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Crohn's Disease Forum » Parents of Kids with IBD » Tater Tot and Remicade


 
02-21-2014, 12:31 PM   #121
Jmrogers4
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Had a message back from the nurse at GI's office. GI is off on Friday's but she says she talked to him and if anything changes she is to call him right away. Just hoping it was a very odd coincidence. I guess the question is do we pre-medicate next time and assume it's from the remicade or do we just wait and see if it happens again?
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-21-2014, 01:38 PM   #122
Jmrogers4
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Quote from the doctor:
It does not sound like the kind of allergic reaction we would see to Remicade. However, I would keep a close eye on him to see if it comes back. Knowing Jack he will not have a typical reaction if he is going to have one. We may want to give Benadryl prior to the next infusion just to play it safe. Let me know if you see anything develop again.

Thanks,
Jason
So I guess I will quit worrying and borrowing trouble and just enjoy the next 8 weeks until next infusion. Now, where's my wine it's almost noon.
02-21-2014, 06:05 PM   #123
my little penguin
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Couple of things:
Benadryl will NOT stop an allergic reaction period.
It can hide a rash/hives that your body gives as an early warning sign of a drug allergy but it will not stop an allergic reaction from progressing to anaphylaxis or anaphylactic shock.
Pre treating will make you less itchy and less likely to produce hives think comfort measure.
Benadryl is like the stewardess on the airplane
Epinephrine is the pilot .

Pre treating with steriods will calm the system down and make the body less likely to have a mild allergic reaction but even that will not stop it from progressing .

Please become aware of the signs of anaphylaxis
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02-21-2014, 06:09 PM   #124
my little penguin
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http://dermnetnz.mobify.me/reactions/anaphylaxis.html


http://dermnetnz.mobify.me/reactions...-syndrome.html
02-21-2014, 06:19 PM   #125
Jmrogers4
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Thank you MLP, pictures are helpful. It looked a little like the second picture in the second link but not that red. No fever or anything else though.
They went to max rate pretty quickly yesterday and I think I've read/heard that can sometimes cause a reaction?
02-21-2014, 06:30 PM   #126
my little penguin
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Fwiw DS had similar rashes for a very long time many months -
Allergy/dermo were not that concerned .
Only when it involved his tongue /throat and breathing did it become a real issue and that was immediate ( very end of infusion)
Rashes were more delayed same day or days after .
02-21-2014, 11:13 PM   #127
Justin1982
 
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Happened again at the restaurant last night, hostess asked if we wanted kid's menu, umm no. She asked Jack how old he was he told her 14 1/2 and she says guess not then. Sorry. I think he is getting a little frustrated with it especially now that he is feeling better and gaining weight
Know it's little consolation, but I looked young at his age, too. My mom would pull the he's under X up until I was around 16 to get the child discount (under 13 or 14?). Suffice to say, as a teenager, I was never very happy about her actions.

Every kid wants to be older, and every adult wants to be younger. I'm sure he's due for a growth spurt soon at 14 1/2. In no time, he'll look back and laugh.

Just right now, it's hard to find humor being sick and at an age of self conscience. I've been sick since his age, just never got diagnosed until last year.
02-25-2014, 04:36 PM   #128
LJS
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Jacqui,

I'm sorry for not checking back sooner..I've been pretty sick with bronchitis and cold.

I'm very glad that Jacks reaction was short-lived and he seems to be doing well - yeah!

Lin
02-25-2014, 04:47 PM   #129
Jmrogers4
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Hope you are feeling better LJS, there is some nasty stuff going around. He had another rash, extremely itchy area on his back Sat. night again benedryl and no problem since then. I'm hoping it is just a coincidence. As things are slowly sprouting around here and it is 60 degrees out today and the tulips and dafodils little green bits are poking up in my yard and he was outside all Saturday morning - So maybe some new spring allergy?
I'm sure it will get chilly again but it certainly does give me spring fever and I really do feel for you all in the midwest and east coast with your non-stop nasty winter you have had.
Thanks Justin for the encouraging words. I know he will get there it is hard when all your friends are growing and way taller then you and even your little brother is taller then you and you are just stalled. kwim. I do not pull the age card on him as I would rather pay the few extra bucks and boost his self esteem. (I have been known to do it with his younger brother though, although I think that is at an end as I'm only about an inch taller then him now.)
02-25-2014, 05:07 PM   #130
Mehita
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Daffodils *sigh*.

Has Jack had seasonal allergies before? Last year was the first time DS had them. His GI attributed them to puberty and the change in hormones.
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- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
02-25-2014, 05:14 PM   #131
Jmrogers4
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Can't wait to see their sunny yellow heads I know it will get cold again before getting warm but I was at the shoe store today and broke down and bought a new pair of sandals - Hope I can wear them soon.
Best I can say is maybe on the allergies... He was coughing more last spring and had some issues this fall but I don't know whether to attribute to allergies or Crohn's, kwim. It might be worth having him tested but then it's just another medical test he would have to go through.
02-25-2014, 11:01 PM   #132
Justin1982
 
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Hope you are feeling better LJS, there is some nasty stuff going around. He had another rash, extremely itchy area on his back Sat. night again benedryl and no problem since then. I'm hoping it is just a coincidence. As things are slowly sprouting around here and it is 60 degrees out today and the tulips and dafodils little green bits are poking up in my yard and he was outside all Saturday morning - So maybe some new spring allergy?
I'm sure it will get chilly again but it certainly does give me spring fever and I really do feel for you all in the midwest and east coast with your non-stop nasty winter you have had.
Thanks Justin for the encouraging words. I know he will get there it is hard when all your friends are growing and way taller then you and even your little brother is taller then you and you are just stalled. kwim. I do not pull the age card on him as I would rather pay the few extra bucks and boost his self esteem. (I have been known to do it with his younger brother though, although I think that is at an end as I'm only about an inch taller then him now.)
Wish your son the best, since we're all aware being sick is a bummer. Hopefully your son has the support of a few good classmates and friends. Some things in life aren't controllable, but having support of peers helps.
03-10-2014, 05:08 PM   #133
Jmrogers4
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Alright need to have a little bit of a freak out!! Just had a note from the nurse at Jack's school that there is lots of mono and strep going around! Really just hoping Jack does not catch it, just want to wrap him in a bubble covered in antibacterial goo. He's been so healthy lately I just don't want anything to mess with it. Do you think it would be realistic to just tell him to stay away from everyone!
I know chances are he will not catch anything but can I say my heart started pounding a little harder when I read the email.
03-10-2014, 05:10 PM   #134
Mehita
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We have Clorox wipes on every classroom. If the outbreak is severe enough, our 504 says I can pull him out of school. How concerned is the nurse?
03-10-2014, 05:20 PM   #135
Jmrogers4
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Just a note saying that there have been quite a few cases and she was going to put a blurb in the newsletter to please keep your kids home if they have a fever and also about not sharing water/food and washing your hands. I appreciate the heads up but was feeling good about the rest of the school year, now I'm worrying again.
She did say they are doing frequent wipe downs of surfaces but she wanted to let me know just in case since he is on remicade.
They just started their 4th quarter today and it's only 2 weeks until spring break
03-10-2014, 05:45 PM   #136
Tesscorm
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You may have seen this on my other post but I just found out that Stephen's roommate, the one with the bedroom right next to Stephen and with whom he shares a bathroom (and, remember, no moms there to sanitize) had to leave school in the Fall because he had mono. So, even in those close, contaminated quarters , S did not catch mono.

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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
03-10-2014, 07:55 PM   #137
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I know how you feel. Every time we leave the house I worry about exposing Caitlyn to germs. At this point though chances are he has already been exposed and if he is going to catch it there is not much you can do. Definitly tell him extra hand washing. Don't share towels or anything else that might contain germs. If they shower at school after sports I would send him with towels from home as mom can be spread from towel use and if the school does not wash them as well as they should well you never know. Cailtyn caught mono when she was five and we never did figure out where it came from.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
03-31-2014, 10:04 PM   #138
Jmrogers4
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So Jack had a doctor appt today and we have added another diagnosis to the mix. He has mild asthma so we have added an abuterol inhaler. But the good news is he is 105 lbs and 5'2.5" so since January he has put on 15 lbs and grown a 1/2"! The pediatrician could not get over how good he looks.
03-31-2014, 10:09 PM   #139
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I'm sorry to hear about the nex dx but that is just awesome about the weight gain and height! I know he has to be happy as well. Don't you just love it when someone recognizes how well they look? Way to go Jack!
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04-01-2014, 08:14 AM   #140
LJS
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Such amazing news Jacquie! I'm so very happy for you. My daughter has asthma, and as long as it's not heavy-duty, don't worry about it. Bring the inhaler to school, camp, keep one in your purse and he'll do just fine!!
04-01-2014, 08:54 AM   #141
Tesscorm
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Great news on the gains!! Sorry about the asthma but, hopefully, it'll be easily managed!
04-01-2014, 09:07 AM   #142
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So happy for you guys (minus the asthma). Great job, Jack!

So, tagging off another thread, knowing what you know now about his Crohn's and seeing Remicade work so well, do you really think LDN worked for him? I'm just curious. I've been reading up on LDN trying to decide if it might ever be an option for us in the future and I'm not understanding the mechanics of how it works. It seems like it's more for pain blocking/control vs getting to the root of and stopping inflammation like Remicade does? Right? Or am I oversimplifying?
04-01-2014, 09:42 AM   #143
Jmrogers4
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I think it did work. We had clean scopes, completely normal levels in blood, an FC of 90 and he grew. However I have heard that it can suppress your appetite and I think it did in Jack as he was never hungry and needed to be reminded to eat. When we added the supplemental EN to the mix he did gain weight and quickly. Which led his GI to believe it was a matter of just not getting enough calories.
It does take a long time to work and was it starts working it is a very slow process so I personally believe that maybe while their bodies are growing and developing it just doesn't work quickly enough. kwim.
I think when he is done growing/developing we may head back to it and hopefully by that time some more research will have been done. It's always bugged me a little even when Jack was on it when people say there are no risks to it. I think they are just unknown. I don't know a whole lot of children on it especially young boys and for prolonged period of time to say there is no risk. When Jack was on it I was still worried about some potential unknown risk that we would find out about too late and I think that needs to be taken into account (the unknown factor) when deciding for your child.
We know what the risks are for adults because it has been used for sometime in much higher dosage and those seem to be fairly mild. I know quite a few teenage girls have done really well on it maybe because their bodies mature much more quickly maybe it's different hormones affecting things. Who knows I'm just guessing?
04-01-2014, 10:22 AM   #144
Maya142
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We were told LDN actually blocked TNF like the TNF inhibitors.
We saw one sort of "alternative" doctor who really pushed us to try LDN. There hadn't been much research at the time and there wasn't ANY research on juvenile arthritis (that I could find) and I eventually decided we couldn't risk it not working and having more joint damage.
I really didn't understand how it worked either! There are some huge proponents of LDN, mostly on the adult forum, I'm sure they can explain.
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Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

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dx with JIA at 14
Ankylosing Spondylitis at 18
04-01-2014, 10:28 AM   #145
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Congrats on the weight and height gain!!!! That is great that he is doing so well! I hope that it continues for a long, long time!
04-01-2014, 10:29 AM   #146
Jmrogers4
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From what I understand Maya it turns off the endorphin production for about 4 hours and when the body starts producing them again it goes into overdrive to produce them and so makes more and allows the body to heal itself. Again this may be a completely dumbed down version of it but that is how it was explained to me. One thing to keep in mind is it crosses the blood/brain barrier and is just something to keep in mind with a growing developing brain. I'm in no way trying to prevent anyone from trying LDN or changing if it's working for them. I just think you need to research it as much as you would any of the other drugs. I know I read everything I could get my hands on about it when making the decision to try it. As I know all of you do which is why we are all a part of this forum, not only for the support but for the knowledge of the been there done that variety
04-01-2014, 10:34 AM   #147
Maya142
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I think it could be an option one day.. but I would like to find a doctor that really know a Lot about it first!
Thanks Jmrogers4. Glad to hear Jack is gaining and growing, hopefully he will shoot up soon!
04-03-2014, 04:46 AM   #148
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Thanks for the fab update Jm. That is brilliant! Onwards and Upwards Jack.

I hope the Asthma proves to be only a minor glitch along the way. Good luck!

Dusty. xxx
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04-10-2014, 07:35 PM   #149
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Jmroger4, oh my goodness, I just saw the pics on the other thread!! Jack looks fabulous!! I know you have to be thrilled with the weight gain! Woo hoo wtg Jack!
04-10-2014, 07:43 PM   #150
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Thanks, I knew he had gained weight but it wasn't until comparing the two pictures that it really hit. Everybody at work today was saying he looks like a completely different kid. Now if the height will hit of course I can deal without the height as long as he is healthy but I don't know how well that would go over with him.
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