Re: 8 y/o son w/ PSC -

[Guest guest]

Dear Ami;

Thanks for your explanation of all the conditions that has. This

is quite a collection, and I marvel at his bravery and your strength!

With regard to itching, my son did not get much relief from

hydroxyzine, but has had excellent control of itching with rifampin.

Because this drug can interfere with metabolism of other drugs, such

as corticosteroids, 's doctors might be hesitant to try this?

Best regards,

Dave

(father of (20); PSC 07/03; UC 08/03)

[Guest guest]

>>>So, that's . He's also a

caring, loving, wonderful, super smart sweet brave kid. And I love

him dearly.

Ami<<<

Oh Ami (((((((((((((((HUGS))))))))))))))))))

It breaks my heart to read all of the problems is having! My

daughter is going to be eight in April. She doesn’t have near the

problems that your has, but I totally understand the child behind the

disease! My is such a vibrant, energetic person inside, it pains me so

when she gets lethargic or those tummy aches! As mommies we must deal with so

much...and it just stinks that a kiss and a hug isn’t going to fix this.

I have no advice as I am new at this too...but maybe you can take comfort

in knowing you aren’t totally alone.

My ’s doctors think it is all related to an auto immune thing

as well. We are waiting right now on some blood tests they are running because

they want to start a new drug called 6mp ...I so freaked out at first...but

this great group here calmed me down about it, as many of them are on this same

drug.

I hope they can give you the comfort that they gave me! )

Beth Hunt

Mom to : seven years old PSC (8/04) UC

(2/06)

" But without faith it is impossible to please him: for he

that cometh to God must believe that he is, and that he is a rewarder of them

that diligently seek him. " Hebrews 11:6

[Guest guest]

What exactly is this drug? And what type of cases do they give it for? I'm sorry to hear your little girl has to go through this, too. I'm sorry any of our children do. It's so frustrating! But I'm glad to have finally found people who know what I'm talking about with it and who can relate to this particular thing. Please give your a hug from me!! AmiBeth Hunt wrote: >>>So, that's . He's also a caring, loving, wonderful, super smart sweet brave kid. And I love him dearly.

Ami<<< Oh Ami (((((((((((((((HUGS)))))))))))))))))) It breaks my heart to read all of the problems is having! My daughter is going to be eight in April. She doesn’t have near the problems that your has, but I totally understand the child behind the disease! My is such a vibrant, energetic person inside, it pains me so when she gets lethargic or those tummy aches! As mommies we must deal with so much...and it just stinks that a kiss and a hug isn’t going to fix this. I have no advice as I am new at this too...but maybe you can take comfort in knowing you aren’t totally alone. My ’s doctors think it is all related to an auto immune thing as well. We are waiting right now on some blood tests they are running because they want to start a new drug called 6mp ...I so freaked out at first...but this great

group here calmed me down about it, as many of them are on this same drug. I hope they can give you the comfort that they gave me! ) Beth Hunt Mom to : seven years old PSC (8/04) UC (2/06) "But without faith it is impossible to please him: for he that cometh to God must believe that he is, and that he is a rewarder of them that diligently seek him." Hebrews 11:6

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[Guest guest]

It's only been more recently that the hydroxizine hasn't been working. Since he's just been admitted today, I mentioned this to the resident who came in to talk to me, and that he needs either an increase or to try something else, as the itching drives him (and in turn me) crazy. Hopefully there's something else we can try. Poor kid is Bart Simpson yellow right now. Ami wrote: Dear Ami;Thanks for your explanation of all the conditions that has. This is quite a collection, and I marvel at his bravery and your strength!With regard to itching, my son did not get much relief from hydroxyzine, but has had excellent control of itching with rifampin. Because this drug can interfere with metabolism

of other drugs, such as corticosteroids, 's doctors might be hesitant to try this?Best regards,Dave (father of (20); PSC 07/03; UC 08/03)

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