Just returned from Boston

[izzi'smom]

and it looks as if we are joining the Remicade club! This is the third time we've been told this is our best option and it's time to try something new, as our current regiment isn't effective.
Loved our doc...he spent an hour with us discussing options, and when I told him I was hesitant about Remicade due to the potential side effects, he said "It's like voting. Neither candidate is perfect, but there is usually a better option"
He did also discuss Tacrolimus, which we hadn't heard of before. I think our chances are better with Remicade, and it seems as if Tac. requires a delicate balance (and a lot of bloodwork!)
The only other thing that he noted was that their path dept didn't find a granuloma in the slides...which may mean she has UC not CC, but that it isn't truly important now for us to find out, although for the future it may be super important. I need to be sure all of the slides were sent so they can be reviewed.
He also recommended an MRI at some point in the future when she is symptomatic as we haven't had any imaging yet (nothing I didn't already know, but was focused on getting her "better" first.
The kids had a great time (hospital was amazing...we went back twice to see "the balls" (Rube Goldberg contraption-two of them), and to walk up the musical stairs...cool even for me!
I also am thankful that my daughter "only"has Crohns. There were some very sick kiddos there, and although I have grieved for her having a lifelong disease, I think things could be far worse...I am so proud of my little moon faced girl!!

 

[Dexky]

Hey Angie, I'm glad you had such a good experience there! I've never heard of Tac! When does she start Remi?

 

[DustyKat]

This is so fab to read Angie!

I am so glad you and your little 'uns had such a positive experience with the hospital and the doc...YAY! Makes the world of difference.

I hope the Remicade does the trick for Izzi and she has many, many, many years of remission and good health.

Matt doesn't have granulomas with his CD either. They never showed up on his biopsies from his colonoscopy or on the pathology from his resection. The pathologists concluded he has no convincing evidence of Crohns because of it but all the docs agree he has crohns and so do I.

Good luck and keep us posted!

Much love, :Karl:
Dusty. xxxxxxxx

 

[izzi'smom]

We have to get preapproval from our insurance company and our regular doc (who has to order it because the one in Boston is out of network) is on vacation until next week. We'll get the ball rolling on Monday, hopefully.
Dusty, Dr. Essers told us that because visually only her large intestine is involved and it looks like UC but that only the biopsies determined it Crohn's colitis, that it COULD be UC. This is also why he recommended an MRI or upper GI/SBFT to determine if there is small intestine involvement. Short term it won't matter as he said CC is more like UC in many ways but when surgery becomes an option her diagnosis will make a difference. Glad it isn't an option yet...one thing at a time!

 

[Misty-Eyed]

Glad you got on ok! I used to go a children's hospital in London when I was younger. My poor parents had to take me there on the train every Wednesday which was an hour each way. Nightmare. It was very humbling though seeing children that were a lot more ill than I was!

It's good you had fun while there as well. I've been on the musical stairs!

You're right about the taking one thing at a time. I managed 18 years without surgery! Hope you get the remicade ball rolling soon

 

[izzi'smom]

Well, we've been denied! We're trying again to get the insurance company on board. Meanwhile, she has been off of Orapred since Thursday and had blood again Sunday. Her frequency/urgency has also increased and she's been incontinent twice. *sigh* I REALLY was happy to get her back off of Prednisilone and don't want to start her on it again!! Sorry for the vent today...

 

[Dexky]

Oh, sorry Angie! Don't take no for an answer! They're always going to deny it the first time. Keep pushing! Good luck!!

 

[AZMOM]

Angie - Denied for the Remicade???? Why?

J.

 

[Lisa]

Denied - really??? What insurance carrier do you have? Hopefully it is a matter of getting the right wording in the justification for it.....

 

[Crohn's Mom]

I'm with the others..why did they deny the Remicade?
Or let me guess...they (the know all insurance gooroo's behind a desk without a clue) want her to try other med's, so she can fail those as well first ??
Uggh...I'm so sorry for you!
I hope they approve it soon!

big hugs !
~T~

 

[DustyKat]

Oh Angie, I'm so sorry to hear this...

I don't know your system there so can't offer any advice but I sure hope the insurance company gets their act together ASAP! This is just awful.

Big hugs to Izzi and you too Mum...:ghug:

Much love, :Karl:
Dusty. xxxxxxxx

 

[izzi'smom]

I got the letter today...they want us to try Pentasa 500mg 3 x a day (done), try Asacol (I can't get her to swallow a m & m yet), and provide them with studies regarding the use of Remicade in patients under 6 years of age.
On top of this, I spent 2 hours on the phone yesterday to get her PPD done and live vaccines for her 5 year check up done early in case we CAN get approved so we can get started.

Why is it such a hassle??!? I'm not asking for a PPD because I am bored, and I am not interfering with her shot schedule because I have nothing better to do...GIVE ME A BREAK!!! Then she comes home with SIX bandaids (he dad took her), after I specifically asked for MMR, Varivax, and PPD (they asked why we were "refusing" the others and he allowed them to do the other vax's.)

On a positive note, I called Boston Childrens at 3pm to see if they received the remainder of our biopsy slides. I received a voicemail from the Doc at 5 (I about fainted he got back to me so quickly!) saying he got them, they came to the same conclusion as our regular GI, and that he would like to discuss this with me further...what would be a good time for him to call me?!??!

Will speak with him tomorrow...

 

[Dexky]

Let us know Angie!

 

[DustyKat]

Hey Angie,

I'm so sorry to hear about all the hoops they are putting through...

I saw your post about studies, I don't know of any but perhaps you could contact the manufacturers of Remicade and ask for their help?

Thinking about you guys and keep us posted.

Much love, :Karl:
Dusty. xxxxxxxx

 

[vness1208]

glad you heard back from the dr & so srry you have to go through all of this to get the meds your daughter needs.. you should appeal it, then usually theyll approve you. Boston childrens hospital is really good, the best in the country so hope everything works out for you and your daughter & she gets the treatment she needs. Good luck.

 

[AZMOM]

Angie I agree with vness. Check the Remicade website. I think it has supporting info for insurance and your docs office should be able to help you wage the war. Top down therapy (early biologics) is not new.....good grief!

J.

 

[izzi'smom]

Tried Remicade for studies...they were unable to help.
Talked to Boston MD who told me that my insurance company wasn't very bright...as there aren't a lot of children with cc in order to even DO a study.
THEN I got a phone call that we are APPROVED!!:dance::dance::dance::dance:
Now we have to wait two weeks because we got her 5 year live immunizations early thinking it would be a while...:ybatty::rof: Talk about ironic! SO we will probably go back on Orapred AGAIN BUT hopefully not for long :biggrin::thumleft:

It's such a nice feeling to update with good news.

Oh, and I want to marry her new GI. I think it's the fact that he dresses impeccably and his name is Jonah. Maybe I should send him flowers. Wish me luck. :lol2:

 

[Crohn's Mom]

Excellent News !! yeah !!! :cheers:

Now...just let us know when you need addresses to send us our wedding invites! :rof::rof:

 

[DustyKat]

WOOHOO!!! Fab news Angie!!!

Oh man, I am so happy for you and Izzi. :banana::banana::banana:

Ugh don't ya just hate Murphy and his law! Fingers and everything else crossed that should Orapred be required it is only a quick burst!

:mademyday:

Dusty. xxxxxxxx

 

[AZMOM]

Angie!!!!!!!!!!!!!

:ghug: :ghug: :ghug: :ghug:

That's fabulous news!

J.

PS Come help us with our attic while you wait. :ybatty:

 

[Dexky]

Good deal Angie

Flowers?!!! No,no,no!! Send him some steaks!!

 

[Brian'sMom]

Mark, You're soooo funny!!

Angie, Glad to hear the good news...I was going to post earlier in the reading...Get your GI doctor to fight the insurance company...but sounds like that is what happened.

 

[izzi'smom]

Julie...I *love* to organize, but I'm guessing Claire will outlast me as it's not 9pm yet and I am falling asleep LOL!
Mark...steaks, eh? Oh, that's right...the way to a man's heart...
Off to research wedding venues in Boston

 

[izzi'smom]

We start Remi August 15th!

 

[AZMOM]

Yay!!!!!!! For Izzi! (yay for mommy too )

J.

 

[Dexky]

Angie and Izzy- 1----A-hole insurance co.- 0

Go team!!

I hope it works great Ang!!

 

[Kat]

Congrats!!!! Remicade has been a miracle drug for my 14 year old daughter. She goes every 8 weeks and feels great after the infusion. She knows when the 7 week mark is, as small symptoms start to appear, but the day after the infusion - she feels so much better and is ready to conquer the world! I hope and pray that Izzy gets the same feeling. Good Luck - fingers crossed for Aug 15th!

 

[Lisa]

Great news! Do you know where you will be going to get it done?

Remember to bring stuff to do - although if they pre-medicate she may just sleep....so bring something for YOU to do! lol.....it's nice where I go - they have televisions so I get to catch up on Law and Order lol....

 

[gypsigirl28]

Awesome News!!! Good luck with the new meds

Hugs to you all

 

[izzi'smom]

Kat...I am so glad it works for your dd...fingers crossed! She's still on 5 Pentasa a day? We were told/hoping we could d/c the Pentasa if the Remi worked...
Pasobuff...you're from UNY also? Where? We are going to Upstate in Syracuse for the infusions. I can't imagine they'll medicate her, but I was forewarned...a TV is NOT enough for three hours . I have some fun planning to do!

 

[Kat]

Izzi'smom - Yes Ashley is still on Pentasa 5 times per day. Both medications will be for the rest of her life according to her doctor. We are still very new with all of it and have have excellent luck getting her into remission. We see her doctor again in 2 weeks for blood work and I will ask why she is on both. My goal is to keep her off the Prednisone - as it made her a very "nasty" teenager (LOL). Her crohn's is in her large intestines only - maybe that has something to do with the prescribed medication.

As far as the pre-medication for the infusion - Ashley takes Benedryl and Tylenol. The first few infusions were not very relaxing for any of us. But now she is so use to them she sleeps for the 2.5 hours and I sit there reading and watching movies. Not to bad - but it does get a little boring. All the best wishes for you both!

 

[muppet]

Who do you see in Boston? Do you like him/her? We love the kinetic sculpture, too! We were seeing Leichtner who used to treat me 28 years ago in Hartford, but he's gone on sabbatical and now we're not sure what to do.