info on latest meds for ?

[Guest guest]

I was wondering if there were other meds talked about at the

conference besides, cimetidine & prednisone & tonsil removal? My

son is Kaden & I just barley posted my little story. His mouth

sores are so terrible that I can barely get him to drink anything let

alone eat. I'm hoping he's not dehydrated. He's been drinking sips of

gatorade & so I think he's ok still.

Anyway, we are on day 4 & he's still in so much pain. The fevers are

gone but the mouth sores are horrible still. He hasn't really slept

in 3 nights & neither have we. We are at a loss for what to do to

help his mouth. we've tried triaminic sore throat spray & I am going

to the store today to get some anbesol to maybe help numb his sores

on his tongue. His speech is slurred because the sores are so bad he

can barely talk. Anyway, I just wondered if you had any info on meds

that were talked about at the conference?

Thanks!

Amy (kaden's mom)

> > >

> > > >

> > > > > Well.... what can I say. The conference was very

> > > > informative. We had a wonderful presenter on HIDS

> > > > that gave some great insight on how in his center

> > > > they have done wonderful things with treatment and

> > > > gene isolation. His name is Dr. Morton and is at the

> > > > Center for Special Children and he works with the

> > > > Amish and Mennonite populations in Lancaster PA. He

> > > > does wonderful things and had a huge amount of

> > > > knowledge on genetics. Then a docotr form NIH

> > > > presented on CIASI (I believe) and NOMID. Super

> > > > informative on what they are doing for this

> > > > population at NIH with diagnosis and treatment. Then

> > > > Dr. Groh, pediatric rheumatologist at Hershey Med

> > > > Center talked about and a variety of diagnosis

> > > > and treatment options. Then he also talked about

> > > > fever and pain management with the various issues

> > > > that affect all PFS - abdominal pain, joint pain,

> > > > mouth sores, etc. A LOT of info on the latest meds

> > > > and tons of time for questions I thought. Then Lori

> > > > Todaro spoke about her experiences and the

> > > > importance of family and positive attitude. Lastly

> > > > they had someone to speak on school issues and 504

> > > > plans vs IEPs and other school issues. There was a

> > > > really nice lunch and they had a nice set-up for the

> > > > children that went as well (My two daughters that

> > > > went had a great time!) The most priceless event is

> > > > getting to meet others in the same boat and talk our

> > > > " lingo " with other moms and dads and not have to

> > > > expain myself a thousand times. I did not go to the

> > > > pizza party they had for everyone afterward (I wish

> > > > I could have it would have been fun as well I am

> > > > sure)

> > > > Lori and her crew did a wonderful job!!!!!!!! The

> > > > cost was super low and so worth it!!! I hope those

> > > > who traveled a distance feel the same way. I hope

> > > > that helps. If anyone has any more specific

> > > > questions - fire away. I make no promises though.

> > > > This was my first time back in a lecture hall in a

> > > > number of years. I don't know if I could take a quiz

> > > > on what I learned and pass. LOL.

> > > >

> > > > Lori Rodgers

> > > > mom to four daughter including (2) ?PFS

> > > > > From: " Klooster " <andreaklooster@>

> > > > > Date: 2006/09/09 Sat PM 07:29:28 EDT

> > > > >

> > > > > Subject: Re: We are heading to the

> > > > Conference

> > > > >

> > > > > We would love to hear about the conference from

> > > > those of you who were

> > > > > there...

> > > > >

> > > > > -

> > > > >

> > > > >

> > > > > [Non-text portions of this message have been

> > > > removed]

> > > > >

> > > > >

> > > > >

> > > >

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> > >

> > >

> > > __________________________________________________

> > >