Re: Website describing a tethered cord and symptoms

[Guest guest]

>

> the incidence of clubfoot in s.b. is just something i read about a

long time ago when i was

> doing my research. here is a link that i just found quickly:

> http://www.medscape.com/viewarticle/423202_4

> with the following quote:

> " In fact, nearly 90 percent of infants with spina bifida have some

type of foot deformity,

> such as clubfeet, vertical talus deformity, or calcaneo valgus. "

I replied to this message earlier, but it's not showing up!

I agree that the majority of sb kids have a foot deformity.

> i think joy also articulated better what i tried to earlier - when

you are talking about brain

> surgeries and shunts, neurogenic bowel/bladder, associated

medications, latex allergies,

> etc., worrying about the " best " method for treating clubfeet is

something thats not that

> easy to get excited about. indeed, as joy said, lots of people

will choose just to fix it

> surgically and have that one part be over and done with so they

dont have to think about it

> anymore. again, it depends on the level of the s.b. lesion, since

some kids with very low

> lesions can walk pretty well. the others cant and wont, and there

the important thing is

> just to have the foot flat for bracing and weight-bearing.

(argh! It's really irritating me my last post didn't show up!)

I agree with this, that often the important thing is to get the foot

flat. The main thing I'm noticing is with cf you're looking for a

fully-functioning foot with no/as little as possible pain, and with

sb/cf you're trying to achieve a foot that works. Often, depending

on the lesion, there is no sensation in the feet. I still believe

that starting with Ponseti would be the ultimate starting point and

go from there, but obviously some others with sb have a different

perspective.

I've really appreciated the discussion between you and ,

Billy. I think it is a relevant and important one. Thanks both of

you for bringing up important points. I would have loved to put in

more input, but things in my arena just aren't conducive to that at

this point. LOL

Joy

[Guest guest]

>

> Awesome, feels good to be recognized for your effort, I'm sure,

>also helps to understand what they're talking about when they ask

>questions, you kind of know what they're looking for.

It was one of those things where I read and re-read the literature

they gave us and looked things up to double check. When I called, I

just listed what I was seeing, and apparently, I had the terms

right. LOL It was one of those things where it sucked to be right,

but it was also a Good Thing.

>We're fortunate, I guess, so far, but we've had to explore a lot of

>possibilities w/Jana so I've done a lot of research on quite a few

>different things, so I totally understand how hard it can be to

>wrap your head around the different options, side effects, choices,

>etc. (we saw a neurosurgeon about 5 months ago about a venous

>angioma and a cavuum septum pelucidum in her brain, and the

>possibility of surgery, she was tested for a tethered cord, and

>they thought they saw one w/the MRI, then retested and it was

>nothing; she's been tested for about 15 syndromes; had her brain

>checked for damage; thought she had a metabolic disorder, something

>about her organic acids were elevated; right now she has a b-12

>deficiency so not sure why but we see the neuro on wed.; now she's

>aspirating her food so get a swallow study done on friday; always

>something!)

Oh wow, you have had to go through a lot of testing. I hope you get

some answers soon. Grant had a swallow study done, and it wasn't

too bad of a deal. I worried because he wouldn't take a bottle, but

he ended up getting an sufficient amount. It turned out well. We

have to do a sleep study soon because the last one he had showed an

abnormal result. It was done prior to his shunt revision, so I

think his fluid levels were abnormal and causing his chiari to be

problematic. Shhhh, but this whole month of June looks like no

doctors' appointments atm. i hope it stays that way!!

>I guess so far we're lucky they haven't found anything for sure,

>but it'd be nice to be done guessing and just know she's either

>fine or not. And every visit I go in w/a list of questions and

>write down all the tech. terms they throw at me and come home and

>look them up to decipher what the heck I was just told, lol. That's

>awesome though Joy that you've got a handle on some of this stuff.

>It's like a whole new world trying to figure it all out!

Y'know, though, sometimes it's nice to find out something for sure

so you feel like you can attack it! You sound like me. I have

my Brain that I carry around. It's a little notebook I bought at

Target, and it has the questions, the answers I received, the terms

I didn't understand, the procedures I need to look up, all that good

stuff. Trust me, I don't feel like I have a handle on it, but my

brain keeps me a little tiny bit feeling like I might!

I truly hope you receive some answers soon as to the different

things going on with Jana.

Joy

[Guest guest]

Joy,

You're not the only one, I replied to you earlier too and it still

hasn't shown up.

I think I basically just said that I think you did get across the

point you were trying to make, and did a good job explaining as well.

I can see the point of why the CF might just not be forefront of a

parent's mind when they have so many other things going on.

Hope that Grant is doing well, and Rose too!

> >

> > the incidence of clubfoot in s.b. is just something i read about a

> long time ago when i was

> > doing my research. here is a link that i just found quickly:

> > http://www.medscape.com/viewarticle/423202_4

> > with the following quote:

> > " In fact, nearly 90 percent of infants with spina bifida have some

> type of foot deformity,

> > such as clubfeet, vertical talus deformity, or calcaneo valgus. "

>

>

> I replied to this message earlier, but it's not showing up!

>

> I agree that the majority of sb kids have a foot deformity.

>

> > i think joy also articulated better what i tried to earlier - when

> you are talking about brain

> > surgeries and shunts, neurogenic bowel/bladder, associated

> medications, latex allergies,

> > etc., worrying about the " best " method for treating clubfeet is

> something thats not that

> > easy to get excited about. indeed, as joy said, lots of people

> will choose just to fix it

> > surgically and have that one part be over and done with so they

> dont have to think about it

> > anymore. again, it depends on the level of the s.b. lesion, since

> some kids with very low

> > lesions can walk pretty well. the others cant and wont, and there

> the important thing is

> > just to have the foot flat for bracing and weight-bearing.

>

> (argh! It's really irritating me my last post didn't show up!)

>

> I agree with this, that often the important thing is to get the foot

> flat. The main thing I'm noticing is with cf you're looking for a

> fully-functioning foot with no/as little as possible pain, and with

> sb/cf you're trying to achieve a foot that works. Often, depending

> on the lesion, there is no sensation in the feet. I still believe

> that starting with Ponseti would be the ultimate starting point and

> go from there, but obviously some others with sb have a different

> perspective.

>

> I've really appreciated the discussion between you and ,

> Billy. I think it is a relevant and important one. Thanks both of

> you for bringing up important points. I would have loved to put in

> more input, but things in my arena just aren't conducive to that at

> this point. LOL

>

> Joy

>

[Guest guest]

>

> Hey ladies, I am coming in late on this discussion because I have

>been out of town, but just wanted to say how much I relate to

>everything you are going through. We are in the same boat with

>different issues. It feels good to get complements from the

>doctors, but I always feel it is my JOB to know all the medical

>stuff, so I feel kind of sad for other little ones whose parents

>aren't able to give a complete medical history or just don't stay

>updated on info.

I agree! I told Neil I feel like Grant's secretary.

> I did want to tell Marcia that we had our 4th swallow study

>today for . He previously aspirated or had leftover residue

>on all thicknesses, and had a g-tube put in because they thought

>his apnea was due to this, it was seizures. Today, he didn't

>aspirate on the middle thickness, nectar thick. We were so

>excited. So, even if she aspirates, don't worry, they can outgrow

>it!!!

That is wonderful news!

Joy

[Guest guest]

Yes, how is you sweet little man doing Joy?

& Grace

> > >

> > > the incidence of clubfoot in s.b. is just something i read

about a

> > long time ago when i was

> > > doing my research. here is a link that i just found quickly:

> > > http://www.medscape.com/viewarticle/423202_4

> > > with the following quote:

> > > " In fact, nearly 90 percent of infants with spina bifida have

some

> > type of foot deformity,

> > > such as clubfeet, vertical talus deformity, or calcaneo

valgus. "

> >

> >

> > I replied to this message earlier, but it's not showing up!

> >

> > I agree that the majority of sb kids have a foot deformity.

> >

> > > i think joy also articulated better what i tried to earlier -

when

> > you are talking about brain

> > > surgeries and shunts, neurogenic bowel/bladder, associated

> > medications, latex allergies,

> > > etc., worrying about the " best " method for treating clubfeet is

> > something thats not that

> > > easy to get excited about. indeed, as joy said, lots of people

> > will choose just to fix it

> > > surgically and have that one part be over and done with so they

> > dont have to think about it

> > > anymore. again, it depends on the level of the s.b. lesion,

since

> > some kids with very low

> > > lesions can walk pretty well. the others cant and wont, and

there

> > the important thing is

> > > just to have the foot flat for bracing and weight-bearing.

> >

> > (argh! It's really irritating me my last post didn't show up!)

> >

> > I agree with this, that often the important thing is to get the

foot

> > flat. The main thing I'm noticing is with cf you're looking for

a

> > fully-functioning foot with no/as little as possible pain, and

with

> > sb/cf you're trying to achieve a foot that works. Often,

depending

> > on the lesion, there is no sensation in the feet. I still believe

> > that starting with Ponseti would be the ultimate starting point

and

> > go from there, but obviously some others with sb have a different

> > perspective.

> >

> > I've really appreciated the discussion between you and ,

> > Billy. I think it is a relevant and important one. Thanks both

of

> > you for bringing up important points. I would have loved to put

in

> > more input, but things in my arena just aren't conducive to that

at

> > this point. LOL

> >

> > Joy

> >

>