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Tater Tot and Remicade

It's heart breaking to have our kids feel bad about how the look...no matter what the issue is. A friend asked LJ what his New Years resolution was and he said, "Gain 50 pounds" she chuckled. Then he said "So that I don't look so bad."
I could have cried.
It's bad enough that they ever have to feel physically bad, but the mental part wears on them too.

JM-I'm so thrilled that Jack is having such great results from the Remi! He is going to shoot up all at once!! I can just feel it!!!!
 

Jmrogers4

Moderator
I really think so too, it is just hard for him and me waiting... He'll be 15 in July and I figure by then he will be "15 year old sized" and filled out. We'll get an official weight and height check at his infusion next week but I think he has grown a little, he came out in a pair of jeans on Saturday, we were going to a concert, and I had to send him back to change because they were too short. It sure would be nice to get rid of that favorite raggedy t-shirt he has had since 4th grade because it's too small :)
 
Jeans too short!!!! That's awesome!!!! I can't wait until LJ needs bigger clothes! Ha! He won't be excited to go shopping but I will be thrilled!!!
Never thought I would feel this way about boy clothes! Ha!
 

Jmrogers4

Moderator
Don't I know it... Jack actually likes to buy clothes, he has quite the GQ style and sometimes comes out for school and I'm like really are we doing a photo shoot but then my younger one will wear nothing but athletic shorts and t-shirts and has to be talked out of flip flops most days (even when it is snowing outside). He wears bow ties to school about once a week :yfaint: He came walking out of his room last week in dark grey jeans, white button down oxford with a blue plaid bow tie and grey sweater and topsiders. (Apparently the girls all compliment him when he wears such attire - go figure). So definitely the mind of a 14 1/2 year old boy, if the girls like it, I'm doing it.
 

my little penguin

Moderator
Staff member
:dance::dance: for jeans that are "Too short"
I know it took DS a while to "grow" on remicade - many months

Finger nails - are a BIG clue here.
They need CUT ALL.THE.TIME - every week to two weeks. then pants get short.
The pants I bought DS at the beginning of the school year - too short already.
So there is hope.
 

Jmrogers4

Moderator
If only he would quit chewing on them so I could tell. Oh well get him in remission then I'll work on nagging about chewing on his finger nails. It drives me nuts!
 
OMGosh! How cute he must be going off to school dressed like that!

Yeah, growth was the last thing to come for O and it snuck up on us. But when it did boy...6" over 2 years and although she has gained almost 30 pounds she is still rail thin. I think that was going to be her lot CD or no CD...I was rail thin also. She is making me sad though because she constantly very nonchalantly says she is ugly. Very matter of fact...Like some people have blue eyes, some brown..some are attractive some ugly. If only we could get that darn psoriasis under control. But we have remission so guess you can't have everything.
 

Tesscorm

Moderator
Staff member
It is so sad when they have to struggle with their mental/emotional self images! Hard enough when you're a teen... so much worse when you have something working against you! :( FWIW, even pre-crohns, S was a small, skinny kid - although my kids are only 13 months apart, my daughter (older) was always a foot taller than S and weighed 20+ lbs more... BUT, in grade 9 (14-15 years old), S just suddenly REALLY shot up (grew close to a foot!)! It was actually this growth spurt that we thought was contributing to his sore back months before his diagnosis. So, hopefully, Jack's spurt is right around the corner! :D

And, love his style!!! :thumright: My nephew, has always been like this too. From grades 3 or 4, he started dressing up for certain days in school - he'd come down dressed in a suit & tie on picture day or on a day he had to do show and tell! :lol: And, yes... even at that age, he knew the girls liked it! :ladysman:
 

Jmrogers4

Moderator
I'm so hoping for that Tess, but even if he stays short I think he would just like a little more maturity to his face kwim - I'd like a little less maturity on mine but...
Poor O - She is beautiful. They have such fragile egos (pretty much all teenagers) so anything that sets them apart, gets picked apart.
I've been telling him about S and working out and he has started working out, it's nice seeing him get some strength back I can't believe how weak he has gotten in 6 mos. He used to be able to do a ton of sit ups, He could barely manage 5 last week. He got 10 done last night.
I think even though we knew it wasn't going to happen over night we were still wishing for it. This damn disease can take you down over night but it takes forever to build back up from there.
 

Tesscorm

Moderator
Staff member
I know I've said it before but S really does believe that the EN formula pumped him up. He used to work out before crohns (so about 15-16 years old) and never built up much muscle (possibly partly due to his upward growth spurt and then the early stages of crohns). Then lost 25 lbs at diagnosis, so had to regain that weight but, once he regained those 25 lbs, he kept gaining... and as he gained strength, he started exercising more with weights (really just going back to what he'd been doing before getting sick, so no new special program) and then started to see real results! Much more than he'd seen pre-crohns. So, while part of it may have been due to the growth spurt/crohns dx, S was/is convinced it was the EN formula that really helped him build up bulk. His height hasn't changed much since dx (ie 1 inch??) but, to give you an idea on weight change - 140-145 pre-sickness, 125 at diagnosis, 135 after 6 weeks EEN, 155 after another 6 weeks of supplemental EN and then over the next few months to 160-170 lbs (and stable since...). But, just so that Jack doesn't expect these same exact results :eek: immediately, S was diagnosed just before turning 17 so this filling out/bulking up gain happened at 17-18 years old - probably the age range that any teen boy will begin to develop a more 'manly' body anyway (the EN formula probably just helped this process along).

Throughout this period, S was taking in 1500 cal/day, 5 days per week (with no exception! - if he had to miss EN because of vacation, I elminated the 'off' days in the weeks before and after the vacation to make up for it) in elemental formula for 2 years!

I'll try to find pictures of S in Grade 8, grade 10 and recent that show the difference and post later. :)
 

Jmrogers4

Moderator
3rd loading dose done and all went well. Appointment made for 8 weeks unless symptoms appear then they will just fit him in. Official weight 101.6, no gain in height yet... Took labs this time so I will be interested in Alt Phosp. levels and see if those have increased. Otherwise he feels good and every one there was commenting on how his face has filled out and how good his color looks.
Sad thing while jack was getting his infusion, GI had appt's with 2 brand new Crohn's diagnosis :(
 
Son is going for second loading dose on Monday (we had to move it from tomorrow to monday to accomodate some special school assembly he wanted to be at.. and I'm thrilled b/c I'm sick as a dog so tomorrow would be tough!)...no change yet really in appetite - maybe a slight increase but I'm patiently waiting! ;)

Glad Jack is doing so well!! yeah!
 

Jmrogers4

Moderator
Well Crap!! Jack has a rash on the back of his neck and it looks like it is growing to his chest. Do you think it is too much to hope that it is from something else and not the remicade? I just gave him some Benedryl and sent a message to his GI. Labs just posted and they look good. ESR is 9. His alk phosp is 259 the highest it has ever been it's usually 196 so now I'm really hoping for growth. I tried taking a picture of the rash but can't get it to come out very well
 
WOOHOO! Welcome to the 100 club Jack!!!!!! :dance::dance::dusty::dusty::yoshijumpjoy::yoshijumpjoy::applause::applause:

Rash?! Tell him the committee never approved a rash. As a matter of fact I think the committee is pretty clear on our position of no rashes allowed!!!!! I really, really hope it is nothing!!!!
 

Jmrogers4

Moderator
No pre-medication, went for Mexican food after infusion- he ordered the same thing he always does but this time he actually ate the whole thing, no new laundry soap but I'm hoping it was just from something else. He is fine this morning and rash seems to be gone but I told him if anything felt funny or itchy he was to go straight to the nurse's office and call me.
 

Jmrogers4

Moderator
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?
 

Jmrogers4

Moderator
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.
 

my little penguin

Moderator
Staff member
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
 

Jmrogers4

Moderator
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?
 

my little penguin

Moderator
Staff member
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 .
 
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.
 
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
 

Jmrogers4

Moderator
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.)
 
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.
 

Jmrogers4

Moderator
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.
 
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.
 

Jmrogers4

Moderator
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.
 
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?
 

Jmrogers4

Moderator
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
 

Tesscorm

Moderator
Staff member
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 :lol:, S did not catch mono. :)

:ghug:
 
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.
 

Jmrogers4

Moderator
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.
 
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!
 
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!!
 
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?
 

Jmrogers4

Moderator
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?
 

Maya142

Moderator
Staff member
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.
 
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!
 

Jmrogers4

Moderator
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 :)
 

Maya142

Moderator
Staff member
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!
 

DustyKat

Super Moderator
Thanks for the fab update Jm. That is brilliant! Onwards and Upwards Jack. :thumleft:

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

Dusty. xxx
 
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!
 

Jmrogers4

Moderator
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.
 
I know what you mean, I am hoping C has gained some height. By the rheumatologist scale he had gained height but by the GP height thingy he lost a 1/8 inch LoL! So ready to get to the GI where we usually measure!
 

Jmrogers4

Moderator
Yes Endo had Jack a little taller then GI. He goes back to Endo on the 28th so we'll have to see what height they give him then. I figure it's usually weight before height so here's to our boys gaining both ways and getting and staying healthy
 

Jmrogers4

Moderator
So Jack was in pain last night said he felt like he was going to throw up and in a lot of pain this morning. Says it feels like Crohn's pain. I'm assuming he can tell the difference. He tried to go several times this morning but nothing. He ended up staying home from school. Infusion is on Thursday. Do you think I should call GI or just wait the 2 days until infusion. He said to call him if symptoms showed up but we are only a couple of days away.
 
Call, that way the GI can at least make note of it.
Poor Jack. Is there a virus going around....I always hope for viruses.:hug:
 
I'd call and see if there is anyway he can get in today for his infusion.. he's home anyhow so maybe they can work him in.

Funny, I always ask my son, when he has a stomach ache, if it's a "crohn's pain or just a regular one"..he seems to know the difference. And LFG, I always hope for a virus too..isn't it so sad that we hope for stomach bugs for our kids - so much better than the alternative!

Hope Jack is feeling better soon!
Lin
 
I would call the GI. At least they will be aware whether they move the infusion up or not. Sorry he isn't feeling good
 

Jmrogers4

Moderator
Alright, thanks team :) I just left a message. I was going to just wait but you're right if they can get him in a day or so early rather then him just having to deal with the pain. He usually goes to school even when he has pain so I know it was pretty bad this morning especially when he walking hunched over holding his stomach.
I don't know if I want it to be a virus or not since he has his infusion on Thursday but then I don't want it to be CD symptoms either. Asked him if lots of people had been out sick at school (nope) and I haven't heard of anything going around but I guess I'll send an email to the school nurse and see.
 
Sorry He is not feeling good. Let's hope is not CD nether a a virus. Maybe something he ate and it did not agree with his belly. After almost 3 years with the disease, for the first time, Lettuce gives my daughter flare up symptoms. I hope Dr. rings back soon.
 

Jmrogers4

Moderator
Bumped his infusion to tomorrow morning. We'll do blood not that it will tell us anything as it's almost always normal but just in case and discuss if we need to move to 7 week schedule.
 
I'm glad they bumped it up. The blood work might not tell the tale the times C has been flaring the remicade infusion made a difference as far as symptoms right away. So if this is CD I hope this will be the case with Jack as well.
 

DustyKat

Super Moderator
I hope this is a one off Jm and Jack is soon on top of things again, bless him. :heart:

Good luck with the infusion and the bloods!

Dusty. xxx
 
Glad you called & Jack is getting his infusion tomorrow. Hate to see our kids in pain...it's tough to watch:(
Big hugs your way & hope that Jack gets quick relief!
 

Maya142

Moderator
Staff member
Really hope the infusion helps! Have they done the Remicade levels test? Perhaps he needs more frequent infusions?
 

Jmrogers4

Moderator
No we had talked about doing it at some point after several infusions just because his blood never tells the story. I imagine we will reduce to 7 week intervals as when I talked to the nurse this morning she said he would discuss that with us tomorrow. That is a good thing about his infusions being done in the GI office. Is we get a GI check up at the same time and they are squeezing us in tomorrow morning so we have to be there at 8 and the offices don't even open until 9. So we will get a little extra time with the GI.
 

Jmrogers4

Moderator
He was feeling yucky yesterday and has just kind of been a little off the last couple of days but I wasn't too worried since infusion was coming quickly. We've all eaten the same thing the last few days and his stomach was really bothering him today. He says it still hurts just not as much but then he has eaten absolutely nothing today. He is drinking water though. I'm trying not to say anything about the no eating but I'm having flashbacks...
It could of course not be connected to his Crohn's but... I guess the question is based on his blood tests in the past not showing anything and I don't imagine they will tomorrow do we reduce to 7 week schedule or do we try 8 week again and see if symptoms show up the last week. HMMMM... Hate to reduce if we really don't need to.
 
No, not really. Our GI really pushed for DS to wait eight weeks the first cycle just to get a baseline of how he was feeling at that stretch. Obviously, something is up with Jack. He just might not be an eight week kid. If his labs don't usually show anything, how are you going to know? I suppose you do seven this time and shoot for seven next time...?

Very interested to hear how it goes tomorrow. I hope Jack is handling things ok, emotionally? Poor guy :(
 

Jmrogers4

Moderator
Well 8 weeks would be Thursday so we kind of made it to the 8 week mark which is why I'm kinda wiffle waffling (I'm making up words now). So do I just tell him let's try for the 8 weeks again and hope for the best.
 
Tough call. If you're doing the antibody test and it says he has no Remi left in him then the answer is obvious. I thought I read on here somewhere that it's common for kids to be in the 6-7 week range?

Whiffle waffling. I like it. This is about the time our Aussie friends pop in and say it already exists in their vocabulary *lol*.
 
Yeah, I think that is a tough call too. I will say although C only went to the cramping and CD pain twice in two years on remi there were other times we had more subtle signs that he wasn't making it like a little more fatigue or his episcleritis would show up. Of course, since he felt well he could easily convince me it was too much awake time, computer time/Xbox time.

Now looking back I'm starting to see it was often a little something showing up just a few days before the infusion. Of course when warranted we shortened schedule or upped dose.

Maybe you could do 8 weeks and a fecal calprotectin right before the next infusion to see what it shows?
 

Maya142

Moderator
Staff member
That happened to M way before the 8 week mark - we never got to it! In arthritis the standard is every 6 weeks so it wasn't a big deal for us to go in early for it.
The Remicade levels test was very helpful in determining when we should go (though it is expensive, our insurance covered it after some arguing). We eventually went every 5 weeks and the nurses at our infusion center said kids rarely make it to 8 weeks.
 

Tesscorm

Moderator
Staff member
S had his levels tested the day before his first 8 week infusion (ie after his loading doses), he had no remi in his system. So, we moved to six weeks. Hated increasing the frequency but, if I'm going to give him this med, I want him to benefit from it. We tested again at just before his 6 week infusion and this time it showed adequate remi levels.

You won't be able to test levels after his infusion (will have to wait until just before next one - at least, this is how it's done for S) but, I think if you/he notice an immediate difference after the infusion, that's probably a pretty good indication that the remi was needed (ie not at therapeutic levels).

Re 'crohns' pain - S can tell the difference too. :) When he hasn't felt well or had any pain, he'll tell me if it's crohns pain or not.

I want him to feel better but, kinda hoping he doesn't as soon as he has the infusion! :( Hoping it's just a bug that will go away in a day or two and not that he needs an increase in remi. (Ugh, this disease totally messes up what you wish will happen!!!)
 

Jmrogers4

Moderator
Infusion underway. GI does think last couple of days related to crohns and we will be going in six weeks for next infusion, we also talked about doing remi levels in 4 weeks. But the current plan is six weeks and then back to 8 weeks at higher dosage as with the weight gain the current dosage is under the recommended dosage but he says they can shorten time frame under current insurance but need new approval to increase dosage which we would have to get either way as insurance only approved us for 5 doses to start with.
 
I hope the infusion does the trick and he is feeling much better. I didn't know ins. companies could approve meds like remi in that way. Is it just a red tape kind of thing? I really don't handle the ins part, hubby does. He says I hit rude and entitled way too soon...YIKES! I'm not great with the dme either...every time they say they have never heard of someone replacing and discharging the tube daily, I nut up.

I hope Jack is feeling great soon!
 

Jmrogers4

Moderator
You and me both clash, seems like it would be the other way around for pediatric, increase dosage is okay but move up maybe insurance approval, after all aren't these kids supposed to be growing. I just don't understand how something so logical to me has to be met with so much red tape
 
Nathan has been having stomach pains the last couple days too. Last week he wasn't feeling good so we went to see the GI and he thought it was just a stomach bug because of Nathan's symptoms didn't seem like his crohn's symptoms. Nathan started feeling better over the weekend but on Monday he started getting the stomach ache again and this time the pain is where he gets pain when it's a crohn's symptom. I called and talked to the nurse, his GI was in twin falls so I talked to the nurse all day and then his GI called me and said he thinks his stomach bug caused him to flare so we are doing his remicade tomorrow which is only 6 weeks out. Can a virus cause a flare? I hope that's what is wrong and not that the remicade isn't working for the full 8 weeks. We are doing the blood test to see his remicade levels tomorrow before he starts the infusion.
 

Jmrogers4

Moderator
Yes only Dr. Ellison and Thomas were there yesterday. But we have definitely experienced a virus or something setting him off. Usually it's been minor but I'm glad they are getting him in, now that they have two infusion units it made it easier to squeeze us in yesterday. We'll be doing Jack's next infusion in 6 weeks. Was this supposed to be his first full 8 week stretch?
 
yes, this was suppose to be his first full 8 week stretch. He wasn't due for his next remicade treatment until may 2nd. I have a feeling one of these times we might be seeing each other at the Gi office lol.
 

Jmrogers4

Moderator
Probably not, Jack has a baseball game in Nampa at 5:00 so no lunch for me today so I can leave early and get there in time. But he will have one next time :) and they can put them on before they get on the plane for camp.
 

DustyKat

Super Moderator
Fair dinkum me china plate! Do ya think the only lingo we rabbit and pork is strine?! :lol:

Well we do say waffling and some do say wiffle waffling…okay Jm, just own up and admit that you are a dinky di Aussie! Either that or you are channeling one! :eek2:

Dusty. :drink:
 

Jmrogers4

Moderator
okay Jm, just own up and admit that you are a dinky di Aussie! Either that or you are channeling one
Well I don't know but my younger son can do a spot on Aussie accent, so maybe we are secretly channeling, he likes to pull it out a dinner time so that we are all practically spitting out our food from laughing so hard.
 
I think Dusty should start a thread on Aussie speak so we can all pick up those great Aussie phrases!! Love it!
 
Well I don't know but my younger son can do a spot on Aussie accent, so maybe we are secretly channeling, he likes to pull it out a dinner time so that we are all practically spitting out our food from laughing so hard.
We do Irish at our dinner table.:rof:
 

Jmrogers4

Moderator
Just came home from a week trip to Washington DC with some girlfriends and Jack is the same height as me!!! :poop: He is excited for camp, he leaves on Sunday and is looking forward to seeing all his friends. he is feeling really well Hope I whispered that quietly enough so the crohn's fairy doesn't hear.
I know the boys love me but the hugs and kisses are sparse being they are teenage boys but I tell you after a week away they were both hugging me all day long and kissing my cheek and sitting close to me on the couch. Hmmm maybe I need to do more trips with my girlfriends.
 

DustyKat

Super Moderator
Zippety doo dah! That is brilliant Jm! :dusty::dusty::dusty:

Onwards and Upwards (literally!) Jack!

Dusty. xxx
 

Tesscorm

Moderator
Staff member
:dusty: Great news! :dusty: What a nice surprise for you to come home to!!

And, yes, to more 'girls trips'! ;)

Hope he has a great time on his 'trip'! :)
 
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