Re: info on latest meds for ?

[Guest guest]

My daughter is two and has been taking Singulair for fwe months. She has had

very good response to it (one fever since taking it) and no side effects that we

know of. SHe had never had mouth sores though, not one of her symptoms. Sorry I

can't help you with that. They did talk about a few meds available for mouth

sores at the conference but unfortunately I did not pay much attention (like I

said not one of her issues). Trish, Heidi, or anyone else that was there - can

you help her. I know they talked about the folic acid as well. But i believe

there was something else you can get with a prescription. If no on else

remembers it, I can give you the doctors name who discussed it at the

conference. It is Dr. Groh, pediatric rheumatology, Hershey Medical Center. He

is a very kind man and could possibly help you out with the names if the others

on ehre can't remember. Good luck to you!

Lori Rodgers

mom to four daughters including (2) ?PFS

>

> From: " amy00lou " <amy00lou@...>

> Date: 2006/09/17 Sun AM 10:49:50 EDT

>

> Subject: info on latest meds for ?

>

> 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]

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > > >

> > > >

> > > >

> > > > __________________________________________________

> > > >

[Guest guest]

I wrote them down, but the paper is at work. I'll email them tomorrow. Also

the quick dissolve Orapred comes in 10, 15 and 30 mg. I was reading the paper

today.

It sounds like the singulair is working for a lot of kids. I wish the doctors

would get it out in journals soon, so that others would start prescribing it!

Trish

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