Re: Austin Update and ?'s

July 6, 2005

Due Process. Note my address if you go this route. We did it several

times, eventually winding up in the federal court of appeals - and winning.

It is a hard, hard road, but it's how we got 's needs addressed.

Where do you live?

When we first headed down the d.p. road, I had only a few folks to

contact during the rough moments. Please know that I'll be there for you.

Martha

July 6, 2005

Jacque,

I am sorry I am no help on the sinus stuff, I am concerned a lot of our kids

have chronic sinus infections, routinely sedating for x-rays and CT scans to

dx on a kid like Dylan, doesn't sound like a good idea, but over-treating is

not good either. We have used XLEAR nasal wash and it really seemed to help

Dylan.

On the due process, all I can say is YUCK and we are rooting for you.

Kim

> Hi everyone! We are getting excited as the conference date nears! Can't wait

> to see everyone we've met over the years and meet the families we haven't.

>

> We've been doing some new medical appointments for Austin lately. We recently

> saw a ped. pulmonologist. We had a sinus CT done and sent over many x-rays of

> Austin's lungs for her to review. CT scan showed a sinus infection - this was

> the first CT since he was an infant -- I am now wondering how many sinus

> infections have been present without our knowledge!! We also have an upper GI

> scheduled next week to see what is happening around his Nissan Fundo. In

> August, we will do a pH probe (24 hour hospital stay) and a sleep study (to

> rule out any apnea). Austin has been sick on and off since Feb. of this year,

> so we are branching out to see what might be going on.

>

> If anyone has experience with chronic/severe sinusitus or reflux after a

> Nissan fundoplicaiton, your feedback/stories would be greatly appreciated.

>

> On school issues - looks like we are heading to due process. We are talking

> with the state's P & A about our options and they seem to want to go straight to

> due process and skip all the middle stuff. I don't believe we will make any

> progress with this group unless they are forced, so that is most likely what

> we will be doing after the conference.

>

> Hope everyone is doing well and can't wait to see you in Miami!!

>

> Jacque

> Austin's mom (10.5, CHaRgE'r)

>

July 6, 2005

Jacque,

I feel for you. Both from the medical and the educational side. I

don't know what your reasons for going to due process are, but if

there is any way to resolve the issues with mediation, I would try it.

We went to due process over 's education. Our school was

trying so hard to NOT educate her as they felt because she had CHARGE

she was severe/profoundly retarded and there was no need to educate

someone that retarded. This was even after her hearing loss was

identified, they still insisted on teaching her as a hearing child.

They would take her hearing aids away from her and then complain that

she was violent and couldn't learn. We didn't go to due process until

I went to enroll her one year and they refused to let me as they had

taken it upon themselves to enroll her in a vocational program in

another town. At that point, we did try mediation but still ended up

doing it the hard way. It was ugly, draining but rewarding for

in the end. Our district did get her out in the end, but that

hostile environment was not the place for her anymore. If you do have

to take it to that level, I wish you the best. If I can help in any

way, feel free to contact me. I think Martha went this route a couple

of times and she would be a good one to talk to also.

As for the reflux. had a Dorr-Nissen fundoplication. This

version was not a complete wrap. They had intended to do a full

Nissen but she went into cardiac arrest twice during the surgery and

they had to do the Dorr-Nissen version. All in all, her fundo was

tight and intact. But, she still tended to spit up quite a bit. Our

doctors dismissed the formula coming out of her nose and mouth for

years. We did all the drugs and nothing seemed to work for her. I

got the " that's just " speech as the diagnosis. When she was

13, I finally found a nurse practicioner that heard what I had to say

and even though Jess continued to pass all of the reflux test she

believed Jess was refluxing. At this point, she was also spitting up

blood. Instead of doing the upper GI's and things, they scoped her.

They found that the silent (or in my eyes not so silent) reflux led to

permanent damage to her esophagus. It had killed the motility in her

esophagus and it was the texture of raw hamburger. We ended up having

to take the radical approach and having 's esophagus

disconnected from her stomach and it is now reconnected at the

jejunum. She can no longer reflux at all. She continues and will

always be g-tube fed.

I don't tell you that to scare you. Jess' was an extreme case of

undiagnosed GERD. But, I tell you this in case you do feel it is

reflux and Austin passes all of the tests...don't let it go. If and

when you are satisfied with the doctors answers can you let it go. I

felt that the doctors were not right but who was I to argue with them.

They had the degree. Well, their degree led to permanent damage to

and a couple of major surgeries that she would not have had to

undergo if diagnosed properly.

I wish you the best and remember if you need an ear...let me know.

Sheryl

Mom to Jess 18

July 6, 2005

Jacque,

Patty has always had difficulties with sinus infections. She too didn't show

signs of them. They give her headaches and they also lead to ear infections.

When she had a CT scan on her sinus they found the left to be missing one,

and was irregular. Makes sense with her left coanal atresia. No one knew it

though until the scan.

Patty has learned some cool stuff. She has a submucus cleft and has learned

to kind of suck the stuff out of her sinus through her palate. It sounds

gross and it is, but it helps. She does it privately now. Oh, and she spits it

out into a napkin. UCK but it helps. When she is sucking down more often we

know an ear infection is coming!

I am so sorry to hear of your need to go to due process but I am sadly not

surprised. That's another question that should probably be asked of parents. I

hope you get information to help you through this at the conference?

Martha-jump on in!

Bonnie, Mom to a 22, Patty CHARGE 20, and wife to

July 6, 2005

We use " Sinus Rinse " by NeilMed EVERYDAY with Kennedy and most days 2x/day -

morning & night. An indescribably incredible amount of " gunk " comes out each

time, lessening the need for ongoing runniness and wiping throughout the day...

It ain't perfect but it works...

Kim Lauger wrote: