Tater Tot and LDN

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EEK! HAPPY 14TH BIRTHDAY JACK!!!

happybirthdayemoticon.gif


AND MEGA CONGRATS ON YOUR SCHOLASTIC ACHIEVEMENTS! WELL DONE!

So happy for you Mum and Jack. :):):)

Dusty. xxx
 
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.
 
Hope you had a fabulous birthday Jack!! :bdayparty:

Congratulations on your new school too! Fabulous news :D xxx
 
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!
 
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?
 
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
 
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
 
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 don't know but if it happens you need to record it on your phone and post it!!!!

Hope everything turns out good!!!
 
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.
Click to expand...

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!
 
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!
Click to expand...

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.
 
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
Click to expand...


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

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?
 
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!!!
 
Same here, I was told can to put it in the refrigerator overnight. With a big warning sign. DO NOT OPEN is not food.
 
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.
 
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.
 
Jmrogers4 said:
I think he would rather just be Jack instead of you know that kid that goes to the bathroom all the time.
Click to expand...

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
 
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.
 
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
 
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.
 
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 .
 
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.
 
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.
Click to expand...

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

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
 
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!
 
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:
 
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:
 
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!
 
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.
 
Remind me... what meds is he on?

I hope you get answers soon. Did any other labs come back?
 
Last edited:
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.
 
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
 
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.
 
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:
 
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
 
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)
 
: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:
 
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.
 
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.
 
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?
 
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.
 
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!
 
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!!
 
Sorry, Tesscorm, once again I wasn't quick enough and our post mirror each other but I do agree about the MRE!
 
Great minds think alike! ;) (That's why I'd like to skype you guys into all Stephen's GI appointments! :ylol2:)
 
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...
 
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 :)
 
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.
 
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.
 
Tell him a family in MN is thinking of him and hoping he feels better soon. Hang in there, mom!
 
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.
 
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!
 
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
 
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.
 
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!!
 
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
 
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
 
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!
 
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.
 
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
 
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.
 
I'm so glad to hear that he is feeling better and his appetite is returning!! Long may it continue!!
 

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