# Tater Tot and LDN



## Jmrogers4

Well it has been just a little over a month since we started on the LDN and I have a couple of questions I'm hoping someone can answer.
So far so good on the LDN, we did have about a week 2 weeks in where he was definitely not feeling well and didn't leave the bathroom for a few days and wouldn't eat.  Rather than call the GI as he did not want to go the prednisone route again we thought we would try a variation/combo of the paleo/scd diet since he is such a picky eater.  He loves veggies but only certain ones - brussel sprouts, broccoli, peas, asparagus, green beans, carrots, spinach and celery.  Will not touch any other ones.  Pretty much every meal consists of either a hamburger patty (made from grass fed beef we get from a local farmer - we like to call her Bessy) with a little cheddar cheese, ketchup, mustard and some pickle slices.  In fact he can not stop eating pickles goes through a gigantic jar every couple of days.  Funny cause that is the only thing that made me throw up when I was pregnant with him and I haven't been able to eat them since 
My question is since he has been feeling so good.  What do you do/take in addition to LDN.  He takes LDN and Omeprozle, nothing else.  Should he be taking a probiotic or something else.  Can he start adding stuff back into his diet, he really misses dairy.  Sugar hasn't been as hard for him as the dairy since he has never really liked too many sweets.  Can't stand chocolate, cakes, pies and will only eat very few cookies (Snickerdoodles and white chocolate macadamia nut are about it).  Just had his birthday and we let him cheat a little as he does like apple crisp so we made that for his birthday and he ate the apples and not the crisp.
Worried with school starting about what he will eat for lunch since he can't cook himself up a hamburger patty, or chicken breast on his George Forman grill he got for his birthday - I know crazy present for a 13 year old but it makes a lot less mess than him using a frying pan or the oven! So I'm hoping we can start adding some stuff back into his diet.
Wow just realized how long this is so I will stop for now.  
Had to add the tater tot since y'all have such cute nick names for your kiddos and what else are you going to call a kid from Idaho. :lol:


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## kimmidwife

Hi Jackie,
My daughter takes LDN and nexium, amytriptalline (which she may not really need anymore but I am kind of scared to have her stop it) a probiotic and a multivitamin. That is about it. She pretty much eats everything except nuts and popcorn that the doctor told us to avoid. I think I would try adding other foods in slowly and see if he tolerates them.


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## Jmrogers4

Thank Kim, any recommendations on a probiotic?


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## Tesscorm

Jack sounds like Stephen - minus the veggies!  :lol:  I only wish Stephen would eat ANY veggie, his idea of a serving of veggie is 1/3 of a baby carrot! :ybatty:  And totally 'get' the grill - Stephen's come home at 11pm and asked if he can make himself a steak (before he starts his EN feed)! 

Anyway, not the same situation but when Stephen reintroduced foods, after his 6 weeks of formula only, his reintro schedule was:

1 - white foods - breads, pasta, plain cereal (no milk), plain muffins, plain crackers, etc.

2- proteins - any type but I stuck with chicken, fish, eggs

3 - fruits/veggies (we pretty much skipped this step :lol - soft fruits/veggies, no skins, no membranes (skin around orange segments), no seeds

4 - low fat dairy

5 - all else as tolerated.

Three to four days per step.  We were told to always avoid seeds, nuts (peanut butter is okay, just not 'pieces' of nuts, popcorn and 'limit' veggies skins.)

Might be helpful as a 'guide' to try new foods... 

His treatment is maintenance EN so his only med, right now, is Nexium.  As for supplements, he takes liquid Vit. D, a Calcium + vit. D capsule and Krill Oil.  As I've read in a number of places that coconut oil is anti-inflammatory, so I've made him some coconut oil chocolates that he has every day (1-2 max).

I would like to try probiotics but am afraid to change up the routine 

Good luck!


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## Farmwife

Tater Tot.... I like it. Cute!


We use Garden of Life Probiotics here. They have one just for kids,
 called Raw Probiotics Kids.  Has 5 different strains.
We love it. We all use it.


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## Jmrogers4

Thanks farmwife.  I'll look it up and see where I can get it.  Maybe I'll start making the whole family take it as well.  Can't hurt

Thanks Tess, I think we can skip to step 5 although we cut out step 1 and are currently doing steps 2 & 3.  I think I will let him know we can try some dairy and see what happens.

Thank you everyone, it just feels like after so long of a time taking so many different medications it kinda feels like I should be doing more.  Hopefully I'll get over that soon as long as he continues to feel well.:thumleft:


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## Mehita

We use Culturelle for Kids for a probiotic, though I'm sure my son could probably do the adult version soon and then we amp up (daily vs 2-3x/wk) the probiotic in the fall when school starts and when there are nasty viruses going around school. 

Tesscorm's list is pretty darn good. After a three week stint on a liquid diet, that's how we reintroduced solids as well. 

It also might be worth a discussion with your school about lunch. My son in gluten free and as a result his school offers him a GF option every day to accommodate his diet, regardless of what the other kids are eating. We did have to get a 504 plan stating that he has a disability (digestive issues), but it at least allows him to have burgers and chicken breasts from the cafeteria. Just a thought.

Good luck!


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## Kev

Really didn't take the time (I'm beat) to organize my thoughts before responding, but what I think is key is to remember a healthy, balanced diet shouldn't hurt anyone.. and if one has had significant damage done to their GI tract by disease, then it is better to err on the side of caution.  Probiotics are a sound choice. Pre-biotics to feed the probiotics just makes good old fashioned common sense.  LDN can keep the disease at bay, but if there is large sections of scarring from it, then avoiding/limiting things like nuts, seeds, pits, stones etc., is wise.  Protein is a basic building block of the body, esp in children... so making sure a diet is hi in protein is a good choice.  Since scar tissue is permanent, try to avoid/limit gassy foods...  scar tissue just isn't pliant like healthy guts.
Watch for trigger foods...  LDN does not make one superman.  Thing of it is... LDN might make one feel like the disease is beaten... gone...  that caution can be thrown to the wind.  Personally, I wouldn't play fast and loose with Crohns. It's a tricky so and so. Like, even tho a diabetic takes insulin for their diabetes doesn't mean they don't have to watch their sugar intake.  I think it might be a good idea to drill that analogy into the heads of any young folk who are taking LDN.  Far better to be safe than sorry, right?


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## Jmrogers4

Thanks Kev,  I think he has gotten it into his mind somehow that he will be able to eat sunflower seeds and popcorn again someday if he gets his CD under control.  I keep telling him these are permanently off his diet just like a kid with peanut allergy would never eat a peanut and while he may not have an immediate reaction, the consequences could be horrendous and he already has enough stuff to deal with.
Oh well I'll keep plugging away just like an anti-drug commercial.  "Don't try it, not even once!"
I'll look into the pre-biotic as well:thumleft:


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## DustyKat

The probiotic we using here is Culturelle Lactobacillus GG. Don't know if you saw this recent thread on probiotics? kiny has some good info in there re probiotics and disease location.

Love the nick name! ...

Okay, confession time...:blush:...When I saw Tater Tot I thought, what weird American thing is this! :lol: Like what you guys call a teeter totter we call a see saw! :yfaint:

Dusty. xxx


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## Jmrogers4

Dusty it is one of those weird american things (as well as a potato kid).  How can you go wrong with chopped up potatoes and deep fried a golden brown Ohh I think I'm making myself hungry:ylol:

PS I've always called it a see-saw


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## Farmwife

In Michigan we call it a see-saw also.

Must be a southern USA thing.:lol2:


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## Clash

See-saw here too! Love the nickname tater tot, that was mt daughter's nickname when she was growing up!


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## DustyKat

I think I first heard it called a teeter totter on the Brady Bunch! Spent days wandering around and wondering what the hell a teeter totter was! :rof:


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## Jmrogers4

Rather then starting a new thread figured I would add to this one.  Just had a call from Jack's GI and he has the results from Jack's Prometheus Prognostic.  He is sending me full results to look at but apparently Jack's chances of stricturing disease, developing abscesses is 65% so he wants to schedule MRE to look at thickening of the bowel walls and possibly switch to remicade even though blood work and scopes looked good.  I'm really confused about what to do obviously we want to do anything we can to either delay or stop stricturing/abscesses but he has been doing really well on the supplemental EN.  So do we have the MRE or do I wait and see and maybe it has just been a lack of calories and nutrition.  I don't know what to think anymore.


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## Johnnysmom

If our GI wanted the MRE done, I would do it.  No radiation and it is inconvenient but otherwise not a big deal.   In my experience they do not order any testing unless they really feel there is a good reason.  

It takes the body a while to heal and react to meds but if you are still needing to do supplemental EN and cannot get Jack to gain weight after several months of LDN a stronger med might be needed.  Especially if Jack's BMI is still in the 15 range, that is very low.  Johnny's BMI has gone up (now at 19.5) but at one time we were considering a switch because he wasn't gaining weight.  

You can always go back to LDN or 6mp once he is done growing.

Never easy decisions.  (((((Hugs)))))


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## my little penguin

Second the mre is painless and can give the Gi more info.
If his bmi is really low then its more than him not wanting to eat.
En can help but doesn't fix the problem.
Never easy


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## my little penguin

Just read that - 15% for bmi not actual bmi number of 15.
If its 15% - I am with the Gi - mre and move up until he is finished with growth.
Since starting remicade and en DS has a bmi of 17.4 or 70%.
He was in the low twenties .

So sorry


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## Clash

I would do the MRE too, just to check since the Prometheus Prognosis. It may just be getting his calories up but I would check all avenues. HUGS


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## Jmrogers4

Thanks, GI says he recommends but is basically leaving it up to me.  Thank you for your support and advice I guess we will go ahead and do it.  His BMI at last visit 2 weeks ago was 15.6 - 4.06% percentile according to chart they gave me.  I told his GI I would do whatever we needed to as his growth and development right now were the most important thing.  I think with recent 7 lb weight gain he should be above the 5th percentile now.  I try not to compare but since they were so similar up until Crohn's I can't help but compare and his brother's BMI at 11yrs/10ms is 67th percentile.


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## upsetmom

:ghug:... Us parents seem to have the added bonus of worrying not only about this disease but also our childs weight and development...


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## Jmrogers4

and the mental health that goes along with that^^^ as if being a teenager isn't difficult enough.


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## kimmidwife

I have to agree with doing the MRE and seeing what is going on. If the disease does not appear active and worsening and he is gaining weight my personal opinion would be to continue with the current course of treatment. However that is my opinion not medical advice. Some kids gain slowly but as Long as there has been a continual gain and no weight loss and no new symptoms that is how I would proceed.


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## Jmrogers4

Yes Kim, that is my big issue we just started with the supplemental EN and we are seeing some weight gain.  If the MRE shows stricturing/thickening do I switch or maybe we just haven't given the EN time although the appetite has again dropped off again the last few days but he is drinking his 8 drinks a day- My head is spinning.  I was not expecting that call today.  The mucosa from scopes looked fantastic, the other blood test looked great but this one is wacky I really think the LDN is working but I guess now we are looking at is it working enough...


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## Jmrogers4

I'm so furious!  Had a 504 meeting this morning to make some minor adjustments to Jack's 504 and the nurse commented that she hoped Jack was feeling better since he had been absent so long.  Apparently he hasn't been in to fill his thermos with his Peptide at all during the day!  The fridge was full of them, he drops them off in the morning but never comes back.  We called him down and he saw me standing there and said "Sorry".  We now have the nurse and his teachers who will all be checking on him and now he has specific times he has to go fill up so the nurse can check it off.  The counselor will be chatting with him as well about compliance and trying to figure out why he wasn't doing it.  I asked him every day how many he drank at school so we could figure out what he had left to drink that day and get them spaced out.  Every day the answer was 4 or 5.  I will be bringing and stocking nurses fridge from now on as well so I can double check.
He has always been so honest, I don't even know what to think.  He told his math teacher when she asked yesterday if he needed to leave class to go fill up that he didn't have to do that anymore.  Sent in email to everyone of his teachers that he is doing it until they hear otherwise from me.
Sorry for the rant...


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## Mehita

My Lukas did a similar thing! He was supposed to stop in the nurses office once a day to drink an Ensure for extra calories awhile back. I found out after the fact that he stopped going after the first day. He said he was tired of being different and always having to see the nurse. He said kids were asking him why he was always leaving. On the outside, he looks fine. It pretty much came down to wanting to not stand out with his peers - totally a middle school thing. Unfortunately, I think it's just another thing they have to come to on their own terms. Frustrating for us parents though!

The consequence of not taking care of themselves is extra attention from adults/teachers. I told Lukas he can slip in and out of class or we could have his English teacher set an alarm on her computer that goes off when he needs to leave and the whole class would know. Guess which he chose?


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## Clash

C is in highschool and he was taking his with his lunch and trading them for something else or just giving them away. I found out when his friend came home for the night and asked if we had any of those shake drinks that were so good. C turned so red, apparently his bestie likes the taste of Ensure. Boys!


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## Jmrogers4

I was so furious when I opened that fridge, good thing he was in class and I had to go to work gave me hours to calm down.  Still not quite sure why he wasn't going down other than his excuse "I forgot" but hopefully we have gotten it worked out and he will leave a couple of his classes just a few minutes early go to the nurses office drink one and not miss out on any social time.  I will be checking in with the nurse though.  Just can't quite figure out what he was thinking, the nurse was bound to call sooner or later at least once her fridge was overflowing with them.  There were 24 of them in there and he brought 6 more today.  I guess at least he wasn't throwing them away but then again if he was who knows how long it would have been before being caught.  Not very skilled at being sneaky, good thing for me.


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## Tesscorm

O...M...G...!!  I can imagine how mad you were! :ghug:  You've got to feel for them, they're just kids and just don't want these responsibilities BUT so frustrating when you're just trying to get them well!!!  :ybatty:  I can't help but feel bad for him... 

But, hopefully, he understands now...  perhaps suggest the overnight NG tube option...  it is truly what Stephen prefers!  We've started discussing ending EN as he'll be starting remicade and he actually wants to keep it going as long as we can as he doesn't have me nagging him about eating more healthy foods and he actually sees how much his body has improved since he's been on EN (and I'm not talking crohns, I'm talking muscle, etc. - his friends are even jealous at how easy it is for him to build muscle when he works out! :ywow.  When I suggested he could now drink Boost instead of using the NG tube, he said it's no hassle with the tube, he'd rather do that.  I'm sorry, I've forgotten if Jack ever had to insert a tube before and didn't like it???  But, maybe he'll be open to considering it now???

As for the MRE, I'd definitely go for it...  I'm all for more and more tests!  Especially the safer, less invasive ones!  The more info you have...  but, I can certainly understand your hesitation at adding meds... :ghug: :ghug:


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## my little penguin

Wow . I know DS doesn't like to go to the nurse either .
Can I suggest a different schedule ?
He needs how many a day 7-8 right ?
Why not two for breakfast after his cereal ? Two in a thermos for lunch time?
One on the bus ride home and then just two - three at dinner / bed

DS drinks 3-4 peptamen jr a day everyday . Two with breakfast
One after school  and sometimes one at bed .

Drinking in class is hard - this way it's only lunch at school and one the bus or when he walks in the door .


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## Jmrogers4

I did ask him about NG tube at night if he would prefer that and then he wouldn't have to worry about it at all during the day.  He said No.  We have never tried and NG tube but if he is not going to be compliant we may have to try.
I was hoping once he gained some weight and grew he would see the benefits it would make it easier.
Yes the hours I had until I saw him after work helped me calm down and try and see it from his point of view, that and I'm lucky enough to have a great boss who has a doctorate in child psychology and she told me I needed to sit and listen to him and not go straight to punishment/consequences, no interrupting - just listening.  Remember he is a teenager and his whole world is the here and now - not the big picture and most kids don't think about how things will effect them in the future.  It helped.


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## my little penguin

Oh and DS agreed to get up earlier in order to be able to finish two shakes in the morning .

Good luck

Try to ask him if he can think up a better schedule


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## Jmrogers4

Thanks MLP I'll ask him if that would work, he walks/rides to from school but then we are only about 3-4 blocks away.  What he has come up 
Drink 1 at breakfast, leave 2nd period a few minutes early go to the nurses office and drink one - go to break.  Leave 4th period a little early (with the math and science kids who go to special advanced classes) drink one in nurses office and go to lunch (with one in thermos) and then no more until he gets home unless he has rehersals or practice then drink one directly after school before heading to activity.  He doesn't have to ask to leave class just go and nurse won't call unless he doesn't show up at all.


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## my little penguin

We had a thermos that could hold two at once if that helps .


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## Farmwife

Jmrogers4 said:


> I'm so furious!  Had a 504 meeting this morning to make some minor adjustments to Jack's 504 and the nurse commented that she hoped Jack was feeling better since he had been absent so long.  Apparently he hasn't been in to fill his thermos with his Peptide at all during the day!  The fridge was full of them, he drops them off in the morning but never comes back.  We called him down and he saw me standing there and said "Sorry".  We now have the nurse and his teachers who will all be checking on him and now he has specific times he has to go fill up so the nurse can check it off.  The counselor will be chatting with him as well about compliance and trying to figure out why he wasn't doing it.  I asked him every day how many he drank at school so we could figure out what he had left to drink that day and get them spaced out.  Every day the answer was 4 or 5.  I will be bringing and stocking nurses fridge from now on as well so I can double check.
> He has always been so honest, I don't even know what to think.  He told his math teacher when she asked yesterday if he needed to leave class to go fill up that he didn't have to do that anymore.  Sent in email to everyone of his teachers that he is doing it until they hear otherwise from me.
> Sorry for the rant...


:awe: Oh to have been a fly on that wall when he walked in and saw you!


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## Jmrogers4

Lesson to all teenage boys everywhere! You have teenage brain and don't have the brain function to out smart us BWAAA HAHA (evil laugh)


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## Sascot

I know - don't kids realise that parents are all knowing and all seeing!!!


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## Jmrogers4

MRE is scheduled for March 4th!
Jack had the worst headache he says he has ever had.  I'm wondering if it was a migraine.  Said it started about 2 hours before school got out on the left side of his forehead and when he went to rehearsal for the school musical (which is this Friday) with all the lights and sounds it spread across his entire forehead.  He had to call his dad to come pick him up and he was in tears in the 10 minutes it took for hubby to get there.  He was sound asleep by the time I got home 1/2 hour later and slept till 9:00, got up to take his meds and went back to sleep.  Does this sound like a migraine? I don't have any experience with them.


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## Tesscorm

Not sure about migraines specifically but to have all the noise and lights on top of a headache would certainly worsen it!

I used to get really bad headaches (migraines??) as a teen and I remember they were painful enough for tears!  And anything would set off 'waves' of pain - a noise, moving my head, etc. would set off a pain that seemed to 'bounce' around my head until it dissipated (until the next thing set it off).  It may be long ago... :lol:, but I do remember just wanting to sleep it off.


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## EthanClark

My daughter is 12 1/2 and has started getting migraines every once in a while. This is exactly how she feels. The only that helps get rid of it is sleep. She doesn't have IBD or any other health issues. I have heard migraines are quite common in young teens. I haven't taken here to the Dr. for them as they haven't been frequent enough to cause worry but if they continue I will take her to get checked out. Sleep seems to always work.:ybiggrin:


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## Maree.

I get migraines too, the part of this that sounds like a migraine to me was when you mentioned he was in tears of pain then fast asleep 1/2 an hour later.

The clearest sign of a migraine for me is the aura (visual disturbances at the start).  But the other feature of migraines for me is that even when there quite severe, If I can lie perfectly still in a dark, quiet setting the pain fades out to numbness and I generally sleep, then 8 times out of 10 when I wake the migraine is gone.  Often if I can find a quiet space to rest while the migraine is still at the aura stage I can cut it off before the pain becomes intense.


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## my little penguin

DS gets migraines - typically with flares, allergens , MSG, too little sleep .
Kids present differently than adults.
http://www.migraine4kids.org.uk/

Very good website
Teaches kids to keep a headache diary


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## Jmrogers4

Thanks everyone for the input.
I think I'll have him track them if he gets anymore.  From what everyone has said it sure does sound like a migraine.  Hope it's a one off though.


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## CarolinAlaska

Poor guy.  I hope it was a one-time thing, and that there aren't any more to track.  <<<Hugs>>> to Jack


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## Mehita

I'm not sure if its related or not, but our gastro said that if L ever starts having headaches/migraines to get his eyes checked with an opthomolgist. Apparently, inflammation in the eyes can trigger the head pain and that L should be seen by an opthomolgist annually simply because of the Crohns. Just a thought... especially if Jack might be flaring right now.


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## Jmrogers4

Thanks Mehita.  Bad mother that I am I don't think he has ever been to an opthomolgist.  I have a great one too since I can't see worth snot!  Maybe I will give her a call wouldn't hurt to have it checked out or even if we just get a base line established then if there are any changes we will know.  Again thanks I didn't even think of that.


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## Mehita

I just found out about the eye thing last month and L's had Crohns for four and a half years. Our two previous gastros never mentioned it. The new gastro was shocked that we didn't know. Go figure!


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## upsetmom

GI told us today to make sure we see an opthomoligist....up until no one has mentioned this to us either.


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## Jmrogers4

WooHooo!  I'm so excited!  Just spent a half hour on the phone with GI.  No more Pentasa, 6 shakes a day for a week and see how weight gain happens or if he maintains current weight.  If he continues to gain quickly drop to 4 after a week.  If he maintains we can drop to 5 and see if he continues to maintain and grow until we see GI on 4/11 and then we can decide where to go with drinks.

No MRE for time being - says if Jack is gaining so quickly maybe there is not the inflammation he thought there was and since he is still fighting with my insurance to get them to pay for MRE, he thinks we can wait till when and if there are problems.

And Jack brought home an invitation to apply for Jr. Honor Society.  So proud of him.


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## my little penguin

woohoo


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## Clash

Wow!!! That is awesome news!!! I'm so excited for Jack, things are just moving right along!!! Woohoo...Go Jack!!


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## Farmwife

:dance::dance::dance:


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## kimmidwife

Great news!!!


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## Tesscorm

That's great news!!!    And congrats on the Jr. Honour Society - hope it works out!! :thumright:


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## Sascot

That is really great news.  Glad things are doing well


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## upsetmom

Great news...:dance:


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## EthanClark

That is great news for Jack.:thumright: I am so happy he is doing so well.


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## Mehita

That's great!!


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## Jmrogers4

Update - GI appt today.  Jack has gone for 1st percentile for BMI to 50th percentile!  We are still 15th percentile for height but he has grown an inch in the last 2 months. His GI was shocked at how well Jack looks, no longer pale, joint pain gone, eczema (just a tiny patch on his skull).  2-3 BM's a day, no pain, no blood, small urgency (when it's time it's time), soft but no diarrhea (most likely from supplements).  He just kept saying WOW! I can't believe how much a difference in 2 months.

Dropped to 4 drinks a day, halved the periactin only one dose a day for the next month and then quit and see if he maintains his appetite.

Back in 3 months to make sure we are still moving in right direction.  Will do blood at that time and check vitamin D level (He apparently has been reading about how vitamin D can affect Crohn's.  Told him I've read several studies about it (Thanks David) We were at 33 in February. (normal 30-100).  Said he would like to see level higher. Fecal calprotectin planned in a year (unless there are issues)

We also talked about LDN and how Jack is his only patient on it who is doing really well.  I asked him where they were having it compounded as how it is compounded can make a difference and what fillers are used and how quickly it is released (Thanks again crohnsforum) He is having me send him what I told compounding pharmacy so I'll have to find the thread on here but he is going to print it out so he can make sure he prescribes it correctly.

Also asked about the carrageenan in the peptide said I had read studies on it causing more inflammation in Crohn's patients (Thanks ben's rn)  He had not heard of it but was going to do some research and told us we could use other formulas and could also try non elemental and see how he does.  Watch for EIM's and if they start showing up switch back to the elemental formula.

He even joked about calling me when he has a tough case.  I said it is not me it is just a lot of mom's and dad's knowledge around the world that have been there already so really he was working with GI's all around the world through me.  Isn't he lucky!


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## upsetmom

Glad everything's going good.


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## my little penguin

WOW
SOunds like a great visit-
glad it is going well


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## Tesscorm

Wow, that is GREAT news!!!  I'm so glad that Jack's showing such great improvement! :medal1:

And too funny that you'll now be the GI's 'go to' person!! :rof:  :thumleft:


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## my little penguin

http://www.naturesone.com/pediasmart-dairy/
if you are going back to non elemental-
pedismart- does not have carriagean - not sure on the taste- never tried it.


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## Jmrogers4

Thanks MLP, it says right on the page "Kids love the taste" :lol2:  We still have a few cases of Peptide so we will probably finish those off


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## Clash

What great news!!! That is all so wonderful!!


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## David

Glad to hear about the improvements and good visit 

1.  When was the last fecal calprotectin done?
2.  Has he had his magnesium level tested?


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## Jmrogers4

Last fecal calprotectin was in June and was normal but scopes and blood were just done in February and all good (best labs ever).

He will test for magnesium when he tests for vitamin D first of July.  I asked because all my lovely friends from here were like little voices in my head.  Any other levels I should have tested besides magnesium and vitamin D?


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## kimmidwife

:dance::dance::dance:SOOOO Happppppy To hear the great news!!!!! Yay, I am doing a happy dance for you guys!!!


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## David

Jmrogers4 said:


> Last fecal calprotectin was in June and was normal but scopes and blood were just done in February and all good (best labs ever).
> 
> He will test for magnesium when he tests for vitamin D first of July.  I asked because all my lovely friends from here were like little voices in my head.  Any other levels I should have tested besides magnesium and vitamin D?


So 18ish months between fecal calprotectin tests is planned?  It's a CHEAP yet excellent test to check for inflammation.  I wonder why the duration?  Maybe because it was normal :banana: last time?

If possible, zinc and B12 would be very useful as well.  As always, get the actual numbers and share them here.  Especially for the magnesium and B12.


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## Jmrogers4

Yes because it was normal and scopes/blood were normal, biopsies from scopes showed no inflammation only reactive cells (whatever that means) he felt we didn't need it unless we started having problems.  If Jack's eczema or joint pain show up he will run it earlier but didn't feel it was warranted at this point.
I will send him a message to add zinc and B12 to blood tests.  We have an online chart that posts all the results from tests and I can hit a button and compare past tests (love it)


----------



## my little penguin

We were told no more than 6 months between fecal cal if we were not scoping - just to keep on top of things even if things were normal


----------



## Jmrogers4

So 6 mos from scope? That would be at next appt, he usually had us do labs week before so we can discuss results at appt so I can tell him I want it done then.


----------



## my little penguin

SO we don't have to scope DS every year  - and because DS's blood work does not reflect his disease level. our gi and 2nd opinion go want him to go no more than 6 months between fecal cal. Less if things are not normal.
Not scope and fecal cal.
His last number was high but not too high so  I am pushing for another one thre months from last one.


----------



## crohnsinct

WOW!  Just about all I can say is WOW!  That made my day! 

You are cracking me up with the GI using you on consult.  It so wonderful that you have a great relationship with him and that he has such respect for you!  But of course he does...look at how amazing you are!  Keep up  the good work!


----------



## CarolinAlaska

Jacqui, what an awesome update!  I love that your GI was humble enough to ask and listen to what it was that was working so well for your son.  Nothing like all those good results to get his attention!  Your hard work and study may very well help him help many others (and already helped your own son!).  I'm wondering if the periactin had side effects for your son.  How did he take it and how much.  I've had a couple patients on it and it made one of them very tired.  It helped both with appetite.  I think I may ask my GI whether we can try it for Jae.  She talked about it early on, but we haven't gone that route yet.  Jae still doesn't have much appetite.

David, I think the fecal calprotectin was like $729 for us.  Are you sure it is a cheap test?!  Jacqui, I would suggest a more frequent calprotectin test as well.  It is the only test that showed Jae's inflammation when all her bloods were reading normal...  It also gave us a good guide as to how the EEN did because it reduced her FC by about 600 to almost normal...


----------



## Maree.

Fantastic news.  Perhaps this warrant a post in the success stories thread.


----------



## Jmrogers4

Carol I didn't notice any side effects with periactin however he did eat more.  GI's opinion was he had gone so long eating such a small amount his body was in starvation mode and thought it only needed a small amount and we needed to "reset" it and convince it he was hungry.  It worked but will loose it efficacy we have cut the over time so we have cut the dose to once a day and I'm to monitor his appetite and stop in a month if appetite remains so that we can use it again in the future if we need to.

I will ask about FC when we go in July I think his reasoning was since all tests showed normal including FC he thought we could wait unless we start to see those EIM's of Jack's that generally preclude a flare but I know he would be okay ordering one if I wanted it as he would say "can't hurt"

Maree - I will post in success, thanks for the suggestion


----------



## Farmwife

Jmrogers4 said:


> We also talked about LDN and how Jack is his only patient on it who is doing really well.  I asked him where they were having it compounded as how it is compounded can make a difference and what fillers are used and how quickly it is released (Thanks again crohnsforum) _*He is having me send him what I told compounding pharmacy so I'll have to find the thread on here but he is going to print it out so he can make sure he prescribes it correctly.*_
> QUOTE]
> 
> Can I get a copy of that too?:ghug:
> 
> THANKS


----------



## Jmrogers4

absolutely 
From the Jill Smith study, I brought to the pharmacy

Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.

Fillers. Capsules of LDN necessarily contain a substantial percentage of neutral inactive filler. Experiments by the compounding pharmacist, Dr. Skip Lenz, have demonstrated that the use of calcium carbonate as a filler WILL interfere with absorption of the LDN capsule. Therefore, it is suggested that calcium carbonate filler not be employed in compounding LDN capsules. He recommends either Avicel, lactose (if lactose intolerance is not a problem), or sucrose fillers as useful fast-release fillers.


----------



## David

CarolinAlaska said:


> David, I think the fecal calprotectin was like $729 for us.  Are you sure it is a cheap test?!  Jacqui, I would suggest a more frequent calprotectin test as well.  It is the only test that showed Jae's inflammation when all her bloods were reading normal...  It also gave us a good guide as to how the EEN did because it reduced her FC by about 600 to almost normal...


In England, it's around 47 pounds.  Of course, here in the USA we like to multiply healthcare costs by 10+ so my apologies if I am mistaken on that.


----------



## CarolinAlaska

David said:


> In England, it's around 47 pounds.  Of course, here in the USA we like to multiply healthcare costs by 10+ so my apologies if I am mistaken on that.


No problem.


----------



## Catherine

In Australia it between $40 - $100 and is an unapproved test


----------



## DustyKat

What a FAB update Jm! :yoshijumpjoy::yoshijumpjoy::yoshijumpjoy:

:mademyday: 

Onwards and Upwards! 

Dusty. xxx


----------



## Jmrogers4

Sorry I've been away for a while busy with 2 sports and different school activities.  Things are finally slowing down.  My younger son's lacrosse season finished up over the weekend and Jack had his last regular season baseball game last night and playoffs don't start until next Tuesday.  I've tried to peek in from time to time to see how everyone is doing but sadly have gotten far behind.  
There are only 7 more days left of school this year!  Jack is still feeling great if a little tired but it is do to all the activities he is doing then because of Crohn's.  In addition to baseball nearly every night, he just got back from a weekend trip to Salt Lake City with his Choir where they toured a college campus and met with the musical director there and got some great feedback, followed by a trip to Lagoon Amusement Park.  I actually chaperoned the trip and the kids were all really good but I'm still tired and needed a large glass of wine by the time we got home.
Weight is holding pretty steady varies between 98-102 and he is just shy of 5'2".  Still drinking a few Peptide a day but no longer taking the appetite enhancer.  He still doesn't eat a lot but it is definitely more than in the past.
He has applied to attend a local private school and was accepted now we are just waiting to see if we can get enough financial aid to make it feasible.  He really wants to go.  He would be in high school there instead of junior high (9th grade) and was really impressed by the small size.  We have already talked about accommodations and they were really good and we have a plan in place if the financials all work out.


----------



## Farmwife

I'm glad to hear the good update and will pray you get financial aid.


----------



## Tesscorm

So glad to hear Jack is doing so well!!!!  To the point of tiring YOU out!!! 

Good luck with the school - I hope it all works out!!!! :thumright:


----------



## my little penguin

good luck on the school


----------



## Sascot

Great update!  Good luck with the financial aid - hope he gets to go to the school.  Makes such a difference when they want to go to school!
Well done for chaperoning that trip - I tend to avoid these things as much as possible - love my own kids but looking after lots of hyper, noisy kids is sooo not on my list of fun things to do :smile:.


----------



## Jmrogers4

Sascot said:


> love my own kids but looking after lots of hyper, noisy kids is sooo not on my list of fun things to do :smile:.


Especially when I'm put in charge of a group of 12 year old girls!   Ummm I'm the mother of boys - the drama, the squeals, the giggling.  I ended up sitting with the boys in the back of the bus on the way home only to realize they will pretty much do anything to get the attention of these same girls including letting them put full make-up on them :yrolleyes:


----------



## Jmrogers4

It has been over a year on LDN and Jack is doing really well (still waiting for a giant growth spurt but maybe he is supposed to be short). He has a ped appt. on Friday for weight/growth check - 9th grade physical.  He got into private school we had applied for so he will be starting high school next month. Appears to be over the recent bout of C-Diff and he turns 14 tomorrow!
Happy Birthday Jack
:birthday2:


----------



## Clash

Happy birthday Jack! Sounds like a lot of good news! Hope the ped appt goes well!


----------



## upsetmom

Happy Birthday Jack...:bdayparty:


----------



## Catherine

Happy Birthday Jack.


----------



## Sascot

Great update.  Happy Birthday!!!


----------



## David

Great stuff and a very happy birthday to him!


----------



## Kev

Happy birthday..  all the best... and continued success.


----------



## Farmwife

HAPPY BIRTHDAY JACK!

I'm so glad he got in to the school you wanted.
 Does he want to go? Why is it a better school?


----------



## crohnsinct

:bdayparty:

Happy Birthday Jack!  Awesome news on the school and health front!  Good Luck on Friday!


----------



## Tesscorm

Great to hear all is going well!

:birthday2: !!!Happy Birthday!!! :birthday2:


----------



## kimmidwife

Happy birthday!!!!! :dance::dance::dance:


----------



## Jmrogers4

Farmwife said:


> HAPPY BIRTHDAY JACK!
> 
> I'm so glad he got in to the school you wanted.
> Does he want to go? Why is it a better school?


He was the one that kept pushing for it, I didn't think we could afford it but he got a scholarship for about 90% of the tuition.

It is top rated for academics.  He shadowed a student in the spring and really liked it.  The classrooms have about 15-20 students in them as opposed to his school now where it is about 32 students.  They cap each graduating class at 120 students so class sizes stay small.

I graduated from there (only because my mother worked there so we didn't have to pay tuition) I graduated with 93 people in my class and I still stay in touch with a majority of them which I think he thinks is pretty cool.

And their baseball team is phenomenal!

I was worried about not having a 504 since it is a private school but they sent me a temp accommodation plan which has everything that 504 had and we will meet as school starts to put a permanent one in place.

Thanks everyone for birthday wishes for Jack, I can't quite believe he is 14!  He came into my room at midnight last night to tell me he was now 14 as he was born about 20 seconds after midnight he always has to stay up until then.


----------



## crohnsinct

Wow!  Got in and a scholarship on top of it!  That boy deserves extra cake tonight!  Way to go jack!


----------



## DustyKat

EEK! HAPPY 14TH BIRTHDAY JACK!!! 







AND MEGA CONGRATS ON YOUR SCHOLASTIC ACHIEVEMENTS! WELL DONE!

So happy for you Mum and Jack.  

Dusty. xxx


----------



## kimmidwife

That is amazing that he got in and with a full scholarship! I have to say that private school was much more accommodating for Caitlyn with her Crohn's it was when she graduated and went to public high school that we started having all the issues and decided to homeschool. I hope you guys will have a similar great experience with your private school.


----------



## Niks

Hope you had a fabulous birthday Jack!!  :bdayparty:

Congratulations on your new school too!  Fabulous news   xxx


----------



## Johnnysmom

Great News!!!!

You must be very proud of your boy!

I am sure they will work everything out at school for the 504, sounds like a fantastic opportunity.  And it is so nice to hear some good news!


----------



## Catherine

Jmrogers4

Happy birthday to you.


----------



## Mehita

Very excited to hear how the year goes for him.


----------



## Jmrogers4

Waiting for the GI to call me, just picked Jack up from school he has had stomach pain last few days along with what he said was "soft" poop we looked at Bristol chart and it is a 6 according to him.  Would C-diff be back after a month?


----------



## Farmwife

Yes. Sorry.
Grace's was a 3-4 weeks apart.


----------



## Mehita

Is he still being treated? Or when did he wrap up treatment?


----------



## Jmrogers4

You're popping my concrete bubble (why is it that I spelled that pooping right off the bat and had to go back and change it).
Just called first step re-check, on my way to pick up the poop check kit.  Usually have one here but not this time....
He finished the end of July Mehita with antibiotics for C-diff


----------



## my little penguin

hope you get results soon


----------



## Farmwife

Have you notice the "smell" of c diff.
(only those that have had c diff knows the horrid smell)


----------



## Jmrogers4

Honestly I don't often go into their bathroom so have not been in there for recent poop check as he usually just tells me but I do know what you mean as the smell from the sample for the last one was gagging so who knows maybe I'll be like one of those dogs that can smell illness - "Yep, that smells like c-diff" 
Of course now that we have the hat all ready to go he doesn't have to go... ARGHHH


----------



## Jmrogers4

Why is it whenever my son has to give a sample it can never be when the lab is open.  I always seem to be driving to the ER to drop it off in the middle of the night.  Yep, you guessed it he is in the bathroom right now attempting to go...

Can you see it now me getting pulled over for speeding or something.  
Officer: Where you off to in such a hurry?
Me: Ohh just taking this poop to the emergency room..

Do you think it would get me off a speeding ticket.


----------



## Clash

I don't know but if it happens you need to record it on your phone and post it!!!!

Hope everything turns out good!!!


----------



## CarolinAlaska

Jmrogers4 said:


> Why is it whenever my son has to give a sample it can never be when the lab is open.  I always seem to be driving to the ER to drop it off in the middle of the night.  Yep, you guessed it he is in the bathroom right now attempting to go...
> 
> Can you see it now me getting pulled over for speeding or something.
> Officer: Where you off to in such a hurry?
> Me: Ohh just taking this poop to the emergency room..
> 
> Do you think it would get me off a speeding ticket.


I'm with you there - seems like whenever Jae needs a sample, it is sitting on the DINING ROOM table or KITCHEN counter waiting for me when I get home from work... which is usually too late to take to the lab - really folks?  Couldn't you just leave it on the back of the toilet or Couldn't this wait till morning?  Now what do I do with it!  At least I've dealt with fecal cal tests enough to know I can leave them at room temp overnight to bring them in in the morning...  ick!


----------



## Jmrogers4

CarolinAlaska said:


> At least I've dealt with fecal cal tests enough to know I can leave them at room temp overnight to bring them in in the morning...  ick!


You can? Then why am I driving in the middle of the night to get to the lab?  GI told me it had to be to the lab within 4 hours. :voodoo:  His last FC of course the sample happened after lab hours like 11:00 pm so I drive it to the ER when I  could have waited until morning.


----------



## Johnnysmom

I was told it had to be refrigerated if we weren't going to bring it in that day.


----------



## Farmwife

Ya, I was told it could wait till the next business day. I hope the rides were lovely at night.:hug:


----------



## my little penguin

same here refrigerated then bring it in-

http://ltd.aruplab.com/tests/pub/0092303




> -Collection Remarks:
> * Send sample to laboratory on ice.
> * Loose or liquid stool sample are acceptable
> * Collection from diapers should be avoided unless a sample can be taken that is not
> in contact with the diaper material
> * No preservative is required
> * Required: Collection date and time
> * Sample stable refrigerated for up to 10 days
> * Sample stable frozen for up to 1 year



from:
http://www.childrenscolorado.org/pro/resources/lab/index.aspx?PrintNum=1000.2620&TestType=L


----------



## Jmrogers4

No answer yet, kind of frustrated that we did not get a call today!  He is not eating and says he doesn't feel bad but doesn't feel good either whatever that means.


----------



## Sascot

Had the same problem with my daughter - she doesn't have a regular time of day to go to toilet.  None of our doctors ever mentioned the sample had to be kept refrigerated or that there was any time limit. :ybatty:  Hope they call soon.


----------



## Tesscorm

Hope you get a call today, so hate waiting too!  I've heard a similar description from Stephen too - just feeling 'off' - not good but not really bad either.


----------



## Mehita

That feeling is called "meh" around here. Ditto everyone else on refrigerating poop. Never thought you'd be doing that when dreaming of motherhood, huh?

Hope he feels better soon...


----------



## Jmrogers4

Yeah, kind of thought once the diaper stage was over dealing with poop was pretty much offer as well


----------



## Jmrogers4

No C-Diff Yeah! but then why they symptoms.... Missed the call on my cell phone figured it was after 8 so I would not be hearing from him tonight  so of course he calls.....  So I'm to call tomorrow to discuss symptoms further and most likely fecal calprotectin and go from there I guess.  So more waiting...
Question for you all though, Jack always seems to have symptoms in August and in Dec/Jan any ideas why?  I know stress can be a trigger but would symptoms happen and no inflammation increase?  Just thinking back and going hmmmm...


----------



## Clash

Yay so glad to hear its not C-diff! I hope the symptoms are a fluke! Maybe stress is playing a role? Hugs and support!


----------



## DustyKat

Yay to no C-Diff! :dusty::dusty::dusty: 

I hope the GI is able to shed some light on what may be going on. Good luck! 

As to the symptoms...Sarah's response to stress every time is loss of appetite, loss of weight and some increase in bowel motions with no other indications that something more sinister is happening and nothing else has ever manifested so it goes away when the stressful period is over. 

Dusty. xxx


----------



## Tesscorm

I've also read that some people experience GI symptoms/flare in response to allergies.  Perhaps hayfever in August is playing a part?  Although, not sure how that would tie into December???  Can he take antihistamines?  I've read that it helps some people.   

Before S was diagnosed, his symptoms would come for 3-5 days, go away for 3-5 days, over and over.  At one point, his ped prescribed cipro because she didn't know what else to try...  S took one or two doses and broke out in hives.  We stopped the cipro and gave him benedryl (antihistamine) for a few days...  it may have been coincidental but he then had the longest break between symptoms (2-3 weeks!).


----------



## Mehita

Maybe it's anxiety induced IBS, like DS. We can start a club! Sorry, I'm still absorbing the IBS thing and feeling snarky about it.

Very, very glad it's not C diff!

Two other things... I thought I recently read a study about heat and Crohn's and also in the adult forum I thought someone had a thread about August being a bad month for many. Both unexplainable.

I hope it works itself out soon. Always a bummer to miss school...


----------



## Maya142

My daughter definitely has more BMs when she's stressed or anxious. She also has the IBS label and it's very difficult for us to differentiate what is IBS and what is IBD, especially since her inflammation markers are always normal. I have noticed though, that since she had her session with her psychologist she's stopped having 10 BMs a day (now down to 4). I'd so much rather have her talk to someone than increase her meds, so I'm hoping that the therapy will continue to help! I think it's definitely worth a shot!


----------



## Jmrogers4

Thanks Mehita, have to admit when I heard it was not a recurrence of C-diff I thought of your son and wondered about IBS, my mother has IBS.
Just so not sure what to think at this point - pain is very sporadic, no fever.  Just feeling "off" and the increased "soft" BM's.  So waiting for the GI to call again to talk about what we should do FC or just wait and see.  Don't want to miss something if there is a problem but then don't want to over react to every little thing either.  I just want off this tightrope.  Thought I wouldn't have to deal/worry for a while as I was almost sure it was the C-diff recurring because he has been doing so well.


----------



## Jmrogers4

Tess,
He doesn't show any other hay fever symptoms, no runny nose, itchy watery eyes, etc.  He is not taking the Periactin anymore as it didn't seem to make a difference in appetite any more.  Maybe I'll try some benedryl or something and see what happens since I'm sure I won't hear back from GI until Monday as they are closed on Fridays.


----------



## Tesscorm

Jmrogers4 said:


> Don't want to miss something if there is a problem but then don't want to over react to every little thing either.  I just want off this tightrope.


So frustrating, I hate that tightrope!. :ymad:  As I said, S has had these 'off' days before and I did start to worry less about them as they always went away after a few days.  S hasn't told me he's felt 'off' for a while now but, as I've gotten used to them, wouldn't surprise me if he's done the same and just waits to see if it goes away before mentioning it to me???

But, his 'off' days did go away after just a few days...

Do you think it's possible the antibiotics threw off his system and it's just taking a bit of time to get back to normal?


----------



## Clash

I was worried about school starting back and the stress of it all along with the fact that like Jack, C had a flare in Aug last year and it was in late July/August of the previous year that all this started. That coupled with the fact that we recently dropped MTX has my nerves a little frayed. So far, (touch wood) C hasn't had any issues but we are still probably 2.5 weeks away from his next infusion so anxious times for MOM!!!

Maybe it is like Tesscorm suggested and the antibiotic just threw his system off. Also with the start of school there is more activity so maybe his lack of appetite combined with more activity is affecting something? Just a suggestion but I do really, really hope it is a combo of minor things that can be straightened out quickly!!!


----------



## araceli

Same here, I was told can to put it in the refrigerator overnight. With a big warning sign. DO NOT OPEN is not food.


----------



## Jmrogers4

araceli said:


> Same here, I was told can to put it in the refrigerator overnight. With a big warning sign. DO NOT OPEN is not food.


:stinks:


----------



## Mehita

Do you think the pain is more associated with bowel movements or lack thereof? Looking  back over the last couple of weeks, that's when DS complained of pain and cramping... when he needed to go and couldn't or when he was having the massive BM's. 

Does he seem stressed? Is he talking much about school?

Like our GI said, whether they realize it or not, it's always in the back of kids minds. When's the next flare coming? Will I get sick and miss school? Will my (new) friends understand?

That's a lot to worry about at their ages.


----------



## Jmrogers4

He doesn't seem stressed but then he did just start at a new school (high school - no less) and left all the kids he has known since Kindergarten and who don't blink twice at his IBD or him getting up to go to the bathroom.  Where nobody at his new school knows (except administration and his teachers).  I think he would rather just be Jack instead of you know that kid that goes to the bathroom all the time.  But then getting any information out of him is worse then pulling teeth.   
I have heard about lots of new friends he seems excited about.  He is not playing football now, he decided and we are kind of glad, one less thing to stress and worry about.  He likes playing baseball more any way and there is a lot less worry about size.
I guess I'm trying to fix things and I know I really need to step back and empower him to fix things and realize when something is stressing him out and I don't want to do needless tests but in the back of my mind I keep thinking what if it is not stress - I guess I'm doing it too - "When is the next flare coming?"
YIKES!  Thank you everyone.  I don't know what I would do without you all.  Hubby generally brushes it under the rug and tells him he just needs to "gut" through it since that is what he does and you all take my sometimes needless and senseless worrying seriously.


----------



## DustyKat

Jmrogers4 said:


> I think he would rather just be Jack instead of you know that kid that goes to the bathroom all the time.


I know exactly what you mean Jm and to this day I believe it was one of the driving forces behind Sarah wanting to move away to go to university. She needed to establish her identity under her terms IYKWIM. 

As hard as it is (and I know I would struggle!!!) if Jack's symptoms don't worsen perhaps you can afford to step back and observe and reassess the situation in a another couple of weeks. That way there is more water under the bridge from the C-Diff/antibiotics and he will have found his feet more at school. 

Dusty. xxx


----------



## Jmrogers4

He is already scheduled for labs and FC the first of October so just a little over a month away.  So I think I will try and wait as long as nothing gets worse.


----------



## my little penguin

It is a tightrope.
DS was only "good" for a few months while on remicade .
So..... Not much experience .
But even where he is now
We just track for a while to see if there is a trend over a few weeks not a few days .

Keep in mind rectal inflammation can cause the urge to go repeatly without much output .
It doesn't show up in fecal or blood work .
It also causes stomach cramping and nausea after prolonged periods of time .

We were told Ibs like hyper visceral sensitivity because no one checked his bottom since he wasn't bleeding.

Try to get away from the computer 
Try to do fun normal things as a focus 
Document symptoms but only as numbers less emtions that way 
( ie # of bm's , # for fatigue etc....)
Try not asking for a few days and leave the chart in his room so he can document or write stuff to you if he feels like he needs to .
A few days things won't go downhill without you noticing 
And will let him take charge a bit of his illness.
DS has had asthma since he was 2. 
My DH also has had asthma since age 2
By age 4 DS would self report when needed for minor stuff
We could see the major stuff kwim.

Hugs


----------



## Maya142

MLP how can you tell if your child has rectal inflammation? My daughter has pain in her bottom that sitz baths and otc creams don't help. She doesn't bleed and her bloodwork always looks good.


----------



## my little penguin

I sent you a pm with the long version 
Short version
Gi needs to do a rectal exam to tell you if things are too squished in that area .


----------



## Jmrogers4

Finally talked to the GI after leaving messages back and forth.  Jack has had a lot of pain every morning and though we both are kind of suspecting stress, he would like to do a FC since we have a normal baseline from a little while ago and just double check and go from there.
As far as him not eating (again) GI told me to tell him he needs to have his calories and he can either get it from eating or EN, it's his choice but he has to pick one or the other.  I've tried not to nag but for example yesterday he ate a banana and a scoop of noodles all day.
I know he is not feeling well as the other day when I was asking what he wanted to eat, he said he would rather just drink a shake.
Went to school today with tears in his eyes and doing deep breaths, told him to call if he couldn't deal with it but I wanted him to try.  Haven't heard from him yet so I'm hoping it has passed.


----------



## Tesscorm

I hope today went well for him! :ghug:


----------



## my little penguin

Does he have ragweed allergies?



> Rationale
> Patients with Crohn's disease (CD) have been clinically observed to have seasonal variations in disease activity. Factors contributing to seasonal disease flare have not been characterized. We hypothesized that CD patients may have increased rates of atopy and seasonal allergen sensitivity, which may underlie seasonal exacerbation.
> 
> Methods
> Thirty-seven patients with documented CD were prospectively recruited from an adult gastroenterology clinic. After informed consent was obtained, a questionnaire was administered and skin prick testing to 16 environmental allergens, including controls, was performed. A wheal 3 mm greater than control was considered positive. CD age at diagnosis, disease distribution and behavior was recorded.
> 
> Results
> Twenty-three of 37 or 62% of patients tested positive to at least one environmental allergen. Twenty-one or 57% of patients had rhinitis and 2 patients had asthma. Sensitivity to seasonal allergens was identified in 46% of patients (ragweed 27%, grass 24%, trees 35% and mold 19%). The majority of patients with sensitivity to seasonal allergens had small bowel involvement (82%). 100% of CD patients with seasonal allergy were diagnosed before age 40.
> 
> Conclusions
> There is a high prevalence of environmental allergy in patients with CD. Small bowel involvement and diagnosis prior to age 40 were characteristic clinical features. The high rate of pollen and mold allergy may play a role in seasonal exacerbations of CD.


from:
http://www.jacionline.org/article/S0091-6749(04)00472-5/abstract


----------



## Jmrogers4

Would he have other allergy symptoms (i.e. runny nose, watery eyes) he has been coughing more than normal but nothing else that would suggest allergies.  The cough has been that deep hacking kind, said it hurts his chest.
I know that I'm sensitive to things that are blooming/dying around this time of year.  When I was young I would get hives every year at this time, worse if I was around drying corn husks (of course there was a huge cornfield behind our house).
He has never had any kind of allergy testing.


----------



## my little penguin

coughing = post nasal drip which = allergies
just depends which part is affected
different allergies can affect the same person differently.
sometimes eyes- sometimes nose or lungs and sometimes skin


drying corn husks=mold or ragweed allergy

they can run a RAST ( blood test ) next time he gets blood work
DS gets those all the time- easy to do.

your GP could order it-
but an allergist should be the one to see to determine if its truly allergy vs something else.


----------



## Jmrogers4

Thanks MLP, I think I'll send a message to his GP.
On Murphy's law, picked up the poop check kit on my way home from work, walked in the door and who is in the bathroom just finishing up?  Arghh :angry-banghead:
He yells "but I haven't flushed yet!" Seriously!


----------



## Gmama

You have no idea how funny this is to me!!
Oh, we have had so many of these moments!!!


----------



## CarolinAlaska

Jmrogers4 said:


> You can? Then why am I driving in the middle of the night to get to the lab?  GI told me it had to be to the lab within 4 hours. :voodoo:  His last FC of course the sample happened after lab hours like 11:00 pm so I drive it to the ER when I  could have waited until morning.


I called the lab and they looked it up and told me that.  It gets sent through the mail to Mayo Clinic and from there to Promethius labs - you can be sure that it doesn't get refrigerated all that time.

Here's the link:  http://www.mayomedicallaboratories.com/test-catalog/Specimen/91597


----------



## Clash

How is Jack doing? C has been dealing with some allergy issues, here lately, nothing that has affected his GI tract but Ughhhh...headaches, stuffy nose, cough, blah blah blah, and I'm literally white knuckling it until his infusion, praying this doesn't kick off a flare!!

Of course, since he isn't having any GI issues, he thinks I'm just being ridiculous. sigh.

Hope Jack is doing better!


----------



## Jmrogers4

Still pain in the mornings, FC sent off so now just the wait for the results.  I don't know what to think.  I would really like to put it down to allergies, stress what have you but I'm having flash backs to when this all started.  Stomach pains (only in the morning), not eating, lots of time in the bathroom.

I have his accommodation meeting this afternoon at his new school so we can finalize everything, although I don't think there is much to change and all teachers have a copy of his temporary plan.

On a fun note - we are heading off to Seattle this afternoon for a long weekend of fun and football.  So hopefully he has a chance to just relax and enjoy himself.  I'm bringing these wine slushy mixes I got at the fair.

Totally get the waiting for something to happen when you know it's a situation that has set him off before.  Are you getting the eye roll? :yrolleyes:


----------



## Jmrogers4

Thank you so much Carol.  I did not drive to the ER to drop it off this time because he of course decided at 10:30pm that it was time to go.  I put the cup in a brown bag and put a sticky on it - THIS IS NOT FOOD! didn't want anyone grabbing it as their lunch in the morning :stinks:


----------



## Clash

Oh yeah, I'm getting the eye roll. But I get that eye roll so often since he became a teen it's just seems his normal state! HA!

A long weekend trip sounds great! I hope you all have a great time!


----------



## CarolinAlaska

Aren't you glad that it isn't your job to do the FCAL testing in the lab?


----------



## Jmrogers4

Still waiting for results from FC. Thinking we should get results this week.  He is still having daily pain in the morning and seems to be going downhill. Not sure what to think anymore. Didn't eat today said it hurt too much and diarrhea today. He talked about just having shakes. He was crying this morning said his stomach really hurt, I think it was also the frustration of not feeling well and he it's afraid he is getting worse. About broke my heart. I talked him into going to school and to call me if it got to bad, he made it through the day but said it bothered him all day. Just frustrated and need to Benny everything was going so well.


----------



## Mehita

Remind me... what meds is he on?

I hope you get answers soon. Did any other labs come back?


----------



## Jmrogers4

Only LDN, Mehita.
We did a C-diff check - Negative and then the FC.  When GI ordered the FC he wanted to see what it came back at and see where to go from there since we had labs for blood schedule the first of Oct. anyway.  We have a normal baseline for FC so hopefully we should be able to tell if there is any inflammation.  His thought is if the FC comes back normal we can wait till next month for labs if it is elevated then we would do labs right away and go from there.


----------



## my little penguin

I am not understanding waiting on labs since they are simple and easy and can only help you figure out what is going on.

Hope he feels better soon


----------



## Jmrogers4

MLP I don't think either one of us was really expecting the FC to show inflammation, we were thinking stress of starting school etc was causing a little blip but we needed to make sure we had bases covered.  Now I'm not so sure as he doesn't seem to be improving but getting worse.  Pain again this morning and he informed me he would rather have shakes then eat (So I know something is not right).  Nurse at the new school has been great, she really seems to be on top of things.
Well GI office opens in 1/2 hour so I will be making a call.  He says his pain is mostly right below his belly button which was never an area that he has really felt pain before.


----------



## Tesscorm

Sorry that he's not feeling any better.   I hope you get the FC results soon.  If they don't have them yet, given how he's feeling, maybe they can go ahead with the rest of the testing now to avoid more waiting. :ghug:


----------



## araceli

I hope he feels better soon. Sending HUGS.


----------



## Clash

I hope you get the results today and that he is feeling better quickly!


----------



## Farmwife

I'm in the same boat, :voodoo:just hoping it's the start of school. 
I still hope that's what going on for both of them. :hug:

Did he have inflammation and or damage in his TI?
HUGS


----------



## Jmrogers4

Yes, inflammation in TI.  Still waiting for GI to call back UGHH!  Well I'm still hoping it is start of school but he has been in school for 4 weeks now.  Started on Aug 14th.
Can we go to the castle together?  I know where we can get an 11 pound bar of Belgium milk chocolate  (James found while we were shopping in Seattle)


----------



## Farmwife

:dance:I'll chip in half for the  chocolate bar.:dance: You'll have to come to the farm. 
It's about corn season and I become a single mom for awhile.:voodoo:


----------



## Jmrogers4

I'm used to farm life, growing up in Idaho! and it sounds like I might need that chocolate.  Just got off the phone with nurse.  FC up to 293 it was 90 last time so definitely not the right direction.  Going in tomorrow afternoon and will do some more labs and discuss.  GI wants to lay eyes on him.


----------



## Farmwife

Oh, I'm sorry to hear that.
How high has it gotten for him?


----------



## Jmrogers4

We've only done the 2 FC so our baseline when labs were normal is 90.  So 293 is high for him and that was 2 weeks ago when he was feeling bad but he is definitely gotten worse since then.


----------



## Sascot

Sorry to hear the calprotectin has gone up.  Hope the GI has some good advice for you.


----------



## Jmrogers4

So GI called about 8:30 last night with options for me to think about before appt. today. Thanks, didn't really want to sleep anyway  
So here are the options he gave me that he is thinking about, any feedback would be appreciated as my head is spinning.
1.  Add Pentasa only and see how it goes.  (My thoughts he was on Pentasa a little while ago and we didn't notice any difference, GI says but he wasn't really having symptoms then)
2.  Add Pentasa and a Steriod
3.  Add Steriod only
4.  EEN for 6-8 weeks
5.  Drop LDN and move to Remicade

I asked Jack if he had an option he would like to try and he said he just wanted to feel better.  His stomach is always hurting now, it's just the level of pain changes throughout the day.

Just not sure LDN had been working so well is this something that can be fixed with a round of steriods and he can get back to remission or am I just prolonging the move to remicade with damage being done along the way.  Any thoughts?


----------



## Tesscorm

Ugghh, that's so tough.  I'd hate to give up LDN if all it needs is a 'boost' but, hear you re inflammation and damage! 

Remind me again (sorry if he's just had a test and I've forgotten :ybatty, where has his inflammation been in the past and when was the last time he had an MRE?  I'm wondering if you can do some 'imaging' test(s) now (MRE or scope, if not done recently) to see what's going on and, if it doesn't look too bad, perhaps stay with LDN but try to help it along with something (EEN or steroids or both) and then check again to make sure inflammation is, in fact, subsiding???  I don't know how easy it is to have the imaging testing done, I know here, there'd be such a delay, this plan wouldn't work for us.


----------



## Jmrogers4

He had scopes in February and all it showed was healthy tissue.  We've never done a MRE but have insurance approval for it from Feb.  GI felt it wasn't warranted with what he saw in the scopes and he was having a hard time with insurance but went ahead and kept on to get the approval just in case.

At diagnoses inflammation was found in TI, Large Colon and duodenum.  Don't know about small intestine but GI has always suspected in there as well due to his symptoms.  Dad has fistulizing CD and Jack has NOD2 mutation which suggests the same as well, which is what worries me.  I think I will add to my list for GI to ask about doing MRE, since we have insurance approval I think we could get it done fairly quickly (I hope).

UGGH! I wanted more time in remission!


----------



## Clash

Oh I'm with you, I would've been up all night with all of that playing havoc on my reasoning skills!! 

Didn't Jack have clear scopes just a couple of months ago? Would the GI be open to an MRE to see if they can determine the level of inflammation now to compare to last scope? You could start EEN in the mean time and then depending on what the MRI looks like you could make decisions from there about the next step?

I so hate pred, I know it is a necessary evil but I am going to try my hardest to convince C to try EEN first if and when we are faced with that decision. But, my opinion is shaded by the fact that pred didn't have that miraculous "brings every thing under control quickly" effect, C continued to languish with the CD symptoms and the added pred side effects. 

Sending hugs and support!!


----------



## Clash

Sorry, Tesscorm, once again I wasn't quick enough and our post mirror each other but I do agree about the MRE!


----------



## Tesscorm

Great minds think alike!   (That's why I'd like to skype you guys into all Stephen's GI appointments! :ylol2


----------



## Mehita

I'm guessing you're at the appt by now, but I would be hesitant to change anything until I saw more test results, whether its an MRE, Sed or WBC, whatever to get a bigger picture of what's going on.

The only thing I think I wouldn't do is add multiple changes. If you do Pentasa AND prednisone, you're not going to know which is fixing the problem if he starts feeling better. Know what I mean?

Let us know how it goes...


----------



## Jmrogers4

Heading out in a 1/2 hour. But yes Mehita I agree with you.  Pentasa hasn't shown to do much for us in the past but what if this time it is all that he needs, kwim but at the same time want to get the inflammation under control quickly.  We will being doing blood work today. 
I just hate waiting, I'm a see a problem fix it now kind of person and I hate seeing him in pain and not able to enjoy things (but then don't we all).  I hate this disease just when you think all is going well something comes and bites you in the arse (as Dusty would say.  I like that word I think I will start using it.  It just rolls off the tongue).
I'll update later


----------



## Kev

Sorry.. missed the last few posts here.  Really saddened to hear of his downturn. I do know that combining LDN with 5-ASA is safe (in as much as taking 5-ASA can be). And, it has been stated you can take LDN with up to 10mg of pred (although pred is strictly short-term).  I take it that you've checked to see if he has a candida overbloom, right? For whatever reason, candida... (I think it is albicans) is the Achilles Heel of LDN.  And you have ensured that his LDN is correct... fresh, properly compounded, no mistakes at the pharmacy? (figured these were obvious questions, but didn't want to assume, OK?).

As much as I tout LDN... the one thing for sure it can't do is undo the scarring from this disease.  Scar tissue is permanent, and take it from me... the pain from it is intense.  So my advice is to do whatever you need to do to get his inflammation under control ASAP.


----------



## Jmrogers4

The plan for now.  5 day Prednisone burst to hopefully knock down inflammation while starting Pentasa at the same time.  Did labs today so hopefully have those back in a couple of days and go back in Dec. and repeat labs unless problems are still happening.


----------



## Mehita

Tell him a family in MN is thinking of him and hoping he feels better soon. Hang in there, mom!


----------



## Jmrogers4

Yes Kev, I'm sure the pharmacy thinks I'm quite bossy (to use a polite word) but you're right that it is something that needs to be checked.
But I did ask about the 10mg of pred being the recommended dosage with LDN and GI's take was that was done for the trials as at that amount it is really not going to make much of a difference so as not to be at theraputic levels and mess with the studies.  We pulled up the studies in his office again and read through them just to make sure.
So we are 40mg/day for 5 days and then nothing.
We did talk about MRE and he felt that it was not warranted right now however, if the pred/pentasa does not work then yes we would do before making any other changes.
He felt it was more colon involvement this time as Jack told him he feels like he has to go but nothing comes out (of course Jack never told me that ARGHH!) told him that is just like blood in your BM - it's a need to know! and if that is happening and after 10 min nothing is happening he needs to get off the toilet.


----------



## crohnsinct

AW JM so sorry to hear all this.  I would hold out hope that the prednisone will bring him back in line and not give up on the LDN yet...remember O's Remicade needed a little something to get her to remission and ever since we pulled it she has been fine.  I sure hope he is feeling better super soon!


----------



## DustyKat

So sorry I have missed the last few days Jm...:ghug: I so hope the Pred burst and Pentasa knock whatever it is on the head and all soon settles for your lad. :heart: 

Maybe do liquids too to see if that helps take the edge of his symptoms and give his bowel a break?? 

Above all else...Good Luck!!!

Dusty. xxx


----------



## Jmrogers4

2 doses of Pred later, pain has decreased (still present but not really bothersome he says), doesn't feel like he has to go and nothing comes out so I'm assuming (hoping) that means inflammation is decreasing.  
However he still doesn't want to eat (was hoping the pred would make him hungry) so we are taking your advice Dusty and as of today we are doing full EEN for at least a week and see if we see any difference.  That way at least I know he will be getting minimum calories at the very least.


----------



## Clash

Oh I hate that the appetite hasn't returned but maybe the EEN will help and hopefully the pred "appetite" will kick in soon! I'm glad the pain has subsided hopefully everything will be under control quickly!!


----------



## Sascot

Glad things are a little better.  Hope the pred and EEN do the trick!


----------



## DustyKat

Thinking of you guys Jm. :ghug: 

How many times has Jack been on Pred? 
Some find after the initial round that subsequent rounds take longer to kick in. Hopefully after a couple more days, and before it ends!, Jack will feel its full effect.  

Much luck and well wishes hun. :heart: 

Dusty. xxx


----------



## Kev

That was my experience.. but that was with the ramp up, target dose, then taper off scenario.  After every attempt, the next round had to be a higher dose to achieve the same results.    

The 'burst' option is different.  (I think).  As far as I know, doctors only like to try the burst scenario once...  sort of an attempt to kick start things back to normal.

Good luck


----------



## CarolinAlaska

Jacqui, sorry I'm a little behind on Jack's recent flare.  I hope that the burst does the trick.  We weren't given the option of a 5 days burst, but our GI doesn't want long-term steroids either (but she does do 2 weeks followed by a wean, which seems long-term to me...)  Today was our first dose.  She just took the meds - said the pred was bitter like chloroquinolone that we had to take for malaria prevention in 2005 .  She ate pretty well before the meds - which I am pleased about.  I hope it doesn't make her hurt or feel sick to have eaten...  Ugh!


----------



## Jmrogers4

I know that feeling you want them to eat but not if it's going to make them feel worse. But then they need to have nutrition to feel better Can we just get of this merry go round now.


----------



## CarolinAlaska

Jmrogers4 said:


> I know that feeling you want them to eat but not if it's going to make them feel worse. But then they need to have nutrition to feel better Can we just get of this merry go round now.


Exactly!:ybatty::hug:


----------



## my little penguin

Two weeks is short . But standard ..
We tried that for DS twice.
Second time we never really got to wean and stayed at dose for three months before weaning now that was long.

Hope the burst works quickly for him.
Carol hope her pred kicks the inflammation down soon


----------



## Jmrogers4

Last dose of Pred this morning   He is definitely feeling better.  We did EEN alongside the pred but he wanted a bowl of rice krispies this morning (it has been the first time he even asked for food in the last week) No pain for last 2 days   So I packed him a lunch this morning as well (homemade chicken noodle and applesauce).  Fingers crossed that he continues feeling well.


----------



## Clash

I'm so glad to hear that he is feeling better and his appetite is returning!! Long may it continue!!


----------



## Tesscorm

Glad it's looking like all is improving!  Hope it continues!!


----------



## Mylittlesunshine

So happy to hear jack is feeling a bit better
Hope it continues x x


----------



## DustyKat

Thanks for the update Jm!  It is so fab to hear that Jack is feeling better and I have everything crossed that it stays that way! Good luck! :ghug:

Dusty. xxx


----------



## Jmrogers4

Had a long chat with Jack's GI last night when he called to check on him.  Jack is feeling better, symptoms have decreased but still no appetite.
We had a long chat about growth/puberty as nothing has changed since March.  He grew an inch between Feb/Mar when he was on supplemental EN but nothing since then.  No signs of puberty so we will keep doing supplemental EN, added the Pentasa and if no change by December when we go back discuss options.  His younger brother (12 1/2) has caught up to him in height again and the way he is eating I think we are going to get a couple more.  I think and GI agrees we need to figure out why.


----------



## DustyKat

Thinking of you Jm and hoping you have solid answers and positive outcomes for Jack very soon. :ghug: 

Dusty. xxx


----------



## Jmrogers4

ARGHHH!!! Off Pred for a week, 3rd day of stomach pain!  I write a post on Tuesday morning, come home and he tells me his stomach was bothering him all day.  I was hoping it was just a bad day.  Last night he came in about 10:00 to ask for the heating pad with tears in his eyes.  Stomach was really hurting.  Was in a lot of pain this morning.

Spent most of yesterday at ER with my 86 year old grandma who fell out of bed and looks like somebody beat her with a stick, luckily no broken bones but they did a CT scan of her head as her entire face is swollen and black and blue.

Guess I will be making a call to the GI today to see what we should do.


----------



## Clash

Sorry to hear the symptoms are coming back. Do you think that the appt. will now be moved up? It does sound more like a flare with the symptoms returning after the tapering of pred. Things are not going great here but I'm not sure what to make of it, either. I'm going to update my thread and see if what you guys think.

I do think it is odd the number of parents who are posting there kids are having issues, maybe something to be said for the seasons change? I don't know, this disease befuddles me!

I hope you can get some answers quickly and that the pain soon subsides! Hugs and Support!


----------



## Tesscorm

Aww, Jacqui, sorry his symptoms are coming back. :ymad:  Poor guy, breaks my heart when these kids have to deal with this stuff repeatedly. :voodoo:  :voodoo:  

I'm sure the GI will move up the apptmt - he can't leave things as they are until December!  

Still hoping it'll simply pass though... :ghug:


----------



## Jmrogers4

Just got off the phone with GI, plan is increase Pentasa to 3000mg a day either 3 pills am and pm unless he starts having side effects (headaches, nausea) then try 2 pills 3 time a day and either full course of prednisone or EEN.
I have a feeling Jack is going to want EEN he was just saying this morning, he doesn't want to do prednisone.  So 8-9 cans a day for 4 weeks and assess.
On the table for discussion - moving back to Azathioprine.  Labs were not horrible on it but no where near as good as they were with LDN prior to all this.  So is LDN losing its effectiveness with him?  Just not sure.

Also talked about moving up appt to 3-4 weeks to unless he is feeling absolutely fabulous at the point (I hope so)


----------



## Clash

Sounds like the GI has a good plan moving forward. Maybe the increased dose of Pentasa and the added treatment of EEN will get things back under control and have him feeling fabulous!!


----------



## Mehita

I'm sorry, Jacqui. I hope EEN brings some relief.

I'm sure you've probably posted this somewhere... are you trying to avoid or postpone the biologics? Is that why that hasn't been discussed?

And his pain, is it more like cramping or more like sharp? I just don't see how these kids manage. Breaks my heart. And they just soldier on...


----------



## Jmrogers4

More like cramping, or spasms, especially after eating.  We have discussed biologics but he is not good but he is not BAD ykwim.  He hasn't missed any school it's more like he is almost there but not quite.  We are hoping that whatever it was with the antibiotics and c-diff that seemed to have thrown everything off we can get the inflammation under control and hopefully the Pentasa and the LDN will keep it there.
Although neither one of us is actually really hopeful about the Pentasa, his dad was on it for quite some time and it really did nothing for him.  He ended up in the hospital twice with abscesses while on it.
So I guess we may be just putting off the inevitable but feel we have to try all the little tweaks first in order to justify that yes that is what we need to do because what if the little tweaks work and we get another year or 5 years or more.  I don't know if I'm making any sense, to tell you the truth this week has been awful and really all I want to do is crawl under a blanket and hide.


----------



## Mehita

It makes complete sense.

Wish I could give you a hug!


----------



## DustyKat

I agree with Mehita Jm...it makes perfect sense. :ghug: 

Here's to tweaks that last until a cure! and hoping more than anything that you are able to nip this in the bud Jm. 

In my thoughts. :heart:

Dusty. xxx


----------



## Niks

:ghug: hugs to you 

Hope tweaks work too xc


----------



## Farmwife

I completely understand.:hug:
I've already thought up a few different tweaks.
Now just to get the docs to agree.


HUGS


----------



## Tesscorm

More hugs...  between Jack and your grandmother, you have had a tough week. :ghug:

I hope Jack stays on board for the EEN and that it lessens the inflammation straight away!  How was he today/tonight?  Thinking of you... :ghug:


----------



## Jmrogers4

Thanks Tess he is doing okay, doing his homework and sucking on a jolly rancher.  He is totally on board as he absolutely does not want to do pred.  Ask again in a few days it may be a different story. :eek2:


----------



## Tesscorm

I so hope it does the job!  Such a huge challenge, I really don't know how these kids do it! :ghug:


----------



## CarolinAlaska

Sorry he's suffering again.  Blah!


----------



## Clash

Just checking in to see how Jack is doing? Hope all is improving!


----------



## Jmrogers4

Thanks for checking.  He is doing pretty well, feeling better as everything smells SO GOOD!! and he wants to eat which as you all know is a big change for him.  I think I could get him to eat anything now. Weight is down to 91 lbs but seems to be holding steady there.

He has gotten 2 huge pimples this last week  never had one before so I don't know whether to attribute to the EEN or is he finally showing some minor signs of puberty! Which lead to a big discussion on properly washing your face.

Fatigue seems to be back to normal teenage fatigue.  He is almost impossible to wake up but is not dragging the rest of the time.  The smoke alarm went off last night at 3am for some odd reason.  The rest of us were up and out of bed checking everything.  He slept through the entire thing.

I'm anxious for it to be over but I'm afraid to feed him normal food again, ykwim.  He hung out with a friend this weekend and I was so proud he was very responsible and packed himself a cooler of shakes to take with him.


----------



## Clash

So glad to hear things are improving and that he is doing so awesome with EN. Oh I hate seeing the fatigue, I happy he is starting to get over that, it is so hard to watch. It sounds awesome that he has been out and about with friends!

I'm hoping that food introduction goes smoothly and wonderfully for him! How much longer until EN is ended?


----------



## Jmrogers4

We will be 3 weeks on Thursday so 3 to go!  GI said 6-8 weeks so based on how he is doing now I'm thinking we will add chicken broth and that kind of stuff after 6 weeks instead of going all 8 weeks on EEN. 
So broths, jello, etc week 7 with still majority shakes meeting nutritional needs
Chicken, white rice, applesauce etc week 8 and cut the shakes some more.
He has written a food wish list instead of a Christmas list and placed it on the fridge - Of course topping the list is Fried Chicken, Pizza and McDonalds.


----------



## Clash

Haha!! Love the food wish list!!! That sounds like a great food reintroduction plan. C was really impressed when I told him that Jack was doing EEN and drinking the shakes, he said "He's the man for drinking them!" and to send his support.


----------



## Jmrogers4

Sorry I have not been around the last few days, I have been at the hospital with my mother.  Apparently she has gall stones which have blocked the bile duct and caused pancreatitis and her liver to become inflamed.  Pancreas levels were at 20,000 yesterday apparently normal is around 300.
Won't do surgery to remove gall bladder until the pancreas levels are down.  Heading back to the hospital in a little bit to speak to surgeon.
Jack is doing well, it will be 4 weeks on Thursday!  Although if I'm not around he will not drink all his shakes ARGHHH.  Hubby just doesn't think about it and Jack needs reminding or it will be 4-5 hours before he gives it a thought.  I came home the other day about 5 and he had 2 shakes up to that point!


----------



## Tesscorm

I haven't been around much lately too.  But, I'm so glad Jack's doing so well!!!  I really hope you have no problem reintroducing food!!!!   And, love that food wish list!  Gotta admit...  those are some of my favourites too! :blush:

Sorry to hear about your mom!  Hope she's comfortable and they can move ahead with treatment (surgery?) soon. :ghug:


----------



## Sascot

Sorry to hear about your mom. My mom has just been in hospital with a kidney stone and she was really not well. Hope your mom recovers soon. Glad Jack is doing good.


----------



## Jmrogers4

I got so angry last night at the surgical nurse when she came in.  Surgeon never came and she kept telling us he had.  I asked how low did her lipase levels need to be before they would perform surgery did they need to be at normal levels (300) or would they do the procedure if they were slightly elevated.  She looked at me and in a very snotty way asked "Are you a nurse? Her levels are at 3300, we're not doing surgery when they are that high."  Seriously! Not what I asked...  Still haven't talked to surgeon!


----------



## Tesscorm

OMG!!!  What a b...h!  I hope you were able to come back with some snarky remark!!!  (But, if you're like me...  the great comments you 'should have' said come 3 hours later! :ybatty

Hope you get to speak to the surgeon soon!


----------



## Jmrogers4

One Month on EEN!!! So proud.  We are going to the Macklemore & Ryan Lewis concert tonight.  I called the venue about bringing in his shakes.  They were awesome.  Head of security is going to meet us at the security entrance and let us in with them.  They were pretty cool said we don't want him going hungry.  Got his report card today and had parent teacher conferences.  All A's except one B in Conceptual Physics.  His teachers couldn't have said enough nice things about him they were all in awe of how happy and confident he is with all that has been going on with his health since school started.

Even got to talk to the baseball coach who happens to be his PE teacher as well and he was commenting on how glad he was to have Jack in his class and see what a good athlete he is and what a leader he is since there are 41 kids trying out for the freshman/sophomore baseball team, he is glad he has more to judge him on then just the 2 days of assessments that will happen in January.


----------



## Mehita

Woohoo, Jack!!


----------



## crohnsinct

That's Our Boy!!!!!!  :applause::applause::applause:

Going to you tube Mackelmore and Ryan Lewis now.....


----------



## Jmrogers4

5 weeks!! But he is down to 88 lbs, that is a 10 pound drop from end of June!  Says he feels fine otherwise.  Talked to GI yesterday and he says go ahead and add food back but keep most of calories coming from shakes and if he does not put the weight back "we need to have a serious discussion about disease activity and treatment" - whatever that means...


----------



## Clash

Yay, that he gets to start adding back in food!! I hope he gains some weight with eating!


----------



## Jmrogers4

Thanks, he was very excited to have some stewed chicken and rice for breakfast but didn't eat much before he was full.  He did also have a Peptide shake this morning after.
He just texted me from school to ask if he could have Mountain Dew - Uh NO!  I guess he at least asked before just drinking it.


----------



## Mehita

When was the last time he was scoped or imaged?

Yeah for food!


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## Jmrogers4

February and all good/clean, blood tests all normal.  Did supplemental EN at that point to put some weight on as he was 1st percentile (5'1" and 77lbs) got up to was at 98lbs in April appt. and declared "in remission".  Started having symptoms in August (weight at 95).  FC done in September showed inflammation but blood test were normal or just slightly elevated from February labs but still within normal ranges/levels (weight at 93).  Did 5 day burst of prednisone thinking we could knock inflammation down but was still having symptoms so EEN instead of full course of pred.  Pain/cramping is gone.  Eczema still present on his arms in the inside bend of his elbows, one BM a day, all liquid (I'm assuming from the shakes) and he is in the bathroom for 20-30 minutes.  Next scheduled appt is for Dec. 9th. and had planned to repeat labs at that point.
I have to remind him to drink a shake every 2 hours as he just doesn't feel hungry.  I think he is still the same height he was last December although he may have been 5' at that point - so 1" for a 13-14 year old.  I know he has not grown since April since nursed commented at appt. in September he was the exact same height.


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## my little penguin

Hugs sorry to hear things have not turned around...
Can they get you in sooner or check blood sooner than dec?
Only ask since he seems to be hanging on and not growing or thriving 
Then add in his age ....only so mAny griwing years..
I know you are trying to avoid changing meds ..
But is your Gi willing to discuss other treatments .

For a comparison DS is 9 and is at the 75% for weight (78 lbs) and 66% height 
(4'7") after not growing or gaining for very long time

Good luck


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## Jmrogers4

I think that is just what he is thinking that we are still in that "failure to thrive" but figures the next couple of weeks as we add in food with out lowering shake amount that he will hopefully gain weight.  
But I agree about getting blood checked sooner, I think we already have an order at the lab for his Dec. appt. - He usually likes them done before appt. so we can discuss results.  I'm wondering about another FC though.  Guess I better call on Monday.


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## Tesscorm

When Stephen was on exclusive for six weeks, he gained only 10 lbs...  once we added back food (but kept supplemental EN at 1500 cal/day x 5 days/wk), he gained almost another 20 over the next six weeks.  You'll, hopefully, notice a bigger gain in the coming weeks. :ghug:


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## DustyKat

I hope things improve with the add in of food Jm. :ghug: 

Congratulations and well done to Jack for continuing to do so well with studies! What an absolute champion! :medal1: 

I'm so very sorry to hear about your mum.  I hope her lipase is soon down to a level that is safe to operate. As to the nurse...what a cow...tell her to go suck on lemon, maybe it will sweeten her up! Grrrrrr. 

Sending loads of luck and well wishes to Jack and your mum. :goodluck:

Dusty. xxx


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## Jmrogers4

In a state of flux.  We have added food back in and kept to 8 shakes a day.  He has gained a pound so hoping that will continue to climb.  He is still never hungry and I have to constantly nag him to eat and/or have a shake.  No visible symptoms so I'm hopeful we can continue improving.  We do labs last week of Nov/Dec 1st for appt. on Dec. 9.
I'm still worried about lack of growth he is same height as Dec. last year so does that mean we are missing something? I'm willing to watch weight over next couple of weeks to see if it continues to improve but #1 on my list for GI is his lack of growth.  Do you think I should ask for referral to endocrinologist?  He was 4'10" at 10 years old in 2/2010 when he was diagnosed and is know 5'1" nearly 4 years later (a total of 3" just does not seem right for that age range and time frame).

Mom is continuing to improve.  She and Jack are pretty much on the same diet currently.  After a week in the hospital they were able to do the surgery and remove her gall bladder. Lipase was at 600 and they figured they could not wait for it to go any lower.  She will have her levels retested this week and if they are all normal she is good to go.


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## Mehita

I don't think it would hurt to see an Endo. Our GI said that 14 is the magic age in his book. If boys haven't started puberty or aren't growing at this age, then it's a concern that needs investigating. And I vaguely remember him saying something about growth hormones... something about them being pointless for IBD kids and that's why he felt there was nothing that an Endo could do for us. Just his opinion that I took with a grain of salt. If DS doesn't pick up steam soon, we'll be seeing an Endo as well.

So glad your mom is on the road to recovery. One less ball in the air maybe?


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## my little penguin

Normal kids before puberty should be averaging 2" a year - not 3"total in 4 years.
After 12 even more upwards of 4 inches per year so ...
Please call an endo ASAP .

The body holds nutrients for heart to beat etc... First
It holds the second set of nutrients for brain development and other organs
Third set goes to growth / weight gain

So if your are not growing the odds of doing damage to other things increases greatly.
It is not a matter of just being taller.

Kids that are Ibd healthy should stay on their growth/weight curve from age two .

http://www.medscape.org/viewarticle/432565_1


Hugs


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## Jmrogers4

Looked it up today, one office in Boise and only takes patients by referral so will talk to GI about referral.  Thanks MLP that is kind of what I was thinking.  Given at 2 he was 90th percentile in height and 75 in weight.  He has supposedly been in remission for a lot of that time in that he was having no other symptoms but lack of growth and it was just always said well he'll grow any time now.
His brother is averaging about 3 inches a year.  They are currently the same height, his brother is 12.


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## jmckinley

Ryan's height/weight was at a stand still at 14 also. He did have some inflammation going on then. He finally took a height growth spurt at 15, growing about 1/4 inch every 6 weeks or so. He is still growing in height, as for weight...that ones still a struggle.

Hooray on the great grades! Amazing kid to handle studies in the midst of all of this!


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## Jmrogers4

Just talked to GI and before I could even say it, he suggested endocrinologist.  He is sending referral over today.


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## kimmidwife

Glad to hear the GI is on the ball! Always nice to hear about positive experiences with doctors


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## Clash

I hope you get a quick appt from the referral! Sounds like things are going in the right direction!


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## Jmrogers4

Just got an email from the GI saying he is just put in lab orders for some general screening endocrinology labs for us to do, they may order more but this will give them a head start.  Any idea what they are?  And he wants another FC.
His school's varsity football team is so far undefeated and they are playing in the semi-finals today 3 1/2 hours away.  Jack is taking the Pep bus after school to the game which starts at 8:30.  They are expecting to be home at 3 am!  I'm glad he is feeling well enough to go but I'm feeling sorry for myself because once I get up a 2:45 to go get him, I'm pretty sure I will not be going back to bed


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## Farmwife

Grace just had the whole blood work up for this. 
I'll look at the list and get back to you.


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## Farmwife

Sorry 14 pages of labs and their no categorized but on her summery from the Mayo Endo it names a lab test called* Fractionated acylcarnitine*.

Sorry


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## Jmrogers4

Thanks farmwife.  I just have no idea what is involved other then a bone age scan.
It's 10am, how long should I wait before calling the endo?  Now that the plan is in motion I want to get a move on.  (Not impatient or anything? Am I?)


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## crohnsinct

My younger daughter is seen by an endo but I can't be of assistance with labs as I don't watch those.  I do however think a bone age hand x ray before going is also a good idea.  This way endo will have lab results and x ray and you will be ahead and ready for action.


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## Jmrogers4

Appt. Dec. 31st! Happy New Year!


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## DustyKat

Hey Jm,

I imagine an endocrinologist would do as you have said bone scans, plus bloods for things like growth hormone and thyroid function. They also look at chromosome disorders that cause growth failure. 

Good luck with the appointment! 

Dusty. xxx


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## Jmrogers4

Went for labs yesterday, 12 vials of blood and Jack says the plebotomist was not very good and he has a huge bruise on his arm to prove it.  Normal labs for GI done, CBC, ESR, CRP, Vitamin D plus general endocrine screenings for endo appt.  GI ordered to give Endo a head start. 17-hydroxprogeserone, Androstenedione, DHEA Sulfate IGF Binding Protein 3 and Growth Hormone (HGH) and we brought home a hat and cup for FC.  He is fairly constipated and had one little nugget yesterday, I didn't think it was enough for test so I didn't bother with it and he has not gone today.  Hopefully after big Thanksgiving feast he will be ready  
Feeling good otherwise no pain eating pretty much everything he was eating before EEN just in smaller amounts and drinking 4-5 shakes a day still.  Small amount of eczema on inner elbow both sides. Should get results back next week and GI appt on the 9th.  If I could go by just the way he is feeling my guess is they will all be within normal levels. (fingers crossed)


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## Sascot

Glad things are going well.  Hope the labs come back good.


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## Gmama

Hi JM!
Our sons are about the same age, and my son has not grown in about a year and a half. According to our new GI this is a crucial time for LJ to grow and he needs to be gaining weight for that to happen. When we started seeing him LJ had not lost weight, but had not been gaining either & he said that in itself was considered failure to thrive (which no doctor had ever said to us before) It was just another thing to feel bad about...I'm the mom letting my kid walk around with a failure to thrive
Anyway, I'm glad you are getting Jack to the endo & I'm curious what their take will be on the situation & what is the real time frame for growth in boys. 
Have a Happy Thanksgiving!
Ginger


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## Jmrogers4

Yes Gmama that is where we are at we had the failure to thrive label last February and he was put on supplemental EN and gained weight as far as height or any sign of puberty - nada.  As you say this is a crucial time for growth and most kids this age seem to grow 3-4" a year, Jack has grown 3-4" in the last 4 years.  Endo may say we just need to be patient but we need to figure out if there is something that is causing lack of growth.  I'm not very tall 5'4.5" but his dad is 6'1" and my nephew who is the same age just hit 5'6" (Jack was always taller then him) the same height as my brother and his wife is only 5'3".  Jack's younger brother (12yo) is the same height and has grown 3" in the last year and looks like he is about ready to take off.  His feet and hands have gotten huge.  He is wearing a size 9.5 (dad's a 10.5) and he ate 1/2 a pan of lasagna last night where Jack eat one small piece.
I'm really nervous about the endo that either he is going to tell us nothing is wrong and leave us with no answers about lack of growth or that something is seriously wrong and he has some other disease.


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## Gmama

JM I'll be praying that you get some good solid advice from the endo that will help Jack soar! 
Chances are Jack's lack of growth is just the darn wretched evil Crohn's
I hate how there is no clear cut anything with this disease, and even when I think I know where we are between symptoms, weight gain or loss and blood work, then in a week something changes and everything that I was positive about is literally flushed down the toilet!:lol:


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## my little penguin

I can say that DS didn't grow when he was en even though he gained weight until he was on the right meds .
Hope your endo visit is fruitful


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## xmdmom

Thought I'd chime in given that I have some expertise in the area of growth.

Forgive me if you have already answered this... Does Jack have any signs of puberty? Slow growth relative to peers can occur secondary to later than normal puberty.  Later puberty is often familial* but puberty can also be delayed with chronic illness.  Crohn's with ongoing inflammation and/or low BMI are definitely reasons for slow growth and delayed puberty.  Sometimes slow growth or delayed puberty are the presenting symptoms of Crohn's which I take to mean that Crohn's w/o a lot of gi symptoms can still be associated with poor growth.  

*(Is there a history of later than normal puberty in you (later menarche) or dad (late growth spurt)?) 

Over the 4 years with 2 inches of growth, was Jack primarily normal weight or  underweight?  in remission or with inflammation?

Was Jack on steroids for some of these 4 years? If so, how long? Steroids certainly can slow growth if given over a long enough period of time.

The usual w/u for short stature, should be an evaluation of the growth chart, hx, physical exam, bone age of wrist, thyroid function tests, IGF-1, and other tests to r/o silent organ dysfunction/chronic illness (CBC, ESR, lfts, bun/cr, urinalysis).

I am somewhat confused by the labs that were ordered.  Some (the adrenal hormones androstenedione, dheas and 17OH progesterone) seem extraneous.  A single GH sample is usually not helpful since GH is secreted at night in pulses and usually low in the day.  IGF-1 is usually used to screen GH def, but please note it  is also low in thin/ nutritionally depleted children.


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## Jmrogers4

Thanks xmdmom.  I'll try and answer your questions.



> Does Jack have any signs of puberty?


None, he could not shower for 3 days and he doesn't even stink (I still make him shower every day but there have been a few long weekends).



> *(Is there a history of later than normal puberty in you (later menarche) or dad (late growth spurt)?)


I was 12/13 at first menses summer between 7th/8th grade and I have a summer birthday.  Dad was 11ish and his mother confirmed that.  He was tall in 9th grade, one of the tallest in his class.  He is 6'1" now.



> Over the 4 years with 2 inches of growth, was Jack primarily normal weight or  underweight?  in remission or with inflammation?


Most definitely underweight until about February.  He was 77lbs since about 6th grade and in remission for most of that time, at least no inflammation showing on labs.  His GI was always he'll grow now that we have the crohn's under control.  It just never seemed to happen.  So before diagnosis he was in 80th percentile for height and about 50th for weight.  He just seems to keep falling further down that growth chart.  I think he is about 10th or below on height now.
He has been healthy BMI since Feb/March 2013 and has not grown at all.



> Was Jack on steroids for some of these 4 years? If so, how long? Steroids certainly can slow growth if given over a long enough period of time.


Jack was on prednisone at diagnosis (age 10) for I think 4-5 months including weaning off and for a 5 day burst in August.



> I am somewhat confused by the labs that were ordered.  Some (the adrenal hormones androstenedione, dheas and 17OH progesterone) seem extraneous.  A single GH sample is usually not helpful since GH is secreted at night in pulses and usually low in the day.  IGF-1 is usually used to screen GH def, but please note it  is also low in thin/ nutritionally depleted children


.

I wasn't sure about any of these and the GI ordered them as a head start for the Endo, so we have not had the Endo order any tests as of yet so I imagine more will come after appt, unless these tell him what he needs to know.  I've tried to research some of them but couldn't seem to come up with any good answers.


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## xmdmom

I would guess that the low weight, Crohn's inflammation and 5 months of steroids have contributed to the poor growth and delay in puberty.  It makes sense to see an endocrinologist to make sure there isn't anything else.  You would expect growth to improve when the inflammation and weight got better.

How long has he been on LDN?  I don't think anyone knows the effect of LDN on growth or puberty. The studies were too short to evaluate these possible effects.

saw this article in rats 
http://www.sciencedirect.com/science/article/pii/0024320583906392


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## Jmrogers4

He has been on LDN of 18 months, thanks for the article I have never seen that one before. I will repost in LDN section as there have been a couple people just recently who were inquiring about weight gain/loss on LDN.
I didn't think 4-5 months of steriods almost 4 years ago would still effect him?
His GI has already suggested if Endo finds nothing that we move to remicade as he has seen good growth in his other patients on it.  I told him whatevever we need to do at this point we are open to


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## xmdmom

The 4-5 months of steroids most likely impaired growth during that period of time and if health and weight weren't optimal afterwards, there may not have been any catch up growth. But it sounds like the steroids have been only a minor contributor to the growth issue.  Good luck sorting things out. At 5' 1" and no signs of puberty, he most likely has good growth potential.


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## CarolinAlaska

Hi J, just checking in on how you and Jack are doing.  We started with endo, and didn't find anything, but they are the ones who sent us to GI where the real answers were.  Let us know what becomes of it.


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## Jmrogers4

We have GI appt on Monday. Did labs and FC last week.  Not expecting FC back by Monday and think labs will be fine they usually are.  Weight is holding steady at 93lbs.  He is still drinking 4-5 shakes a day.  If he drinks any less then that the weight starts dropping.  He is feeling good otherwise.
He's got a head cold now and end of semester tests in a week so I hope that doesn't cause any problems.


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## DustyKat

I hope the Monday appointment goes well Jm. Good luck! 

Dusty. xxx


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## kimmidwife

Hope the appt goes well!


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## Jmrogers4

So not very happy  Was sure that everything was going to come back normal.  FC in Sept. was 293 up from normal base line one of 90 so while not significantly higher this time 353 it is still going in the wrong direction.  GI believes there is simmering inflammation in small intestine or maybe some stricturing which could account for lack of appetite and growth.  MRI scheduled for Friday.  For now we are adding Imuran/alipurinol back in the mix.  Stopping the Pentasa.  He will continue on LDN for the time being since Imuran needs time to work.  Although results from MRI could throw everything out the window based on if is seen there or not.  Oh but he has grown about an 1/8th of an inch.
He gave me copies from the blood tests that were ran for endo, said they looked okay to him but he did not know anything about it 
17-OH-Progesterone was at the minimum level of 16 for normal range of 16-283; Androstenedione was low 21 for normal range of 22-225.
So we'll just have to wait till endo to find out more on that I guess.


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## my little penguin

Hugs sorry it is increasing.

I may have missed it but why back to Imuran if you didn't see growth the first time on it ?
I thought you had said remi - maybe I am getting confused .
It does happen easily these days .


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## Jmrogers4

Yes we thought Remi as well but GI says he's not "bad enough" for remi - I'm a little confused myself since I'm beginning to wonder about inflammation all along and how long it has been going on since we've only recently done FC and blood tests have never shown anything as he says he is not surprised at that since inflammation is not very high... We go back in 2 months and another FC at that time unless everything changes with results from MRI.
I guess I don't really know why we are doing Imuran again I was a little shell shocked by the FC as I really expected it to be normal as Jack has been feeling well and was not prepared for a medicine discussion until possibly after endo appt. Who knows maybe the combo of LDN and Imuran will work wonders.  I'm a little confused.  I think he just doesn't want to go there until we have no other options. He did say we need to see results quick since Jack is in that puberty window.


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## my little penguin

Just my mommy two cents ( not a doc).
We got the he isn't bad enough for remicade speech as well.
However with DS he wasn't good enough on 6-mp so Gi tried Mtx which turned out tone a disaster . I know our Rheumo was the push for remicade for DS otherwise I think he would have been back on 6-mp. It was that miracle drug.
As far as saving it - just went to a ccfa program for Ibd parents which showed surgery is 10x less likely for an Ibd kid if remicade is used In the first three months of dx.
They know it works well and changes the disease course .
They also know what will likely happen with the normal drugs since that has been proven to not change the disease course kwim.
Is your gi the type who will discuss his reasoning why especially if a med failed before .
I know I have asked more than a few times when we make a med change so everyone is on the same page.


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## Jmrogers4

I honestly think we are putting off the inevitable and will be on remicade.
He absolutely will talk about his reasoning in fact he likes to talk it out to himself in the appt.
Reasoning blood test were good on Imuran (yes but we never did FC so maybe there was the same level of inflammation going on then and that is why we did not have growth) which is why we are doing another FC in 2 months.  His words were he's not really bad; inflammation is not very high only slightly elevated and symptoms are not present (we have never had hospital stay, surgery, etc) so he would rather keep it in his back pocket.  But growth is going to be watched very closely and checked every 2 months.  I think he is hoping Endo will be able to shed some light on lack of growth and it is not Crohn's related. (I think it is but I can wait a couple of more weeks until we see Endo)
So after having a little more time to think it over I'm thinking I will give until Feb and if there is no change I will say Remi.  I guess I always thought he would tell me  when/if it was time to go there but I think I'm going to have to go with my gut at that point and say I think we need to try.  Goodness I don't know if I'm even making any sense..


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## my little penguin

You are making sense .
Its a big step and like you we thought gi would go there straight away after mentioning it to us .
We also got the dance for two
Months .
I can see the GIs point because now you take my kiddo 
Who is nine and has little drug options left .... But is growing and last scope was clean as in all normal biopsies and FC was 82 so....it's always a risk 
And I am glad we took it ( no hospital stays surgeries abscessed fistula etc for DS either )
No thickening of the bowel or scar tissue 
And I would like to keep it that way thank you very much


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## Mehita

I think you know our story... simmering, low level inflammation for a long time. Never impressive enough to catch anyone's attention until it was too late. Then boom: surgery, flare, abscess, fistula all in one year's time. Putting myself in your shoes, I don't know which way I'd go either, but I would definately monitor that inflammation. 

I see the GI's point on Remicade, but at the same time, this is such a critical age. You only get one shot at puberty. That was a factor in our decision to go to Remicade. We felt we didn't have any more time to experiment and wait around for other drugs to work or maybe not work. You could be talking another 6 months here and he's already almost 15, right?

I think the Endo appt is going to be the key and will really guide you as to what to do next.


----------



## Jmrogers4

Yes, I think I'm kind of waiting to see what the endo has to say.  So at the next appt Jack will be 14 1/2 + 1 week.  If inflammation is still there I think I will tell him we want to try Remi.
LDN worked really well at first and I'm thinking/hoping he can go back to it some day maybe after he is done growing. 
But I kept thinking about you today and how well your son is doing so far on Remi and hoping there is nothing found on MRI on Friday.


----------



## Mehita

The other thing that convinced me was that Remi works for 75-80% of people the first year. It does tend to drop after that, but in my mind, getting even that little bit of time to grow and feel good is worth it. In your case, you could always go back to Azathioprine later, right? I forget why you dropped it...?

Good luck Friday!


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## DustyKat

I have done much soul searching and reading over the years and have, no doubt like everyone on this forum, developed my own ideas about Crohn’s…its causes, its treatments, its reactions and its responses and so these are just my own personal thoughts: 

As much as I find the step up approach the more appealing and palatable road to take I very much believe in the top down tact. I think I feel this way because of the way the disease presented in my children, it was hard, fast and unyielding and as such I was given no choice in their outcomes. In many ways this has been a blessing because I wasn’t given the opportunity to think, to ponder and to second guess. 

I agree with mlp regarding the biologics ability to change the course of this disease. A deep stable remission ASAP is in my mind a far better outcome than playing catch up because catch up means you are running behind the disease and it is dictating the race. 

As you know, my two have had wonderful outcomes from their respective surgeries but they do live with a legacy from it and given a choice I would have chosen medication over surgery if it was an option. I know this isn’t the decision you are facing and in given situations surgery is indeed the best option but the opportunity to change this disease and stop it in its tracks with medication, thereby allowing you to take control of the race, is priceless. 

There are no guarantees no matter what path you choose and more importantly there are no wrong or right decisions but rather what is best for your lad and your lad alone. Good luck hun, my thoughts and well wishes are with you. :ghug: 

Dusty. xxx


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## Johnnysmom

I know these decisions are so hard and there is never an obvious answer, but I think you have gotten some great advice and it sounds like you are headed in that same direction.

I have thought of the issue of "saving remicade" too.  I think of it this way, get Jack in really stable healing remission, and out of puberty so his mind and body and grow and develop healthy.  6mp will always be and option again later and probably some better drugs too.  

Never easy decisions.  (((((Hugs))))):ghug:


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## Tesscorm

I'm sorry the results were disappointing.  And it's so hard to be in the situation you're in...  making these decisions is so very hard. 

As much as I hate these meds, given Jack's age, getting the inflammation eliminated may need to take precedence over all else (at least, for now).  As you and others said above, you can always return to other meds later... whether it be imuran or LDN.  But, hopefully, by that time, he will have grown and may even be beyond his growing stage.

I always feel like we're up against a wall - I hate the thought of adding remicade when you can't see 'extensive' inflammation on tests; seems to leave so much doubt as to whether it's the right thing to do BUT the consequence of not treating the 'hidden' simmering inflammation can just suddenly sideswipe you and leave a lasting impact.  While I wasn't truly happy/comfortable with the decision to add remicade to Stephen's treatment, I did it for all the reasons others have listed above...  trying to avoid all permanent, lasting impact such as surgery, scarring and, in Jack's case, lack of growth.

sorry, I'm rambling a bit but I hope I made sense... :ghug:


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## crohnsinct

Sorry to hear there is still some inflammation.  Just want to add to the chorus about going back to the other drugs later.  

For O we weren't given a choice as she was deathly ill so Remicade was the only option presented and the longer I hang around here the more comfortable I feel about it.  She has been on it almost two years and no flares at all!  

All the drugs have similar risks so to me the Remicade risk isn't that much worse.  Also imho Remi has less side effects.  I understand the thought of "saving" it but like others have said when they are kids you get one shot to grow.  Also, the disease is more aggressive in kids.  If Remicade can get them into a deep stable remission I say go for it.  You could always go to the other drugs later, and there are more in the pipeline. 

I hope the endo can shed some light on things and that your decision comes easier and if you do go to Remicade that it is his miracle drug.


----------



## Jmrogers4

Thank you everyone, I'm still a little shell shocked.  I was really expecting everything to be normal.  He has energy, is not pale, 1 solid BM a day.  Only things are lack of growth and no appetite but I could reason away the lack of appetite thinking it's psychological and he just needs to remember to eat and figuring we would get some kind of answer on lack of growth from Endo.
A big glass of wine helped me get to sleep last night but it certainly did not keep me there.
Off to scour the forum for all your experiences with MRI since we have never done one.


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## Mehita

Is he doing contrast? MRE vs MRI?


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## Jmrogers4

Orders say MRI/enterography with and without contrast - I'm assuming that means MRE?  No milk for 8 hours before, nothing for 4 hours before.  Does that sound like MRE?  They scheduled MRI for us at local clinic which is about 2 miles from our house for today but they called right back and said no it was more involved and we have to do at the hospital and earliest appt was Friday.


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## kimmidwife

Don't have much more to contribute then was already discussed but want to wish good luck for the MRE.


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## Mehita

Based on his weight he's going to have to drink about 800 cc's of the contrast. How does he feel about NG tubes? That would be the quickest and most efficient if he can tolerate a tube. Especially since he seems to get full quickly and doesn't eat much. The contrast might fill him up too fast or he might not be able to get enough in and the worst thing to happen would be to "time out" and be sent home with no MRE. The NG tube bypasses the stomach. The more contrast in him, the better the pictures. Otherwise...

It tastes better cold and MLP suggested one time to bring Kool Aid packets to flavor it yourself. Don't use a straw, it just adds air. Walking around to get it moving through his system can be helpful. When things get tough, turn it into a game: every 45 seconds drink for 15 then take a break. The first time we did this several years ago I brought a small Lego set. With each drink, DS was allowed to turn the page in the instruction book.

Tell him he's going to be holding his breath a lot, sometimes for 20 seconds. If you can go in with him and hold his hand, work out some hand signals between the two of you. A squeeze if something is wrong. Pinkie lock if all is well.

Some people vomit when the Glucagon is added. I don't know if you want to give him a heads up on that or not.

After, drink lots and lots and lots of water to flush everything out.

Ummm... what else?


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## Jmrogers4

He has never had an NG tube so I don't know.  But based on the shakes I'm going to assume he would rather try and drink it.  Can we quickly move to NG tube if he can't drink?

He would rather be fully informed so he can prepare himself but I might not tell him tell that morning so he can't worry over it too long.  We have a 10am check in.

He knows he has to drink yucky stuff but not how much.

So he is going to feel yucky afterwards?

Alright I'm trying to think of a good bribe now.  Maybe money and extra xbox time...


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## Mehita

Will you be at a children's hospital? The way it worked for us last time was that we had to schedule the NG in case he couldn't get all the contrast down. This ensured that someone was around and an x-ray room was available and we didn't disrupt the MRI schedule too much.

After DS tried Child Life said we should probably switch to NG. We went to an x-ray type room where DS laid on a table while they inserted the tube. They used an x-ray machine over his stomach to guide them on where to place the tube. Watching the screencast an be a good distraction. Or not. Once in place, they used syringes to pump the contrast in slowly. No matter how slow they go, DS always vomits up some, so bring extra clothes just in case. He will feel very full. Maybe nauseous. He really needs to try and keep it all in though.

After the MRE, he might be a little tired. All that breath holding can be quite a workout. Maybe a little nauseous then too, but generally DS recovers pretty quick, especially with the extra water. Oh, and expect watery stool that night.

Now, I should caveat all this by adding that my son is a horrible patient and Jack may be perfectly fine with everything. We just tend to give doctors, nurses, and hospitals a run for their money around here.


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## Jmrogers4

No we have never done anything at the Children's Hospital although his GI is a part of it an located in the same building.  It's all under one complex.  They are under the umbrella of the main hospital - St. Lukes, St. Lukes Children's.  
We are actually going to the St. Lukes in the neighboring town as they had first available opening which is what his GI requested which is only about 10 miles from our house.
Okay making my list, extra clothes for him, bribes and a large bottle of wine waiting at home for me..
Of course he has finals next week which is not helping our stress levels.... Hmmm might need something stronger than wine.  Have plans to go Christmas shopping with my sister on Sunday (Her daughter has been having tummy issues and they have her on omeprazole and a food diary for now) and we were going to stop for some hot toddies.  We may have to have someone come pick us up.


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## Johnnysmom

Johnny had no problem drinking the contrast.  The nurse added crystal light and it did improve the taste.  He was given zofran before he started drinking it, I think it was good he didn't know it might make him sick.  He never complained a bit.

The glucagon was a different story.  He felt dizzy, tingly, numbness and felt like he was going to vomit.  It freaked him out and he thought he was having some life threatening allergic reaction.  I would just give your son a heads up that it isn't abnormal to have a reaction and he could feel hot, dizzy or numbness but that he will be fine and it will pass quickly.  Johnny felt better about 5-10 minutes later so it didn't last long at all.  He ate some gold fish, had a slushy and we went home.  The worst part was the fear he had that it was a major reaction.  Over all, not a bad experience at all.  It certainly helped that the nurses and staff were wonderful and tried to make him as comfortable as possible. 

(((((Hugs)))))) I hope all goes well.


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## Johnnysmom

Also, the way the staff reacted I don't think that a reaction to the glucagon happens all that often.  Hopefully he won't have an issue at all


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## MomRocksOut

My son had a really hard time drinking the contrast.  In the end, he just drank it too slowly and the contrast wasn't were it should be by the time we had the MRE :frown:  We had to reschedule and go back and that time did the NG tube.  Wish I'd done the tube the first time. 

You might want to check on NG tube - we had to have x-ray etc so many people involved.


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## my little penguin

DS had two or three mre plus two CTs
He had to drink barium
Three cups
Just added  cherry Kool aid single pack split between the three cups.
Cherry covers all taste .
No issues .
Just boring laying on your tummy


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## DanceMom

A had an MRE and it wasn't a fun experience.  She said the barium tasted disgusting (and we were not allowed to add anything for flavor) so we made a game of drinking it.  I'm not ashamed to admit that we paid her, lol.  Dollar bills can be very motivating for a kid! lol

She became nauseous pretty quickly so the nurse had her lay on her side.  That wasn't very helpful and she ended up vomiting.  Quite a bit of vomit really.  But she continued drinking and apparently it didn't affect the test in any way.

I thought A would be freaked out by the noisy machine but she was fine.  She was supposed to be able to watch a movie but it wasn't working.  It was fine because I was able to sit near her and give her support when needed.

The glucagon wasn't pleasant.  Almost immediately she became very pale and shaky.  She vomited, pooped and peed right there in the machine.  They cleaned up the vomit the best they could but couldn't reposition her body.  She was mortified.

I hope your experience is a good one and that you get good results.  Definitely bring a change of clothes just in case and maybe some cash too, lol.


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## Jmrogers4

So I'm loading my purse up with dollar bills...  I talked to the hospital today and asked what they did if a kid was having trouble getting the barium done.  I asked about an NG tube but she had no idea she was going to ask one of the nurses but didn't get a call back but she did tell me that one of the kids thought it tasted like blueberries :yrolleyes:.  Jack knows he has to drink about 3 cups within in hour and he says he can do it.
I've warned him about glucagon and that it may make him feel awful for a bit.
And I think I'm coming down with a head cold - YUCK!


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## Mehita

Good luck! I really hope it all goes well!


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## Tesscorm

Good luck. Stephens usually fairly picky but he's had 3 MREs and hasn't had a problem drinking the contrast (did take his NG tube with him, had it ready to go but ended drinking most of it bcz he said it was okay).   He did feel nauseated after one MRE but was ok after another (hubby and him even went out to eat right afterward and then had a 4+ hour drive home and he was fine - we'd taken him to the US for that MRE). Hopefully, Jack will hv no problem.


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## Jmrogers4

He made it through and they said they got some good pictures.  He threw up twice, once while drinking the barium.  Had nearly made it through the first bottle but had tears in his eyes and said it really hurt.  The pain went away after he threw up and he was able to finish that bottle and didn't have to drink the second one.  

He threw up again when the gave him the glucagen.

Said the drink was the worst stuff he has ever had - way worse then scope prep.  He says the taste was indescribable. Tried to bribe him with money when he was struggling, he just looked at me and said I really don't care about money right now.:eek2:

So now we wait to see what the results are


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## crohnsinct

Ha...yeah he is a teen a few dollar bills aren't enough...you have to up the bribe.  Poor fella.  Glad he made it through and that they got the pics they needed.  Did they give you any idea of when they would discuss the findings with you?


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## Clash

Glad the icky is over and hope the results come back quickly!


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## Jmrogers4

Hoping since it's all through same hospital and they can all pull his file on their system that we get answers on monday


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## Mehita

Was thinking of you guys a lot today. Sounds like he was a trooper!


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## Jmrogers4

Dad was asking him about the MRI and he just told him that if Hell had a taste the contrast is what it would taste like - guess he figured out a way to describe it. :lol2:


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## Tesscorm

Poor guy, awful what these kids have to go through.   But, so glad it's over!!!!  Hope you get the results on Monday!


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## Farmwife

Jmrogers4 said:


> Dad was asking him about the MRI and he just told him that if *Hell had a taste the contrast is what it would taste like *- guess he figured out a way to describe it. :lol2:


:ylol:


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## Sascot

What a shame!  Glad it's all over and done with!  Hope the results don't take long.


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## kimmidwife

Glad he made it through. Hopefully you will get the results quickly.


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## Jmrogers4

No news is good news, right?  Haven't heard anything, sent an email off this morning asking if results from MRI were back and I haven't heard anything because results were fabulous. :smile:
Jack has had abdo pains every morning this week, won't eat or drink a shake in the morning because he says he feels like he is going to throw up.  I'm hoping it's just the stress of finals 2 more today, 1 tomorrow and he is done and Christmas vacation can start. :dusty:


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