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Tater Tot and Remicade

Tesscorm

Moderator
Staff member
My daughter is going on her first, unchaperoned, with friends only, vacation in a couple of weeks - they're going to Vegas! :yfaint:

(Actually, I'm a bit jealous! :lol:)
 
I'm up for Vegas and Parents of IBD camp or the beach and camp, or a Podunk town in the middle of nothing...as long as there is wine! Ha
 
Hah Tesscorm I was thinking the same thing and Johnnysmom you are right, we should! Maybe a Parents of IBD cruise!
 

Jmrogers4

Moderator
I have a friend whose daughter has Down's Syndrome and they have a Mommy cruise every year for Parents of Children with Down's.
 

Jmrogers4

Moderator
Just wanted to say Happy 15th Birthday Jack! Today he has his final drive with a parent (me) in driver's ed. He's been off antibiotics for a week and so far so good. He is feeling good (shhh, don't tell the evil crohn's fairy).
 

Tesscorm

Moderator
Staff member
:birthday2: HAVE A GREAT DAY JACK!! :birthday2:

And driving?? :eek2: They're allowed to drive at 15 there? :yfaint:
 

Jmrogers4

Moderator
He still has to do 6 months and 50 hours of driving with a licensed adult 21 or over before he gets his official license, but yeah they can take driver's ed starting at 14 1/2 so they have official license at 15.
 

Tesscorm

Moderator
Staff member
Wow, exciting for them (not so much for the parents! :lol:)...

I don't think you can do any actual driving here until 16 - perhaps take the in-class portion at 15 but nothing behind the wheel before 16 (as far as I know...). (Not that it makes that much of a difference... 15...16 ;))
 

Maya142

Moderator
Staff member
Wow I'm pretty sure you can only start at 16 here and get a provisional license at 17.
:birthday2: Happy Birthday Jack! Hope he has a wonderful day (and the evil crohn's fairy stays far away!).
 

Jmrogers4

Moderator
Just a little update - we have been crazy busy. I started a new job in the counseling office of the high school Jack attends. We've taken a couple of little long weekend trips and Jack has for the most part done incredibly well. We had a few minor EIM's show up in the week before his infusion which was also the first week of school. He is currently at 500ml every 8 weeks.
We had a follow up appointment with the endocrinologist yesterday and we do not need to go back (yeah!) Weight wise he is at percentages he was pre-crohn's. Hovering around the 22%. Height we are still not were we are pre-crohn's but he continues to move up and according to the endo, where most of his peers are slowing down in terms of growth Jack's growth velocity is high and continues to climb (He's grown .25" in the last 2 weeks alone). The endo talked to him about following his GI's orders if he wants to continue growing, make sure he is eating a lot of healthy calories, taking his vitamins (especially D), getting at least 9 hours of sleep. He told him that it could gain him an extra inch if he did those things especially sleep enough. Perfect way to put it to a teenage boy and of course he will listen to the doctor and not his mother when I've told him the same thing.
Wish we would have made the decision to switch to remicade a long time ago but I think all the medications kept enough of his symptoms under control that we never felt it was warranted but in hindsight it apparently was. Now I want it to work forever.
 

Tesscorm

Moderator
Staff member
Great update! :D So glad he's doing so well! :thumright:


And congrats on the new job! BTW, how does he feel about you working at his high school? :eek: But, I suppose you'll really have very little interaction with him during the day (unless he's getting into trouble! I know that's when I spent time in the counselling office! :lol:)
 

Jmrogers4

Moderator
Actually Tess, he loves it because he keeps a drawer full of snacks in my office and drops by between classes to grab a snack and can also use the microwave to make lunch. As you can see it's all about the food :)
He also drives us in the morning and gets to park in my spot right in front of the building instead of the crazy student parking lot
 
Woohoo - so happy for you guys! Especially the news on the growth, since that was one of your biggest worries.

DS has Remicade tomorrow and it always brings Jack to mind. Just the other day DS was asking how he was doing. I'm going to tell him the magic formula is sleep, vitamin d and eating healthy.

How much vitamin d is he doing? Still 1000iu?
 

Jmrogers4

Moderator
Good luck on remicade today.
Yes 1000 but I think he needs to be tested for levels and maybe bumped up. When we go next month for infusion I think I will ask to have labs run on it.
He's really trying on the sleep, came last night at 8:30 and told me he was going to bed
 
If it helps anyone in the future (and I know all kids are different), we just got DS's vitamin D checked on Friday and he's sitting at a 51 in a range of 30-75. Prior to supplementing he was at a 37. He's been supplementing with 2000iu every day for the last year and weighs 100lbs. And that doesn't include 300iu from his multi or from food.

It does make me wonder where our kiddos would be at if they weren't supplementing. I'm guessing on the lower end or below normal.
 

Jmrogers4

Moderator
Been awhile thought I would give an update. Jack had infusion today bumped to 580ml since he is now 128 pounds and wants to keep him at 10ml/kg. Eczema showed up last Thursday so I'm happy with the bump up. This puts him at 50% for weight so where he was pre Crohn's.
Height is 5'7". ESR and CRP are good. AST was nearly double upper end of normal range. GI did not get a chance to review but nurse thought he wouldn't worry unless it came back next labs high again. So all is good and we just keep moving forward.
Jack can take the official test for his driver's license as he has completed his 6 months with his permit. He's very anxious but most days I'm happy to wait another day although I'm sure we'll get it done in the next month.
He has final races this week for ski and snowboard team at school and has started baseball workouts and energy level is great.
 

Maya142

Moderator
Staff member
So glad he's doing well! Hope you survive him getting his driver's license ;) It's really quite convenient when they can drive well and can do errands for you!
 
What awesome news! always love good updates!
My daughter has just started talking about getting her permit and I am not sure I am ready. We made her older brother wait until he was 18. Good luck with the driving test! I am sure he will do great!
 

DustyKat

Super Moderator
Thanks for the update Jm and what a brilliant one it is! I am so happy for you and Jack! :dusty::dusty::dusty:

:mademyday:

Dusty. xxx
 
Awesome update!

Definitely take advantage of that license. I remember when my oldest got hers. Suddenly running to the market to get me the little things I forgot was a treat! Didn't last long but was good while it lasted. O is already talking about the license...she is not ready...nor I!

Eczema??? Just watch it. They thought O had eczema also until it got worse and we went to the ped derm at the hospital who confirmed it was Remicade induced psoriasis. Not that it matters much. Nothing you could do about it but with psoriasis comes a host of other things you have to watch so helps to know what you are dealing with.
 

Tesscorm

Moderator
Staff member
Great update!!! So nice to hear he's doing so well and just enjoying life to it's fullest!! :D

And, I'm with Maya... the driving is scary at first but... then the conveniences become quite nice! :ytongue:
 

my little penguin

Moderator
Staff member
^^^ yeah that second the watch for skin induced stuff
DS had drug induced rashes from remicade ( atopic dermatisis , blisters etc...)
He was goid on Humira for a while until we upped the dose and added MTX .
 

Jmrogers4

Moderator
It's always something, isn't it? He came out last night with a bump on his chin and said I think something bit me (definitely was not a zit) appeared out of nowhere, not other spots. I'm choosing to bury my head and say it's just some weird random thing until something else tells me otherwise.
The eczema spot showed up last week and same spots he gets when Crohn's is active so hoping it is just that and bump in dosage will alleviate but will definitely keep an eye on it.
GI did say he thinks it would be a good idea to go ahead and start him on his daily claritin for the season as yes (I'm sorry all my friends in the midwest, East and Northeast) things are starting to bloom. I have noticed an increase in his coughing so we'll be adding that in for the time being and hope it helps any other allergies :)
 
RUDE!

Does the bump on the chin look like a pimple but not a pimple? I know that was really clear wasn't it? Could be folliculitis. We deal with that a lot over here. Not much you can do about it. Just keep it clean and strict hand washing etc. Same disclaimer...watch it. May show in other places also.
 
Love to hear the good updates with kids on remicade!! N Had his infusion 2 weeks ago, he didn't gain any weight this time but grew a half inch. It seems like one appointment he gains weight then the next one he grows. Did you sign Jack up for Camp? I just mailed off N's application the other day. How exciting and scary about Jack getting his license lol. N will get his permit next week, he has 1 more drivers ed class then he takes his test. He is so excited to drive!
 

Jmrogers4

Moderator
Griffin123 - Just got everything signed off yesterday at GI's. Stamps on the envelope and will pop it in the mail tomorrow. He'll be excited Nathan's going. We were just wondering yesterday at GI's if Nathan was going and I told Stacy I was going to send you a message to find out.
This time was a big weight gain for Jack so figure he's getting ready for another big growth spurt up.

CIC - spot is gone so I'm hoping for just a random weird thing and we won't see anything else.
 
What an awesome update!

If it's any consolation, DS gets a "thing" about two weeks after every infusion on his face. It looks like a pimple, but nothing and I mean nothing helps it. We've tried everything. It's like a little nodule, kind of hard, a little painful to touch. The location varies. After another two weeks or so it just goes away. I have no explanation for it except for the timing with his Remicade infusion. He goes in next week and I'm hoping he'll let me take a photo of it this time around.

Things are def not blooming here. Neg 40 degree windchill this morning at the bus stop! Can I come visit you??
 

Jmrogers4

Moderator
Having flashbacks today. It has been exactly 5 years since Jack was diagnosed. Can't believe that so much time has passed and I didn't know if we would ever get to the point we are at now, at times it seemed hopeless. A healthy, growing teenage boy. Our lives are not consumed by Crohn's disease and most days we don't even think about it. We don't check every stool. While we eat pretty healthy we aren't overly concerned if he eats junk food one day. He was able to go away on a school ski trip last weekend and I was more concerned about him breaking a bone than I was with any issue happening from Crohn's (especially since his brother broke his arm snowboarding the day before he left on his trip).
I hope each and everyone of your kids if they are not currently enjoying remission find that magic and reach it soon and for a long time.
Also want to thank all you amazing people on this forum, you have been a lifeline in bad times, and provided a laugh when I didn't think it was possible.
 

DustyKat

Super Moderator
This is a fabulous update Jm and such a joy to read! :ghug:

I hope it lasts a lifetime for your lad, bless him. :heart:

Onwards and Upwards Jack!

Dusty. xxx
 

Tesscorm

Moderator
Staff member
So great to read a post like this!! :D

It is so scary when all is not well and it feels like you, your child, your family will never get back to normal! And, I couldn't agree with you more that the friends I've made here have been lifelines during worrying times!

(knock on wood) We're in the same spot with S... Can only add to your wishes that all will eventually get here and we'll all stay here for a long time!!!

Thanks for posting! :D
 

Jmrogers4

Moderator
I wasn't going to post anything because I still think it's going to be nothing but it's been eating at me all day. Jack is down 7 pounds over the last 16 weeks. He's gained about a 1/2" in height in the last 8 weeks since last infusion.
All his labs are normal (go figure) but GI was concerned enough to get a FC, just says with Jack's history of being asymptomatic it would allow him to sleep at night if it comes back low. I think it's just because he is working out. He fells great and really doesn't have any symptoms, appetite is down a little over the last several weeks but nothing alarming.
So here's my take on it and see if committee agrees with me and I can stick my head back in the sand.
I think he was having back to back growth spurts and you know how kids gain weight then shoot up in height. I'm thinking he is just done with the massive catch up and is kinda just hitting normal growth velocity???? and is just meant to be a lanky kid. His brother for what it's worth is 5'7" and 127 pounds, Jack is officially 5'8.5" and 123 pounds.
 
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Catherine

Moderator
If he is eating enough working out as a thin kid should cause him to gain weight not lose.

My experience has been exercise increase appetite when healthy and the child gain weight.

Stick your head in the sand, he just needs to eat more. No worrying to the FC results come back.
 
Kids his age are designed to gain weight and would have a very hard time losing weight especially 7 pounds.
Fingers crossed on the fc results come back soon
 
I would keep my head in the sand too. Working out and growing in height sounds like a good reason for losing weight. Hope the FC comes back low.
 
7 pounds sounds like a lot to me especially since the growth alone should result in a bit of a gain. You aren't totally putting your head in the sand. You are doing the responsible thing and pulling an FC. That is all you could do. No cause for freaking and safe to play in the sand. Wait till those FC numbers come in and worst case there is a bit of inflammation. The beauty of Remicade is the flexibility to increase dose or shorten schedule to put out that inflammation.
 
Once again, we're living parallel lives. DS lost five pounds since his last infusion six weeks ago. He had his infusion on Monday (along with Solumedrol) and then on Tuesday his appetite was back in full force. Maybe it will be the same for Jack?

Every time I think I've got this disease figured out, it throws another curve ball.
 

Tesscorm

Moderator
Staff member
Now that the weather has improved, has he been outside more? More physically active (on top of his regular exercise)? ie bike riding, pick-up sports with friends, swimming, etc.

Not crohns related but when my daughter was younger, aside from normal growth patterns, she always lost weight over the summer and gained a bit in the winter.

But, always good to check... glad you'll be getting some FC results to consider (hope they're good!). :)
 

Jmrogers4

Moderator
Thanks everyone, it seems like the committee is on the same page as me. Yes it's troubling but until I get further information I'm trying not to go "there". IF fc shows inflammation we talked about doing an MRE. You can't tell the weight loss to look at him so for now I guess we'll just monitor.
Activity level was definitely up the last couple of weeks and it been really hot already, yesterday was 99F we usually don't see those temps till July. He is out mowing lawns right now before it gets too hot!
In the meantime I'm going to find somewhere to stick my head (and toes) in the sand and enjoy the summer
 

Jmrogers4

Moderator
FC is back and it is 68!!!! so just watching weight and figuring it is a fluke or something. So I'm sticking my head back in the sand. Jack is heading off to Camp on Sunday and I'm chaperoning the flight so that means I get to spend a week in Seattle sans children having a great time.
 
What great news! I bet that at least some of the weight loss was dehydration--it's been such a warm spring in the NW this year.

Enjoy your week off! My husband and I are staying up in Puget Sound for a few days too, after we drop off E at camp. My mother-in-law is going to watch our younger daughter. It will be our first vacation since E got sick last fall, and I'm looking forward to having no responsibilities for a few days!
 

Jmrogers4

Moderator
Hope you're right pdx, enjoy your mini vaca. Looks like the weather is going to be nice and a little cooler than here where we are already in the high 90's and already had a 100 degree day.
Hope E has a great time a camp.
 

Tesscorm

Moderator
Staff member
Great news! So glad there's nothing to worry about! :D

And, enjoy your vacation! A week away sounds fantastic!! (for you and PDX! ;))
 

Jmrogers4

Moderator
So Jack turned 16 last Friday (YIKES). He had infusion yesterday and has grown another 1/2 inch but lost a pound currently 122 pounds. He appears healthy, is eating and has no symptoms.

So it's still the question of is he just supposed to be one of those skinny people... but it is concerning enough to his GI that if he hasn't gained by next infusion that he wants to schedule MRE to make sure nothing is going on. I honestly don't know what to think he seems healthy than he has ever been.

They did rapid infusion on him for the first time yesterday so infused in an hour, he seemed to handle it well and from what GI's office says that is the way they are going for kids who have had many infusions and no issues. We were completely done in 2 hours time which actually might be nice with his school load this year and not having to miss as many classes. But I was chewing my knuckles the whole time and watching him.
 

Maya142

Moderator
Staff member
Glad things went well! Happy Birthday Jack - hope he had a wonderful day!

My daughter also seems to be one of those skinny kids - she has recently gained nearly 20 lbs with her NJ tube and is still technically a pound underweight I think!

Hope the MRE shows absolutely nothing.
 
Happy birthday Jack! Glad to hear the rapid infusion went well! Hope the weight thing is just a skinny kid thing!

C is not gaining. We have a scope coming up in November so we'll see then I guess. He's juggling a job, a gf, social life and college starting soon with ease so I'm hoping he's got the skinny kid thing going on too!
 
Hugs
And happy b day
Hope he gains weight soon
Last appt gi took a similar look at Lp growth chart
Was ok for now since he weight finally stabilized at least
He had been losing ( but he is on partial en plus crohns exclusive diet as treatment )
Paying more attn to food plus shake intake now
Hopefully Lp will gain soon as well
 

Jmrogers4

Moderator
No supplemental shakes for right now but have talked to him about how but it might be a good idea, he's not very keen on it but he really doesn't want MRE because of the barium so might be enough to sway him that he needs additional calories/nutrition
 
Happy birthday to Jack!

E is also a member of the skinny kid club. She hasn't gained since she stopped supplemental EN. We are trying to add high calorie foods to her diet, but we may need to try shakes soon.

That's interesting about the rapid infusion. I would have been nervous too, but getting out in 2 hours would be nice.

Maya--that's so great that your daughter is doing so well on the NJ tube. 20 pounds is fantastic!
 

Tesscorm

Moderator
Staff member
Happy belated birthday to Jack!! :birthday2: Wow, 16!!

S really began to 'fill in' at around 17-18... you may see a big difference in the next couple of years! And, yes, I'm assuming all will be fine and he's just a skinny one, waiting to fill in! :hug:

And love the new pic! It certainly has been a while that we've been here... I remember one of the older pics you had... he was just a boy; now he looks so much more like a young man. :)
 

Maya142

Moderator
Staff member
Maya--that's so great that your daughter is doing so well on the NJ tube. 20 pounds is fantastic!
It is wonderful (82 lbs to 100 lbs so far!) - we are switching to a GJ tube and I'm happy to say she will stay on formula for a while. I suspect if she still had an NG tube we might be fighting about supplemental EN now that her Crohn's is under control.

Jmrogers4 - perhaps he could try and tolerate a variety of shakes to help with the taste? Maybe he can tolerate things like Ensure and Boost since he's doing better? I know of some kids at our infusion center who had to have Peptamen Jr while flaring but now tolerate kid's Boost now that they're in remission.
 
Hope the GJ tube insertion goes well, Maya. Will it require a hospital stay? I'm sure it will be an adjustment for your daughter, but I bet she is happy to be almost done with the NJ tube.

(Sorry to hijack, Jacqui!)
 

Maya142

Moderator
Staff member
Sorry Jacqui, I should update M's thread!

GJ tube is supposed to be outpatient if all goes well. She may need to stay overnight, but right now we're really hoping to manage everything outpatient. We'll know more when we meet an interventional radiologist later in the month. Thanks for asking pdx, hope your girl is doing well.
 
First can I say how adorable he is?! He has really grown up!

Hate to say it but height is supposed to bring weight with it. I remember when O was growing but weight was stagnant the Gi said he actually considered that a loss because height brings weight. That said, growing up is great! Inflammation usually attacks growth and if he is growing I would be leaning toward skinny kid. That was our GI's theory with O and I'll be darned he was right because she has put on 10 pounds in the past few months with no growth. Just whammo she started packing it on.

On the shake front. If you are doing it simply for weight gain you could also try Carnation Instant Breakfast. Pretty high in calories and yummy. They tried that with me when I was a kid. BTW - it didn't work...just a skinny kid. I think you mentioned he is lifting weights and such??? How about a good protein shake as well? Lots of different options if you main concern isn't inflammation but the EN formulas do boost Remicade performance so......

...and T is the same as Jack. She would eat dog poop on a cracker to avoid the MRE again.
 
Happy Birthday! I second trying the carnation instant breakfast. I think they are pretty good though Caitlyn refused to try them. But she is really stubborn! Can't believe how fast our kids are growing up!!!!
 
Happy belated birthday to Jack!

Interesting that you should bring up the lack of growth thing again. DS has petered out too. Its so tricky, especially as they get older. My husband is over six feet, but said most of his growth didn't happen until age 17-21. While our GI is slightly concerned, he can't rule out that DS isn't following dad's footsteps, so we're taking a wait and see approach right now.

Does your husband recall when he had growth spurts as a teen?
 

Jmrogers4

Moderator
Dad is 6'1" and has been since about 10/11th grade. Height is still going just not as quickly on 1/2" instead of the 1-2" it's been which I think is fine. I think he's done the "catch up" and is just leveling out so even if he only grows another inch each year until he's 18 (although endo & GI think he will continue with growth after 18) which would put him at 5'11"
He's even about an 1/2-1" taller than his younger brother, which he is thrilled about and about an inch shorter than his best friend.
It's kind of amazing to see people's reactions who have not seen him for a while. We stayed with some friends who have not seen him since July last year and she just couldn't believe it kept looking at him and laughing saying he's so tall.
 

DustyKat

Super Moderator
Woohoo! Happy Birthday to Jack! :dusty::dusty::dusty:



I hope his day was filled with loads of love, fun and laughter! :):):)

Wowser! What a change in your lad, he looks fabulous! :heart:

Dusty. xxx
 
Happy belated birthday! I am also holding out hope my son will grow in the next couple years. He is 16 so getting concerned - his sister is almost as tall and she is 12!! Hope you can get some extra calories into him - it would be a struggle to drink these supplemental things for us too!
 

Jmrogers4

Moderator
Been a long time since I updated on her mostly because things have been great but knew it wouldn't last forever. Jack had his infusion yesterday and his ESR & CRP are creeping up and getting to previous levels at least for him they are at numbers in the past that have correlated with flares and inflammation present. We have decided to shorten the time between infusions to every 7 weeks. He was at 129 pounds last infusion and 123 this time. First thing nurse asked him before he even got on the scale was had he lost weight because he looked skinnier.
Of course, no symptoms to give us a heads up. Talking about MRE this summer unless it's warranted earlier.
Just hoping this change is the nudge his body needs to keep him in remission.
 
Hope that the increased frequency does the trick. Any chance of doing a levels test at the next infusion?
 

Jmrogers4

Moderator
Just had them done and they were within acceptable levels, GI is just thinking that maybe he needs to be in the upper levels for it to keep everything in check if that makes sense. Which the way he metabolized other meds I guess it makes a little sense. Still working with insurance and lab to get testing paid for on the last test so I'm sure insurance would not be thrilled.
 
WAs the levels test done through Prometheus? If so they will handle the appeal for you. Also they only charge $2500 for the first test. Subsequent tests are billed at $350.

Gosh! I hope your doc is right about his hunch about his personal level. Are you adding anything else in the meanwhile to help ie: een, steroids? I think he can't do mtx or imuran right?
 

Tesscorm

Moderator
Staff member
Ugh, Horrible when that other shoe actually drops! :(

I hope it's quickly brought under control! Perhaps an earlier MRE would help determine the best course forward??

Hugs... :ghug:
 

Maya142

Moderator
Staff member
Really hope increasing the frequency helps. M went up to 20mg/kg every 4 weeks - "high dose Remicade" for her joints. I was very worried about infections but she was perfectly fine.

Hope he starts gaining some weight soon :ghug:.
 

Jmrogers4

Moderator
I think MRE will be done if he doesn't respond to increase. Jack hates MRE, well he hates the MRE drink - doesn't mind the MRE itself and his GI knows that so he basically told Jack we could see how the 7 weeks works but that he would have to have one sometime between summer and end of the year just for status and he will be due for a check even if everything is fantastic.
So now that the seed has been planted and he knows he is going to have to do it eventually this year, it'll be easier to convince that stubborn teenage brain to just get it done if there are still problems. KWIM?
Hoping this is just a little blip and I can go live in my castle again.
 

Tesscorm

Moderator
Staff member
yes, makes sense to try the 7 week cycle and then see how things look. Because, really, even if an MRE were to show some inflammation, moving remicade up (or increase dose) would likely be the next plan of action anyway. Just as well to see how things are AFTER taking that action. :)

But, would be good to see him start to gain weight after moving to 7 weeks. ;)

No chance he's lost weight for some other reason, activity, etc.??? but, of course, there are also those creeping CRP/ESR numbers... :(
 

Jmrogers4

Moderator
Activity level has remained steady, weight room/gym on Tuesday & Thursday. Baseball practice on Mon, Wed & Friday. He, of course, denies feeling any different but his best friend let something slip that he was not feeling well at baseball on Friday and said Jack wanted to punch himself in the gut but then it would just hurt more.
I didn't say anything to Jack but I'm watching him a little more closely though likely with just getting infusion he will be fantastic at least for a while.
 

Tesscorm

Moderator
Staff member
Don't you love when they forget to mention something! :ybatty: No matter how much you try to get the full picture from them, there's always that thing that they forgot or didn't think was important! :lol: Ugh!

Well, I'm sure you've got your eagle eyes on him now! :shifty-t:

But, hope you don't see 'anything' because the new remi cycle does it's job! :)
 
Really hope the 7 weeks helps. It is frustrating when they don't mention symptoms although I suppose they don't realise just how paranoid we all are!
 
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