Questions

[Guest guest]

Sharon, Yes, you may have a flare without red ears. I have never had an ugly

sound, but I have had the pain inside. You may also have a flare with a

normal sed rate. About Hashimoto Thyroiditis, I think I just sent a post

from H. about this. I'm not sure, I will look. I don't know for sure

if they are connected. Don't let this get out of control You have enough

going on. Please call the dr if you have to.. don't wait.

hugs

<<

Can you have a flare without your ear being red and swollen?? Can the flare

be inside the ear with pain and that ugly sound? It seems like my ear is

trying to turn red but there's a lot of " stuff " going on inside.

I also have Hashimoto Thyroiditis. Is this connected to all of the other AI

diseases I have? Thanks in advance.

Hugs,

Sharon >>

[Guest guest]

I am still so confused about this disease - my son was diagnosed in

august with CP. He had acute pancreatitis in 2000, and several

episodes in 2001. He spent several months in and out of the

hospital. He had a small pseudocyst. He has a large amount of

atrophy of his pancreas. The tail portion was not involved. He had

many complications - pneumonia, kidney failure, etc. Eventually, he

was released on TPN and made a full recovery that lasted until this

year. His enzymes were not elevated but they said it is because of

the chronic pancreatitis. He takes 8 enzymes at each meal and 2

with any snack. He is beginning to gain weight again. He still has

a lot of pain that he controls with long lasting Oxycontin and in

between he takes Vicodin. He takes Elavil at night. He takes

Prilosec. HE takes stool softeners and milk of magnesia for

constipation. He is having a MRCP on the l7th and is having genetic

testing soon. My question is the pain. He feels he may have to live

with this being controlled with medication and may never be pain free

without it. He also have 5 nerve blocks done in 2001 for the pain

which worked once for about two weeks and the last one left him with

back pain so severe that he will never do that again. His doctors

told him they don't do transplants. His glucose levels have been

good. Does this sound like the normal progression of this disease?

He was not a drinker either. They don't know why he got this. His

dad had one acute episode of pancreatitis in his 20s, but never

again. Any thoughts about the pain and the medication and his future

would be appreciated. Thanks. Worried mother

[Guest guest]

Hello - First of all, if MY OD wasn't providing any info

about my case, I would be calling my OMS to find out what my status

is. There is a possibility that your OD really doesn't know when you

will be having your surgery because he hasn't been providing

progress reports to your OS on a regular basis. Or, your OS isn't

communicating with your OD. In any case, I'd be calling the OS, or

emailing him with your very own progress report and questions. I'm

pre-op (have had braces for just ten weeks) so I may not have the

best answers to your four questions.: 1) My OD says I will have my

braces for up to six months post-op. 2) My OMS will see me once a

week for the first four to six weeks after surgery - after that, I

don't know, but probably once a month. 3) Yes, the braces are left

on during and after surgery because they need to wire the splint

into your mouth using your braces, and if you are getting bands too,

these are attached to your braces with hooks. 4) Wiring is at the

discretion of your OS - he may not wire you shut, but use a splint

and bands instead. Wiring depends on the procedures being done, your

surgeon's preferences, etc. and you should discuss this with him.

Eating is done by many methods, including Zip n Squeeze bags,

syringes, baby forks and spoons, and straws. The food you will be

eating will be in liquid form for the first four weeks. Since you

are having upper and lower surgeries, you will be having an NG (naso-

gastric) tube inserted while you are under anesthesia to aspirate

any blood that makes it down to your stomach. This same tube will

also help to prevent you from vomiting while in surgery, although

sometimes vomiting occurs post-op anyhow. Don't worry - the nurses

will help if this happens. If you need to vomit after you leave the

hospital, you are told how to cut the wires or bands, and it usually

comes out thru the spaces in your teeth. Don't worry about any of

this, okay? Hope my answers to your questions helped. Take care! ~~~

Diane (Idaho)-- In orthognathicsurgerysupport ,

Kluever <jakluever@y...> wrote:

>

> Hello Everyone,

>

> I have been in braces for about 18 mos. I had my first consult

with a oral surgeon right before I got my braces on and I haven't

seen him since. My OD keeps saying I am almost there and then I can

go in and see the oral surgeon again. During my consult the OS told

me that I would have to have upper and lower, have my upper jaw

widened and a chin lift. I already had this pre-approved by my

insurance company. I keeping asking my orthodontist when is this

going to happen and he never really has an answer for me. But here

are my questions if anyone is able to answer them that would be

great because it would put me at some ease.

>

> 1. How long (on average) do you have to wear braces after the

surgery?

> 2. How often do you have to go back for check-ups after the

surgery?

> 3. Do they leave your braces on during the surgery?

> 4. How are you wired, How do you eat or throw up for that matter?

>

> Thanks

>

>

>

> ---------------------------------

> Yahoo! Music Unlimited - Access over 1 million songs. Try it free.

>

>

[Guest guest]

Kim,

YIKES, what do you do then? Luckily for me, I don't run into that problem

because Dr. H is the only endo we see and thankfully, 's ped loves getting

her reports from us and fully agrees with her. I think he would actually like

to really know her. Hopefully if he runs into more kids in the practice he will

send them to her.

The only thing I can think of is to get a third opinion. It's so hard

because as much as we all love and trust Dr. H you also feel sometimes that you

need another opinion. I'm thinking of you and . By the way, it was very

nice to speak with you while you were in NY and getting to know you and your

family.

B

and Kelli

Kacey171 wrote:

You would think today would be a good day for me since we are finally home,

but of

course, things are never that easy.... Dr. H made some recommendations for

that

I posed to some of his doctors down here & didn't get good results.

First, I spoke with the orthopedic doctor & he disagrees with everything Dr. H

suggested or

questioned. I suspected this would happen though.

Then, I faxed her notes to 's local endo. After reading the notes, he

called me &

said that if we followed Dr. H's treatment plan, he would no longer see

as a

patient. She recommended putting on Oxandrin, an anabolic steroid, to

help him

grow while keeping him on GH, Lupron, & Aromasin. According to Dr. H, this

would give

him some pubertal symptoms, but not advance the bone age on the low dose she is

prescribing. Because he would stay on Lupron & Aromasin, she says he would not

actually

have pubertal hormone levels. 's local endo believes that this could

still advance

the bone age, and giving him a steroid could worsen his insulin resistance

problems. He

says he knows of no endocrinologist here who would treat a RSS patient with

this. I am

scared to death that no matter what I choose for that it will be the

wrong thing.

It's one thing if something doesn't help him, but it's another if it can be

detrimental to

him. We have been seeing Dr. H every 6 months, and I don't know whether we can

afford

to travel there every 3 months if I end up without a local endo to prescribe

everything.

Dr. H claims that she has prescribed Oxandrin before to a few patients who had

similar

poor growth patterns like even on GH. If this is you, I would greatly

appreciate

knowing how Oxandrin worked for your child, if it affected bone age, and if

there were any

negative side effects. I was planning to fill the prescription tomorrow, but

now I am a

nervous wreck....

Kim C.

[Guest guest]

Kim - you are definitely in a cunundrum and I can't imagine being in

your position - but, I have a suggestion or two for you to

consider. First, would your local endo be willing to contact Dr. H

and discuss his concerns with the protocol and find out what Dr. H's

success rates are with her treatment plan? Did you ask him what his

specific concerns are - other than the fact that he just " won't do

it " - could he explain in more detail why - and then maybe you could

approach Dr. H via a letter with the details? I wouldn't worry

about stepping on anyone's toes. You know - it's so important that

you get the answers you need - it's your son and this is how I

approach everything and it works. Also, did your local Endo make

his recommendations on things and what he thought would work? If

so, maybe you could bounce that off Dr. H and see what she thinks.

I'm sorry I don't have anything better than that. I'll give it some

more thought and maybe try to e-mail you directly.

Thinking of you Kim. Feel free to contact me via e-mail too if you

need to. I enjoyed our conversation so much over the phone and you

really are an intelligent woman and you will make the right

decisions - you have made such great strides. Best of luck to you.

- H

>

> You would think today would be a good day for me since we are

finally home, but of

> course, things are never that easy.... Dr. H made some

recommendations for that

> I posed to some of his doctors down here & didn't get good results.

>

> First, I spoke with the orthopedic doctor & he disagrees with

everything Dr. H suggested or

> questioned. I suspected this would happen though.

>

> Then, I faxed her notes to 's local endo. After reading

the notes, he called me &

> said that if we followed Dr. H's treatment plan, he would no

longer see as a

> patient. She recommended putting on Oxandrin, an anabolic

steroid, to help him

> grow while keeping him on GH, Lupron, & Aromasin. According to

Dr. H, this would give

> him some pubertal symptoms, but not advance the bone age on the

low dose she is

> prescribing. Because he would stay on Lupron & Aromasin, she says

he would not actually

> have pubertal hormone levels. 's local endo believes that

this could still advance

> the bone age, and giving him a steroid could worsen his insulin

resistance problems. He

> says he knows of no endocrinologist here who would treat a RSS

patient with this. I am

> scared to death that no matter what I choose for that it

will be the wrong thing.

> It's one thing if something doesn't help him, but it's another if

it can be detrimental to

> him. We have been seeing Dr. H every 6 months, and I don't know

whether we can afford

> to travel there every 3 months if I end up without a local endo to

prescribe everything.

>

> Dr. H claims that she has prescribed Oxandrin before to a few

patients who had similar

> poor growth patterns like even on GH. If this is you, I

would greatly appreciate

> knowing how Oxandrin worked for your child, if it affected bone

age, and if there were any

> negative side effects. I was planning to fill the prescription

tomorrow, but now I am a

> nervous wreck....

>

> Kim C.

>