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Tater Tot and Remicade

Jmrogers4

Moderator
MRI Results are back - narrowing and inflammation at TI and up into small intestine so we are jumping on the remicade train.
GI is going to start working on insurance approval. Have had myself a little cry and moving on. Hoping this does the trick and gets everything under control.
One part of the TI where inflammation is present now he was able to see with scopes in February and it was clear. So I do believe that he was absolutely in remission at that time unfortunately he just didn't stay there long. I think the C-diff set him off and his body just hasn't been able to regain control. So while we have to shelf LDN for now. I think he can come back to it some day.
 
I have always wondered if GI's that accept LDN would combine with the biologic like other GI's use MTX, etc. Of course you don't need to do that now. Remicade will most likely be all your son needs. I wish my son didn't have an allergic reaction because I think GI's feel it is the best one out there. I hope you get things in a good place soon :)
 
Oh sorry JM but welcome aboard the party train! O has been in remission for almost a year and a half on Remi. Gained gobs of weight and grew like a weed too! I hope it has the exact same affect for Jack!
 
Hope it works great for him! Like you said just because the LDN stopped working for now it doesn't mean forever. Maybe at a future date you can try it again Will keep my fingers quadrupled crossed that all goes smoothly with the remicade. Do you know when his first appt will be yet?
 

Jmrogers4

Moderator
No idea Kim, I don't know how long it takes to get insurance approval. I'm kind of figuring nothing is going to happen until the new year. He has a tripped planned up to Seattle with G-Ma & Papa to see a Seahawks football game with his uncle that he is really excited about Dec. 26-30 (He has to be home in time for his 8:30 am Endocrinologist appt on the 31st).
I'm ready for 2014 and a new year with some healthy kids!
 
Hugs, we're thinking the same thing with LDN. I'm so thankful we tried LDN and I DO NOT REGRET IT! Maybe a few years down the road. we'll try it again. Of course we're hoping for a cure by then.


My Christmas Wish for You,
I hope the new drug helps and your boy is back to driving you nuts in the new year ahead.
 

Jmrogers4

Moderator
I'm so thankful we tried LDN and I DO NOT REGRET IT!
Absolutely. We did achieve remission on it and I'm assuming if the antibiotics/C-diff never happened we would still be there. He just needs a little more right now I think. Who knows if we gave it long enough the LDN may have been able to get things back under control I just don't think we have the luxury of waiting much longer. This boy needs to grow! I want to be able to look up to him (literally) in 2014.
 

Jmrogers4

Moderator
Had a message from the GI's office, I'm supposed to take him to the GI on Monday for a TB test (they are not open on Fridays) so they can read the test on Thursday and get started on remicade :eek:
 

my little penguin

Moderator
Staff member
Yep- that was about it for DS as well.
Things to consider-remicade is considered a "procedure " just like a scope so it goes through medical insurance not prescription plan
so if you have an 80/20 plan - you have to cover the 20%.
Unless you use remistart ;)

then its less for a year.
 

Jmrogers4

Moderator
Good to know, I think we are 80/20 until deductible met. My plan year is Aug-July so deductible met with MRI.
Jack wants to know what is involved with TB test?
 

my little penguin

Moderator
Staff member
An injection under the skin of the forearm.
Wait 48-72 hours to read it for a bump.
DS didn't like it but he wasn't expecting the shot
I thought it was a scratch test ..opps !


We tend to meet the deductible by feb -- mar range but they keep raising it every single year ....
 
Hi. I hope Remi works. So far so good for my daughter. one year on remission and no problems. TB test is just a little sting in the arm and they will check for a reaction in two days I believe. He is not supposed to touch or scratch, but they will explain that to you. For infusion day I give my daughter things to eat and drink. she takes her computer and games and that helps her keep her blood pressure good. If you have any questions feel free to ask. Best wishes.
 
TB test is a tiny stick just under the skin. Its really simple. Nothing like a shot. I had one a few years back as a requirement for a job, it doesn't hurt at all.
 
DS had a TB blood test... quantiferon-tb. He didn't do the skin test, but I think it was because his GI didn't want to wait two days since he was starting Remicade ASAP.
 

Jmrogers4

Moderator
So they poke and check it a couple of days later? He may have to wait until after holidays unless we can get him in today since he is leaving on Thursday for Seattle and I really don't want to tell him he can't go it would break his heart. He has been looking forward to this. We already cancelled a trip to Seattle once the first weekend in November to watch the Seahawks and he is hoping they make it to the Superbowl this year.
Do most of your kids that are on remicade get it done at the hospital or at infusion centers? I'm going to ask if he has other kids that go to the Children's hospital to have it done. Of course I know have a 1000 questions and it is moving really fast....
 
When we did Remicade they told us if we did it outside the infusion center (which was attached to the hospital anyways) and done in the actual hospital, we would have to be admitted. It already takes so long...and getting released after being admitted is always such a waiting game. So that is why we did infusion center.
 
Ask about the blood draw version of the TB test. I don't know how it differs from the skin test exactly, but it's worth asking if time is critical.

Our first Remi was inpatient because the infusion center was full and they didn't want to make DS wait any longer than they had to. Like Kathy said, it's time consuming for admittance, discharge, etc.

The next two times we went to infusion centers, one at an adult clinic and one attached, but not in, our children's hospital. By far the best place was the children's infusion center. Pediatric nurses, fun kid stuff, and you're in and out.

You might want to check with insurance too. Sometimes location influences the cost. Definitely pick one location and stick with it though. Because we went to three different locations, it's messing up Remistart paperwork.

DS is excited for Jack. Hope it's his miracle med!
 

Jmrogers4

Moderator
TB test done. I got to talk to the nurse and she asked if doctor had told me anything about infusion - nope just said they would get started on insurance approval. They do them in the GI's office, they have an infusion room so there is one worry down.
He is down 3 more pounds :( He says it hurts when he eats and he is getting full really fast. We'll increase the shakes again.
 
My daugther's is done at Children's Oncology center. One thing that I am always on top, is that they do the infusion at a slow pace, some times they want to kick out patients fast and kids get sick. I have known of some cases. One nurse told me that blood pressure should not go lower than 20 points from the first reading.
 
I hope Remicade is your miracle for 2014! My son has grown a little over 3" this last year on Remicade after not growing at all for one year.

My son now kinda looks forward to our regular routine - he gets movies to watch that his younger brother can't see and we just veg out!

I would wait and register for Remistart once you are paying out-of-pocket. It does only cover 1 year and then you have to reapply. My last 2 infusions on our insurance year are finally covered by insurance, so I don't need Remistart. Great to have it once you are back to working on your deductible.

Good Luck!
 

Jmrogers4

Moderator
Insurance just called to tell us we have been approved for remicade. Went back this morning for TB check, no TB so now we just wait for GI's call to set up schedule - Yikes!
 

Jmrogers4

Moderator
UGGGH!!! Mother-in-law just called Jack is laying on the couch at his Uncle's house and is coughing and saying his stomach hurts! They are up in Seattle. I did send some Levsin with Jack just in case. I think I will try and skype with him so I can look at him and see if he is bad or it's just a cold. Hoping it is just a virus.... No call from GI's office yet so no start date on remicade
 
UGGGH!!! Mother-in-law just called Jack is laying on the couch at his Uncle's house and is coughing and saying his stomach hurts! They are up in Seattle. I did send some Levsin with Jack just in case. I think I will try and skype with him so I can look at him and see if he is bad or it's just a cold. Hoping it is just a virus.... No call from GI's office yet so no start date on remicade
Starting a biologic this time of year is a bit stressful anyway. With remicade you don't want to miss a loading dose infusion...so its probably best you haven't started yet
 
Is Jack any better today?? Still living in hope that we will avoid the remi train, but probs hopping on in early Feb. All the best!! :ghug:
 

Jmrogers4

Moderator
I haven't heard from them today, so I'm assuming he is feeling better and they are out having fun. They will probably call in the next couple of hours. I think it is a combo of cold/CD as he has definitely had increasing symptoms this month. He has only been back on Imuran for a couple of weeks so I don't think that has had time to kick in and we will stop that before remicade so it probably wont have a chance to become theraputic. He is mostly drinking shakes with just small meals.
I also found out they had gone out to chinese food and he had sweet and sour pork so I'm sure that contributed to stomach pain. They were going for noodles today at one of his favorite noodle shops in Seattle so hopefully that will be better.
 

Jmrogers4

Moderator
We go tomorrow to Endo, he is on his way home from Seattle right now. He had a great time at the Seahawks game, kept texting and sending pictures to me. He also got to see one of his friends from Camp Oasis while he was up there. Just got off the phone with GI's nurse and we have the first two infusions scheduled. 9th and 23rd
 

Jmrogers4

Moderator
Endo appt went well, he appears to be at the start of Tanner Stage III (YEAH), Endo says growth usually happens towards end of Stage III. We will be doing bone scan, thyroid and HGH testing within the next week. Based on my height and dad's and definite lack of growth he is not where he should be. Discussed doing a course of HGH depending on bone age if it shows younger then 14 and if he does not have a lot of HGH in his body. So I guess we'll see maybe we won't need to do anything and he will start growing any day....
 

Tesscorm

Moderator
Staff member
Stephen had a huge growth spurt at 14-16 years. He was always one of the smaller kids, both in height and weight but, once he started high school, literally grew a foot in a year (and then kept growing, but the rate slowed considerably)!

Hope 2014 brings about a sudden growth spurt! :thumright:
 
Just a word of caution, depending on the testing, many normal children may look like they are gh deficient. GH is a pulsatile nocturnal hormone. There are different meds that can be given to stimulate GH but normal children may fail these tests. And yes, endocrinologists know this but many just like treating kids with GH and you can only get it reimbursed if you do testing. If you are told that he failed the test, ask how much more growth you should expect from GH therapy, cause it is shots and like any med, has potential side effects.
 

Jmrogers4

Moderator
First loading dose this morning, all went well with no problems they started the infusion slowly and increased the speed every 10 minutes until it was at the max rate.
He felt fine through it all and it was done at the GI's office with our regular nurse so he was really comfortable with her and his GI came in at the beginning and popped his head in a few more times throughout just to check on him. He is tired now and his eyes keep closing as he is laying on the couch watching TV but otherwise seems fine.
We went to a movie afterward, talked him into seeing Disney's Frozen
 
I'm glad it went well.

How was the movie. I was thinking of renting it when it comes out. It looks like Grace would like it.
 
FW,
Frozen was the best Disney movie in a long time! highly recommend going to see it. Caitlyn saw it three times and knows all the songs by heart!
 

Jmrogers4

Moderator
He is saying his head is hurting now I'm pretty sure I've read on here that is a fairly common side effect?

FW - Definite rental, although with all your recent weather it is a perfect time to be Princess/Queen Elsa or Princess Anna. The music was also really good.

Glass (or 2) of wine already down :wine:

He cracked us all up this morning, they finished checking us in and I said "okay Jack" and started to walk over to sit down, he thought I was leaving and said "You're not leaving your diseased child, are you?" The receptionist and I looked at him and just busted up laughing. I told him I'm just going to sit down.
 
So glad it went well. The Benedryl usually make DS tired, but he fights it just so he can play video games the whole time. He usually zonks out in the car. I'm surprised Jack made it through a movie to boot!
 

Jmrogers4

Moderator
No benedryl, which usually would knock him out within a 1/2 hour, thinking it will be an early night for him though (and me as well) Glad tomorrow is Friday
 
I'm glad it all went well. I keep saying it is the benedryl that makes C tired but he says they don't give him benedryl. Since I'm not back there I have no idea, they started out giving it to him but hey maybe he's the expert and knows.

I want to see frozen as well!
 
Glad to hear all went well. H usually gets tired and a headache day of infusion. Next day all is well. Also surprised he made it thru the movie. H tried to go to school after the last one. He had to come home cuz he was falling asleep in class and was getting a headache.
Hope jack wakes up feeling great!
 
Yeah, O's doc stopped premedicating with Benedryl a while ago. Thank God because it zonked her out totally. Ever since that stopped she has been fine.

She had infusion today and 3 boys in the room all agreed they get tired....hmmm...could it be a boy thing? Ya know like all that driving and sitting around doing nothing would make any energetic teenage boy zapped. I know I am totally exhausted after infusions...I hate the long boring drive and all that sitting!

Now you and those three boys have me nervous as O has a huge track meet today after school...She can NOT be tired!
 

Maya142

Moderator
Staff member
My daughter is always tired the day of the infusion and the day after. At our infusion center, the nurses always tell us that being tired and achey the day after is very common. One of her friends also has Crohn's and is on Remicade and feels the same way after her infusions. It probably just depends on the kid.
 

Jmrogers4

Moderator
I'm almost afraid to post but... Jack weighed 91 pounds on Thursday at infusion as of last night 96 pounds!! and he is eating! and he is even telling me he is hungry! He ate more of the weekend but was running around, had ski races all day on Saturday and my hubby kept saying he looks pudgier. Yesterday morning he comes out from getting ready and says I'm hungry can I have breakfast instead of a shake :eek2:, ate a huge bowl of rice krispies and a bagel. Last night at dinner he had seconds :yfaint: and since there wasn't anymore left after that, he ate a corndog.
He has more energy - I guess I didn't realize how tired he was, last weekend after going up just for his ski race (so maybe 2 hours) he came home and slept on the couch for 5 hours. This weekend he went up early boarded with his friends before the race, raced, came home (about 6 hours) and stayed awake and still had tons of energy.
You can all say I told you so.... I wish we would have done this sooner..
 

DustyKat

Super Moderator
Oh wow, that is brilliant Jm! I am so, so happy for you you all! Long may it continue. :mademyday:

Onwards and Upwards. :ybiggrin:

Dusty. xxx
 
I have to say, this post couldn't have come at a better time for me, as we do bloodwork next week and meet our ped GI to start the ball rolling on remi for my son.... just so relieved to see how well Jack is doing! You must be over the moon!!
 

Jmrogers4

Moderator
THE BIG GINS!
:ylol::ylol: Oh how you read my mind and didn't even know it.. Celebration with a little gin and tonic. This needs bigger guns then wine.

LJS - It took me a looong time to pull the trigger, there was always that well he's not that bad but obviously now the lack of growth/appetite was a big flag for us. Can't believe the difference even after 1 dose.

I can't wait for next week when they weigh him before his infusion and will be excited to see his labs :)
 
Lots of people have avoided surgery through remicade. Before remicade they only had imuran, people who failed on imuran were treated with surgery. I got crohn's disease around when remicade came out. It is an extremely effective medication if other treatment has failed, it still has the highest remission rates of any crohn's disease treatment to date.
 

Jmrogers4

Moderator
Just had a call back from endocrinologist, bone age is 13 so about 1-1 1/2 years behind. He was low enough in Hgh that we could do further testing on it but we talked about the Remi and how he is eating now so maybe we don't need to do anything. We have a follow up in April and can re-evaluate if we need to do further testing or we can do it now. What do you guys think? It would be an all day test so he would miss another day of school and for him it's more tests... I'm I okay in waiting and seeing where we are at then?
 
I think I would wait too. Even though C's weight still fluctuates, his height has really done well overall since starting Remicade. I will say it has been slow and steady and I do think that his disease state has played a role, tweaking doses, schedules and adding meds.
 

my little penguin

Moderator
Staff member
Remicade is strong so I would wait to "see" what it can do since its only till April
You will have a better idea by then.
One thing that indicated DS was going to grow was nail growth.
Once on remicade I had to cut his ginger nails all the time .
 

Jmrogers4

Moderator
GI nurse called to tell me that Jack's labs all look fine from labs taken at last infusion and then she said that the GI told her to say "of course" after labs look fine because Jack's labs always look fine. I don't know exact numbers, they'll print me a copy since I can't see any of his stuff on "mychart" anymore since he is over 14. I was complaining to the nurse about that and she said she would fix it tomorrow while we were in the office in other words give Jack (me) his own sign-in/pin #.
Imuran may not be doing the trick for hubby anymore :( He just had labs and his liver numbers were all out of whack. Go for prometheus liver something or other test. He has been on it for years would it just all the sudden start affecting his liver?
 
That's awesome news about Jack. My son had his PPD (TB) test yesterday, we go for bloodwork on Friday and then meet with doc right afterwards to start the remicade discussion.

Has anyone had their child complain of burning sensation after the PPD test? Not in their arm, but in their legs! My son said his inner thighs have been burning since, but I see nothing there.. I left a message for the nurse to call me and I doubt it's anything to worry about but was wondering if anyone has come across this.

thanks,
Lin
 
:smile:I'm glad about the test for Jack but bummed for your hubby.
See what these men do to us.:ymad: One gets well and the other gets worse.
And they wonder why we get tired and irritable.:yfaint:
 
He has been on it for years would it just all the sudden start affecting his liver?
I hate to say it, but isn't that the whole reason people on Aza/Imuran/6MP get their bloods checked regularly? Cuz it can happen at any time, right?

Does he have an idea on what he might do next? Father/son infusions?
 

Jmrogers4

Moderator
Just goes to show you sometimes you just don't know what is going on inside their heads. Jack has been going to practices every morning at 6am for baseball in order to try out for the baseball team at his school, because he is a young freshman he is eligible to play on the 8th grade team and the baseball coach has asked him to play over president's day weekend in a tournament that is 8 hours away (he is driving down with coach and staying in a hotel room with 3 other freshman boys that are also eligible - I'm a little freaked out about him going as next infusion is the thursday after he gets back but I'm trying to keep it under control and let him do normal stuff). So anyways, today was the first practice with this new team and they do a lot of conditioning, I came early to pick him up and he was really struggling to do all the exercises and it made me realize how bad these last 6 months have been and he has not gotten a lot of exercise. So talking about him working out and building his strength back up over breakfast his comment was - I don't want to do too much because I want to get to 100lbs, he thought if he exercised he would loose weight. Poor boy! I've convinced him he would be healthier if he did some conditioning and strengthening exercises. I had no idea why he had quit riding his bike all around and asking to go do things - He was worried about loosing weight.
We also went to a coffee shop this morning after, he wanted a hot cider so I ordered a coffee and a cider. The barrista hands me the coffee and the. cider (in a kids cup with plastic kiddie lid and straw). I just looked at him handed Jack the coffee took the cider, took a sip and said Thanks - the look of horror on his face :lol2: that's what he gets for assuming Jack was a young kid. We laughed about it for 1/2 hour but Jack said it still kind of upset him that someone would think he was so young
 

DustyKat

Super Moderator
Oh bless him Jm. What a treasure he is and doesn’t it just break your heart to realise what he has thinking. :heart:

Way to go mum! That is fab! :lol: And squishy hugs to your lad. :ghug:

Dusty. xxx
 
What a shame he's been worrying about losing weight like that. Amazing what can go on in their heads sometimes. I remember my daughter telling me she didn't want to do sit ups because someone told her it would make her fat. :ybatty: And here I spent all those years doing sit ups to flatten my stomach.
Hope his fitness improves and he enjoys the baseball.
 
We really are living somewhat parallel lives Jacquie, although my son is afraid of getting fat! He really wants to grow taller but is afraid that if he gains weight from remicade and he doesn't grow taller, he will get fat!! Amazing what goes on his head. But I love the story of the coffee and cider - way to go mom! LOL
 
I like the way you handled that!

People just don't think. My younger daughter is ginormous because of precoscious puberty. Towers over every kid in her school, fully developed (at 9!). Everyone we meet feels the need to make some comment about how old she looks. EVEN A DOCTOR! And he was dictating his notes right in front of us and said, "very large 10 year old girl" Really? Just what every girl wants to hear! Oh and at follow up appointment said, "really? you are only 10?" Nah! We just like pulling your leg doc. PEOPLE!

Sending lots of fattening vibes Jack's way. Tell him muscle weighs more than fat!
 

Tesscorm

Moderator
Staff member
Poor kid, sad when we realize they have concerns that they don't even share. But, crohns or not, I guess at their ages, we all 'heard' things we thought were true! :ghug: If it helps him, tell him that S wholeheartedly believes it was the formula he had that really helped build him up, muscle-wise and I know this is what motivates him to continue to drink the shakes (and, I think S is right... all that good nutrition could only have helped!)

Sometimes we forget what it's like to be young and not have the experiences or knowledge that we now have - when you're young, it's so easy to be influenced or worried when you just don't know better. :)
 
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When Brian was in 4th grade we went to an away football game. As we were paying to get in the lady giving us tickets said to him, "So, are you in kindergarten?" My son just stood there kinda embarrassed. I immediately said in a very nice voice, "Brian, now you get to guess her age!" She was now embarrassed and said, "Please don't! " and laughed. Maybe she'll think twice next time!!
 

Jmrogers4

Moderator
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
 
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