# Tater Tot and Remicade



## Jmrogers4

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.


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## Brian'sMom

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


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## Tesscorm

So sorry the MRI didn't show better results.  :ghug: :ghug:


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## Mehita

So far, I only have GREAT things to say about Remicade. I truly hope it works for him!!


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## crohnsinct

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!


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## kimmidwife

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?


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## Jmrogers4

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!


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## Farmwife

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.


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## Jmrogers4

Farmwife said:


> 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.


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## Maya142

Hope it's your miracle drug!


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## Catherine

Hoping for quick approval and great results.


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## polly13

Hope it works quickly for him


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## Sascot

Good luck - hope it works really well for him.


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## my little penguin

Sorry about the inflammation.
Hope the remicade works quickly
And he is growing soon


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## Jmrogers4

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


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## my little penguin

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.


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## Jmrogers4

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?


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## my little penguin

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 ....


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## araceli

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.


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## Brian'sMom

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.


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## Mehita

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.


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## Jmrogers4

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....


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## Brian'sMom

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.


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## Mehita

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!


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## Jmrogers4

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.


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## Sascot

Sounds like the Remicade can't come quick enough. Hope he still manages to enjoy the trip!


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## araceli

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.


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## MomRocksOut

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!


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## Jmrogers4

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!


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## Jmrogers4

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


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## Clash

Oh no, fingers crossed it is just a minor cold!


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## Farmwife

Poor kid. I hope he gets better.


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## crohnsinct

Stomach bug here so hoping it might be the same there.


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## Brian'sMom

Jmrogers4 said:


> 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


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## my little penguin

It took about two weeks to get an infusion. Scheduled for DS since they have to schedule all three loading doses at once .


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## Ams-Qld

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:


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## Jmrogers4

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.


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## Mehita

Thinking of you today... 

How was the appt?


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## Jmrogers4

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


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## Farmwife

I hope the appointment goes well.

I forget, did he do the blood work yet? 
If he did do you know the results yet?


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## Jmrogers4

No blood work yet


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## Jmrogers4

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....


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## Farmwife

I'm glad the appointment went well.
Here's to hoping for growth this coming year.


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## crohnsinct

Well if he is anything like O, the Remicade will do it's thing and he will start growing like a weed!


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## Sascot

Glad it went well. Happy new year.


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## Tesscorm

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:


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## xmdmom

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.


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## Jmrogers4

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


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## Farmwife

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.


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## Tesscorm

Glad it went well! 

Now you go relax with a glass of wine!  :ghug:


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## my little penguin

Glad it went well fatigue afterwards for about 24 hours is common


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## crohnsinct

YAY!  

Wow!  They increased him fast.  It took O three or four infusions  to get to max rate.  

Sounds like a nice mother/son day!


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## kimmidwife

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!


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## Jmrogers4

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.


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## kimmidwife

I think headache was a common reaction. Tylenol should help with it.


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## Mehita

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!


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## Jmrogers4

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


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## Clash

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!


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## momoftwinboys

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!


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## DustyKat

So good to hear all went well Jm.  And I hope his head is good on the morrow! :ghug:

Dusty. xxx


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## Sascot

Glad it went well! Hope the headache goes away quickly.  Loved Frozen!!


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## araceli

Glad it went well.


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## crohnsinct

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!


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## Maya142

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.


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## Jmrogers4

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..


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## Farmwife

Ya, so happy to hear. 
I'm so happy for you both and even kind of jealous.


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## Clash

Love the update, so good to hear! I'm so glad things are going so well!


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## Tesscorm

What a GREAT update!!! :dusty:


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## DustyKat

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


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## crohnsinct

BANG WENT THE BIG GUNS! :tank:YAY Jack and Mom...kicking Crohns ass!


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## LJS

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!!


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## Jmrogers4

crohnsinct said:


> 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


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## crohnsinct

LMAO!  That was a typo...or was it a Freudian slip? :ylol:


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## kiny

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.


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## my little penguin

Woohoo!!! Glad you are noticing a difference .
We loved remicade for DS


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## Mehita

Isn't it wonderful? Sooooo happy for you guys


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## kimmidwife

:dustyoing a happy dance for good news!!!!!


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## Jmrogers4

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?


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## crohnsinct

A year and a half behind...I would wait. Betting Remi fixes things.


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## Clash

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.


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## my little penguin

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 .


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## Sascot

Glad things are going well! I would also think it's fine to wait and see


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## Mehita

After seeing how much DS has grown just in the past couple of weeks on Remi, I vote for waiting too.


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## momoftwinboys

Great news!  Glad to hear jack has more energy and appetite. Long may it continue!


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## Farmwife

Grace is 1 1/2 yrs behind also. The Endo told us that easy for the body to make up. Of course she's 4.


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## Jmrogers4

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?


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## LJS

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


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## Farmwife

: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:


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## Jmrogers4

What??? I'm the perfect picture of joy all the time (I'm really trying to keep a straight face)


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## Tesscorm

Oh yeah, me too!  :ylol2:   .....:yrolleyes:

(...  where is that wine? :hallo3


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## Mehita

> 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?


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## Jmrogers4

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


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## DustyKat

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


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## Sascot

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.


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## LJS

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


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## crohnsinct

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!


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## Tesscorm

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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## Brian'sMom

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!!


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## Jmrogers4

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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## DustyKat

Oh bless his heart. :ghug:


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## Gmama

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!!!!


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## Jmrogers4

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


----------



## Gmama

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

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

: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

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!


----------



## crohnsinct

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

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! 

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

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.


----------



## crohnsinct

Eye of the tiger jack!!!!!!!!!


----------



## Tesscorm

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  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

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


----------



## LJS

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

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


----------



## kimmidwife

Take a few pictures of the rash and send then to the doctor. Hoping it is just a coincidence.


----------



## Clash

Hoping it is just a coincidence! Hope the labs are pointing to grow, grow, grow!


----------



## crohnsinct

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!!!!


----------



## Mehita

Can you attribute the rash to anything else? New laundry soap? New food? You don't pre-medicate, right?


----------



## my little penguin

DS got lots of rashes on his torso from remicade.
Hope its from something else


----------



## Jmrogers4

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

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

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

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


----------



## my little penguin

http://dermnetnz.mobify.me/reactions/anaphylaxis.html


http://dermnetnz.mobify.me/reactions/drug-hypersensitivity-syndrome.html


----------



## Jmrogers4

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

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 .


----------



## Justin1982

Jmrogers4 said:


> 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.


----------



## LJS

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

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.)


----------



## Mehita

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

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.


----------



## Justin1982

Jmrogers4 said:


> 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

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.


----------



## Mehita

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

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

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:


----------



## kimmidwife

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

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.


----------



## Clash

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!


----------



## LJS

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!!


----------



## Tesscorm

Great news on the gains!!  Sorry about the asthma but, hopefully, it'll be easily managed!


----------



## Mehita

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

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

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.


----------



## crohniekid

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

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

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

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


----------



## Clash

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

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.


----------



## Clash

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!


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## Jmrogers4

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


----------



## my little penguin

DS had gained at least six months before height was added but he was a lot younger .


----------



## Jmrogers4

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.


----------



## Farmwife

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:


----------



## LJS

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


----------



## Sascot

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

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.


----------



## araceli

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

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.


----------



## Clash

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

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


----------



## Gmama

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

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


----------



## Jmrogers4

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.


----------



## Mehita

Did it come on suddenly? I'm glad you are going in early. I hope,you get some answers. :ghug:


----------



## Jmrogers4

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.


----------



## Mehita

And this was his first eight week cycle, right?


----------



## Jmrogers4

Yes, any advice?


----------



## Mehita

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

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.


----------



## Mehita

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*.


----------



## Clash

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

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

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

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.


----------



## Clash

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

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


----------



## griffin123

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

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?


----------



## griffin123

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

So Jack wore a special tattoo.  All the nurses came in to check it out.  We are going to bring a couple of sheets in to them for the remicade kiddos and Jack is going to bring some to camp.


----------



## griffin123

That's awesome! Will there be some there tomorrow so Nathan can get one?


----------



## Jmrogers4

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.


----------



## kimmidwife

That is cute!


----------



## DustyKat

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

> 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.


----------



## Clash

I think Dusty should start a thread on Aussie speak so we can all pick up those great Aussie phrases!! Love it!


----------



## Farmwife

Jmrogers4 said:


> 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

Just came home from a week trip to Washington DC with some girlfriends and Jack is the same height as me!!!  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.


----------



## Clash

Such awesome news! I hope you enjoyed your trip and Yay on the growth!


----------



## DustyKat

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

Onwards and Upwards (literally!) Jack! 

Dusty. xxx


----------



## Sascot

Fab news! Hope he has a great time at camp.


----------



## araceli

Great to hear such good news.


----------



## kimmidwife

:dance: :dance: :dance:
So happy to hear this news!!!! Hope he has an awesome time at camp!!!!


----------



## Tesscorm

: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'!


----------



## Mehita

Woohoo!

Sooooo... who's organizing the first IBD Moms Trip?


----------



## Jmrogers4

We should so do it!!!  Wouldn't that be fun.  Where would the first trip be...?  Parents of IBD camp.


----------



## Tesscorm

anda:There's only one place that can hold the Parents of IBD Camp - Vegas!  anda:


----------



## Jmrogers4

Oh yeah that's the place. Woohooo!


----------



## Tesscorm

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


----------



## Clash

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


----------



## Johnnysmom

Someday we really should do this……


----------



## Tesscorm

:lol:  We'd better make sure there's a nearby firehall if we want Crohnsinct to join us!


----------



## Clash

Hah Tesscorm I was thinking the same thing and Johnnysmom you are right, we should! Maybe a Parents of IBD cruise!


----------



## Tesscorm

OMG, that would be AWESOME!!  :lol:


----------



## Sascot

Ooh, sounds fab, Vegas and wine!


----------



## Gmama

Finally! The upside of having a kid with IBD!!!! Mommy Cruise!!! :rof:


----------



## Jmrogers4

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.


----------



## araceli

:drink::drink::drink::drink:
Anywhere I'm in. No phones allowed.


----------



## Jmrogers4

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).


----------



## Momtotwo

Happy Birthday, Jack!


----------



## Clash

:bdayparty: Happy birthday, Jack! :birthday2:


----------



## Tesscorm

:birthday2: HAVE A GREAT DAY JACK!! :birthday2:

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


----------



## Jmrogers4

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

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

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!).


----------



## upsetmom

HAPPY BIRTHDAY JACK

:bdayparty:


----------



## Farmwife

ika:ika:ika:
:bdayparty:


----------



## my little penguin

:bdayparty::birthday2:

Enjoy your day !!!!


----------



## kimmidwife

Happy Happy Birthday!!!! Hope he has the most awesome day!!!!


----------



## Catherine

Happy Birthday


----------



## DustyKat

A GREAT BIG HAPPY BIRTHDAY TO YOU JACK!!!


----------



## LJS

Happy birthday to Jack! So happy that things are going well for him! Yippee!


----------



## Jmrogers4

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

Great update!   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?     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


----------



## Maya142

Wonderful news! Hope it lasts forever


----------



## Jmrogers4

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


----------



## Tesscorm

Nice!!   Sounds like your job came with perks for him!


----------



## Mehita

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

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


----------



## araceli

Glad remicade is working so good.


----------



## Mehita

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

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.


----------



## Clash

Sounds like he is doing great, that's awesome!


----------



## Maya142

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!


----------



## Farmwife

:thumleft:Wow, that's great he can keep up, I was getting tired just reading about it. lol


----------



## kimmidwife

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!


----------



## Sascot

Great update. Always nice to read


----------



## DustyKat

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


----------



## crohnsinct

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

Great update!!!  So nice to hear he's doing so well and just enjoying life to it's fullest!! 

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


----------



## my little penguin

^^^ 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

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


----------



## crohnsinct

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.


----------



## griffin123

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

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.


----------



## Mehita

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

Anytime mehita crocuses are blooming, hyacinth are growing and the sun is shining


----------



## Jmrogers4

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

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

So great to read a post like this!!  

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!


----------



## Jmrogers4

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.


----------



## Catherine

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.


----------



## Mr chicken

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


----------



## Clash

I don't have any experience, I can't get my kid to gain weight. I hope the fc comes back great.


----------



## Sascot

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.


----------



## crohnsinct

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.


----------



## Mehita

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

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

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

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.


----------



## pdx

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

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.


----------



## Sascot

What a relief. Hope he enjoys camp and you enjoy Seattle!


----------



## Tesscorm

Great news!  So glad there's nothing to worry about! 

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


----------



## crohnsinct

Sounds great!  The FC AND Seattle alone!  I love Seattle! Love low FC even more!


----------



## Jmrogers4

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

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.


----------



## Clash

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!


----------



## Mr chicken

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

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


----------



## pdx

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

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

> 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.


----------



## pdx

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

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.


----------



## Jmrogers4

hijack away.... never know if weight really does become an issue we may head down that road.


----------



## crohnsinct

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.


----------



## Maya142

> and T is the same as Jack. She would eat dog poop on a cracker to avoid the MRE again.


:rof::rof::rof: Too funny


----------



## kimmidwife

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!!!!


----------



## Jmrogers4

Thanks everyone, the instant breakfast is not a bad idea I'm pretty sure he will drink the strawberry.


----------



## Mehita

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

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

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


----------



## Sascot

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

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.


----------



## CarolinAlaska

Sorry to hear of the negative changes.


----------



## pdx

Hope that the increased frequency does the trick.  Any chance of doing a levels test at the next infusion?


----------



## Jmrogers4

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.


----------



## crohnsinct

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

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

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

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

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

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

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!


----------



## Farmwife

I'm sorry to hear about his set back. I hope every 7 weeks work for him better.


----------



## Sascot

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!


----------



## Mehita

Is it possible he's simply done growing?


----------



## Jmrogers4

Mehita said:


> Is it possible he's simply done growing?


Maybe, I definitely think he's slowed down as far as height, only about a 1/4" this last time but at just a touch below 5'11 he's fine with his height (although he wouldn't mind a couple more inches).  It's the weight that is really concerning now.
I guess if he is done growing in height we can see if a little weight comes now, I hope.


----------



## Tesscorm

I've already read that boys keep growing until late teens, even 20, 21???  But, my experience with S is that he had reached almost full height at 16.  When he was dxed, a month before turning 17, he was 5'10".

He'd gone from 140-145 lbs to 120ish at dx.  Since diagnosis/treatment, he's moved to  170-180 lbs but has only grown about 1 or 1.5 inches.

You do have to consider his weight loss and rising CRP/ESR but, perhaps, height isn't much of an indicator anymore??


----------



## Jmrogers4

Yes I can remember just a couple of years ago that if he made it to 5'6" or 5'7" we would be happy.  I of course want him to reach whatever his height is supposed to be without crohn's but dad's 6'1" and I'm 5'4" so I don't know if he would get much more than another inch or so anyway.  
Which leaves us with that conundrum without vertical growth indicator anymore, how do we know if something is working well or not?


----------



## crohnsinct

Yeah at this age I wouldn't be looking much at height as I would weight.  A 6 pound weight loss sounds significant to me, especially a teen boy.  Then when you add in the creeping CRP and sed rate:voodoo:

I have only met a handful of people on the 8 week schedule at our center.  I am really hoping this is a simple matter of dose adjusting!  

When is the next infusion?  They are pulling the antibody/levels test right?


----------



## Jmrogers4

March 8th (7 weeks).  We are doing a weekly weigh in to see if we can figure out when weight really starts to drop.


----------



## Maya142

Would he consider an NG tube and doing overnight feeds to get his weight up? Tube feeding is the only thing that worked for M's weight - she gained 23 lbs or so in 2015. She couldn't drink enough Peptamen/Neocate to get her weight up.

Speaking of NG tubes, has he considered an NG tube for the MRE? Might make it a bit easier for him.


----------



## Jmrogers4

We may be heading towards NG.  I think judging from the past once we've gotten things under control he gains weight.  We've done supplemental EN before for weight gain and he did great gained a bunch of weight (about 30 pounds) but within 6 months of stopping he had lost all but about 10 pounds.  
I think his GI (me just trying to read his mind) wants to find the magic combination.  When Jack was on the 10ml/kg every 6 weeks he was growing and gaining weight.  We bumped out to every 8 weeks and he was good for about 5 months then started losing.  What we've noticed is he gains weight right after infusion and 1-2 weeks before next infusion he loses around 5 pounds.


----------



## Tesscorm

Well, given S's positive response to using the ng tube and supplemental EN, you know I'm all for it!  If he could do it as S did, 5 nights per week, it wouldn't affect his social life much (ie sleepovers with friends, sports away tournaments, weekends away).  Most of the time, S's two nights off were Fri and Sat but, we would switch it up if necessary.  Even if he was going away for 4 nights straight, we would just do 7 nights the week before and after.  It really was a minor imposition for him - a few seconds before bed, even fewer in the morning.  (Not saying it wasn't annoying at times...  noise, jams, leaks, etc. but these were few.)

Even if the 7 week cycle gets his CRP/ESR down, I'd still consider the EN.  While S looked okay when at 120s, he was definitely 'skinny', those extra calories and nutrition really helped him look 'healthier' and likely helped a fair bit as he transitioned from 'boy' to 'man'.  S did EN with ng at exactly J's age now..  from 17 to 19.  At that time, he was taking in 1500 cal/night.

:ghug:


----------



## Jmrogers4

Insurance denied every 7 weeks at 10ml/kg but approved every 6 weeks at 7.5ml/kg, so waiting for GI's office to call to see if we need to appeal it or go with the 6 weeks at lower dose.  In the 2 weeks since infusion, weight started at 123.10, a week later 130.8 and a week after that 133.4 which seems to follow his regular pattern, of increased weight which he drops all of it in the 1-2 weeks before next infusion so maybe the 6 week interval will be good and maybe since he's been so good that the 7.5 will be enough to keep him there.


----------



## pdx

Wow--that big weight gain right after the infusion is really encouraging.  It does seem like increased frequency might do the trick.  Hope that's all it takes.


----------



## Jmrogers4

The only thing that worries me is we did the 7.5ml/kg every 6 weeks in the beginning and had to bump to 10ml/kg every 6 weeks before we moved out to every 8 weeks but he was not in as good a place so I guess is it going to be enough now?


----------



## Maya142

So insurance approved 10mg/kg every 6 weeks before? Maybe it's worth appealing then.

That is amazing weight gain - wow! Hope the higher dose works its magic!


----------



## crohnsinct

Wow!  That's awesome!  

It is true that as they heal their body sops up less of the Remicade so just maybe the 7.5 every 6 will work. 

Found this but don't know how to put it in the neat yellow box with study reference the way MLP does.  

 Arguably, shortening the dosing interval to 5 mg/kg every 6 weeks is appropriate for patients with shortened response to infliximab, whereas double dosing (or interval halving) should be reserved for patients with complete or early LOR to the last infusion.[8] Although this rationale is clinically sound, and has underlain physicians' therapeutic choices for a majority of patients in our study as well, the clinical outcomes of these differing policies have not been previously investigated. Thus, we believe this study is important for being the first to compare between these two management approaches. The results suggest that escalation of the therapeutic regimen to once every 6 weeks appears to be at least as effective as doubling the dose or halving the interval, especially for patients with late postinfusion LOR (re-emerging symptoms 5–7 weeks postinfusion).


----------



## Sascot

Hope the change in schedule works great for him.


----------



## my little penguin

Cic when you post you click the comic book bubble
Then the code for quotes appears 
Put a space between the "





> And


"
Paste your text 

Easy as pie 

Agree the 7.5 mg every 6 weeks might work this time maybe 
What were his levels like at 10 mg every 8 weeks 
Did you have them taken 4 weeks in ??



Good luck 
Ds was put on 7.5 mg every 6 weeks when he was on remicade


----------



## Mehita

I've ranted before on this, but why do insurance companies get to decide the treatment of our children? It just infuriates me. 

That is some pretty amazing weight gain!


----------



## Optimistic

Completely annoyed at the instance company.


----------



## crohnsinct

P.S. If he is gaining that much weight make sure they weigh him and adjust the amount they put in the bag according...docs write the script for total amount.  This is why as the kids gain they get less and less mg/kg and you have to make sure they are watching weight.


----------



## Jmrogers4

Benefit of getting his infusion at his GI's CIC, he gets weighed when we walk in the door and they order the remicade accordingly so his last insurance approval was for 10ml/kg so it's been between 560ml - 580ml depending on his weight.

Agree Mehita, insurance denial says based on research blah....blah....blah but GI is basing his decision on his research of my kid and what has worked for him.

MLP not sure what the exact number is, I thought I had it in my paperwork but not seeing it.  I'll have to ask him for another copy.  We had it done at 8 weeks and he was definitely in acceptable levels with no antibodies.  I remember discussing the numbers.  We have not done at 4 weeks.

Just want to make sure he's in a good strong spot lots of stressful things coming around the corner, baseball tryouts, ACT & SAT tests, he and his girlfriend just broke up and our 11 year old dog is going downhill fast.  I realize that's it's really very typical high school stress levels but since he seems to be sliding back a little I'm afraid that slippery slope is going to get steep really fast.


----------



## my little penguin

I am surprised they did the level test at the infusion at 8 weeks
Our Gj specifically told us the test is designed for about 4 weeks out 
Not that it matters but might help with appeal


----------



## Jmrogers4

We were going to wait until 4 weeks after but then his GI decided it would be worth it to find out end levels since it seems to be the last 1-2 weeks where weight loss happens


----------



## Tesscorm

S has had his levels tested twice; both times, it was tested the day before his infusion.


----------



## Jmrogers4

Wow! it's been over a year since I've updated/posted on his thread.  All continues to be well. Despite my skeptical reaction to reducing the amount of remicade he thriving on 7.5ml/kg every 6 weeks.  He is a bit over 6 foot tall and continues to grow.  We know his growth plates in his wrist are still open as he fractured his left one a little over a month ago.
J graduates from high school in less than 2 months!  He is looking forward to a busy summer with a graduation trip to Greece for 12 days then home for a couple of days to get his infusion and off to Camp Oasis where he will be a counselor this year.  For anyone reading this and worrying about biologics I can honestly say I don't think he would be able to do all this if it were not for remicade, it really has given him his life back and allowed him to not worry about Crohn's.
His GI has scheduled an MRE for July since it's been just a little over 3 years since the last one that started us on the Remicade journey and he wants to make sure all is okay before sending him off to college.
Hope everyone's kiddos are already there or are on the path to remission I can't tell you enough how much your support, encouragement, and sometimes the smack upside the head that I've needed have meant to me.


----------



## pdx

What a great update! Glad to hear that everything is going so well--I can't believe that he's still growing!


----------



## Tesscorm

It has been a long time!!  Hadn't seen 'Tater Tot' in the threads for ages!  And, am so glad it's with a great update!

They're all growing up...  hard to believe when I first found the forum, us 'oldies' were all here with young kids/teens and now, more than a few, are young adults!  

Sounds like his next few months will be amazing!  Graduation, Greece, camp and then, off to university!  Wow!  Best of all, he's feeling good for all of it! 

Where did he end up deciding to go for school?  Far or nearby?  What an exciting time for him and you! :hug:


----------



## Jmrogers4

He will be going to Idaho State University it's about 3 hours away (perfect distance for mom) he still gets to go away for college and I know that I can get there quick if needed.  He has several friends that are already or will be attending.  I think he made a good choice.

It's hard to believe these kids who are not kids making decisions and starting on their own lifes.  I sent him to his first infusion without me and of course everything went fine but I was a nervous wreck, guess I better get used to it.


----------



## Tesscorm

Yes, 3 hours isn't too bad.  S is about 2 hours...  it's certainly a manageable distance. 

And, yes, YIKES, there are times/situations when it's a bit tough to let go at the beginning.   Infusion...  I'm sure the next one will be much easier.    S goes to all of them on his own.  And, when we schedule one for the centre near his school, I've sometimes even forgotten about it on the day it's scheduled.  

Unfortunately, I do still find we need to step in and advocate at times (not sure when they start being seen as 'real' adults!).  Perhaps it's a function of being in a 'university' town but we've found the walk-in clinics (including the school's) and local ER department tend to be fairly complacent when it comes to students.  And, S is quite knowledgeable (ie shares the right info, asks the right questions) about remi, crohns, etc...  but, still he often gets brushed off with 'yep, we're seeing lots of _this_.  Come back if it doesn't go away.'  :ymad:  He went to walk-in 2-3 times and local ER twice in 4 weeks and all they gave him was a puffer.  Finally, he was so sick, he called me to go with him; I brought him back to ER here and he was dxed with strep. :ymad:

But, I suppose, all stages in the final transition of them becoming a full-fledged adult!  We're almost done our jobs!  :ywow:


----------



## Jmrogers4

Y'all will appreciate this, Jack had his first infusion at college on Monday in his dorm room.  The day starts off with a call from the home health nurse "Uh this is T, and I'm calling to schedule a time for infusion" - Um did you call Jack? You're listed as emergency number and he didn't answer,  well it's 8:30am and first class isn't until noon he's probably still asleep did you leave a message? No, - well I'll send him a message to call you but he told me he had scheduled for 2:30. Oh- Uh yeah I see that here. REALLY :ybatty: not instilling a lot of trust here with mom, who is 3 1/2 hours away I'm thinking do I need to drive out there to make sure he gets his infusion, No I just need to settle down.  I tell myself it will be okay they do infusion all the time, right?  

I send Jack a message by text and via Amazon Alexa (if you have a kid away at college this is a handy little item).  Get a message back he is all set for 2:30, his meds were delivered last Friday and are sitting in the fridge in his dorm (yeah that's not worrying at all to have $20,000 worth of medicine sitting in a dorm fridge) but tell myself "see it all worked out".

Jack skypes me about 1/2 way through his infusion "look we rigged up something to hang the IV from the ceiling"  What? there is no pole?  I hear from the nurse in the background "You have a pole at home?"  NO! who has an IV pole at home... is it something we need to provide?  Oy Vey :ack: it is going to be a long year!  But Jack really liked him they spent the whole time talking fantasy football...


----------



## Farmwife

Lol,  lol,  lol
I have an IV pole at home.
Would your son like it?  It has cut out of a paper castle at top and princess stickers stuck over the pole.  
I'm sure i can find the fake ivy that used to wind around it.  
It'll cute in his dorm.:ylol:

Good grief.  How did the poor nurse think this was going to happen?


----------



## Maya142

You can actually get small portable IV poles. We have one because of my daughter's tube feeds. She actually does use it in college!! Let me see if I can find a link.

I can't believe the nurse thought Jack would have an IV pole. Do his patients usually just have IV poles lying around :lol:? I'm surprised the home infusion company doesn't make the nurse carry one.

Glad everything went well finally...it'll take some adjusting to, I'm sure . Probably harder for you than him!!


----------



## Maya142

I can't find our exact one but it is a foldable, tabletop IV pole similar to this: http://www.drivemedical.com/b2b/index.php/foldable-and-portable-iv-poles-808.html

We have a bigger one with wheels at home that was supplied by our DME.


----------



## Jmrogers4

Farmwife said:


> Lol,  lol,  lol
> I have an IV pole at home.
> Would your son like it?  It has cut out of a paper castle at top and princess stickers stuck over the pole.
> I'm sure i can find the fake ivy that used to wind around it.
> It'll cute in his dorm.:ylol:
> 
> Good grief.  How did the poor nurse think this was going to happen?


Maybe we should get him to wear a tiara too.  Did I mention his roommates are rugby and football players :ylol:  maybe we can get them all to be princesses in support (I'd have to post pictures of that)

A link would be great Maya since I guess we are looking at the next 4 years right.  I would have assumed the home health would have one as well. 

They did not do his normal rapid infusion but I think I'm okay with that judging on how it all happened I don't think throwing another kink in the system would be a good thing.


----------



## Farmwife

Jmrogers4 said:


> Maybe we should get him to wear a tiara too.  Did I mention his roommates are rugby and football players :ylol:  maybe we can get them all to be princesses in support (I'd have to post pictures of that)


Lol. If you could guarantee a picture. 
I go all out and give you the tierra that Grace got from Cinderella's castle. 
It'll go viral .:ylol:


----------



## Maya142

Here is another link: https://www.vitalitymedical.com/lightweight-foldable-portable-iv-poles.html

You can also just search on Amazon - they definitely have them, I just don't know if they have folding/portable ones. But they do have rolling ones that aren't huge. 

Ours was made by a company called Little IVs but I can't seem to find it now.


----------



## Tesscorm

:rof:  It is hard becoming an arms length PITA mom!  :lol:  There might be a couple stumbles here and there but, they do seem to take it in stride better than we! :thumright:

Instead of going through the whole exercise of getting a pole, etc., could he make do with attaching a (strong) coat hook on the wall??  Given the small size of dorm rooms, he could use it for his coat or knapsack in between infusions and wouldn't need to store the pole anywhere in his room?? 

But, regardless, I think it's amazing that they go to him for the infusions!!  :thumright: :thumright:  And, way to go mom, for not jumping in the car right away!:dance:


----------



## crohnsinct

Hey y'all  I'm baaaaack! 

O is at college also.  A time zone, 7 hour plane ride away and then a 2 hour drive from the airport away!  She says adulting is hard.  

Week of her infusion I see a claim on insurance for University medical center.  I text and ask what for.  Oh nothing...everyone in my suite is sick with some coughing thing.  I have been coughing for weeks and got really sick so got checked out.  Just some chest infection. Got some meds.  I will be fine.   

You can imagine the alarms that sounded and the back and forth between University, mom and GI. 

Her first dorm infusion was rough also.  Try to get Remicade sent to a dorm room! They can't.  Gets sent to mail room and if it gets there Friday afternoon after they close it sits there all weekend and it is supposed to be refrigerated.  So send to medical center but insurance won't approve because she can't get infusions at medical center.  Try to explain that is just the shipping address.  Medical center called her to say, "Remicade arrived" and she runs by to pick up her vial and turns out there were three huge boxes.  Home infusion place sent supplies of wipes, gloves, pole, epi pen, solumedrol, tubes etc for the whole year!  Then home infusion nurse shows up and he didn't have a pump!  They actually wanted her to do gravity but insurance only approved two hours of nurse time.  Luckily she had a nurse with a healthy disrespect for procedures and he took the campus shuttle bus back to his car to get a pump he travels with and he made up the titration schedule based on his experience.   

Glad it all worked out.  

I'll be posting a big hello to y'all soon.


----------



## crohnsinct

COMMAND HOOKS!  If he doesn't have em tell him to ask a cute coed...all the girls have em.


----------



## Jmrogers4

OMG CIC, she must be across the country!  They overnight Jack's med from Salt Lake but yep he receives it on Friday and same thing overnighted from Salt Lake and he texts me when he picks up from mail center.  He has his next infusion on Monday so hopefully it smoother this time although he does now have a command hook (actually several) he got from a girl.  I just was there over the weekend for family weekend.
He got the epi pen and some adrenaline type injection as well.  I went over with his roommates while I was there on directions for use and what to look for if it's after nurse has left, luckily he is rooming with his best friend and everybody was comfortable with explanations because the nurse did not tell anybody how to use epi-pen.
I love that we have maintained contact through this forum and fill as if you are all part of my extended family and am so excited that I have really gotten to experience all of these kids growing and spreading their wings.  And it certainly helps me to know when to step in and when to let him "adult".


----------



## my little penguin

Please remind the "adults "
Epi pens can not be kept where they see sunlight or heat 
So not stored in any cars for any length of time 
Or cold for that matter 
Che k periodically to make sure the window is still clear and not brown

Always make sure they have at least two in hand 
Good luck


----------



## Jmrogers4

So not the fridge? Nurse told him to put in fridge but he totally could have misunderstood and just the adrenaline need to be refrigerated or even just the remicade.  I guess we (he) better get some clarification on that.  We have never had one before because they had them at the infusion center.
Thanks MLP I would have never known.


----------



## pdx

Thanks for the updates, CIC and Jmrogers! 

My daughter is in 10th grade this year, but I am so not ready to think about college yet! She still has enough trouble getting through her infusions that she is already talking about staying nearby for college...


----------



## my little penguin

Definitely not the fridge 
The epi will not be effective if it gets too cold or two hot
There is an app 
https://www.epipen.com/hcp/about-epipen-and-generic/safety-and-storage

Anything in a fridge is useless 
The end won't work anymore 

Always get a two pack


----------



## Jmrogers4

Thanks, looks like we'll be ordering new epi-pens as they've been in there for 5 weeks.  UGH!!!  Texting him now...


----------



## my little penguin

Epi pen has a copay card to get it to zero 
Audi q is smaller same drug but has voice instructions 
We use that so if folks panicthey can hear step by step what to do 
Also has a zero copay card from the drug company


----------



## my little penguin

https://www.auvi-q.com


----------



## crohnsinct

MLP to the rescue!

LOL "adults".  

I will text O now and can guarantee her response will be, "mom, it's fine".  I think she has that on auto fill in.  

I can't believe how fast these kids grow.  Grace is 8?!  PDX's girl in 10th grade?  How did that happen?


----------



## Jmrogers4

Jack's response when I texted him - OK... OK what? OK you got the text but are you going to do anything about it?
Don't even get me started on his flu shot.  He walks by the health center multiple times a day as it is literally right next to his dorms has he stopped for the 5 minutes it will take to get his flu shot.  No!


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## Maya142

My daughter did the same thing last year with her flu shot - she even went to a flu shot fair, waited in line and then decided the line was too long!

She ended up in the hospital needing surgery (J tube) and one of the first things they asked was if she'd had a flu shot. The doctors were NOT pleased when she said no. Of course, since she was having surgery, they couldn't give her one.

She ended up getting it in mid-November, if I'm remembering correctly.

This year she got it in early September, before school even started. I guess she learned her lesson .

For both my girls, the first year in the dorms has been tough - lots of colds, throat infections etc. The health director at my older daughter's school told her it's like living in a petri dish. 

I send LOTS of Clorox wipes and cleaning products to school.


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## crohnsinct

LMAO!:rof:

My text convo went like this: 

Me: Hey there...can I ask you where you are storing your epi pen? 
Her: What? no. 
Me: No I can't ask?
Her: No, I don't think I got an epi pen
Her: Why an epi pen
Her: Actually idk 
Her: I didn't look 
Her: Are they shipping me more stuff soon because my infusion is on Monday and I haven't gotten any 
Me: just do me a favor and look and see if you actually got the pen they said they would send and yes a shipment is coming and don't forget to get your lab draw. 
Her: wait labs? when? where? 

So she is storing all her supplies in a rubbbermaid bin, under her lofted bed behind those plastic chests of drawers (because no college dorm has enough draw space for an 18 year old girl).  A lot of good the epi pen will do her way back there.  The kid could be dead by the time the nurse found it back there.  And hello?  You are just now wondering where your shipment is?  And hello?  GI gave you one infusion off from labs and you forgot about them?  

I guess there is only so much room in their little brains for knowledge and they are crammed full with philosophy, economics, game stats and party schedules.  

JM: yes across the country!  And she thinks she is getting a job there over the summer!:ywow:  Both our kids are getting infused Monday!


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## Jmrogers4

:ylol::ylol:
Asked Jack where it was when I was there over the weekend and he tells me it's in the fridge so I open the fridge, where? in the brown bag.  Brown bag all the way in the back behind the 6 gallons of milk (yes you read that right 6 gallons of milk) why 6? because apparently they willing drink a lot of protein powder shakes and go work out.  They keep trying to get Jack to drink them and go work out, he will occasionally work out but drink the protein drinks never! Gives him PTSD he says.
Jack just informed me that the YMCA group that hosts Camp Oasis in Washington wants him to come work for them all summer as a counselor and he is going to do that so I feel for you about not coming home for the summer.
On a good note, he has gained 2 pounds (his freshman 15, I wish it was actually 15)


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## my little penguin

Please keep in mind
Anything more than a mild allergic reaction to remicade will typically not be stopped by an epi pen
Since the drug has already circulated through out the entire body by the veins 

Tonput it in perspective 
Allergist do open food challenges 
They have the person eat a tiny amount Bit by bit 
But the allergist will not challenge in a normal clinic
Only in a full hospital with an ER within seconds 
This is with epi pens standing by 
Drug reactions are much harder to stop 
And keep from progressing to anaphylactic shock  or death 
It's that simple 
Insurance wishes to save dollars 
Hoping there is never a reaction

Please ask your home health nurse what the protocol is in a home setting vs infusion clinic setting


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## Farmwife

crohnsinct said:


> MLP to the rescue!
> 
> LOL "adults".
> 
> I will text O now and can guarantee her response will be, "mom, it's fine".  I think she has that on auto fill in.
> 
> I can't believe how fast these kids grow.  Grace is 8?!  PDX's girl in 10th grade?  How did that happen?


Your O and Jack are in college That's what's crazy.


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## Jmrogers4

Well just had FC done right before next infusion and yep elevated! Haven't made the call to doctor he has infusion tomorrow so I know will be good for several weeks.  Had Remi levels tested at the same time and have not gotten those results back yet.  Is it 2 weeks for results?? It's only been one week.
He went back to college last Friday, says he feels fine.  Send good mojo that we just need to adjust dosage/timing and he is not developing antibodies.


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## Maya142

Fingers and toes crossed that he just needs the dose upped!!

But to make you feel better - citrate free Humira is now available to kids (and I have heard of some adults getting it) and it is MUCH better apparently. So even if he's failing Remicade, there are options :ghug:.


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## pdx

Fingers crossed here too! 

My daughter seems to have a mini-flare just about once a year, and a small Remicade dose increase has taken care of it every time. She even had low levels of antibodies at one point, and a dosage change took care of that too. We're actually doing a calprotectin test next week to see if her latest dose increase from back in April is working.

Our levels tests usually take a week to come back, but it has occasionally taken up to two weeks.


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## Tesscorm

Fingers crossed!  Hope only some tweaking to dose does the trick!! :ghug:


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## Jmrogers4

Test is back - no antibodies and levels are good, so WTH does that mean since we have abnormal FC :angry-banghead: Something else?  He has not been sick so who knows.... the plan since he just emailed his GI about protein supplements since trainer for baseball would like him to take them and gain some weight (really like we haven't been working on that for years!).  GI doesn't want him to do supplements but would rather have him on the nutritional shakes again so while he is not thrilled (I think it just brings up some bad memories of the last time he was on them). He is going to supplement with them.  GI is hoping to kill 2 birds with one stone and that it will hopefully help with any inflammation.  (we will retest in a few months).

I'm a little worried as you all know Jack doesn't tend to show much from labs so FC of which normal is less than 50, he was 135 - This is the new GI who says he doesn't worry unless it's over 250.  Past results with different normal (different lab/pediatric vs adult) of 162.9, no symptoms he was at 90, high inflammation times he was 294 and 335. So at 335 we were discussing surgery because of the level of inflammation at TI so double that labs normal range now at nearly triple I'm not supposed to worry because it's not that high in the high range?

So I guess I'm once again at the wait and see stage... hopefully everything levels out and this was just some random weird months.  He feels great until a week to a few days before infusion then a little eczema, maybe some urgency a day or 2 before.

I'm heading out to see him next weekend for their first baseball game of fall season so at least I can lay eyes on him.


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## Maya142

I think you probably need an MRE to correlate with the FC since his FC tends to be low. My daughter is the same - her highest FC was 480. Her GI prefers if her FC is under 50 and she has increased M's Cimzia dose for an FC of 120 before (at LabCorp, <50 is normal, 50-120 is borderline and over 120 is high).

I think the test is actually the same - it is the range that changes. But I'm tagging crohnsinct since she knows more than me.


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## pdx

Do you know the actual value of his Remicade level? E's levels were OK (I think around 6?) last spring when she was in a mild flare, and her doctor still agreed to boost her dose a little, and it helped--her FC came down, and her symptoms improved. Her GI said that there's some debate lately over what the therapeutic level actually is, and that she's been aiming for higher levels. 

High FC with good Remicade levels can also mean that you're losing response, but it doesn't sound like that's the case for Jack, since he's having symptoms just before his infusion. To me, that points to just needing a higher dose.

Have fun at the game!


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## crohnsinct

Calpro levels.....different labs, different normal ranges...here is the funny thing.  If you are using LabCorp, they send their tests to Quest.  LabCorp uses a normal level of 50 and Quest uses the 162.9.  Funny huh? NOT.  The labs are just reporting normal for their experience with their patient population etc.  

Most GI's don't really perk up until around the 200 mark and many still don't take action until 300-500.  However, our new GI who has studied calpro extensively and is obsessed with it has these pearls of wisdom (and p.s. I am seeing a lot more GI's follow suit): 

- small bowel disease tends to not raise as high as colonic disease
- when we first met him he said he likes small bowel disease to be under 100 and above that he starts thinking about tweaking.  That said, T (small bowel disease) has been around 150-200 for about 6 months now and he still isn't changing anything.  Just careful watching.
- they are finding that the general population is showing higher levels of calpro.  Even people with IBS and rheumatoid issues are showing higher levels than 50.  So perhaps the normal will inch up also.   
- calpro is very variable so you wouldn't necessarily make a move based on one level. Remember O recently had an elevated Calpro and with us doing nothing 4 weeks later it was 25! 

I am also curious as to what his Remicade level is.  5 is considered therapeutic but a lot of the studies etc now are showing that we should be aiming for 7-10.  Especially given Jack's appearance of some symptoms right before infusion and the slightly elevated calpro, he may just need a tiny bump up in Remicade.  

I wouldn't raise the alert to red just yet but I would definitely be in yellow and reminding new GI about Jack's calpro/scope correlation and asking for a repeat calpro at least with next infusion and hoping GI pulled it at 4 weeks. If it is elevated at 4 weeks, then I am in orange territory because Remicade should have brought it down.  But again, with T her Remicade dose didn't bring her 183 down 4 weeks later she was at 195.  Given the variability not a freak out be Remicade clearly didn't bring it down to normal and her GI is still watching. 

One other thought is that as we age and mature our bodies go through changes.  So maybe, just maybe Jack's calpro isn't as sensitive anymore?  One can hope anyway right?

Did he have any kind of gastro bug?  Even a little diarrhea for a few days?  

Oh and remind him that if he gains weight his Remicade dosing has to change to accommodate that change!  The last thing we need is for him to be decreasing the dose while we are sitting in yellow!

Enjoy the game!  I am super glad you will be seeing him!


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## Tesscorm

Ugh, I hope this resolves on it's own. And, glad you'll be seeing him...  will give you a better sense of how he is.

Just on remicade serum levels...  the last time S's were checked, his level was almost 12 (antibodies were <2).  Based on what I'd read at the time (approx. 2 years ago??), the target therapeutic level was 5-8.  So, given that S was at 12, I asked his GI if we could extend the cycle to 7 weeks.  He didn't agree - said he had patients who had levels of close to 20 with no increased problems (ie infections), also that the 5-8 level was a guideline only and, having S slightly above (at 12) gave a cushion if S needed to delay an infusion by a few days...  just another comparison for when you get Jack's levels.

I'd also once read a study showing that adding nutritional shakes increased remicade's success rate.  I recall posting it in the Kid's research subforum.  Perhaps something you can print out and show to Jack??  Just to try to convince him to stick with the shakes??

Really hoping this resolves on its own though..  and quickly! :ghug:


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## Maya142

What about trying different shakes than he was on as a kid? For example, if he did Peptamen Jr then, maybe you could switch to Ensure or Boost (Boost Breeze has juice-like drinks I believe) if he can tolerate polymeric formulas or if it has to be semi-elemental, maybe a different one - Pediasure Peptide and Kate Farms would be options.


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## Jmrogers4

Don't know the exact levels he asked GI if the test was back, GI called the lab for results so I'm assuming they will post once they officially receive them if not I'll call next week and see what actual results are. 
Ordered him Orgain shakes they should arrive on Tuesday.  He says he will at least do one before baseball practice and one after work outs.  He did not want to do pediasure (apparently something about being in college and not wanting to drink kids drinks with the team :yrolleyes: )

Yes CIC you've hit it  I'm on yellow level!  I want more info.  Last MRE was only a year ago and was perfect but things happen and change and I want to acknowledge that but just having a hard time with what would be a normal change.  We have traditionally needed to be on the higher end of therapeutic to see improvements at least with other meds and if I'm remembering correctly when his last GI pulled levels he was within therapeutic but he bumped anyway based on symptoms and all was good after that until now. 

And hugely worried about weight and dosage as while he is at school as while home and going to infusion center they weigh him as he comes in and order remicade based on his weight.  Home infusion he is not weighed at all (in fact I don't think there is a scale in their apartment) medicine is sent and nurse comes out next day to infuse.  Probably something to bring up with GI.

Labs were done once while he was away at school last year, hoping to fix that this year.  I believe GI wants to do another FC but not sure what the timeline is on that.

I guess I'll trap Jack by taking him grocery shopping after game (he won't turn down free food) and give him a list of items for GI.  He has an appointment in December, I think I will ask if I can go with him at least for the first to get my questions answered so I'm not playing what is actually said.


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## Jmrogers4

I guess it's been a while since I've posted....
We did up the dosage he's back at 10ml/kg every 6 weeks and drinking Orgain shakes.  Weight is good (for him).
He is now getting infusions at an infusion center near school so regular labs are being done once again.
He is doing well and enjoying the college life, eats lots of pizza since he works at Papa Johns.  
I will get to see him next week during spring break.


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## pdx

Glad the dose increase helped! Thanks for the update.


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## Jmrogers4

Well it's been over a year since I've updated so in case anyone is interested.
Jack is still on Remicade and going strong, he is home and just finished his last final on Friday for this school year.  He is working part time at Mod Pizza they are still closed for dine in and he is cooking pizzas so has minimal contact even with co-workers.  It was an easy transfer from the college site one to the one here at home.
He has moved to an adult GI as of March and seems to like his new GI.  I was unable to go with him but his dad went for the first time since he had his own GI appointment in the same office an hour after Jack's.  At this point they are just keeping the status quo.  I was pretty sure they were going to want to do a colonoscopy/mre but they are content to wait as it was at the start of the Covid crisis.
He will be 21 in July and hoping that he will be able to go out, we have a back up plan to celebrate and stay socially distant if everything is still closed down.
We think my younger son may have had Corona virus in January, he had illness induced pnuemonia according to the college health office.  He got sick shortly after returning to college in Colorado and his friend from Denver was very ill also, it went through their friend group pretty rapidly and they were all sick for weeks.  He had all the symptoms.
All is good and I'm super proud of the young man Jack is becoming.


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## Tesscorm

What a great update!!  Over the years, we've shared so much of these kids dealing with various treatments, their setbacks, our worries and their successess...  just plain growing up...  It really is so nice to hear updates!  

I'm so glad he is doing so well!!  And lots of wishes for the opportunity to have a fun, exciting birthday!!!


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## crohnsinct

Great update and I LOVE your profile pic!  You guys look so happy and healthy!


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## pdx

Great to hear from you, and so glad to hear that your family is well.


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