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Heard from Doc today

C

crohnsinct

Well-known member
Happy: I know right?! That is why I was shocked. She did ask us to limit it to iceberg as it is mostly water but still...I am limiting it until Wednesday.

JMK: Thanks..pushing everything else out..interesting...hmmm
 
Tesscorm

Tesscorm

Moderator
Staff member
I hope the mucus and D symptoms go away quickly - hopefully, just a result of the heat, swim meet, new foods, etc.

How many calories is she still getting from shakes? Since Stephen's been on maintenance EN, he has taken in 1500 cal/night x 5 nights/week TOGETHER WITH a very typically-sized diet for a teen boy (i.e. usually skips breakfast as he's full when he wakes but makes up for it with a late night snack). The first three months (6 weeks exclusive EN and next 6 weeks) took him right back to his pre-sickness healthy weight (plus some) and he has stayed there. I've often meant to ask why the extra 1500 cal aren't causing him to gain extra weight, but then I've always forgotten to ask. :redface:

Also, you know exercise definitely plays a part... Stephen's gained approx 5-7 pounds in the last 3 months - pretty much since his hockey seasons have ended. I don't know 'swimming' but it seems that you've mention lots of 'meets', is this 'competition season'? Did extra trainings or higher intensity trainings coincide with pred tapering, etc. (... kind of responding to your other 'pred' thread too...:))
 
C

crohnsinct

Well-known member
Thanks Tess. I really do think the d is a result of food reintroduction. Can't much explain the mucus and blood but it has been minimal compared to in the past so I am not too concerned.

As for calories from formula...at exclusive she got max 1,500 from formula and that was all she had!!! Now with food and reduced formula she gets about 1,200 from formula and the rest food but "the committee" has always suspected she wasn't getting enough calories.

I still think she is not getting enough calories. Swimming is a very calorie burning workout and they are just now beginning their taper to get ready for championships so she is definitely not getting enough. With all the added food she is choking down the shakes the best she can. I don't want to make her so sick of them in case we have to do exclusive again in the future but....guess this is where the ng tube would come in handy but our doc hasn't mentioned it since the first discussion of EN back in April.

I can't judge based on pre dx weight as she was woefully underweight pre dx also and is now 10 pounds up but still they want another at least another 5 pounds on her. Swimming ends in two weeks (later if she makes states but not likely:( She has the whole month of August off so here's hoping we bulk her up so she has some cushion for loss once the fall season starts up.
 
AZMOM

AZMOM

Moderator
Not to throw cold water on improvements but undifrsted food means its flying through due to inflammation. When Claire was at her vey worst she could poop out food within an hour of eating. I remember vividly milk going in and coming out white.

Hopefully she just wasn't quite ready for the roughage. I agree chew chew chew chew when she tries it again.

Hugs -

J
 
Tesscorm

Tesscorm

Moderator
Staff member
Crohnsinct,

I could be wrong but I think some of the formulas have 'concentrated' versions which may have a higher calorie count... ie, I know there is a Peptamen and Peptamen 1.5 - perhaps you can try replacing one or two of her shakes with the concentrated versions??? She won't have to drink more but might help a bit with the weight gain.

:)
 
jmckinley

jmckinley

Tess,

You are right. There are different formulations. Ryan drinks Boost Kid Essentials. The 1.0 has 240 calories and the 1.5 has 360 calories. He drinks a combination of the two each day because the 1.5 is very thick. He got sick when he was drinking only 1.5s.
 
C

crohnsinct

Well-known member
Wow made it to second page and here I am dredging it up again.

O continued to bleed all the way up to infusion and had looser and weirder bm's. BUT GOOD NEWS...her labs are back and everything looks good, even her Remicade levels are a.o.k. (5 week schedule) and after infusion results in the bathroom are back on track...I guess she will just be a bit of a bleeder from time to time.

We are going to relax and enjoy the summer and next time things get bad again hop back on to EN because it definitely seems to have done the trick.

Oh and she is on full food now with a shake or two a day to help keep her weight on.

Oh and she has her final swim meet this weekend and it is the first one all season that is at the beginning end of the Remicade cycle so here's hoping....
 
Tesscorm

Tesscorm

Moderator
Staff member
Woohoo to the regular diet!!! :banana: And, good luck at the meet! Hoping its her best time ever! :panda:
 
Clash

Clash

:thumright: Loving the blood work results!!! Tell O good luck at the swim meet and enjoy this sweet summer time!!:banana::banana:
 
DustyKat

DustyKat

Super Moderator
I hope O has a fab Summer hun and is able to enjoy a full diet one!


Good luck with the swimming!


Dusty. :sun:
 
Farmwife

Farmwife

I'm not going to lie.....................................:shifty:
I'm nervus.................................................:shifty:
Real nervus................................................:shifty:
Where did our crihnsinct go.........................
I keep checking the news to see if some horrible lady in Florida freak out on her family:voodoo: and now she's on the run!
That must be it........ you got caught.................your in prision.................but their's hope.:dance:
You just have to buddy up to the guard and he'll let you e-mail us.

I don't know what else could it be??????????????:wink:


I hope you having a wonderful time on your vacation!:D
 
C

crohnsinct

Well-known member
Aw Farmwife You like me...you really like me!

Just got caught up enjoying my family, the sun and apparantly the food! Gained almost 8 pounds:ywow:

I am back now and will get caught up on threads tomorrow so consider yourself forewarned:hallo3:
 
C

crohnsinct

Well-known member
O had her appointment today and thought I would hop on and update her diary...oops I mean thread:shifty-t:

She had a great summer with only one blip. She hasn't run all summer and stopped swimming for the month of August. Blood counts are all O.K. and she gained 1.5 pounds since mid June.

Doc was pleased and cut her Prevacid in half. We are continuing on Remicade every 5 weeks at max dosage and if a flare occurs jumping back on EN.

He did a bit of hmm'ing around growth and development. She turns 13 in September and still little signs of puberty. There was a sharp increase in her weight curve since dx but less movement in height and still lower on the general curve given her parents and sisters' heights but he doesn't think it is due to Crohns and says he is anxious to see what puberty will bring.

Big pat on the back and see you in 3 months! That is now the longest we have gone. I am curious to see how things go once she is back to her full track and swim training but we are still happy dancing here :dance::dance::dance:
 
Clash

Clash

haha I was just pm'ing you about the appt!! I am happy dancing right along with you:dance::dance::dance: She has been through so much I am so glad O seems to be on even keel now! Hopefully when track and swim starts she will be rested up and ready to go and we will all be warding off any ickies:voodoo::voodoo::voodoo:!!!

Yay O!
 
Tesscorm

Tesscorm

Moderator
Staff member
:banana: Great news!!!! :banana:

I'm sure puberty will kick in soon with a VENGEANCE! Look out mama!! :lol: You'll soon have your hands full! :facepalm:

When do her track and swimming begin again? Is she going to stay on her shakes as 'maintenance'?
 
Sascot

Sascot

That's great news :sheep:. Never used a jumping sheep before - but it looked happy so there you go! Glad things are going well.
 
C

crohnsinct

Well-known member
Swim starts next Tuesday but she has oral surgery to remove two baby molars that never fell out and the adult ones are growing in out the side of her gums...come to think of it I wonder if the baby teeth not coming out has anything to do with Crohns...but then again don't we wonder that about every little thing?

Anyway, if oral surgeon says it is O.K. she will be back to swimming next Wednesday..she can't wait. Nervous as she is moving into the seniors category and practice group. New group, new coach, new distances, events etc and she looks sooo small compared to the others. As you know she adored her old coach but I am sure these new coaches will be great for her as well.

Cross country starts mid September.

Yes maintenance shakes!!!!
 
Clash

Clash

So are there any precautions, procedures etc. when it was decided she would need to have those baby teeth removed? I'm just asking because I remember something about dental work, CD, remicade but not the specifics and C needs some work done wonder if it something I need to mention to GI or will he just look at me like I'm insane because I dreamed the connection between dental work and CD/Remicade?

Yes, crohnsinct....I know I am insane but I haven't completely let that cat out of the bag with the GI....yet!
 
C

crohnsinct

Well-known member
LMAO! Remember I PM'd you when this all came up at dentist back in July...You aren't insance just suffering from dementia.

Yes! The oral surgeon said we had to check with GI because of risk of infection because of immune suppressing properties of Remicade. He said that some oral infections can (very rarely) go to the heart and that I needed to clear scheduling with GI. GI said as long as it is two weeks after infusion the drug would be at a low enough level her wouldn't be concerned and that the risk of "that" terrible infection is very, very low...where have I heard that before??????
 
Clash

Clash

Ok Ok I knew I had heard that but July was so long ago and bits of my brain have been falling out for years!!!
Thanks, ohhh this next GI visit is just going to be chock full of fun...he may ask just the Hubby to come next time:shifty-t:
 
jmckinley

jmckinley

Great news! Go O! So glad things are going well! Once she starts swimming and running, her appetite should pick up and she will take off! I am impressed and so happy that she stays so active! Funny about the teeth. Ryan has teeth issues too. He is missing some adult teeth. They just didn't develop. Now we have to go through this whole implant thing to fill the gaps.

Clash, I know Ryan has to have some ear surgery. His GI and ENT decided that Ryan needed to be 3-4 weeks past remicade infusion and at least a month off prednisone before surgery. Every doc's gonna be different, I am learning!
 
C

crohnsinct

Well-known member
Thanks. Yes every doc, every surgery, every patient, every drug and so on is different. For some more serious surgeries I have heard stop Remicade all together :eek2:
 
kimmidwife

kimmidwife

Firstly, glad to hear the good news about her doing so well! There is a connection between issues with teeth and crohns. There is a thread about it somewhere. About the puberty issue crohns can cause delayed puberty and delayed growth. Look at when other girls in the family hit puberty to know when she should have normally hit it and assume she will be at least six months to one year behind. Caitlyn lost about three inches of height that she probably would have had if not sick according to her doctor. Her crohns hit right around the beginning of puberty at age eleven. Remember also that puberty is a process that occurs In phases over about a three year time period.
 
C

crohnsinct

Well-known member
kimmidwife: Well her younger sister (just turning 9) has precoscious puberty and is already wearing a bigger bra, has more hair, weighs more and is almost as tall and I am told will get her first period any day now so O is about 4 years behind her. Older sister got it at 11 so only 2 years behind her...poor pumpkin...all her friends moan about it and she can't wait...can't wait to get a "real" bra either...I am still waiting....

I am sure all her athletics doesn't help.
 
C

crohnsinct

Well-known member
Yeah that is what I was thinking but senility has set in and I can't remember if I was 12 or 13...either way not too far off from where she is now so I am not panicking. Also my mother was very small and got hers late.
 
kimmidwife

kimmidwife

I would say to expect her to be at least one year behind you due to the crohns so figure about fourteen.
To upsetmom, if she does not get her cycle by sixteen it should be checked out with an OB/GYN doctor. Sixteen is considered the latest age and still with in the normal range, even though we know there are other variables at play here if she doesn't get it by then I would have it investigated.
 
DustyKat

DustyKat

Super Moderator
Sarah didn't go through puberty until she was 15, it was the post surgery remission that kicked it off. Prior to that she didn't even look like anything was going to happen. She was two years behind me.

Dusty. xxx
 
C

crohnsinct

Well-known member
ERGH! O mad at me today. First day of school. I filled out the intramural participation form and there was a question:

"Any illness or injury that might prevent your child from participating"

I debated listing Crohns. Afterall, it hasn't interfered really yet. Worse case she misses a practice or meet because she doesn't feel well but heck that can happen to anyone on the team who gets the darn flu. But then the honest me took over and I listed Crohns. She was soooo mad. She sees things my way but I said God forbid something happen to you out there they should know or what if they find out and I didn't list it they can bounce you for dishonesty. She is afraid they won't take her on the team now as they are cutting kids because there are too many. New coach...she doesn't have track record with him AND she hasn't run so won't get her old times. I know they can't discriminate but come on....

So I added...dx 1/31/11, wasn't a problem in spring (haha unless you count slow times) closely watched by doc.

Dang! I hope I didn't screw things up for her but really what a stupid question to ask. You want to know if kids can handle a sport ask for a physical by a doc...stupid, stupid, stupid! And it is only the first day of school...can't wait for T's IEP meeting when they tell me they are dropping her services.:kissgrits:
 
Tesscorm

Tesscorm

Moderator
Staff member
Sometimes you just can't win! I would have done the same thing, with the same misgivings. :(

But, I wonder if crohn's is really something that needs to be noted on these types of forms when it's under control??? I can see how having high blood pressure, arthritis, perhaps diabetes (with sugar/insulin levels) could be directly affected by participating in strenuous activities but I wonder if Crohn's falls into the same 'category'. When crohn's is under control (not even necessarily in full remission), it won't be directly affected because of an activity; crohn's may cause you to miss a practice or event but anyone may miss a practice or so due to 'typical' illnesses like the flu. :confused2:

IDK... but, as I said, I have done the same as you and responded that Stephen has Crohns whenever it's been asked.

In any case, I hope she makes the team!!!!
 
jmckinley

jmckinley

I would have done the same also. I have always listed Ryan's condition on forms.I hate announcing it to everyone, but I want others to watch out for him. Teachers/coaches are often our first report that something doesn't seem right with our kids. They see them much more than we do during the school year!

If it helps, have the GI send a letter that states that her condition doesn't affect her ability to participate. Can't hurt....
 
DustyKat

DustyKat

Super Moderator
Hey crohnsinct,

In the past, kids no longer at school, I have gone both ways with this. Each time it has presented itself i have weighed up what the request was for and decided that way. For example, a school excursion that lasts for one day and involving activities that would present no problem to my child then I say no. However, if the question also asks for a list of medications then I will always answer that my child has Crohn's and list the meds.

I don't know what intramural is but I assume it is an ongoing thing? If so I would disclose that they have Crohn's and also explain their current status and medications.

I so hear where you are coming from hun and I would hope more than anything that the team is chosen on their performance and dedication and nothing else. On the other side of the coin though, as a coach or teacher I would want to know if one of my students had an underlying medical condition. Not as a way of influencing my decisions but just in case anything untoward was to happen medically/physically. I have certainly been where you are now, at the receiving end of the wrath and the only thing I could do or say was to explain that they had a right to know because they have a duty of care towards you as a student.

Dusty. xxx
 
my little penguin

my little penguin

Moderator
Staff member
We list is so - a the coach knows why he is not up to his usual and b does not think he is "faking" it if he says he needs to rest since his stomach hurts.
 
C

crohnsinct

Well-known member
You are sweet to ask. O is great. She has been moved up to the senior group. Not because she has the times but because she is 13. Practices are harder and longer but she is loving it. She loves the coaches and coaches love her. The water is cold though. The bubble goes up this weekend.

Yes, it is the parents...you know all the stories I am sure :yrolleyes:
 
Catherine

Catherine

Moderator
I forget some club base groups on age. Sarah group ranges in age from 20 to 11 and based on time only.

800 free under 12 mins
400 IM under 6:40

Some parents are a pain.
 
Tesscorm

Tesscorm

Moderator
Staff member
I guess you get those parents EVERYWHERE! :ymad: We've had our share in soccer and hockey!

Just gotta try to ignore them (rather than strangle them! :lol:)
 
C

crohnsinct

Well-known member
Catherine: We do times also. Within seniors there are 3 practice groups...plain old seniors, then pre national squad then national squad (which is where the Olympic trial swimmers practice). But even though O is 13 and has to move to seniors and is in the lowest group her times are still far behind everyone else's and believe you me parents make sure I know it. This is why I usually don't go in...it is a lions den in that lobby.
Can you believe one parent actually asked how long we were going to milk the Crohns excuse...well lets see probably for life because it ain't going nowhere!!!!!

Tess: FUNNY!
 
Tesscorm

Tesscorm

Moderator
Staff member
OMG, I can't believe a parent said that!!! That ONE I hope you strangled! :lol:

Last year, S was diagnosed in May and, while he got back to hockey really quickly, it took months for him to really rebuild his muscular strength and endurance. He started off the season a bit slow and we heard comments as well that S wasn't playing 'like last year' (granted, some may not have known about the crohns). :ymad: Thankfully, his coaches didn't care and played him as they always did and he ended up having a great year! But, OMG, we've had some really, really pathetic parents on the kids' teams!
 
Suzysu

Suzysu

Seriously - I just can't believe that another parent could be so mean and ignorant. I guess I have all the fun of dealing with these people as my kids get older!! - you guys must have thick skin - I'm not sure I could take it!! :)
 
Sascot

Sascot

Have to agree - never quite know what to put on medical forms for school trips, clubs etc. You must know our role as parents is to never quite get it right in the eyes of our children? ;)
Thankfully we've never had negative comments from any other parents on Andrew's football team. However I think seeing him carry on playing with the NG tube in made them think well of him!
 
C

crohnsinct

Well-known member
Well it was a dad who said it and the way he said it you would think I was in there crying all the time about Crohns...so not the case. Like I said, I avoid the lobby like the plague. I sit in the car and read with my little one or go market shopping, to the library, to Dunkin Donuts to check on the forum etc. It was just that he made some snide remark about her being slow and I said, "well we are just glad she can swim" he wouldn't leave it alone and I quoted Catherine's doc saying, "well I have heard that it can take up to 12 months to get your conditioning back" and Bam he hit me with that comment. I really wanted to let him have it but instead just abruptly ended the conversation, turned on my heels and left. Some people aren't worth the effort.

There is a coaches meeting with all the parents tonight. I sent my husband because I don't think I am ready to face that guy again.

But have to say while there are a fair amount of competitive psycho parents most have been kind about O's Crohns.
 
Sascot

Sascot

Don't blame you! Doesn't sound like the kind of guy who would ever change his point of view.
I like that going to Dunkin Donuts to check the forum! Put on a pound for every thread??
 
Clash

Clash

Crohninct, you're my hero! You showed so much restraint, I don't know that I would've been able to walk away even though I'm well aware that with those types you are only stoking the fire to fire back at them! You go girl!
 
Tesscorm

Tesscorm

Moderator
Staff member
Some of these parents are absolutely crazy - I don't know what happens to them at the rink/field/pool/etc. I actually thought my husband was going to hit a mother on the opposite team a few years ago! :eek: Stephen had gotten hit, he'd been hit many times before but very rarely stayed down but, this one time, he just wasn't getting up. The coach and trainer were with him and he was still not moving, and this other mother was still cheering the hit and yelling 'great hit', 'let's do it again', 'that's how to play' !!! :eek: And then, when my husband told her 'a kid was down and she should shut up', she came over to our side, up to his face and challenged him to make her shut up!!! OMG, I seriously thought he was going to take her up on it! :eek: I think that was probably the worst parent but.. there were some other close runners up! :facepalm:
 
Catherine

Catherine

Moderator
We actually get those type of comments regarding middle daughter, who is a very slow swimmer compare to other swimmer her age at club but the kids at her school believe her a very goods swimmer.

Very long time ago before crohn ever come in my life. We had a coach tell us that they like the slower maturing girls as the would make the better swimmers in the long run.

Parents like this dad give children sport a bad name. Swimming is about doing your best and beating your own times.

Only the crohn's family know what the children/teenagers have gone through just to back swimming, it is an achievement in itself.

Are O post crohn's times improving? Is she happy?

For a bit a fun your can check my rosacea & ibs & colonscopy thread under the my story section and give your opinion. Add your advice, currently going at me no for colonscopy and 4 saying yes.
 
DustyKat

DustyKat

Super Moderator
Ah hell! Now I am shamefaced! :redface:

Where the hell did you all get your restraint from! Or is it good manners?!?! Now I am even more shamefaced!!! :redface::redface::redface:

I usually say F*&^ off and then walk away! :rof:

Embarrassed Dusty. :eek:
 
C

crohnsinct

Well-known member
Just updating the diary...

O is up over the 80 pounds the doc wanted to see her at before he would leave her alone...she is 82!

She had a swim meet the day before the hurricane and bested 3 out of 3 times and a few by a lot.

She recently bleed for a day and had a few other small things that made me say hmmm (clearly a blip though...read on).

This weekend she had a three day meet with an extremely tough line up of events. The dear heart bested 7 out of 7 times and some events took gobs of time off managing to qualify for the first level of championships in a very long time. In some events, her best times date back to 2009!!!! Better than the times was how she looked. She finally looked like she wasn't struggling. She had fire in her eyes trying to catch (and often passing) the leaders in her heats. We haven't seen that in a long time. We are so proud that during the tough times she still plugged away at practice and meets with very little payoff. She now understands that it was that hard work that put her in this position now. She told us at lunch that Crohns took so much from her for so long that she is taking it back bit by bit.

I know only you guys can understand this but I finally feel like I can exhale!
 
Suzysu

Suzysu

:dance::dance::dance::dance::rosette1:

YAY!!!!!!!!!!!!!!

What a fantastic post!! well done o and well done mum!! - I really am so pleased for all of you!! xxxx
 
DustyKat

DustyKat

Super Moderator
YEEHAW!!! What a fab update crohnsinct!!! :mademyday:

I so hope things keep heading in this direction for O, bless her...:hug:

You need to exhale hun before you burst with pride! :):):):):):)...and why wouldn't you, what a champion! :medal1:

Dusty. xxx
 
Farmwife

Farmwife

So good to hear some good news.:thumright:
O should be very proud and .......:medal1:
you should feel proud you did a good job raising a fine young lady.:heart:
 
Tesscorm

Tesscorm

Moderator
Staff member
What a GREAT post!!! :banana: I loved reading it!!!

She's not only going to take back, bit by bit, what Crohns took... I have no doubt she'll far surpass even her own expectations!! YOU GO GIRL!!! :thumright: :D :thumleft:
 
C

crohnsinct

Well-known member
So back to doc today for our regular follow up and he is thrilled. O is up 5 pounds since 8/28 and he says grew an inch and a half (not really they made a mistake at the last appointment as ped measured her two weeks later an inch taller but still a gain in height so I am good).

Her blood work from two weeks ago is fantastic.

I mentioned the bit of bleeding and fatigue that has been happening and basically said blood not concerning him and fatigue absent declining blood results or other symptoms is not concerning. He will however add some extra testing to her 12/31 infusion but doesn't expect to find anything. He says her body is using a lot of energy to catch up on growth and given her athletic pursuits she isn't giving it enough rest.

Staying on 5 week Remi schedule at max dose and going back in April.

Today is a very good IBD day!!!!! :ycool:
 
muppet

muppet

Well, I think he may be onto something with all the athleticism competing with healing in her body. I think I proposed that quack theory to you before.

I'm not too thrilled, as you have already imagined, with his comfort level regarding her bleeding and lethargy while on Remicade, BUT if she's only two weeks out from an infusion it stands to reason that her symptoms might get a little louder about now. Did he say anything about modulating her dose?
 
C

crohnsinct

Well-known member
She is at the max dose and shortest schedule he is comfortable with. She just metabolizes the Remicade too quickly (most kids do). She is at the max adult dose and 5 weeks. If this didn't work we would probably be adding another med or hitting a flare with EN.
 
muppet

muppet

Wow. EN would probably sock her in the athletic sense, too. I can't imagine it's exactly triathlete fuel.

What about adding 6MP to the Remi to get her over the gaps? It's kind of a scary option, maybe that's why he's avoiding it as long as her inflammation is low? Is she due for a scope anytime soon?
 
C

crohnsinct

Well-known member
She did EN back in spring into summer and it was great. Got her to where she is now.

He actually doesn't believe there is inflammation and she really does seem to be doing very well. Just those few bits of blood and fatigue but fatigue could be a thousand different things.

Ya know I fully expected him to say, we are coming up on a year post dx and she is doing so great...let's scope to confirm remission but he didn't. I think he probably wants to wait for a year from when she really started turning the corner which would be June/July...fine by me no need to miss school then. Either way, I am watching her and her swimming like a hawk and will call if anything seems off but for now she is good...just tired.
 
Patricia56

Patricia56

Location
Northern California, USA
I know of more than one adult that is on triple remicade every 4 weeks.

I think she needs to cut back on her training schedule if possible to see if it makes a difference.

Sometimes we have to find a middle ground between what our bodies will do and what we want them to do. If doing her athletics is going to wreck her intestines obviously that's not ideal. I realize giving up sports isn't ideal either.

It seems to me that if you don't want to go up on meds then you have to look at what else you can manipulate.

Biggest thing is the training/sport intensity. And she may find that being able to do things without fighting fatigue all the time is a worthwhile tradeoff. But she is unlikely to see it that way herself and you may have to get parental about declaring a short term break or reduction in training.

And based on our experience, blood means there is some inflammation. May not be much but there is some. Some is not the same as NONE. and None is what we are aiming for.

As for good labs, that's great that you have them. Are they meaningful? For my son they would not tell you whether he had low to moderate inflammation. Don't know about your kiddo.

Life is just the pits sometimes.
 
muppet

muppet

It really does sound like she's doing fine. With Sarah I used to not sweat the occasional bit of bleeding, but in more recent years it's almost always been a hallmark of a broken remission for her. Still, for practically a decade, it was not.

While I'm no fan of your GI, it does sound like you can relax a little on this issue and focus on other stuff for a bit.
 
my little penguin

my little penguin

Moderator
Staff member
Yippee!! For a good appt.
Cautiously optimistic since she does have fatigue even with normal bloods .
For DS it means the remicade is wearing off.
Did they draw trough levels?
To see where she is at when the symptoms start and prior to the infusion.
That is our next step .
Good luck
 
C

crohnsinct

Well-known member
Patricia: Gulp...she already stopped running right after the hurricane and that is when the fatigue started:shifty:. Haha..her 13 year old rationale...I am not doing enough...my body needs more exercise:redface: Like I said she is doing well and not tanking and blood drawn every 5 weeks so like MLP said cautiously optimistic (read as watching her like a hawk).

MLP: are trough levels the Remi level tests? If so, yes, they did them at every infusion until they finally got it right...They kept finding no Remi in her system. We finally got good Remi levels in July and August and stopped testing and decided to go on symptoms.

He said he is adding an iron panel to the next testing and some other tests to see if she had some sort of illness that hasn't taken her totally down that maybe she was fighting.
 
my little penguin

my little penguin

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Staff member
Yep - remi levels but since she is having fatigue
Our Gi plan is once we see symptoms start to check the level and then at the infusion so we can see what level cause symptoms and what level he is at before the next infusion.
Since the fatigue I assume is new -
Then knowing the levels could tell you if things had changed with her system since August .
It could also be an early warning whether things need to change in the future kwim .
Hope that makes sense.
 
Sascot

Sascot

Yay for O doing so well. Long may it continue. I'm sure it's probably just hormones causing the tiredness - keep that bubble!
 
imaboveitall

imaboveitall

Hey paisana,
I suspect her fatigue is from nutritional deficit.
Please don't take this wrong, but I have never thought that active girl was getting enough ABSORBABLE cals.
Recall V needed 3000+ cals when she was as skinny as O was, to gain and grow. She gained 40lbs in 3mos, not 5 in as many. That was the 20 she'd lost plus 20 more. And 2.5in in height. In THREE MONTHS and WITH active inflammation. She is now 64.5in, she was 55in at dx in Sept 2008.

When O was on EN she was getting far less cals than I felt she needed to come back from such a malnourished, underdeveloped state.
I also feel Boost isn't as well absorbed as the peptide formulas or amino acid based. The Saint agrees.
You have nothing at all to lose by giving her 1500cals of broken down, bioavailable nutrition via formula daily.
I'd do that and see what happens.

Much love, I have never been able to read about O on here without wanting to up her cals. :heart:
 
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my little penguin

my little penguin

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Staff member
Tend to agree about the formula.
DS gained 20 lbs . As of now grew 2.5 inches since August .
He still drinks two peptamen jr a day - 3 when he was swimming plus food.
They may help and worth a try .
 
C

crohnsinct

Well-known member
Julie - now you sound like my MIL:ywow: Yeah I know what you are saying. We tried to keep the shakes in but that only lasted so long. I have begged and pleaded her to drink at least one as her post workout recovery snack but she won't touch them anymore. Maybe I will try ovaltine or CIB.

She has gained a total of almost 20 pounds since dx though (gosh coming up aon a year)...does that make you feel any better? And finally on the charts!
 
C

crohnsinct

Well-known member
She was dx'd with milk allergy as an infant so we cut dairy out. Then when she was three they told us to add it back in and she hated it. She eats very little of it but has started to try to eat more at the urging of the nutritionist for bone health. Interesting. I will have to keep an eye on that.
 
my little penguin

my little penguin

Moderator
Staff member
Ok not to be that mom- but if it was her remicade or other meds that she refused to touch.
DS knows his Gi prescribed the peptamen as foul as they taste . He aslo knows they are meds period. We do not negotiate meds.
Doc prescribes end of story.

Is she allowed ice cream for dinner or allowed to stay out at a party all night or ride without a seatbelt ?
You get the idea .
Something's we let out kids chose and control a drink when prescribed by a doc proven to help their Ibd is a med.
It took DS hours for the first 8 oz and a week or more of tears for the rest but ...
If I say drink 10 minutes later the 8 foul Oz are gone no tube required .

Ovaltine or cib are not broken down enough .
For as hard as she is training age needs the good stuff .
DS is almost back to his original weight % and hopefully will have his height catch up soon .
One study said Ibd kids need a higher bmi close to 18 so when they flare it causes them less issues nutritionally
I think dusty posted it in a booklet from her Gi .

Ok I am off my soapbox now- don't hate me
 
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