressed mood. I had this idea that i would be pain free and have a

life again and this is what i get.What else could i do i have done

almost everything i know i can do.Do you think this stimulator will

work better in time or be like this from now on??

Thanks so much for listening and for any advise you could give me...

[Guest guest]

Hi Carol,

I do not want to say a word to them until I've had her longer and can observe her more. I've been around other children in years past that have DS and some very good family friends had their youngest diagnosed with it in the '60s. He was always such a lovable boy. And that smile of his could melt your heart. She may be slightly delayed in sitting up, etc. as just being her and no problem at all, but it's the angle of her eyes, flat forehead. She has sleep issues, but that could be just her or first time parents contributing to that. Her arms & legs seem short when compared to her body length and there seems to be a wider space between her big toe and the next, but I'll have to check my toes now. lol The crease on the palm. Is that in addition to the three we all have or is it one of the three? Her nipples seem far apart to me, but I haven't really checked any other baby for it before so it might be the norm. I'll look more tmorrow. I haven't said a word yet and would probably drop some hints etc. so they could stumble upon it themselves. If she is I just want to sure she gets every bit of support she deserves.

Thank you,

On 4/12/07, Carol in IL <ps1272000@...> wrote:

Hi and welcome to the list. :-)

I am sure you already know that many parents would find the dx of DS a scary one at first and they may not really want to hear of your suspicions. I am not sure how you were planning on broaching the subject with them. You are going to be in 'trouble' either way... the shock factor if the child does have DS, or the fact that parents are going to wonder why you suspected their perfect baby might have a major syndrome that carries with it the developmental delay.

I would not want to be you. :-) You are a brave woman!

The only way to know for sure is with a blood test and karotyping.

Physical characteristics of DS : smaller then general over all, smaller heads in proportion to the rest of the body, shorter arms and legs in proportion to the trunk which is typical size. Nipples are often wider apart, a solid crease running across the palm of the hand. Curved pinky finger, a space between the big and second toe ( very handy for holding books while on your back <g>)

And then the ones most people think of- the beautiful almond eyes, some with grey spots in the iris, tiny low set ears that scream to be nibbled, a somewhat flat face with the cutest pug nose that doesn't hold glasses up very well. :-)

Not everyone has ALL or even MOST of these.... people with DS vary as broadly as the general population with regards to physical characteristics.

I have seen a number of babies who look like they have DS and they don't. I have also seen babes with DS who don't appear to have it.

How is the baby's development ? Course you can't alwasys tell by that either. Lots of babies with DS meet all their milestones, no problem. While other have to work hard and are very late.

Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.

My problem is not how I look. It's how you see me.

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[Guest guest]

,

The one big concern if the child did have DS would be her heart. 40-50% have heart defects that require surgery and some can't be repaired if let go too long. So if you really do suspect it- there could be a time issue here.Some serious defects are not able to be detected just by listening with the stethoscope. Not to put more pressure on you or anything ;-) Hard to believe their ped hasn't noticed anything, but I know it happens!

The crease is one of the three that we all have, but this one goes all the way across the palm with out any breaks in it. Divides the palm in two- again, not all kids have it and some typical people do. )

Ya- I forgot to mention the smile that lights the room!!!! :-)

Carol in IL AIM doihavtasay1Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

Down Syndrome Treatment/

Listen to oldest dd's music http://www.myspace.com/vennamusic

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new cars at Autos.