Re: Update on Coralie - Marie-pia

[Guest guest]

Marie-pia,

My thoughts and prayers are with you and Coralie, as well as

and Ben. I'm so very sorry that your family has to deal with so much

of this disease, and I hope this team of doctors works well to find

the solution to keep Coralie pain free and out of the hospital.

She'll never be " normal " because she's above normal in spirit and

wisdom! Please pass that on to her. Take care!

> Here is a post from Marie-Pia. Please keep her and her children in

your

> thoughts and prayers.

>

> ,

> As i explain to , Coralie is back to Hospital for the weekend.

> She met a new team of dr.

> The chief of this team received us on thursday.He explained that he

knew RP

> even he never had patient with it.

> He said the best for Rpers' is to prevent the flare.So AINS wasn't

the best.

> The best is pred and imuran in the rignt dose.

> This is not benign drug but not so bad that a lot of patients and

DRS. pretend

> So Coralie begin first with hignt dose of PRED. still the flare

stop if the

> flare 'll not stop

> she' ll have to take both imuran and pred.

> The hardest is to find the right dose of each drug.

> Then after one year without flare she 'll decrease the dose .

> The same for Ben and nicolas.

> But less than Coralie because they 're not so ill than Coralie.

> Coralie was really hopefully.

> She say 'i'll be a normal teenager, I'll able to go to school each

day ,

> practise sport , i can beleive it "

> I'm a bit afraid of 2 thinks first it doesn't work enough second

the side

> effects of this médications.

> Coralie'll back to the hospital on wednesday.

>

> A great news for all of us.

> The DRS; said it 's a great chance for all the RPers' that 3 of my

children

> are ills.It 'll help the search. I'm not sure we're a lucky family

LOL.

> As i ask karen, help me to make serene again this médications.

> Coralie started yesterday the hight dose of pred.BEn today and

Nicolas 'll

> start in few time (he 'll wait and see first, he's got 19 y. so

i'll choose ).

>

> Amitiés

> Marie-pia