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Can getting off a schedule cause symptoms

Jmrogers4

Jmrogers4

I'm hoping it is nothing and I have not jinxed anything but last couple of days Jack has complained of stomach pains and not eating muchHe hasn't had a BM in a couple of days but says he is not constipated.
He is down to 94lbs and certainly is now where near what he weighed a few months ago, he was at 100lbs last week when we did our weigh in.
I'm hoping it is the effects of summer and staying up too late and we are not heading in the wrong direction. He has his next GI appt on the 9th.
Sorry just stressing about it and hoping we have a much longer remission then just this few months.
 
my little penguin

my little penguin

Moderator
Staff member
Can you ask the Gi for a blood draw and fecal cal?
Especially if it continues.
I would say schedule but .....
Our past experience has been with those symptoms
Are typically not good at least for ds
 
Jmrogers4

Jmrogers4

He is scheduled for blood and FC for next appt. we usually have it done a week or two before appt so he has results at appt.
He is also getting ready to leave for camp so if he was feeling really bad he would most likely not tell me for fear he would not be able to go, so I'm going back and forth whether or not to call GI or give it a week and see. He is flying to camp with one of the other GI's at the office since he is going as one of the volunteers so I'm not really worried about him going to camp.
 
Clash

Clash

At 16, C doesn't have a schedule, not one that I would keep, anyway, haha. But, his has changed this summer since he is at his Dad's visiting and working. I've wondered if those two weeks that he had loose bms the day of the MTX were maybe due to the change in activity and schedule.

In our case, the symptoms have usually been the start of something. We do our fecal cal the same way. I understand not being concerned about camp, surrounded by IBD professionals, is definitely better than the waiting and wondering at home!! I hope he has a blast and this is all just a blip from summer activity!!!
 
Jmrogers4

Jmrogers4

6 pounds in 2 weeks Mehita, he was down to 98 last week and wasn't too concerned as he has gone up and down on those 2 lbs one week he will be 98 and the next 100 so 2 pounds last week and 4 this week.

Clash - what is it with teenage schedules??? He slept until 2:30pm on Friday!!! Went to bed at 1am. I was at work and he called me then and tells me I'm up, I was like "You just woke up?" I leave a list of chores to do before I get home and before he can play video games when I get home at 4:30 it doesn't leave a whole lot of time to get through the list and play videos.
 
Clash

Clash

I don't know, I worry at times that C's is IBD related because if you ask him about it he says I can't go to sleep but when he does go to sleep he can sleep til 1 or 2 the next day!! But then he is a teen and my non IBD daughter will sleep for hours on end, it is like her defense mechanism for boredom!!!
 
Jmrogers4

Jmrogers4

This teenage world is a whole new experience for me. I swear he could be practically fall asleep at 7pm but by the time 10pm roles around he is wide awake
 
Tesscorm

Tesscorm

Moderator
Staff member
Ugghh! I know how easy it is for the worry to build! :ghug: With Stephen, he has had days when he's had mild symptoms (loose BMs, tiredness, etc) but they have always resolved after 2-4 days. But, if Jack's don't seem to be improving or worsening, perhaps a call to GI would be a good idea.

Regardless, the camp sounds great and he cudnt be in better hands!!:D

And, sleeping... S is exactly the same!! Can easily sleep until 1 or 2 if I let him!
 
Clash

Clash

I am so glad you brought up this schedule thing Jmrogers and that you and Tesscorm gave those responses because I have been quietly worrying about this! Hopefully, this is a teenage thing and I'm just making up things to worry about!

Hoping for the best with Jack and a fun week at camp!!
 
Tesscorm

Tesscorm

Moderator
Staff member
Last summer, S was at home (part time job was in the evening) and I'd be at work... Don't know how many times I'd worry bcz I'd call home at 12 - no answer, 1 - no answer, 2 - maybe an answer!!! I think the latest he ever woke up was close to 3 (when I called AGAIN!)... I don't worry abt it anymore (at least not from a health perspective... What it implies abt his future... well... :yfaint:) :)
 
Clash

Clash

Hahaha!! I am right there with Tesscorm! I wonder how this sleep schedule works when he is off at college or has a full time job!

Like I said though, non IBD daughter was the same. Since starting college, I never know when to call due to her sleep schedule and she spends every Sunday in her pajamas...all day long!
 
DustyKat

DustyKat

Super Moderator
:eek2: Who knows with Sarah, out of sight, out of mind! Well that is what I tell myself any way. :lol:

As for Matt, well like your lot he marches to the beat of a different drum. (sigh) One day he can be up at sparrow fart and the next you are left wondering if he is just sleeping late or should you actually go in and see if he is still alive! ugh!

I wonder if it is the change of schedule too Jm and the excitement of the upcoming camp.
My kids are loss of appetite and weight type kids when it comes to stress, whether that be stress be good or bad.

I haven't said anything until now but over the past couple of weeks Matt has had stomach pain and some loss of appetite. For him it is the wind up of semester and exam time. His workload this semester has been huge, much more than I have liked, and I think it is taking its toll. He had bloods done a couple of weeks ago and all is good bar his CRP being ever so slightly raised but he also sustained quite a nasty ankle injury at soccer prior to the bloods being done so I don't know if that is feeding into it as well. I am biding my time until this coming week is over as that will finish everything up and I will reassess then. Mind you I do think as each piece of the semester finishes he is looking better. Fingers crossed!

I hope all is well with your lad Jm and he has a fab time at camp! :)

Dusty. xxx
 
Tesscorm

Tesscorm

Moderator
Staff member
Well, the good news is that S has been working at my office since Sept; part time till Jan and full-time since Feb. We hv to leave home by 730 am and don't get home till 6pm! Took him a while to get used to the schedule but he's now making 'adult' comments... 'There aren't enough hours in a day!:ymad:' ...:rof:

But, so funny... We get to parking lot by 8:30-8:40ish, he has to be in by 8:50... He sets the alarm on his phone and sleeps for the extra 5-10 minutes!!! :lol: I'm just waiting for the day he doesn't hear the alarm... :eek:
 
Jmrogers4

Jmrogers4

It just amazes me, this is the same kid who was always up by 7 and up and ready to go. I need time in the morning "to rise" and when he was younger he would bring me a cup of coffee in bed in the morning and ask if I could get up now.
Well I'm glad that it seems like at least the sleeping part is normal for teenagers.
 
Clash

Clash

Jmrogers, I know it is like you wake up and there is a different kid in the house! It is so strange. The upside has been in the past "living for Saturday" wasn't in my vocab since C was up with sun...now Saturday has a whole new meaning for me!!! A little extra sleep and a full cup of coffee in complete peace and quiet!!
 
Tesscorm

Tesscorm

Moderator
Staff member
I have read articles saying that teens really do have a naturally different sleep schedule. By chance, my kids' high school actually attempted to work with this 'different' schedule to try to match teens' "needs"! Their first class didn't start until 9:40 am! They were the envy of many of their friends who went to different schools that started btwn 730-9am. :)
 
Tesscorm

Tesscorm

Moderator
Staff member
Totally with you Clash!!! Love that I can sleep a bit more and still wake up to a quiet house!!!
 
Clash

Clash

Tesscorm, how long did it take S to adjust to the full time schedule? I'm just wondering when I should start to demand a decent bedtime in an effort to be on go when the new school year starts!

C was even off schedule during school this year at times and it was funny because his 9th grade english teacher raved about him to the 10th grade english teacher, he's so engaged in class room instruction and puts such effort into the in class essays...10th grade eng was 1st period and I think he was a disappointment since he basically zombied through!!
 
Tesscorm

Tesscorm

Moderator
Staff member
After he started full time, I wud say it took a good 3 weeks bfr he adjusted. At the beginning, I really did have concerns bcz he'd even go nap in the car at lunch!?! Who does that?!? :eek:

But, I quickly realized he was still just staying up too late! Even in bed, he'd be talking to friends on his computer or phone. Stephens a bit older than C so I didn't give S a 'bedtime', but gave lots of bedtime suggestions/reminders ;) and he eventually figured it out on his own. I think he still goes to bed way too late (12ish) but, being a night owl too, - do believe him when he says he just can't sleep.

But, u said preparing for school schedule... That never worked for me (at least as teens), I gave it a shot but really it was the 'tiredness' that the new Fall schedule wud bring that wud eventually shift Em's and Stephen's sleep schedules after a couple of weeks.

That first class 'zombie' - hated when my kids had a tough first class.. I knew it wud be even more difficult being at that time!
 
Dexky

Dexky

To save time...Ask Dusty!
Location
Kentucky
I think there may be something to the change in schedule theory. Here's hoping it's just that and things settle soon!
 
C

crohnsinct

Well-known member
Would someone give O the teen sleep memo?! These 5:00 a.m. warm up times for swimming absolutely suck! And when there isn't a meet 8:00 a.m. practice. What teen does that willingly? And Tess...I drop O at the pool and nap in the car in the lot until the meet actually starts!

can't wait for O to go to college...my younger one at 9 has already read and mastered the sleep memo!
 
M

momoftwinboys

How is jack feeling? Hope.he is doing better

Has his LDN dosing timing changed since school has let out? Perhaps that is out of whack
Are allergens high up there recently? MLP recently posted an article regarding allergies Just throwing out ideas...
 
C

crohnsinct

Well-known member
Did I read in another post that he was done with his appetite enhancing medication? I am wondering if thte end of that has anything to do with his lack of appetite and if he isn't eating well if that is contributing to hos fatique, weight loss and constipation etc?
 
Jmrogers4

Jmrogers4

He has stopped the periactin but it has been about a month so it defintely decreased then but has really done so the last week or so.
He seems to be feeling fine just a little off, nothing huge right now.
He still takes his LDN at 9:00 at night but since it works with natural endorphin releases maybe those are off since his sleep habits are off. I just don't know.
It could be anything, one thing or everything. And yes pollen is extremely high right now, I'll have to look into that more. Would taking a allergy pill work then to keep symptoms in check?
 
Jmrogers4

Jmrogers4

Thanks, he has never had bad allergies but I have noticed a lot more sneezing, runny nose going on and I'm usually pretty good in the spring I generally get more allergies in the fall but I've noticed some scratchy throat, sneezing when I'm outside as well.
Maybe I'll give him an antihistamine for a few days and see what happens.
 
my little penguin

my little penguin

Moderator
Staff member
Typically it takes about a week or so for the immune system to calm down
Once antihistamines are started.
Most have a half life of 4 days.
 
DustyKat

DustyKat

Super Moderator
Matt makes up for it by either eating a couple of very large meals or fitting all his meals into a smaller time frame. For example...he might have breakfast at say 1pm, then tea at 6pm and then another meal at 9pm. I let him set the pace and amount.

Matt is also very lean.

Dusty. xxx
 
upsetmom

upsetmom

Location
,
My daughter catches up as well.
She'll have breakfast then an hour later she'll have lunch.
 
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Jmrogers4

Jmrogers4

Kimberly,
That is one of the issues, Jack doesn't make up that meal, we nearly have to set alarms to remind him it is time to eat. He would go all day without eating and then eat a small dinner. Example yesterdays food: 2 hashbrowns at 1:30pm then dinner at 6pm 1/2 chicken breast with some ketchup and a popsicle about 10pm
 
C

crohnsinct

Well-known member
YIKES! I will never understand people who eat to live and don't live to eat.

Hope you get it sorted out quickly.
 
Mehita

Mehita

Are everyone's kids pretty slim and lean? DS is thin as well. Is this just the way IBD kids are and always will be?

I guess I'm fortunate in that as DS is finishing up breakfast he's already asking what's for lunch.
 
Jmrogers4

Jmrogers4

You and me both CIC, I'm thinking about what's for dinner at breakfast. His dad loves to cook and watches tons of cooking shows.
His brother is like the rest of your kids will not eat all day then will eat an entire pizza, bag of chips, carton of strawberries and an hour later eat 8 popsicles. He is thin as well but all muscle. I look at him and am just amazed at how much he eats, in comparison he got up at 12 at an entire pan of cinnamon rolls and 5 pieces of bacon, about 2 hours later he ate about 8 taquitos, for dinner he ate 2 chicken breasts, 1/2 a pot of mashed potatoes and a huge scoop of broccolli, 2 hours later he at a can of spaghettiO's and 1/2 a bag of cookies. (he just turned 12 in April), does it get worse? or is that normal teenage consumption?
I try not to compare as they are different kids but I can't help think that is what Jack is supposed to be like.
 
my little penguin

my little penguin

Moderator
Staff member
That is normal teen consumption
I have an 11 year old who does the same.

My Ibd 9 year would be extremely thin
But he still gets 3 peptamen jr a day - we up it to 4 or more if he hasn't wanted to eat .
He is at the 64% for weight up from the 25% a year ago.
Thanks to formula
He also lost 1-2kg in the past month so everyone is watching to see how things go
 
Jmrogers4

Jmrogers4

So what you are saying MLP is that if Jack was eating "normally" and not drinking the shakes (I upped him from 2 to 4 yesterday since he is not eating much) I would be paying the same $ in groceries?
Honestly I'd rather him eat me out of house and home instead of stressing about how much he is eating all the time. I just don't get how he can not feel hungry.
 
Clash

Clash

Jmrogers, so in Jack's situation, you think periactin gave him the appetite then? I've wondered about C and periactin since his appetite is already voracious what benefit periactin would have for him? When we up to more than a shake or two daily, he tends to eat less. I thought we'd see improvement in his weight though since the formulas have all the nutrition but it hasn't worked that way.
 
Tesscorm

Tesscorm

Moderator
Staff member
Jacqui,

Stephen's was like Jack up until the last couple of years or so. Yes, when we was flaring, prediagnosis, he did lose his appetite and lots weight. However, aside from that... from the time he began to eat, THE only meal he ever enjoyed and ate well were breakfast foods (eggs, bacon, etc.), otherwise a typical lunch could be 1/2 sandwich, maybe with a piece of fruit or cookie, dinner would be 1-2 chicken wings, tiny bit of rice and we'd hear... I'm full. (Mind you, then he'd sometimes have 2 bowls of cinnamon cereal before bed!) :eek: And he ate like that his entire life... it was a constant struggle. I always said food was simply 'fuel' for Stephen, he ate only enough to keep body going... And, yes, he was always very lean.

But, once he starting getting through puberty (so, 16, 17ish), his appetite increased quite a bit! He does eat for pleasure now (sometimes) :) but, I'd still say the majority of his food intake is 'fuel' - it's just that now his body size, activites, etc. demand more fuel.

Both my kids always seemed to 'snack' alot (ie after a sports game, school, bike riding, etc.) and would grab a granola bar or a couple of cookies, etc.... but, if I have leftover chicken or ribs or steak, they actually prefer and will eat that before they'll grab something else (just as is or in a sandwich). The challenge is to always have the leftovers in the fridge and easily accessible!

Oh, by the way, my daughter who's only a year older, ALWAYS ate 2 to 3 times the amount Stephen did... When they were younger, at the dinner table, it was always 'Stephen, you can't possibly be full!! You have to eat more! No, Em, you can't have what he's leaving! You've had two full plates already!! You'll be sick soon!' :lol:
 
Jmrogers4

Jmrogers4

I don't know Clash, we still have 1/2 a bottle and I think I will start him on them again and see if appetite increases. On the plus side it is an antihistimine, so if it is allergies which has been also suggested maybe that would help as well.

That makes sense Tess but it just doesn't seem like enough calories currently. He has only been drinking 2 shakes so just under 500 calories with maybe another 1000 calories from food. I told him last night he needs to start drinking 4 so we are at least closer to 2000 calories a day.
 
Clash

Clash

Jacqui, can you keep us updated on how adding the periactin back does(allergy and appetite wise)? I didn't know about the antihistimine/periactin that is interesting!!
 
Kimberly27

Kimberly27

Location
Mendocino County, Northern California
Reed doesn't make up the meal either. It's a struggle. Sometimes I'm envious of other people when they say their teen eats everything in the house. Reed's only 113 pounds and 17 years old. :(

We are gluten and dairy free. Is there a nutrition shake that is dairy free? Is that the EN food? Do these shakes have a lot of calories?

Thanks for all the advice. I've been off-line a lot lately writing my report cards and finishing the school year. I forgot how comforting it is to have a group of people who understand and can help. Thanks!

K.
 
Clash

Clash

Kimberly27, C will be 17 in Sept. and he does eat me out of house and home but his weight is set around 114-116. I do know what you mean though, you keep waiting for that time when they start to fill out and it just doesn't seem to be happening.
 
Johnnysmom

Johnnysmom

Just be aware that antihistamine can suppress his appetite. It makes mine go away completely.

Hope he adjusts quickly and gets that weight back!
 
Jmrogers4

Jmrogers4

The periactin which is an antihistime was originally prescribed because its side effect is increased appetite which we did see when he took it. He started taking 2 a day one in the evening and one in the morning when he started the shakes and because he gained so much weight and was doing so well GI had me drop to one a day and see if he maintained appetite for a month then quit completely and see if he maintained appetite, he has been off of them for about a month.
Kimberly - most of the shakes are lactose and gluten free, they are not dairy free though since I think they have milk proteins in them. I'm sure there are some that are dairy free as well. I'll see if I can find one.
 
Clash

Clash

So when GI docs discuss periactin, it is really an antihistimine that has the side effect of appetite enhancement? Do any of you guys know if the other med our GI has discussed Megace(sp?) is the same? The GI has brought up apetite enhancement before but mentions Megace more often than periactin, but if periactin has the added benefit for allergies I think I am leaning that way.
 
Jmrogers4

Jmrogers4

Clash looked up Megace
Megestrol tablets treat breast and uterine cancer. Megace® ES liquid is used to increase appetite and prevent weight loss in patients with AIDS.

I'm assuming it would be the Magace ES liquid they are talking about and it does say side effect is:
Adverse Reactions

Weight Gain

Weight gain is a frequent side effect of Megace. This gain has been associated with increased appetite and is not necessarily associated with fluid retention.

I would probably lean towards the periactin or cyproheptadine which is the generic myself as well if this is the same med your GI is talking about
 
Clash

Clash

Jacqui, yes and my hubby reminded me it wasn't actually our GI that mentioned megace but one of the PA's while he was hospitalized but if it comes to that to try to put some weight on I'm veering toward the periactin for sure, thanks so much for that!!!

I hope the periactin does it's thing and Jack's weight bounces back!!
 
Tesscorm

Tesscorm

Moderator
Staff member
Jacqui, is it possible that the shakes are causing him to feel full? I do think they can be filling, so if he's having one just a bit before meals, it could be affecting his appetite then???

Kimberly - There are some nutritional 'fruit' beverages that I'm pretty sure are dairy free - Boost has a fruit flavoured beverage that has most/all the same nutrients and a bit over 200 cal... there are others as well (ie not just from Boost).
 
ChampsMom

ChampsMom

Location
North East Coast - USA
My son has a pretty crazy schedule during the school year. Though he doesn't go to school, he goes to a scripture study class every morning from 6:00 am to 7:00 am. Then he has hockey practice typically from 9:15pm to 10:45 pm (during baseball it gets crazy, as he plays and umps, and does hockey clinics on the side)... So I let him sleep pretty much anytime he wants/needs as long as he keeps up with his school work, church responsibilities, etc.

Kimberly27 - for food - I don't typically worry about him sleeping through a meal, because he eats *all-day-long*. His GI was very firm about not doing 3 big meals, but to eat when hungry. Alex has taken that to heart and is rarely without some kind of food sitting in front of him (one of his favorite snacks is scooters - like honey cheerios? - he crunches on them all the time...) I'm curious - is your son on the teens forum? My son isn't yet, I haven't said much about it, as I wasn't sure what the forum was like... any idea?
 
upsetmom

upsetmom

Location
,
Kimberly27 said:
Reed doesn't make up the meal either. It's a struggle. Sometimes I'm envious of other people when they say their teen eats everything in the house.
K.
Click to expand...
Kimberly l know how you feel..:ghug:..... I have two opposites in my house. My daughter doesn't stop eating and then l have my 21 year old son who barley eats.
 
ChampsMom

ChampsMom

Location
North East Coast - USA
Kimberly27 said:
Reed doesn't make up the meal either. It's a struggle. Sometimes I'm envious of other people when they say their teen eats everything in the house. Reed's only 113 pounds and 17 years old. :(

We are gluten and dairy free. Is there a nutrition shake that is dairy free? Is that the EN food? Do these shakes have a lot of calories?
Click to expand...
Ugh... I loathe when I respond without realizing there is a page 2 to the thread... :ybatty: Sorry :(

Alex is dairy free (not gluten) - he makes himself a smoothie at least once a day. Could he mix one of the Boosts into some sort of "shake"?

Alex is also quite slim and has always been that way...
 
Jmrogers4

Jmrogers4

So he took a pericatin when he got up at noon today and by the time he ate lunch around 3 had 1/2 a box of mac & cheese and for dinner he ate an entire cheeseburger with double cheese and a huge plate of fries and snacked on cheese-its for the last hour. Yay! food.
 
Jmrogers4

Jmrogers4

Well he went poo last night! It was runny according to him. Maybe because he hadn't gone for several days? He fell asleep at 7:30 last night and is still asleep. Hoping all the late nights have just caught up to him and his body is just resetting itself and I can go back to living in my happy little bubble.
 
jmckinley

jmckinley

Glad to see that I am not the only one dealing with all of these issues. Ryan is tall, thin, and won't gain weight! He doesn't make up the meal if he sleeps late, so I feel like a nag.."go eat, go eat, go eat!!" He'd starve to death if he lived alone! ...And YES, a change in his sleep schedule messes him all up!
 
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