Symptoms seem to be gone...

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izzi'smom

izzi'smom

Joined
May 23, 2011
Messages
1,549
:yoshijumpjoy::yoshijumpjoy::yoshijumpjoy::yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:
I'm not sure what to blame it on...Remi maybe?? (we increased her Remi dose 11/14).
I am thinking that the Remi effect is usually immediate...I noticed the change over a week later (11/23), after we lost the ng tube (and she won't have even a SIP of those shakes...boy did I try lol!)
At any rate, she is sleeping through the night and going 2-3 times a day, normal bm's...:ywow: Hooray!!
I guess I don't really care why...I'm just beyond thrilled!
 
Wow! Thanks for the update Angie! :panda::panda::panda:

I agree! Grab with both hands and enjoy! I hope it lasts and lasts and lasts hun...:heart:

Dusty. xxxxxxxx
 
Great news!!! :dance::dance: I'm so happy for Izzi and you!!! Hope it lasts forever and ever! :pika::pika:
 
Well, that was short lived lol! Blood 12/8, and frequency/urgency the last two days. It was good while it lasted! Not sure what to blame it on...let me retrace our steps for the last 2 weeks and try that :)
 
Ah hell, I'm so sorry to hear that Angie...:hug:

I hope you can find the reason but either way I hope that things settle again!

Good luck and keep us posted!

Much love, :heart:
Dusty. xxxxxxxx
 
Well shoot. I'd blame it on the Crohn's, which, by the way, I am getting sick of! I think we need to find a cure pretty darn quick.

I hope she feels better soon and you figure it out soon. :hug:

Take care,
Vicky
 
Oh Angie, I'm so sorry to hear that ! :(

Hopefully you can find the missing piece to the puzzle and solve it quickly!
My thoughts are with you both :)

big hugs and love,
~T~
 
Angie,
I am so sorry to hear she is feeling sick again. I was hoping things were getting better. I hate this crowns disease! They really need to find a find a cure
 
Her doc doesn't want to do anything differently, other than a stool sample. Her Remi dose is already increased and at 7 weeks instead of 8.
Speaking of which, the last time we had Remi we couldn't schedule our next appointment because they "didn't have the calendar yet". When I called one week later (so 6 weeks ahead of time to reschedule), they no longer had our regular day or time and pushed us back 3 days and have us coming in later. (Remi is a long infusion, and if we go later they are busier, which means a delay each time they have to reprogram the pump. 15 minute delay each time adds 90 minutes to our 4 hour infusion). When I complained, I was told "there are children with cancer here". While I can't imagine the struggles those kids (and their parents) go through, I am SUPER irritated that I was made to feel that my child is any less important than any other sick child. ARGH!!
 
Izzi's Mom,
I totally argree with your irritation at them. That isn't right of them to tell you that at all! I have always been puzzled with this 'scheduling out' thing too. Shouldn't these offices be prepared for this type of scheduling since that is the only type of patient they see??!! That happens to me also..."wait a month to call in because our computers don't schedule that far out"...then on the very soonest I can call..."Oh there isn't any appointments left!!" Yes to ARGH!!
 
Oh Angie, what an awful thing to say to you. :( I'm not surprised that you are super irritated, I am just reading it! I hate that they imply you have no concept of what is happening around you and that you somehow lack compassion! Grrrrrrrrrrrrrrrrrrrr.

Crohn's disease can be just as debilitating as cancer, and for some as life threatening, and for our children there is no cure. Is not bad enough that we struggle with an uneducated wider community but to have health professionals suggest that our children are not as worthy as others is just the pits. :(

(((HUGS))) to you Mum! :hug:

Dusty. :heart:
 
Oh I would be furious too!! :ymad: Who are they to judge the severity of anyone's sickness!!?? OMG! How unfair that they would try to make you feel badly for their incompetence. Perhaps they should better prepare their schedules so that ALL children can receive their necessary treatments! So sorry you had to deal with this! :mad2:

If you don't think it will cause you problems in the future, I would mention it to your GI's office next time you're there (if they are the one's who suggested this particular infusion centre???).
 
Hmm, yeah Ang, that would have pissed me off too! Meanwhile, the delays are prolonging Izzi's feeling poorly. Unnecessarily too it seems to me!
 
Thanks, all...and I mentioned it to the nurse filling in yesterday when I called. He expressed dismay but said when he mentioned it to our doc our doc was not surprised...they have had problems before :(
Briansmom, I wondered that also...we WERE scheduling 8 weeks out, and by the end of November (7 weeks til our appt) they didn't have a calendar for the next year?! o_O
Dusty, forgive me, but I was thinking of the differences between cancer and Crohns and was thinking it is probably unusual for kids with cancer to have prolonged pain/symptoms. I was thinking EXACTLY that Izzi has a CHRONIC disease...there IS no cure. She MAY suffer for the rest of her life with pain and illness. I wanted to say how dare you minimize my childs struggle. BUT, I just said OK to the appointment and hung up.
Tess, this hospital is affiliated with our docs office, and the only one in the area. I will be finding out the name of a department director/supervisor when we go again, though. I like to complain about things that bother me and tout about a job well done (I actually wrote the CEO and medical imaging director about Izzi's positive MRE experience :))

That reminds me...one of our infusions Izz had a fever so our doc stopped by to see us...he found us in a room, came in, sat down and began chatting with me. The nurse starting Izzi's IV said "And you are...?" She actually kicked him out so she could concentrate and he handled it with such grace. All of the nurses on the infusion unit think he is a resident lol! Poor doc!
Ack, here I am rambling again...thanks for listening! :)
 
OT...Kim, I just noticed Caitlyn is on Remi again...Are they expecting better results? I hope she is faring well!
 
Hi Angie,
Caitlyn is not doing well. No improvement yet after the first remade but they said that is not unusual. She has had worsening symptoms the last 2 days though. In the bathroom constantly and complaining of a lot of pain. She also is very down in the dumps.
 
Oh Angie, I just saw the post about the RUDE infusion nurse ! That infuriates me to no end for you! I'd like to send them pictures of Gabs abdomen from both of her surgeries this year, along with the surgeons post-op reports and then see if they think Crohn's is any less of an important illness !! How dare them!
Very good of you to keep your cool; I don't know that I could have done the same :kiss:
 
Same old! She is such a trooper, though. They had a gingerbread house-building day at school, and she missed the bus because she had to run inside to use the bathroom and didn't make it. After toileting, a wardrobe change including shoes (yup, it was that bad) and riding with me to school (a disappointment as she *loves* the bus), I am so pleased with her outlook...she is wonderful!
I called her md and he ordered more stool cultures. I feel like I am not doing enough to help her and she is going to end up with extreme or emergent surgery because of my inaction.
On a sad note, I was unable to change our insurance to include our doc in Boston this year. :( Praying for no surgery, and looking to do a LOT of research so MAYBE I can shange it for next year.
Thanks for checking on her...means the world to me when people ask (((HUGS)))
 
Awww, bless her. You must be so proud of her Angie. :hug:

Oh Angie, it is so hard when those feelings come to plague us. :( You ARE doing all you can hun, it's just that it's hard when everything seems to fall back onto us isn't it. The doctors and nurses have all gone home and we are left to wait and watch and decide what's important and what isn't. You don't want to overreact but then you don't want to miss something either. :hug:

:hang: Mum, you really are doing such a wonderful job. :)

I hope you are able to get your insurance sorted, I just wish you didn't have these extra hoops to jump through when you already have enough on your plate.

Much love, :heart:
Dusty. xxxxxxxx
 
Don't they all love the bus for the first year or so:) Then, "it's so embarrassing!"!!
What a trooper Izzi is!!
 
Angie, I know you are doing everything humanly possible to get Izzi the best possible care! :heart: We all have moments where we think that if only we'd asked this or checked on that ... but, I truly don't believe there are any parents here who are not doing everything possible! I truly have no doubt that you are not leaving ANY stone unturned! :ghug:
 

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