First Remi treatment this morning!

[Clash]

Well C had his first remi treatment first thing this morning. He ate really good last night as I had read it helped and of course pred. has given him this crazy appetite which usually makes him suffer after each meal.
Infusion went well, he has been really fatigued since we left lab. Says he feels like he can't get enough sleep.

I was wondering, don't they do blood work after infusions? Usually, how often is this done?

We have a call into the GI to see if we can start tapering his pred. he is so ready to be off this med. I was hoping it would do the trick but now that we are sure it isn't I'm ready for the taper too!

Sending great day wishes to everyone!!

 

[DustyKat]

Thanks for the update Clash!

It is so fab to hear that all went well! :applause::applause::applause: Long may it continue hun!

We haven't done Remicade here so I can't help out on that one. I know others say their kids are often pretty bombed after the infusion too. Perhaps they gave him some Benadryl pre infusion, if so this may be causing the fatigue.

Dusty. xxx

 

[Clash]

Now we have a fever too:frown:

 

[DustyKat]

Oh no...:hug:

Did they give you any post infusion instructions? Is Panadol (Tylenol) on the cards?

Dusty. xxx

 

[Clash]

They did, the fever was low grade, and hasn't really changed since the dose of tylenol. I'm going to keep an eye on it throughout the evening. They said if it reached 101 make a call to on call ped GI if it persists at same level to call office tomorrow. He isn't feeling bad though just struggling with the fatigue but honestly, the wild ride of pred. keeps him bouncing between fatigue and restless energy.

 

[DustyKat]

Good Luck! I hope it all settles and soon, poor love. :hug:

Dusty. xxx

 

[Twiggy930]

I hope the fever goes away overnight and he starts feeling great.

Isn't it awful when you are stuck with a pred taper and you know the drug isn't working! It makes all the side effects that much more intolerable.

 

[izzi'smom]

Izz was super fatigued after the first infusion also...this lessened with subsequent doses.
Hoping the fever subsides shortly and that Remi is your miracle drug...and that you can get off that Pred!

 

[Jenn]

No experience with pred.... The nurses took blood when they placed the IV for Remicade at the start of each infusion for Alex. Maybe they did that and you didn't realize? Could be the prescribing doctor didn't order it, so check with your doc. Was great not having to make separate trips for bloodwork.

 

[Clash]

Thanks for the encouragement guys! The fever is gone but still having fatigue and hot flashes. He seems to be doing ok. He doesn't like the hot flashes but ibd nurse said they usually subside several treatments in so hopefully that is the case. And finally.....we are tapering pred! Yay! I would throw a party but C went to stay with his Dad for the weekend. It's been awhile because he hasn't felt up to it. Hmmm...me and the hubby may throw a party any way! Oh I hope the pred side effects go away quickly!
Asked the ibd nurse about blood work she said it was last done April 14 and WBC was high; C went to hosp. 2 fridays ago and it was high then too. ibd nurse said they would do it on may 18th with 2nd remi dose. Is that what others have experienced or should I push for sooner with wbc count elevated last 2 times

 

[Sascot]

No experience with Remi so can't help there. Glad the fever settled! Hope it does the trick!

 

[izzi'smom]

While on Remi we also only got blood draws from IV site pre-infusion. I was comfortable enough with this and didn't request anything more frequent.

 

[Clash]

So C went to his Dad's house for the weekend but called this morning and said he was feeling pretty good. I so want this to be the turning point...fingers crossed! Hope everyone is having a good day!

 

[crohnsinct]

Hi Clash - Welcome to the IV League! My daughter had the hot flashes also but after the 3rd dose they subsided. She is also zonked the whole day afterward...probably from the zyrtec. She also gets her blood drawn at infusion. She loves her infusions..Big comfy chair, movies, lunch...she says they should add mani/pedi treatments and it would be perfect. It always seemed silly to me that they take the blood before infusion when the kids will be at their worst and then don't take it after to see if the Remi is helping but what do I know. I think the idea is when they get the schedule and dosage figured out the blood drawn before infusion should look good.

Glad to hear he is feeling better. Good luck with everything.

 

[Twiggy930]

So glad to hear he is feeling well!!!

 

[Clash]

Thanks guys! This forum us truly awesome! It is so comforting to share your fears, joys, victories and setbacks with people who understand!!

 

[QueenGothel]

My DD always had a high WBC, how high is high. 15000 was normal for Rowan when she is on predisone, it makes it higher. I wouldn't worry about it. So long as he is not actively bleeding. It should go down with the Remicade and tnf. I hope it helps your boy feel better.

We were told the predisone taper wouldn't begin until the initial 3-4 infusions were in. We never got to that though cuz it didn't work as well for Rowan.

 

[Clash]

Ok I'm a little nervous. C just got home from his Dads and he seems to ne feeling well enough, he said he cramped a little over the weekend but his first bm this morning he said there was a lot of blood in the toilet. Now when the first GI performed the colonoscopy on C he explained in recovery that C has something similar to a hemmaroid but not a hemmeroid and it looked like the red blood we'd seen in the toilet was coming from this being irritated or inflamed. He didn't give a specific name for this and I was so keyed in on him saying he did have Crohn's the biopsy would confirm it that I didn't ask the name. I researched and felt like this was probably a skin tag from the docs description. His peds GI appt is next week so he is supposed to check it out then.
Okay but this is the most concerning and advise would be appreciated, upon arriving home C asked if the lymph nodes in his neck were swollen because it hurt when swallowing and they were both tender to the touch. I don't want to overreact butis this something I should be notifying the ped GI on call about or I dont know, just that he had his first remicade Thursday it concerns me that he has this complaint. Any experience with this or advise would be helpful

EDIT: He says it is not that it Hurst when he swallows just when he pushes down with his tongue it hurts the two lymph nodes under chin on either side of esophagus, I suppose.

 

[Sascot]

Sorry we have never had Remicade so I couldn't tell if it's normal or not. I would think it would be better to phone someone to check - maybe even the ward where he had the Remi infusion done, as they should have more info.
Hope he feels better soon.

 

[crohnsinct]

Clash - FWIW - my daughter also has swollen lymph nodes after an infusion. Same exact way your son has them now. Our GI requested a weekly email check in so I just included it in my bulleted report. He told us to go to pediatrician and have them checked out and she deemed they were most likely viral and they went away quietly. Also, there is some weird virus going around here...fever and swollen glands etc. so maybe that is it.

My daughter never stopped bleeding with Remicade (thus we are adding EN to help support the Remi) and I was told the type of blood it was was not the blood they are terribly concerned about (amazing how many different types there are) and I could stop including it in the report...go figure.

That all said, I would call and just report the symptoms and let them take it from there. At least your worries will be calmed. You are so new to this and it doesn't hurt to check.