Remicade starts tomorrow

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mikayla

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Mikayla has been home from the hospital for 10 days now. She is strictly on TPN for 18 hours a day. No food or water. She says she feels so hungry, so chews gum to help with that feeling. She starts on Remicade tomorrow. No idea what to expect. The Dr said she will have one dose tomorrow. Then another does in two weeks, then another dose in 4 weeks. Then an MRI to see if it worked with the inflammation. We want remission SO bad. How long does it take to feel better? Is remission in sight? Is there a magic dosage to healing?
Hands down, worst summer for our baby girl. Thanks for your thoughts !
 
Hey, I hope the remicade works wonders. When I was first put on it I felt better in a matter of weeks. Once the starting doses are done is when I felt my best. Then I just kept going back to the maintenance doses.
 
I hope every thing goes well for your little girl.
Sorry not to much advice as of yet.
The doctors for Grace still taking their time.
Very upstetting. I hope the new meds will do the trick.
Please keep us updated.
 
Good luck! I felt about 80% better 3 DAYS after my FIRST infusion. It was amazing. I never got any better after that, even after doubling the dose, but I'll take 80% over 0% any day!
 
No water even? Are you sure about that? I don't mean to insult you but I have never heard of water being completed withheld. Restricted yes but not withheld.

And I am sorry to tell you this but chewing gum stimulates peristalsis according to our ped GI and he didn't want our son chewing the stuff. Also some gums have an additive - they're usually sugar-free ones - that also stimulates the gut and he was especially clear that he didn't want our son chewing that kind when he was on strict EN. I'll try to remember the ingredient or look at a pack of gum so I can post it.

Of course you should check with your GI about the gum chewing. They may feel it's fine. I hope so for her sake.

Also you may want to check out the Oley Foundation site. It is support and info for people who are on TPN and has some info about handling the loss of food.

Hope the Remicade is her magic bullet
 
I believe the additive in gum is Sorbital - when my son was on exclusive EN, we were told to avoid gums with this additive. If I remember correctly, the only sugar-free gum I could find without sorbital was Juicy Fruit (but, please double-check... it's been a while!)

I hope the remicade does it job quickly, quickly!!! so she can get on with enjoying her summer! :ghug:
 
The nurses told me that "most" patients feel like a new person after 3 doses, it wasn't after 5 doses and a failed picc line that Em has finally started down the road to remission. It is possible, but it's a LONG LONG road- we'll be here for you! I'm thankful for all the wonderful people who have been supportive of us~I thought we'd never make it :)
 
The infusion is really pretty easy, the nurses are great. Alex got weighed, then an IV put in with bloodwork taken. They gave him tylenol and benadryl each time to help avoid a reaction. The entire visit is about 4 hours, but the remicade infusion itself takes about 2 hours, they start out slow and monitor them for reactions, then step it up every half hour til done, then saline flush, and go home. He watched tv and played handheld games and ate snacks. The loading schedule sounds like Alex's, then he went to every 8 weeks. He saw results in just a few days, his color and energy came back and he started gaining weight quickly. Everyone varies and some see no response. Best of luck to your daughter!
 
Just wanted to wish you good luck with the infusion! Hope it works wonders for your poor girl! No experience here so no pearls of wisdom I'm afraid.
 
Hey there and welome to the IV League!

O felt a bit better right away but she was also on Prednisone. Sometimes it takes a while for them to work out dosage and scheduling but they do get better and better while tweaking everything It took O about 5 months to get good blood results and actually look good again but all the while she was making steady progress.

IDK about the gum on TPN but O was on exclusive EN and our doc ok'd 1-2 pieces a day.

As for the actua infusion...O loves it. They dote on the kids left and right...big comfy chairs, tv, video games...O jokes that to make it perfect they just have to add mani pedi service. I dont know about your center but at ours the kids often eat. They do have two rooms and try to seperate the EN/TPN kids from the other kids who will probably be eating snacks or lunch. Sometimes they offer times of the day where no one will be eating. If they don't offer ask about those accomodations they may be able to help you out with them.

Oh and O is zonked the whole day after infusion...probably because f the allergy mds they give.

Good Luck tomorrow!
 
Patricia56 said:
No water even? Are you sure about that? I don't mean to insult you but I have never heard of water being completed withheld. Restricted yes but not withheld.

And I am sorry to tell you this but chewing gum stimulates peristalsis according to our ped GI and he didn't want our son chewing the stuff. Also some gums have an additive - they're usually sugar-free ones - that also stimulates the gut and he was especially clear that he didn't want our son chewing that kind when he was on strict EN. I'll try to remember the ingredient or look at a pack of gum so I can post it.

Of course you should check with your GI about the gum chewing. They may feel it's fine. I hope so for her sake.

Also you may want to check out the Oley Foundation site. It is support and info for people who are on TPN and has some info about handling the loss of food.

Hope the Remicade is her magic bullet
Click to expand...


Gum is okay. We had a secon oppion today with a Crohns specialist at UCSD. Gum is good, mints too onTPN. Mik will start on Remicade tmrw. Praying for healing
thanks honeY
 
Good luck~
You live in a beautiful place with great hospitals!

Will be thinking of you and hoping for a fast turn around.


Lauren
 
Wishing m luck! Izz loved going for the infusions (well, aside from the IV)...hoping it does the trick for you!!!
 
My son just had his third infusion today. We followed the same schedule of first dose, two weeks later dose 2, four weeks later dose 3. By the second dose his ESR went from 50 to 14. By dose 3 he had put on 10 pounds. We haven't gotten the blood results from today yet, but I am hopeful his iron and protein levels have increased. He has so much more energy, so I think we will see it in the blood levels.

Good luck!
 
thanks ALL. Remicade went well. She feels good. She watched a series of Chuck on her laptop the whole time. I wrote a TON of thank you notes. Through this whole series of our storm, I am overwhelmingly blessed on how people care for you and help you. We have had meals, cleaned house, cleaned car, transportation for other kids, and prayers coming our way. Unbelievable support.
We wanted a second opinion, so We saw a Crohn's specialist at UCSD yesterday and he said she needs to have a more aggressive treatment. Her Crohn's in located in her small intestine in several different areas. He recommended steroids and 6-MP along with Remicade. He will communicate his recommendations to her GI Peds Dr. He and his PA said that gum chewing and mints were fine.
So far so good!
Thanks for the good thoughts, crossed fingers, wishes and Prayers!
Blessings,
Mik's MOM
 
So fab to hear that all went well for your girl hun, bless her. :)

Sending loads of luck and well wishes that the Remicade continues to weave its magic!

Dusty. xxx
 

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